What to expect when you start Dialysis

I’ve had several posts and emails this week from people new to the BigD, wondering what to expect and how to deal with it when the time comes to join the BigD Club as an active member.

Starting on dialysis is always traumatic.

Firstly because you are not well. As your kidneys gradually fail, you feel progressively lousier, weaker and more miserable. You are in a fog and often don’t realise how unwell you are. Decisions don’t come easy.

Secondly, because you dread dialysis more than you should. From the moment your doctor mentioned it, you have fought it. Over the months or years since then it has become a big bad deal in your mind: needles, pain, failure, precious time taken from you.

So, what’s the reality?

You’ll feel better and brighter. Often after the first run. This is not surprising, since the artificial kidney has removed the bulk of the toxins and waste products that were making you feel like crap. What is surprising, is just how much better. You can think. You may even feel a little jolly; your body is just so relieved.

It actually doesn’t hurt that much, it just looks like it should. The needles are big and they do go into your arm, but since most units use local anaesthetic and the nurses are usually gun needlers; they don’t hurt. It only takes a few seconds. To begin with, just look away.

As far as time goes, well, if you dialyse three times a week, four hours a time, plus around 40 minutes each side (about 30 minutes to get there, 10 minutes to get hooked up, 10 minutes to disconnect and 30 minutes to get home), that’s as close as damn it to 18 hours a week. My doctor used to say it’s the equivalent of a part-time job (one where you can’t call in sick!).

But I don’t think that’s the way to look at it. He’s right in that it’s a firm commitment, but when you go to a job, your time is not your own. When you go to the BigD Club, it’s all about you. At first, you may feel like just sitting and sleeping, but after a few months, your body will bounce back and look for more interesting activities.

It’s an fascinating thing: Many studies have found that people rarely change from who they are. If an obnoxious, sleazy shyster wins the lottery, he may become generous for a while, but eventually he reverts to his obnoxious, sleazy, shysterous-but-rich self. And if a happy-go-lucky person loses both legs, she may be miserable for a while, but she eventually becomes a happy-go-lucky person with no legs.

Rest assured it’s the same with dialysis. It will take you a few months to get used to it, but you will. And as you do, and you’ll find a way make it part of you.

In short, expect to be pleasantly surprised: the pain is minimal and you’ll feel pretty darn good; and deal with it the way you deal with all the other obstacles in your life, one day at a time.

Finally, remember that it is a Club. Every member has been through exactly what you are going through and we are usually very happy to help, advise and listen.

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183 thoughts on “What to expect when you start Dialysis

  1. Hi,
    My husband and I have been fighting him going on dialysis for over 8 years now. Unfortunately it seems his time is up. We(more me than him) have been so upset because of all the unknowns.
    I was so glad to find your page, it really is so positive. You wouldn’t believe what horror stories we’ve heard from “friends”. Thank you

  2. I googled…”what to expect when I go on dialysis” and read an artical before yours telling me my chances of dying in the first 14 months is 50-50. That really uplifted me. I am a nervous wreck first dragging my feet for two years and now, when here is no other way having to choose which dialysis to use. Choices are meaningless at this point.

    • Brian, for some reason, people take pleasure in painting the worst possible picture for dialysis. If you are 70+ and constantly unwell, the 14 months may apply. If you are younger, and otherwise well, you can confidently expect 10 to 20+ years.
      I know many people who have been on dialysis 10-15 years. You should start to feel healthier within a couple of weeks of starting dialysis. After all, that is the objective, not just to keep you alive, but healthy.

      It can take a little longer to get over the emotions that come with going on dialysis: everyone has their own journey. Don’t give in to depression; dialysis is just a different way of living. It take a while to adjust, but don’t despair, choices and opportunities will present themselves.

  3. my husband had weak kidneys for several years. He underwent aortic valve replacement surgery in february and the kidneys got much worse. he is now on dialysis. Many people keep talking that the kidneys may bounce back to where they were prior to the surgery. how can you tell if there is bounce back and how long can it take. at what point is it decided that kidney failure is permanent?

    • Hi Marcia. I con’t know much about aortic replacement and its effect on kidney function, so I have been asking around about it. I hope to come back to you soon with an answer. Regards, Greg

    • Marcia,
      Wierd because my husband had open heart with aortic valve replaced in Feb also, 2013…how is ur husband doing? Mine is now on dialysis, then went in for kidney biopsy and found his heart rate to be 40, so they stopped the biopsy, raced him to ICU and they put a pacemaker in….he has had nothing but surgeries since his open heart……….:(

  4. My dad is about to start dialysis. I am scared. I heard that with dialysis you only have a couple months left to live. I hope this isn’t true.

    • Hi Maggie. For some reason, some people like to say this kind of rubbish to scare people who are facing dialysis. I have been on the BigD for 16 years and I know many who have been on longer. We are all well and truly alive and kicking. Your dad probably feels very unwell right now, just before he goues on dialysis, but after a week or so, I guarantee he will feel much better. Sure, it is a big change in your life, but don’t doubt it: dialysis gives you your life back. What you make of it is up to you.
      Let me know how it goes.
      Regards, Greg

  5. I just learned that my kidney funcion is at about 18%. I fear going on dialysis because I have only heard bad things. I go back in a few weeks to get my levels checked again. I havent been diagnosed with a particular disease. My failure is coming from high blood pressure. I was just wondering if anyone has been through this and what can i expect?

    • Hi Monica, thanks for your query. There is an alternative to haemodialysis, called Peritoneal Dialysis or PD.

      The process uses the peritoneum in your abdomen as a filter via which fluids and dissolved substances (electrolytes, urea, glucose, albumin and other small molecules) are exchanged from the blood. Special fluid is introduced through a permanent tube in your abdomen and flushed out either every night while you sleep (automatic peritoneal dialysis) or via regular exchanges throughout the day (continuous ambulatory peritoneal dialysis).
      PD is usually recommended for short periods (up to a couple of years). It involves putting a permanent tube in your abdomen. While PD is more convenient than haemodialysis, there is a greater risk of infection. Some people start dialysis using PD and eventually move to HD.
      For more info, go to Wikipedia: http://en.wikipedia.org/wiki/Peritoneal_dialysis or this video: http://www.youtube.com/watch?v=CDBNmgkIqMs.
      Regards, Greg

  6. So glad to have found your site. I have polycystic kidney disease and am in late stage 4 kidney failure. Next step – dialysis. But!! when to start?? am feeling unwell lots of days, all the usual tiredness, etc. So, my decision is, do I start now at 13 -14% or do I wait until I am a 10%. Luckily I work part time, so hopefully I can still work once the dialysis starts. Or am I being optimistic!!

    • susan my husband has pkd also he recieved a transplant 13 yrs ago.. he was one week from dialysis.. now 13yrs later we are loosing this kidney.. its amazing what doctors can do.. we are now back on the transplant list and he will also be starting dialysis soon.. but he refuses to start until the very last minute..lol when he recieved his transplant the first time his kidney level was 10%… stay optimistic !!.. a transplant gave us 13yrs and a 10 yr old son…

  7. Interesting to read what you had to say about starting Dialysis, I’m starting this week and will admit I am scared, your report put me slightly at ease, I’m hoping the pain is brief.

  8. Pingback: 2010 in review | Big D and Me

  9. I would like to reassure everyone, as you have Greg, that dialysis is certainly not something to dread and fear. I’ve been on dialysis now since 1997 after a virus infection. You’re dialysed either via a line or via a fistula, I have a fistula. The latter involves needling the fistula but the line just has the tubes attached. I apply a cream called Emla Cream which is a topical anaesthetic, about an hour before I go to dialysis and I can honestly say I don’t feel the needles going in. I sit in a room with 5 other people . Our chairs have TVs attached and the nurses bring us food and drink. We have some lively chats amongst us and it really is nothing like some people may have suggested it is. It’s ok.

  10. Hi Greg…
    My dad just started dialysis this week. He’s still in hospital; today was D2. Yesterday, he started to run a fever (100) and started wheezing. Today, I found him (after dialysis) having more breathing difficulties. Is this normal? What should I expect as he begins the big D? He’s in that 70+, not so optimal, health zone to start off with, and of course, I’m worried as all get out!
    So far, I’m encouraged by your message… I’ve always found it best to ask someone who’s been there! Thanks.
    L

  11. Hi! is there a chance that for my kidney to go back to its normal functioning?
    My creatinine level is 6.5 I’ve just started on my dialysis a week ago.. Please help, I’m so down, Does biopsy makes any sense? I’M 22

    • Hi Ryan, thanks for your comment. There is bad news and good news. First the bad news: kidneys virtually never recover once they are damaged or diseased. A biopsy (where they take a little “bite” out of the kidney so they can examine it directly) is useful if they don’t know what or if the kidney is damaged. If the problem with your kidney is understood, there will be no benefit from a biopsy.

      If you have just started dialysis, you will have been feeling lousy, tired, bloated and fuzzy-headed. On top of that, the shock of starting dialysis and all that it entails is a big hit on what’s left of your enthusiasm for life. Let me tell you, at this time, everybody feels pretty low.

      The good news is that things are not as bad as they seem right now. In another few days the toxins will be gone and you will start to feel better physically. Once you can, try to get out into the world again. Dialysis goes for a few hours; the rest of the time is yours. You may feel like going for a walk, or having a drink with a friend, or going to a movie, watching sport. Get back into doing whatever you enjoy, that makes you feel good again.

      I am sure that after a while you will get back to old (young!) self. And when you realise that dialysis has given you back your life, you may not begrudge the time you spend on the machine so much. (Actually begrudging dialysis time never fully goes away, but mostly you can put it in perspective!)

      Keep in touch. Let me know how you are getting on! Greg

      • My access is placed in my neck, before i was diagnosed to have kidney failure, i go to school, but now i can’t even go out of our house.. I used to bike and trail the mountains near us it’s the only hobby of mine that makes me so happy. Can I still do that when I have have my fistula on? thanks for the reply it’s nice to know there are people who understands how a 22 yr old on dialysis feels.

  12. Hello. I lost my right kidney in 1971 due to Tubular Necrosis. I just learned that my exsiting kidney is not functioning properly. My creatinine levels are 1.6, I have the nocturnal urination, fatigue, and general overall nausea and not feeling well. I do have scarring on my left kidney from surgeries to remove kidney stones. My next appointment is at the Dialysis place with the renal specialist. Am I going to have to undergo dialysis?

    • Hi Tula, good to hear from you. It sounds likely that you will need dialysis soon. All your symptoms sound very familiar. I know that going on dialysis is a shock, but the good news is that you will get your energy and well-being back. Take it one day at a time. I am sure that after a few weeks on dialysis, things will look a lot more positive. Let me know how things go. Greg

  13. Im 37 years old and had acute kidney failure in January 2011 and was put on dialysis, as of May 5th I have been taken off dialysis because my kidneys are working at 31%.
    When I started dialysis I was scared but it did make me feel better except for the cramping and stuff. I have a question now that Im off dialysis my hair is falling out alot more why? Does anyone know?

  14. My husbands kidneys failed in Dec, 2010. He has been dealing with chroccercical lumbar pain for years now and has been managing this pain with pain meds. He’s also had several infections that have been treated with many different antiobiotics these past 18 months, I feel his system has been under so much stress and way too much medication. now he’s on Dialysis and not feeling much better, he’s always so very tired, feeling worn out, he’s still using the perma cath. The av fistula is going to be stated next week, should this make a difference in the way he feels?

    • Hi Deb, thanks for your comment. It is always hard when more than one thing goes wrong at once. Your husband’s back pain certainly won’t be helping him to relax, and infections will always make him feel lousy, even when dialysis is helping him recover from his kidney failure. I agree with you about too many meds. They all have side effects which also add to the mix.
      How long has he been on dialysis now? That tired, worn out feeling is typical of kidney failure, because all the toxins that used to be filtered out by the kidneys stay floating around in the body. Once he is on the right dialysis regimen, he should start to feel healthier and more energetic after a week or two. A typical regimen is about 15 hours per week, spread as evenly as possible over the week.
      There is not usually a noticeable difference between using a perma cath and his fistula, though perma caths can be subject to more infections (mainly because it is an open wound that needs to be ultra clean all the time). The dialysis unit staff need to be very careful when connecting to it and should clean it each time before and after use.
      It sounds like it is early days with the dialysis. Hang in there, both of you. I know that it is hard, and often an emotional rollercoaster, but things will improve. Please keep in touch. Greg

  15. Thank you for this. I’ve had renal failure for 12 yrs. Am down to 16%. Getting fistula next week. Pretty much freaking out. Going to dialysis class tomorrow, Scared to even go to that- This sucks so much. It’s good to see someone who’s ok after a length of time. Gives a tiny pinhole light at the end of the tunnel. Going to spend some time on your site.

    • Hi Lena and welcome to the BigD club. It costs you a little time, but you get your health and your life back. Keep in touch and let us know how things go for you. Greg

    • Hi Wayne. GFR (Glomerular Filtration Rate) is the best test to measure your level of kidney function and determine your stage of kidney disease. It is calculated it from the results of your blood creatinine test, your age, race, gender, etc. Your GFR of 15% is typically the point when you should start dialysis, but most people resist starting until they feel like death warmed up – at a GFR of around 10%. Let us know when you start and how it goes, initially and after a couple of weeks. Good luck! Greg

  16. just took my fiancee to emergency tonight , after gradual decline in his health, they diagnosed him with kidney failure , not sure whats causing it, but the have already started him on dialysis, im so glad i found this site,.i have alot of hope now after reading everyones comments, its good to know what to expect, it sounds like he will be ok (i pray) . thank you for having this site

    • Thanks Jaymie. Good to hear from you and I’m very pleased you got some confidence from the blog. Please keep in touch and let us know how things go. Greg

  17. Hello there…this is probably the first REAL positive thing i’ve read on the internet about dialysis.
    My husband had a catheter put in today and starts dialysis tomorrow…we are both really apprehensive and have been viewing this as something of a death sentence…he diabetic and insulin dependent as well
    Thank you for this very inspiring account of your experience with dialysis
    …please pray for us…he’s 49 and we’ve only been married 1 year…i pray that we get to add at least 15 more to that..

    again thank you and i wish you continued good health

    • Thanks Petal, great to hear from you. Please keep in touch and let us know how things go for your newlywed husband over the next few weeks/months. I am sure he will be fine! Greg

    • The next thing on your agenda would be to get a fistula placed as this is less septic than a catheter. Please do remember a person with kidney failure tends to heal slower and is more prone to infections, so be cautious about the fistula placement. But it would be ideal to get it done, as a fistula is easier to access and not scary looking. The present treatment scenario with dialysis easily gives a patient 7 – 10 yrs, provided all parameters are fulfilled. A person on the transplant list currently has a waiting period of 6 to 8 years, that means statistically and otherwise things are on your side.

  18. Hello Greg,
    I am caring for my 78 year old mother that has been on dialysis for about a month now. My question for you is…did they prescribe you an antidepressant pills? She is depressed all the time and has no energy. I know that she is up in age, but I also know that she still has life in her. Do you have any suggestions.

    • Hi Kimmie. No matter how old you are, it is a big shock to the system to start on dialysis. Firstly, her kidneys have failed, so she felt weak, listless and very unwell before she begin treatment. And the idea of dialysis often gets people down. They can see it as they loss of the life they used to live, to a life sitting in a chair watching their blood flow through tubes. This is natural and understandable, but in most cases it passes without the need for antidepressants. After a month or two your mother will start to feel healthier and will be able to do the things she likes to do. As her energy returns, encourage her to get back to the things she enjoys, like socialising with friends and family. It should not be long before she becomes the person she was before her kidney failure. Please keep in touch and let us know how she fares. Greg

  19. MY fiancee just started dialysis on Tues. He is 63 yrs old has diabetes insulin dependant, chf etc. He was always pretty healthy until maybe the last 4 yrs when his levels of creatinine were getting higher and higher. What are the cramps caused from? Is it dehydration? He also has some lumps on his hip and not on the other side. A little concerened. His weight did not change that much he was 227 now 225 even though they said they removed a few liters of fluid. Need to have some answers if possible. So sad that we had to shut down his kidneys. Its killing me phychologically. Thanks

    • Hi Donna. It is never easy moving onto dialysis. It takes a while to get used to the routine and just to the idea of hooking up to a machine 3 times a week. Hopefully he is at a good unit, with competent and caring staff. They should be able to answer questions about day to day problems, like cramping, which can be the result of taking too much fluid off in too short a time. There are complications though. If he has eaten a lot of salt, the body reacts by cramping when even the right amount of fluid is removed. It may also be that his body is still coming to terms to the new experience of dialysis and that the cramps will diminish over time as the staff establish his correct dry weight. I would visit the family doctor about the lumps on his hip. I don’t think they are associated with kidney failure.

      I know things are tough right now, but going on past experience, this is the worst of it. The good news is that he will eventually feel well again, and you will both get the rest of your life back. Keep in touch! Greg

  20. Hi Greg my name is Denise and I have to go on dialysis next week and I am kind of getting scared. My GFR is 3.4.5 I have a lot of faith just worry because I never had to face anything like this before.

  21. HI, My name is Armand. I have had trouble with my kidneys for some time now. A few mouths ago I was told my kidney function was 11% BUT, I show no signs of kidney failure. I do not know what my GFR or numbers are. I get yelled at all the time cuz I do not know them. I know that soon I will have to deal with going on Dialysis. I’m a firefighter, I workout at the gym not like before and I still work 40 a week. I try to stay busy to keep my mind off thinking about it but on my down time I think a little to much about it, wondering what will happen when I do start on dialysis.
    Will my life change to a point to where I can no longer do the things I love to do. I would like to keep it that way. I feel sad at times as to why???

  22. Hi Greg,congratulations on a wonderful Blog site. You seem to have a calming, positive outlook to share with others regarding CKD. My wife is due to have her first fistula in 2 weeks time and we are both naturally nervous and scared. Renal Doc has told us that her left kidney no longer works and her right kidney has a fluctuating function of between 25%-35%. Her renal failure has been caused by hypertension. She is often tired and is swollen in the face, but apart from that she says she feels ok. We realise that life on dialysis is going to be very different, fingers crossed she will be able to have a long happy life…
    ps: We are getting married in 3 weeks, she’s not happy about being the “bandaged bride”… but we’ll deal with that!

  23. Hi Greg, you’ve made it a little easy for me. I was told 02/07/2012, after being diagnosed with CKD for hypertension, that I need to start dialysis ASAP! I am a lady of faith, but Lord knows I am so horribly afraid. What I think mostly about is the horrible things people say about it. They say you’ll get those lumps all over your body. That’s horrific! Though you explains it better than my doctor. Thank you and I’ll try to keep you posted. Prayfully thankful

  24. Hi Greg, I go in on Monday morning for a catheter to be installed for PD. How soon will I be able to use it for dialysis? Have been on the transplant list for a pancreas/kidney for almost three years now and can no longer hold off. I hope we didn’t wait too long, I am at 10% and my creatinine is at 6.4.

  25. Hi – my husband is at 16% so will likely be on dialysis soon. He hopes to do Peritoneal at least to start with – does anyone have suggestions about travelling by car and doing exchanges in the car? Also, can he still have his little short haired dog sleep with him? I know the dog can’t be in the room when he does the exchanges. Also need tips on warming the bags when travelling. Thanks so much and really enjoy this site…

    • Hi Bev. I haven’t done PD, so I don’t know much about it, but I am sure some of our readers will know and hopefully will give you an answer. Greg

  26. Things do get better. I started dialysis on Monday, but my fistula and artery were great big duds. I am black and blue from elbow to wrist from all the needle insertions. Yesterday, I had a central line put in, 2 hours of dialysis immediatley after and 3 hours today. What a relief.

    • Hi Susan. You’ve had a pretty tough start. Have you had your fistula long? The bruises and scars will fade, but you are right, you may need work on a new and improved access. At least you have started.
      Let us know what happens. Regards, Greg

  27. My fistula was almost 2 years old, so was surprised it was still so fragile. The central line is working well – 2 runs and I do feel better – no nausea and actually feel hungry sometimes! Still some discomfort from the central line surgery but nothing that a few Tylenol won’t help. The actual dialysis is painless. If you can emphasize this to new people, I’m sure it would help them. I find that I have been napping a lot during the runs, but do have a TV and a book if I feel okay. Susan

  28. I dont feel bad and miserable anymore after reading your blog. tks. i have just started my 1st dialysis last week. after dialysis i have deep bruises (haematoma) ( dark purple in colour) at the cannula site. doc said it is ok, it will diappear eventually, and i should continue with the dialysis despite of the bruises (since the fistula area is not tender). I use warm compress everyday, for nearly 6 days already. the bruises still do not go away. I wonder is there any method which can made the ugly bruises dissipate faster?

    • Hi Lilian. I’m glad you are feeling a little better about dialysis. The first few BigD sessions are traumatic, especially if the nurse misses the vein and you get those dramatic bruises. There is a cream available that is supposed to help them heal more quickly, called Hirudoid cream, that is especially for bruises and swelling. You can usually buy it at a pharmacy or chemist, no prescription required. I have used it often over the years, but I’m still not sure if it works, or if the bruises just went anyway… Let me know what you think. Regards, Greg

  29. how do you survive? I will have to quit my job. I’m single. You may start to feel better physically, but how do you live?

  30. Christine – I would suggest that you talk to your employer right away – you might not have to quit your job, maybe some flex time could work for you. Not sure where you live. I live in Canada and am on Employment Insurance for a few months, until I am completely stabilized. The social workers on the units are wonderful, talk to them, they have amazing resources for everything.

    • Susan, thanks for this excellent reply. It is very encouraging that this kind of support is available, and hopefully not just in Canada. If it is not available in Australia, it should be. I will ask around to find out! Greg

  31. One month of dialysis and I have been moved to a community unit closer to home – feeling much better. The nurse managed to get one very small needle into my fistula on Tuesday – she was very experienced. Still using my central line as well. Hang in there if you are new – it does get better!

  32. Hi there I’m also pretty young at 26. I’ve been battling CKD stage 4 for over 2 years now. My nephrologist is preparing me for the big D. I’m a medical student, my question is can someone still work after dialysis session? Lets just say I plan to schedule dialysis early in the morning.

    • Hi Mark. Age is a big factor in being fit enough to work after a BigD session – the younger the better. The length of the session also has an effect. I would be quite surprised if you had any difficulty working after dialysis. Obviously the shorter the session the better (that is, 5 three hour sessions a week will leave you brighter than 3 five hour sessions a week).
      It will take a few weeks to settle in, so don’t be discouraged if you don’t feel shiny and new after the first day! Let me know how you go! Regards, Greg

  33. Hi Greg. I just found out that I will be getting a fistula within the month. I go for mapping on Monday. I have been so nervous and scared and then I found your blog. Thank goodness!! As others have stated, most of the information out there is scary but I am felling a little better about the whole process after reading your information.. Thank you so much. Kathy

  34. I have been reading your posts in order during every spare moment for the past several days since I found your blog. Thanks so very much for the valuable information, but even more for alleviating a lot of worry about the entire experience!!

  35. Greg, thanks for the blog and the positive vibes! I assume that you have been exclusively on Hemo-dialysis. In Dec 2011 I was told that I needed to get on dialysis and also seek out a kidney transplant as my GFR was at 10 and I knew something was terrible wrong. I had tried to postpone this event for 25 years ever since I was told I had PKD. Obviously, dialysis was the battle cry for me to keep a balanced diet, perform regular exercise and do whatever it took to live cleanly. I immediately set out to see which type of dialysis I should choose. My nephrologist urged me to choose peritoneal dialysis or PD over the hemo-dialysis. It was not until the vascular surgeon after my vein mapping had some concerns about embedding a fistula that I went the PD route. In March I had the laproscopic surgery to implant the catheter into my abdomen. A couple of days recovery and 3 weeks later my catheter was tested and I started my training for home care. That went very well and I performed 4 exchanges per day (that means you go through 21 steps in preparing yourself and fill, dwell, and drain and then you can do whatever you want. Each excahnge takes about 30-35 minutes). I did very well for the first week or so, but then I kept more fluid in then taking out. The home nurse determined that I was a “rapid transporter” and they accelerated my transition to a cycler. After receiving training I had my first night on the cycler. Cool!! Everything worked as scheduled and today I felt like my life is back to normal! Homecare, allows me to control my entire treatment. PD has also allowed me to enjoy a much less restrictive diet. For example, prior to pD I was on a .6g per kg of body weight protein restriction, no I am on a 100-120g protein minium intake. They also provided me with a phospate binder,.i.e Regagel very important as your kidneys in Stage 5 can’t absorb any longer.

    I have also been evaluated for kidney transplantation by Emory here in Atlanta GA. I had rejected the notion of doing that, mainly for fear that would place passive pressure on my family and friends to donate a kidney. I received counsel from a recent kidney transplantation recipient and she allayed my fears. I signed up and I have passed all parameters. As soon as I told my family and friends, my niece, my younger brother and even the daughter of my neighbor voluteered to be a donor. I probably will undergo the surgery sometimes in the summer of this year, if the match pans out as transplantation is the gold standard in end state kidney treatments, however I also feel that PD was the better choice for me. I am retired, however if I was still working I would even more lean toward PD as my choice of dialysis. You have to exercise extreme aseptic procedure to stay out of infections, but anybody who is halfway fastidious regarding their body care can do that.

    As I said before for the past 25 years I tried to postpone dialysis, now that it is here it is not a big deal! I did have to give up my beloved water aerobic as the chances for infection increase in a public pool, but I was able to make up my exercises by walking more. There is also the issue about that 15 inch plastic tube sticking out of your stomach, but I have learned to treat it as my life line. During the day I have a PD belt holding it in place and people have been astounded to see me moving about without any kind of signs of the tube. Men apparently are more skittish about having this plastic tube than women.

    I hope I have added some value to this blog. Incidentally, Fresenius has treatment centers all over the world and you may want to visit one. They have great DVD’s explaining the procedures. Good Luck, mate!

    • Thanks for your story Peter. It is great to hear how PD is working for you – and can obviously work for others. I am sure people will find it very valuable when they are making the PD/HD decision. Best regards, Greg

  36. Hi, my mother in law is starting classes informing her on what to expect. I know that she is so afraid and has also been fighting having to begin treatment. What can I do to be more supportive of this process in the begining. I honestly could never imagine how she feels right now; however I want to be as supportive as possible.

    • Stephanie, yes I can appreciate your mother-in-laws’s anxiety. I had it for 25 years. What can you do? Obviously, you are on the right track by educating yourself in this area; however being just sensitive to her. Keep in mind there is the physical aspect of dialysis and then there is the mental aspect which “eats” the people on dialysis alive.

      Has she made the choice between “hemo-dialysis” and “peritoneal dialysis”?
      My vein mapping came back questionable and I opted for peritoneal or PD. This involves the surgical insertion of catheter and then in my case I started training 3 weeks later. After about 6 weeks of manual excahnges 4 times a day 7 days a week i am on a “cycler” which improved my quality of life tenfold as I “hook” myself up at night and the cycler does the work while i sleep. I love it and my kidney values improve daily. I am in total control, however that treatment may not be for everybody. What I like is that I don’t have to go to the center and get “stuck” with needles three times a week for 4 hours at a time.

      It seems also that my body is tolerating the treatment so much better. If you want to find out a little regarding treatment optons click on the following website http://www.davita.com/treatment-options.

      Oh, before I forget, peritoneal dialysis allows for a much freer diet, especially protein. I practically am encouraged to gorge on food I have not tasted in years as I had been on a .6 gram per kilogram body weight and now I am expected to ingest at least 100-120 g per day. About triple for me.

  37. Peter, I have been following your success with PD and I am very happy for you. I would like to say that PD is NOT an option for many people for many reasons. Neither my boyfriend nor a good friend are candidates, for example. For many people, HD is the only viable option for dialysis, and for that reason,among many, Greg’s information and reassurance regarding HD is a godsend.

    • @writermel>I am sorry that PD is not a good option for you. I did not want to imply that I am better off with PD, Lord no! I am currently on my 3rd machine and it seems that I am being awakened nightly because of some drain issues. Yet, I did want to point out that PD is a choice and in my case I had one nephrologist recommend PD and the other HD. I also like the progress in HD whereby you can perform home HD dialysis. I also agree having a blog to exchange information is a godsend. Thanks Greg!

  38. Peter, thank you for this blog. I am 31 yrs old, expecting my first baby in 4 months and after my dad went into heart failure this past week, he has to go on dialysis tomorrow. We’ve known for a while that it would happen eventually but we didn’t think it was going to happen just yet. He is diabetic with heart issues, etc. He recovered from the heart failure this past week but since then his kidney numbers are the worst theyve been and they keep climbing. His speech is also a little off, which is apparantly a warning sign that dialysis needs to begin asap? I can’t stop crying and thinking of this as a death sentence versus just as a life sentence- Im so scared of all the things that can go wrong given his other health issues. I dont know what I will do if he does not make it long enough to meet his first grandchild in four months. Your blog however did give me some relief so I thank you for that.

  39. Hi, I am just in stage 5 of CKD my last two creatinine levels were 3.93 and .349 so I am about 12 or 13 GFR. I had my fistula placement on 7/30/2012 and can feel the thrill in my arm. I go back to the vascular surgeon and my nephrologist on 8/29/12. I also plan on having a PD catheter placement. I want to be well prepared for dialysis, even though I hope that day never comes. I like the positive vibes from your wbsite. Having CKD is scary and I take things one day at a time and one step at a time. I am having problems with fatigue and also mental sharpness. I also don’t have my sense of humor any more. I used enjoy things and now I just don’t feel like doing anything. Even grocery shopping is hard for me. I do still work full time and it’s all I can do to make it to & from work Monday through Friday. Besides my CKD I also have Dieabetic Retinopathy and have been treating for that since August 2011. I have Avastin injections in my eyes every 4 weeks and have had laser treatments on both eyes twice now. i am struggling with the decision to keep working or applying for disability. I am just wore out from the kidney disease and going to the doctor all the time. I would appreciate any feedback.

  40. Hi there. My mom is 74, insulin dependant diabetic (almost 30 years now), has been in stage 5 awhile. She got her fistula exactly a year ago and we haven’t had to use it yet. Her numbers from her lab yesterday don’t look hopeful. Her GFR is 12, her Creatinine 3.5 (not horrible), phosphate 5.9….and BUN/creat ratio is 14 (not horrible). I am hoping to stave off the dialysis till november, as I wanted to take her on a “last” cruise in mid october, and I’m scared that at her appt in 2 weeks, the doc is going to say I can’t:( She was so looking forward to it. She was 15 GFR in July, so she will be right at the cusp in october prob…great. Couldn’t be helped my job wouldnt let me go on vacation this summer. Do you think its possible he still might let me go till we get back?? or is too dangerous ya think?? Im sweating with the worry.

    • Hi Colleen,
      Just take the issue head-on with the nephrologist. The numbers your mom has are better than what I had and I was able to negotiate a couple of months extension before starting dialysis. You are ahead in that the fistula is in place and hopefully usable. Is your mom on a phosphate binder, yet? In my situation, that made the biggest difference, especially regarding my digestion. Most doctor’s also know that a dream trip has huge beneficial mental benefits. The adrenaline rush does wonders. It seems that your mom is a trooper and so are you. Cheers, Peter

  41. Hi Colleen,

    It is wonderful that you are planning such a marvelous vacation with your mother! My boyfriend has numbers much worse than your mom’s but, obviously against good advice, we took a trip this summer to Italy. We traveled from Denmark, so not terribly far- and we knew hospitals were nearby in case of emergency… and we budgeted in an emergency flight back, in necessary. It wasn’t. But we planned for worse-case-scenario. As it turned out, the trip was uneventful, health-wise, but was an amazing experience for us. Interestingly enough, a month later, he has still not started dialysis, although it is imminent.

    I agree with Peter. Tackle the question head-on, and ask questions. I assume she has her fistula checked for viability, but if not, it would be good to do so before your trip. If it is usable, then even if she needed to start soon after you get back, no worries. If it is not, then she could still start with a central line, which is also absolutely doable, but better to be prepared emotionally for that eventuality than to have it be a surprise.

    In any case, keeping open communication with the medical team is vital, even if you don’t like what they have to say. The more information you have, and the more aware you are with regards to what the numbers mean, and how they correspond to how your mom is feeling, the more manageable this will be for both of you.

    Finally, even if they say ”no”… Try not to view this as a ”last” AND ”lost” opportunity. Life will change with dialysis, and there will be things you lose, but the life, the health and energy she will likely gain, even if cruises are out, will far outweigh the loss of the vacation, if it comes to that. If the docs say ”no”, try to find another option that allows you to spend some wonderful, care-free time with her, even if it ends up being closer to home.

    Good Luck!!!

  42. OMIGOSH, you guys are wonderful. Thank you for the quick responses. (I am in Orange County, California USA)…
    I will do that then at our appt in a few weeks and just see what he says. Yeah, unfortunately for me, I knew mom was on a timeline but my job laid off lots of people before the beginning of the summer and I was unable to take her somewhere earlier (which I wanted). She wanted to take a cruise to Germany, Prague area in Europe…..and I had a few picked out and couldnt risk losing my job this particular year. So they gave me time in october (not understanding my moms timeline)…..and I found one to Canada/New England looked do-able and would just get her out.

    We have prolonged it longer than the doc expected because I read up on everything I could at the outset to help (diet, etc) and lucky for me she listens to me:) They thought she would have to start last year so I didnt plan anything, and then as we got more “out of it”…prolonging things, I had hope we COULD do something and then my job started going crazy in January and never stopped. I thought about quitting and just saying heck with it, but my mom was stressing over that (she worries) so I just kept going. And now her numbers aren’t cooperating with me (erg).

    We pray all the time, and of course mom is scared to even start, but she knows its any time now. And like you said, I thought getting out there to see life a little would help her before that. (My dad is deceased).

    And yes few months back we had the fistula checked again by the vascular surgeon, he said its ready, to which she frowned (y’all know the drill). I do notice how sleepy she is always and especially after eating, and she has started the itchy itchies all the time….but the doc always comments that her heart is still in good shape thank goodness. She has the other diabetic sidelines like High blood pressure and thyroid (the usual)….anyway we baffle him because every time we go, he looks at the numbers, looks at her and sees how good she looks on the outside…lol….and he tries to reconcile the two…lol. Anyway, he ALWAYS asks if she is nauseated, so I guess thats what you look for?? So far she is not…..

    I am thinking of going to the local clinic he told me about and just talking with them to see schedules and stuff for if we have to start immediately upon returning (if we end up going). My last question was: I was worried about the “starting” of it out of state because I read that its best to have a lab or chart of all your stats of your “previous” dialysis when you travel, and wondered what I would do if her first one hadn’t been done yet and was out of the area??
    Guess I could ask him that.

    p.s. Yes I absolutely wanted to give her my kidney and they poo pooed it, which makes me sad.(her age and diabetes). I never knew whether to push it more?? or trust them?? or?? still struggling with that.

    And she has also had Procrit in the past year for the anemia…..but shes been off it for about 5 months now.

  43. o, I forgot Peter, NO he has not mentioned a phosphate binder yet. Her phosphate reading is currently 5.9, I’m not sure how bad that is?? I have cut out all her milk, etc….cheese……even nuts he told me.

  44. My creatinine has gone from 4.56 to 6.4 in 2 months. I have seen my mother, my aunt, my good friend go thru dialyis. I have seen them suffer and it has scared me growing up. I lost my aunt in 2007 and she suffered alot and finally lost her life because of sepsis. I have been ok and have delt with the mention of dialyis. I have Polysistic kidney disease. I always knew I had the gene since I was 15 years old. I offically got diagnosed with PKD in 2001. I did not have any problems and my blood pressure was controlled. 11 years later and I feel like I have gone down hill since 2009. I have been hospitalized 2 times. I have not been in the hospital since 2011 and I was happy with that. i received my AV fistula this past May because my doctor wanted me to be prepared and not have to get a catheter, in case I need emergency dialysis. I was told in April that if I was lucky I can go a year without dialysis. But I think the time has come, I have not received the confimation that I will need dialysis yet but with my creatinine going up so quickly, I am sure of it. Today I have been feeling very weak and depressed, but when I googled what to expect while on dialysis, your article popped up. I have know this disease and have seen so many family members I love suffer with kidney failure and dialysis, Iwas so scared. When I read your article, I felt so relieved. I am not saying I am not scared anymore, but I feel more positive about it. So I want to thank you for writing this and making it available for us to read. Hopefully I wont have to be on dialysis long. I do have about 3 people that want to get tested to see if they are a match to give me a kidney. I am so lucky and blessed to have such great family and friends support. But I know I will be ok, I know God does not give me anything I can not handle and he has NEVER let me down. Thank you again and God bless you! -Nora

      • I agree with Tula, never lose hope!
        Tula, you must have had a kidney transplant for your GFR going to 58. I was told that generally a patient on dialysis could not expect a GFR higher than 25.

      • No transplant! I have CKD since birth. I’ve lost one kidney. My remaining kidney suffers sometimes. I have been struggling with renal insuffiency for over 10 years. I’m 55. I have improved my GFR with diet and exercise. NO proteins from animals! Low purines, low fat /no animal fat, watch potassium and phosphates and most importantly NO processed food! No fast food. NO alcohol. And I move from the minute I get up till 7 at night on days I am able. There are bad days. I also drunk over a gallon of water a day. No carbonated beverages, no caffeine, no milk. Only juices without HFCS! Keep living! Attitude is everything!

      • Tula, your diet and exercise regimen is oustanding and yes, it can make a great difference. It did wonders for me for 20 years and then I dropped through the stages like a rock finally being classified Stage 5 -ESRD. You must be a non-dialysis dependent, chronic kidney disease patient or NDD-CKD as you did not mention whether you are currently on dialysis.I have PKD, so did my mother and one of my brothers and I passed it on to both my daughters.

        I have been checked out for a kidney transplanrt an I am currently on the National kidney recipients list. It is also interesting that while I am on peritoneal dialysis, my nutrition – under strict orders of a dietician – has changed. Prior to dialysis, i had a protein limit of 42 grams or .6 gram per kilogram of body weight, no I have to eat protein bars at 30 g to supplement my protein intake and basically follow your diet.

  45. Hi there. Yeah the doc said no to that. sigh. He said in time we could do a dialysis cruise, but I heard their destinations are limited and way expensive. Will see i guess. Super bummed he said no. He is going to let her go one more month anyway (before starting), I guess he just doesn’t want to take a chance?? dang.

    I had another question. Ya know other kidney people told me that salmon was the best fish so we have that once a week, but I just now read that its NOT. panic panic. Its high in potassium and phosphate apparently. We don’t do meat at all anymore. Just broiled chicken and fish. Anybody out there think salmon once a week is horrible?? Or is it just a small portion okay?? or should I just not at all and just do cod or sole?? thanks for all the help.

  46. First of all, I am SO sorry your cruise didn’t get the green light. :-( But your doc is right, there are a lot of things you CAN do. I hope you have read all of this blog and have seen all of the travel comments. If you haven’t, I encourage you to do so!!

    Secondly, with regards to diet… I have had endless frustration with finding diet answers. The reason is, everyone is different. There really is no such thing as a ”kidney failure diet.” Sure, there are guidelines, but each person’s needs vs. what their body can process is completely unique. The only way to know specifically what your mom should and should not be eating is to go to the dietitian.

    I went to the dietitian with my guy and a list of questions, and we left with a list of answers. I can say that was one of the most productive office visits I have experienced so far. If you haven’t been with your mom to her dietitian, then please see if you can go with her next time. Our dietitian was thrilled that we had so many questions about what we can eat. She was so used to having to say, ”No. No. No.” that she seemed to really got a kick out of saying, ”Yes, this, and this, and this.”

    Bear in mind, the diet may change once your mom starts dialysis, so the diet you guys create this month will likely not be the diet you create next month. It is challenging, but it is also interesting. Losing our oatmeal and almond breakfast was a blow, but finding bread cereal with blueberries was a treat.

    If either of you like to cook, creating meals can be a really fun activity you can share. Finding ways to incorporate ”better” proteins, ways to get that umami taste and feel, is another way you can share in this experience with her in a positive way.

    I would also check out Greg’s post about the renal tracker, a phone app that gives you info on what foods contain what minerals, fat, etc. Additionally, I don’t know if we found it on this blog or not, but there is a site we use for food comparisons when we are asking ourselves, ”Oatmeal or Rice?”

    http://www.bitelog.com/mega-food-search.htm

    It is a little cumbersome, but honestly, on a Saturday when we are planning our meals, it can be really interesting to check out side-by-side comparison. You can look at phosphate, protein, potassium… so many options.

    It is so easy to get overwhelmed with diet. Losing favorite foods, feeling more and more limited, can be a huge emotional blow. But, once you realize just how many different foods there are in the world, and how many of them you can eat, it becomes not just manageable, but enjoyable.

    • Hi guys, thanks for the input. And thank you Writermel for that website on food comparisons, very helpful:)

      As far as dietician, ya know?? The only one the nephro sent us to about a year ago was the one through the primary physician. And she just basically gave us 2 lists….one for the kidney diet, one for the diabetic diet and so I try to combine the two. But it wasn’t like a kidney diet specialist or anything, it was a general nutritionist. I got the impression her nephro wanted her to WAIT until starting dialysis to have their nutritionists talk to her?? He didn’t seem as worried about what she was eating BEFORE we started like I was. Cuz obviously we wanted to prolong starting it. We live in Orange County, Ca and he is a doctor here. Just the one the primary sent us to about 3 years ago when she slipped under 50 percent or something. (trying to recall now).

      The first nephro her primary sent us to….made mom do that “camera pill” thing at UCI….mom told them she had never bled, did not have cancer in her family, etc….they made her do it anyway (she looked like an astronaut all day), and then we had to fill out these forms to let them “use it” for a study. So I think that was the plan all along….this was NOT a good nephro. He had let her red blood get so low (the number was a 6 when it should be 11)…..that her PRIMARY had called to tell me to take her to the ER for a transfusion, that was fun and could have been prevented. this was a few years back. This guy did nothing for her.

      The newer guy at least started her on Procrit right away when he took over. And we haven’t had a transfusion since. She also does 3 iron pills a day, but she always has pretty much since this started.

      Anyhow, as far as the transplant, her current doc kept saying “we’ll see after she starts dialysis and how she does on it”….well the whole point WAS to not have to have her start if i could give her a kidney and see how long it lasts. But anyway, I just kind of gave up. Shes 74, insulin dependant and Im afraid the hemo wont give her as many years as the other. Mom doesn’t really do the computer so she doesnt know or read the stats like me (which is a good thing), but this is my gut feeling. So do I have to go through the primary again ya think to get another nephro opinion??

  47. Hi Coleen, I absolutely second everything “writermel” said regarding a dietician. I always had great support from them over the past 20 years.

    I am also sorry about your trip and I can feel for you. Look it may be time to seek a second opinion. It was odd to me that they “laughed” you off when you volunteered to donate a kidney. Kidney transplantation is supported by Medicare over dialysis as it is much cheaper on the long run. My understanding is that 10% of the total Medicare payment goes to dialysis. You indicated that you live in Ontario (which is close to LA. Try to find a Medicare approved kidney transplantation hospital and talk to them to have your mom evaluated. Usually you need to be refered by a doctor. This is a separate track and Medicare pays for all expenses, including the evaluation for the donor. Currently, I am on the national kidney tranplantation list awaiting a donor at 69 years old.

    If you select another nephrologist, you may want to seek out a younger physician. In my case I have had two nephrologists and they were both female. Being a male they seem to understand the mental aspects a bit better than their male counterpart.

    You also said that your mom’s Phospate values were around 5.9. My diatician seems to think anything above 5.5 requires a phospate binder. Usually therecommend a product such as Renagel. In my case that was very expensive at about $ 360 a month and my nephrologist switched me to Calcium Acetate which did wonders for me and allowed me to postpone getting on dialysis for 2 months. At the time I could not eat anything green, especially broccoli and salads. It seems to give me digestionary problems.

    Finally, has your nephrologist suggested an alternative to hemo-dialysis? I have posted previously that I reluctantly accepted peritoneal dialysis and I have not regretted it. Not everyone is a candidate for this treatment, but it allows me to manage my own care and as I pointed out before travel on my own terms. As a matter of fact I will undertake another trans-continental trip from the near Atlanta GA to Alameda CA passing by Ontario in a couple of weeks. Just a small endeavor taking stuff to my youngest daughter.

    I wish you the very best. Don’t give up on your trip and visit the dietician as soon as you can. You may need a referral.

    Best wishes, Peter

  48. Colleen, that procedure at UCI sounded ghastly, but don’t ever give up, especially regarding a kidney transplantation. I did a search and it sounds as though the only kidney transplantation center in Orange County is UCI. I am attaching the link.
    http://www.healthcare.uci.edu/ts_kidney_transplantation_services.asp

    They have been doing transplants since 1969. Consequently, if they are anything like Emory here in Atlanta, they should have a great staff. I would just visit them and request a meeting with the coordinator and review with them what you have posted so far. Each team has several coordinator and it is a separate process from the primary doctor and nephros (and the rest of the hospital). I looked to see if they are Medicare approved, but I could not find a reference to it).

    I also searched for a woman nephro, just in case and there is a Dr. Phal listed. Again, that may give you another option to pursue.

    Regarding your comment about salmon. It is true that salmon is high in Phospates as are other “dark” meated fish. For the past 25 years I have avoided salmon along with any kind of shellfish. My dietician advised me in general to eat fish recommending “the whiter the better”. You may also want to avoid mushrooms and tomatoes.

    Good Luck and don’t give up. Keep asking questions! Make yourself heard!

    Best regards, Peter

    • Thanks for the advice Peter. Yeah, on the salmon thing, her primary kept saying “salmon’s the best for the antioxidants and general health” even as her kidneys have had low numbers. The nephro said it didn’t much matter what type of fish at this point, again I think waiting for her to start the process first, so most of my info has been from places like this or books.
      She likes halibut too, but I read thats not great either?? Catfish is her worst but looks like its good for her now. She won’t eat that I dont think…lol. Oh yeah she used to LOVE scallops, but i knew shellfish was a no no.

      As far as the camera pill, yeah you swallow this light bulb thing, practically choke on it, you are hooked up to electrons which monitor it going through you all day and supposedly you poop it out. Well we looked for it for a week after, never saw it. That was 3 or 4 years ago now. We were supposed to make sure it didnt get lodged somewhere. All this to prove she didnt have cancer somewhere they couldnt see?? But i never heard of anyone else who had done this. I mean from what I understand it is TYPICAL for kidney failure patients to have some anemia right?? They acted like it wasnt normal, and I had no idea till these years later. With what I know now, I would have refused it i think. Mom just went through with it cuz I told her we should prob do it per the doctor (the one who let her iron get so low she needed a transfusion)…. She trusts me, uggh.

      So okay then, I guess I should pursue the transplant thing separate from those guys to get an opinion:)

    • I had a thought/question in relation to my mom’s GFR if anyone has an opinion. (I know everyone does….lol). Re: this cruise decision of mine for october 15th. Mom is currently 12….she was 15 on labs a few months back. I have read that dialysis ONLY is working as about 10 percent of your kidney function anyway, so as I think about it, why would he think a 12 is any worse than what dialysis could do anyway??

      Im sure my question is stupid and has a logical answer……but Im also pretty dang sure (having seen her labs over the past 5 years), that she wont go from a 12 to a 10 in the next 28 days. And even if she did, it would maybe slide to 11 or 10 and I promised this doc I would take her to the center immediately upon returning on oct. 27th. I just feel I will be so frustrated if I could have done it by mere weeks. Selfish I know, but she wants it bad too, but doesnt want to die of course on a ship. (i told her she wouldnt as if I had the power or something right??)

      I am going to get a second opinion though Peter, I will try to set up this coming week or the next one, but the travel agent is telling me I need to know NOW…lol. Im not laughing in that its funny, I am laughing at my own distress over it (sigh)

  49. Hi Coleen,
    “She trusts me, uggh. So okay then, I guess I should pursue the transplant thing separate from those guys to get an opinion:)”

    ———————————————————————————————-
    Who can you trust, if you cannot trust your daughter! Also address the kidney transplantation with passion. You and your mom need it. It is a long process, but it will give you hope in the long run. They told me that it takes 1-2 years on average to get everyone checked out. It was 4 months in my case and they are still checking out my niece as a possible donor. I have a friend (her sister was the donor) and it took 8 months from the time the started to the completion of the kidney transplantation.

    It will give you a chance to work with a team of experts. Good Luck!
    p.s. use the second opinion route to see if you can finagle your November trip after all…

  50. Coleen (and anyone else looking for a comprehensive list of what contains what), we use this site also.

    http://www.foodcomp.dk/v7/fcdb_nutrlist.asp

    This is a list of nutrients for common foods. You can click whatever you are concerned about, phosphate, potassium, etc. and it will list the foods in the data base according to levels. We use this in conjunction with the other site.

    Nothing can replace a dietitian’s individual advice, but you can get some general ideas on high level foods to avoid.
    :-)

    • I had a thought/question in relation to my mom’s GFR if anyone has an opinion. (I know everyone does….lol). Re: this cruise decision of mine for october 15th. Mom is currently 12….she was 15 on labs a few months back. I have read that dialysis ONLY is working as about 10 percent of your kidney function anyway, so as I think about it, why would he think a 12 is any worse than what dialysis could do anyway??

      Im sure my question is stupid and has a logical answer……but Im also pretty dang sure (having seen her labs over the past 5 years), that she wont go from a 12 to a 10 in the next 28 days. And even if she did, it would maybe slide to 11 or 10 and I promised this doc I would take her to the center immediately upon returning on oct. 27th. I just feel I will be so frustrated if I could have done it by mere weeks. Selfish I know, but she wants it bad too, but doesnt want to die of course on a ship. (i told her she wouldnt as if I had the power or something right??)

      I am going to get a second opinion though Peter, I will try to set up this coming week or the next one, but the travel agent is telling me I need to know NOW…lol. Im not laughing in that its funny, I am laughing at my own distress over it (sigh)

  51. Colleen,

    life is a crapshoot and you need to take chances some days. The fact that you both are craving this trip should be factored in strongly.
    Regarding the GFR, yes it is a vital indicator; however different people react to the various levels. It took me about 9 months to go from 15 to 10 and even then I did not show serious indications that my kidneys were about to fail. All those indicators they were looking for were absent, i.e. swollen legs, tiredness, etc. I think in retrospect, I think it was the phospate binder which helped me the most. I also have met a few people who were below 10 before they went on dialysis. You have one big advantage that your mom has a checked out “on the ready” fistula.

    I definetely feel that you should get a second opinion and just let them know that , “by the way I am taking this trip”. I would take out an insurance policy on the trip, though. The above is something I would do and should not be read as a medical suggestion.

    God Bless and good luck to you and your mom,

    Peter

    p.s. I will be thinking about you as I will pass through Orange County Saturday a week from now.

  52. Thank you so much Peter. Believe me you have been a big help. I checked out the UCI sites that you wrote and got a response already, so trying to get that sooner than later. But if its not in time, I still may just go with it, get the travel insurance, do her labs a few days before show time and make a decision. I am touring/talking to the dialysis place she will go to this very week, and find out a few things there to, re: scheduling and giving them info so all is ready. Will keep you posted:)

    Have fun in orange county….its been pretty dang warm I must say, but is supposed to be cooling off in a few days. I work in Mission Viejo and live in Huntington Beach so yeah please send some thoughts/prayers our way! Good luck on your safety and travels and hope you enjoy.

    • Hi Coleen, I am sensing a sense of urgency and passion on your part. Way to go! Keep on pursuing the transplantation angle as well as your trip.

      My destination will be Alameda as I am coming on I-20 from Texas. Will say a prayer for you and your mom, though.

      I will also post on my website my progress. Some people tell me that I am crazy to undertake this trip.

      • Oh good, then we will be in the same club. The “I’m crazy” club, works for me. Once she starts, I am going to try to get my mom on here, so she can be encouraged. Shes just not much in computer world…heh.
        But as I said, in a way its a good thing, cuz I don’t want her believing everything she reads (you know how some of these sites are). I do agree that half the battle will be psychological. Everyone that I have read on here is such a trooper. You guys really are amazing.

        Makes me appreciate every day. I feel like I shall never complain again..lol.

  53. Hi, someone please….my brother has been sick for a month vomiting, losing his taste of food, went to ER and they say he has kidney failure he doesn’t drink or smoke, his kidney or 5% he has a thing in his neck for dialysis this is his second day of i think temporary dialysis that a hr and 30 min and there is no difference in the function of the kidney…..is that similar to anyone out there and what should i expect …i like to thank anyone in ADVANCE FOR ANY INFO…

    • Hi Marie. Your brother sounds like he has classic kidney failure symptoms. They are not pleasant, and they can come relatively quickly, as the kidney begins to fail. However, he should find that after a few full dialysis sessions he will begin to feel better and after a few weeks of dialysis, once he is in the routine, things should settle down. The routine is typically three times a week for about 4 hours per time. There will also be some dietary restrictions he will need to follow to control his calcium, phosphate and potassium levels, but again, this should come in time.
      Come back if you have any other questions. Regards and good luck. Greg

  54. My husband just started dialysis two days ago. His creatinine level was around 12 to 14. He had Rheumatic fever when he was young which contributed to mitral valve prolapse, followed by surgery to correct around 9 years ago. About a year later he had a stroke. He has been doing well until now. We’re both very frightened and it’s so depressing to see him in that hospital bed, he has a temporary catheter right now and should have surgery for permanent dialysis access. He still seems tired and I feel bad for him. I know it’s early and we’ll need to get used to the “program”, but until then it’s still scarey. I’m glad I found your site, it is so positive and was very good for me to realize he can be healthy and do what he wants to do after awhile. Thank you, thank you.
    Lisa

  55. Ana October 4, 2012

    Hello, I’m looking for some input and advice. My father has started dialysis about 3 months ago. He is doing PD at home. Since he started things have turned for the worse. My father has lost 40 lbs and is nauseous constantly. He is also very emotional and rarely able to have a conversation without having tears come to his eyes. He has reached out to his specialists and no one has a solution for him. He is desperate since now he feels much worse than he was before he started with his kidneys only at 13%. Has anyone else experienced this? Any advise or input please.

    Thank you,
    Ana

    • Hi Ana. From what you say, it sounds like your father is not getting enough dialysis. The symptoms you describe, nausea, being dog tired, emotional, and really unwell are typical for kidney failure. He should be feeling better after 3 months on PD. I don’t know enough about PD to comment in detail about the process, but make sure that he is dialysing regularly and consistently for the right period. If not, check with his dialysis support team to check his lab results to review his dialysis regime. If so, there may be someting else in play.

      Does anyone who is on PD have any comments?

      • Hello Peter,

        I really appreciate the time you took to share your experience with me and others. I will follow up with my dad and look into all the things you have mentioned. I’m so happy to hear the positive side of things. You have given me hope!!!! it sure hasn’t been an easy road for him and my mom. God bless you as well..

        Very Grateful,
        Ana

  56. Hi Ana,

    I have been on PD since March 2012. Does your father get enough protein? This is very important. Prior to PD I was on protein restriction at .6 gram of protein per kg of body weight. Now I have to intake between 100-120g per day. Not easy. I usually start of with a smoothie consisting of 30 g of vanilla whey powder (available almost anywhere). I bought a five pound bag at Sam’s for 35 bucks. I mix it with a bottle of Ensure vanilla flavor two handful of blue berries and a half of banana. Then I have a Magic Bullett mixer to stir things up.

    Mid-morning I have a Powerbar (also from Sam’s) another 30 g of protein. Usually eating some chicken or beef in the other meals will make up the remainder. I have kept my weight within 2 kg and actually gained slightly above my target weight.

    Make sure he mixes a dose of MiraLax in my smoothie, otherwise constipation can become a problem. According to my nephrologist and home nurse this is safe.

    I would also ensure that he discusses with his nephrologist the need for a Phospate binder. This is very important as the weakened kidneys cannot absorb phosphate any longer. In my case I lost my appetite as the food would just sat in my stomach and make me feel bloated.

    Finally, the weight loss should be reported to his home nurse at once. Does he keep a log? I have to weigh my self twice a day and report any unusual weight gain/loss to my home nurse and nephrologist at once.

    Does your dad have monthly appointments with his nephrologist? I do including having my blood drawn. All results go to my home nurse, nephrologists and nutritionist.

    Tell your dad there is life after dialysis, but he has to ensure that his values are close to perfect. If you do a click on my name you will see that currently I am on a round trip from Georgia to Oakland California. This is my second time within 3 months. My blog should give you more details.

    PD has given me a tremendous quality of life and there is nothing I cannot do. Just make sure he get’s the right support from his medical team. The Fresenius clinic along with my Liberty cycler are my lifeblood.

    God Bless,

    Peter G

    • Hello Peter,

      My dad is 72 years old and was diagnosed with Vasculites (Wegener’s granulomatosis -WG) which caused an Acute Renal Failure in May 2012. This was very sudden and shocking to us, as apart from hypertension, my dad was maintaining excellent health. His creatinine levels in May was 8.9. He had a kidney biopsy done, which showed that his kidneys were badly scarred and that WG had taken a toll on it. He was Immediately put on HD and his creatinine levels came down to about 3.9. The doctors then suspended dialysis for short period to see if there was enough recovery, but unluckily the creatinine levels kept climbing steadily and another biopsy showed not much recovery. Last month he opted for Peritoneal Dialysis and he now does 4 exchanges during the day. There is no night time dwell of the fluid.
      He has been on PD for about a month now. Before he started PD his creatinine and BUN levels were 4.0 and 19. Now after a month of PD his creatinine level is about 4.5 and BUN 25. Is it normal to have this kind of rise in levels before the body settles down with PD and the levels begin to drop ? I am very concerned and don’t know what to expect.

      Thanks,
      Vidya

      • Hi Vidya,

        I cannot comment on the specifics your dad is experiencing. Every patient is different, however I can tell you my values did indeed jump all over the map when I was on manual exchange.

        My transition to a cycler was accelerated, because I turned out to be a rapid transponder. Basically, that meant my body was absorbing some of the fluid when my dwell cycle was 4 hours. This caused me to retain fluids in my joints. Attempting to regulate that with a higher percentage solution did not allay the condition.

        Once I was placed on a cycler (Fresenius Liberty), it made all the difference.

        My values became optimal. I am still running a 4 creating level, but I feel great. The cycler performs 4 exchanges of approx. 2 hours each and I am using the mildest solution at1.5%

        Keep asking questions, especially directed to your nephrologist and home nurse. Your dad is only 3 years older than I and he should be scheduled for a cycler.

        Godspeed and good luck,

        Peter

  57. Hi Peter,
    Thank you for the fast response. It just feels good to know that there is someone out there who is on PD and doing well. It gives me hope and courage.
    My dad lives in India and as such there is no health insurance (state or private) to fall back on. So it’s the family pitching in and also giving care. Cycler being an expensive option, the nephrologists’ asked us to try manual exchange for sometime before investing in the cycler. Hence the manual exchange for now. Does the cycler allow exchanges to be done manually too? Sometimes in India there are power outages and I was not sure how that factors in.
    My Dad’s been a vegetarian all his life, no meat/seafood or eggs. So right now, getting the right amount of protein is a challenge. Also, constipation is adding to the challenge and he’s on laxatives.
    I am planning to visit him in a few weeks and want to take energy bars/candies and other protein snacks from here in the US. But I was not sure if I could buy him anything off the shelf or if it had to follow a strict renal specification.
    Any pointers from you now are a big help. Thank you again.
    Vidya

  58. hello. My husband had a kidney transplant 13yrs ago.. is now rejecting and will start the big D soon.. he has been through alot these past 2 yrs.. he was flown to houston with an aortic anurisum with dissection and should have died… but during all the surgerys they were able to keep the kidney working.. but a yr later we are now faced with rejection and he is back on the list for a new one.. My concern is the anurisum with dissection . will this have an effect on the fistula and the dyalisis because of weakend veins… and the patch on the arch of his heart where the anurisum was locaten.. they said the veins dissected down to his feet… do the veins become strong again or is ther a worry about weak veins.. He has PKD.. and is very depressed about going on dyalisis..

  59. Hi Peter and all. Im happy to report that I did kidnap mom and take her on a cruise last minute:) We just watched everything she ate, toured everywhere with her wheelchair and made the best of it. Glad we did it. Had a few scary moments where her feet and lower legs got real big and she was in some pain from that so I gave her an extra water pill (fouresimide) and it seemed to help, but then the last few days she started developing this rash on her lower legs above the ankles and we were scared it was shingles, but I dont think so….think it was related to the stretched skin from getting big….although it did itch and hurt. Not so much now that we are back. Still trying to get into the doc, next week hopefully as the receptionist tried her best to punish me for cancelling an appt that was during the time we were gone…….and tells me the next appt would be end of dec….LOL…i said I dont think so, since my mom is at a 12 GFR and prob less now, nitwit. Ugggh. The vacation was fun, the aftermath not. But we have our memories. Now she is trying to charge me 25 bucks for being a no-show, which I was NOT, and they are pretending I didnt cancel.
    HMO’s , ugggh.

    If dialysis is half as much fun as this, o help me….we are trying to stay positive though. Thanks all for your prayers and for this blog. Im a wee bit tired right now, but we did it, got back safe before the hurricane in that part of the world we were just at….man o man….we made it by a week.

    I wish everyone the best out there!

    • Coleen, i am really happy for you. No matter what will happen down the road, you will have those wonderful memories of your cruise. Good for you and your mom in doing your own thing!

      As for me,I have not thought aboout my kidneys for a couple of weeks. I kept running into things and when they tested me, they found a brain tumor. Nice, huh? I am scheduled for surgery on Nov 14, but i have 2nd opinion visit scheduled at Duke next Tuesday. Pray for me, you’ll. God Bless.

      • Omigosh Peter!

        I am SO sorry and I’m praying this very minute for you. I will continue….
        Evidently they feel it is URGENT, since Nov 14 is practically a week or so away. We will all be thinking of you and are behind you. Hopefully the 2nd opinion may offer something more hopeful, but regardless.
        Often we think “how much more can I take” or “how much more can happen”….I think this and Im not even the patient. I can only imagine and give you internet hugs. Kidney problems are enough for one life, and this makes me think of Job. But stay strong and we will try to help you like you have helped all of us:)

      • Coleen, thanks! They wanted to start snipping away, but I told them I needed to go to the beach for a week. That is where we re heading and then tomorrow I will be at Duke formy 2n opinion. So that will work out.I will aslo post on my blog, what is happening at Duke. Just click on my name for the address

  60. Pingback: For more information | Stuff We All Want to Know about Henning

  61. Prayers and best wishes to you, Peter! Keep us informed of how you are doing!

    We started dialysis this week. Or rather, we TRIED to start dialysis this week. Day one was a disaster from start to finish and all he ended up with was a specatularly bruised arm and an almost as spectacularly bruised psyche. Day two, today, was marginally better. Only because after a stern letter of comlaint on his part, and a sit-down with the doc and nurse and a scan of the fistula did he consent to begin. It was all for naught, though. They think the fistula is still not mature enough, as they can’t seem to stick it properly, and when fully stuck after many attempts, it won’t flow both ways. So… back to the drawing board. Perhaps a neck catheter is next. We really don’t want to go that route, but neither does he want to be so sick all the time.

    We also discovered that after a really bad day of treatment (or non-treatment), the last thing we wanted to do was come home and answer 15 different calls and texts from well-meaning family and friends. This has been coming for years, so most of the people we know are SO interested in seeing him regain his health. However, it is too much to say over and over again how it didn’t work today, we’re gonna try this… etc. It was the same when he found out he was not a transplant candidate. Explaining things over and over again is so draining, and traumatizing.

    So… I broke down and started a blog of our own. :P As things progress, I think it will be easier to keep up with that, than to constantly answer the same questions over and over and over… Thankfully, THIS site exists so I can link people here when they have questions. My stats say it has already happened once today, so :)

    We are hanging in there. I don’t think either of us would be doing as well as we are (not that we are doing great, but still…), if we didn’t have this site as background for our experience. So thanks again, Greg!!

  62. Random question. I have read/heard that Co Q 10 helps kidneys. Anyone have an opinion?? Moms nephro never mentioned it so maybe its just another thing out there. Just curious. I like to look at everything, anything that can help. Mom is now fluctuating between 12 and 13 for a few months now. (gfr)

    • Sorry Colleen, I have never heard of CoQ10. But I looked it up on the net and found several references including one updated Sept. 1, 2012 from the Mayo Clinic – http://www.mayoclinic.com/health/coenzyme-q10/NS_patient-coenzymeq10/DSECTION=evidence. Basically they say that: “There is initial data to support the use of CoQ10 in the treatment of kidney (renal) failure. More research is needed before a recommendation can be made.” Have you any info? Hope your Mom stays healthy. Greg

      • Hi Greg.

        Thanks for responding. I read the link you gave me, interesting. No, I haven’t any info really, I just heard and read a lot about this new wonder called CoQ10 as it related to kidneys. But her nephro tells me to be very careful on minerals and vitamins at this point, cuz it all depends. So I haven’t experimented with things other than the ones he tells me too. (Vitamin D, iron of course, B complex, and some C)….sometimes when I mention things like that he shrugs….lol. I’ll let ya know if i find out anything else. Its awful being regulated by labs isnt it?? Anxiety filled, at least for mom it is. You just start getting afraid that you are trying things out of desperation, which isn’t smart either. Ugh. Take care:)

  63. Hello Greg and everyone.

    Late stage 4 and feeling rough is the way I am, just gone through what GP said was kidney infection, but going again tonight to see a different lady GP….Hopefully get some answers.
    Take good care,
    Jim.

  64. Hi Greg and everyone else.
    I probably should have had a kidney transplant years ago, but never really had that bad a creatinine level. But you can’t always go by numbers you also have to be very accurate about your symptoms. I have many things going on like unstable blood pressure, autonomic neuropathy, have a gastric stimulator so absorbtion isnt always good I’ve had type I diabetes for 41 years. I had surgery in October to get ready to finally get a kidney transplant. My kidneys failed after surgery and they had to start dialysis. I have been on ever since. I just recieved great news that I am getting a kidney..I don’t do well after surgery (I’ve had 21 different surgeries, pancreas transplant that failed, removed entire large intestine due to neurapathy etc). So now as much as I don’t love dialysis I’m scared to death about the transplant and the anti rejection pills. Do you think I should just stay on dialysis?? I am no longer very active, but have a wonderful husband and amazing 15 year old son and huge loving extended family on both sides. I am only 47 and want to be active again. What should I do?? I’m scared, sick and perplexed, when otherwise very upbeat happy loving person!!!

    • Hi Molly. It is a difficult decision, one only you can make. The transplant surgery can be tough, as you know, but the key issue is rejection, which depends on the quality of the match. Check that out first. The better the match, the less anti-rejection drugs you will need iinitally and over the long term. In heavy doses they can knock you around and make you very sick. At 47 You are still young enough to handle most things, unless your previous surgeries have dramatically weakened you. While a new kidney will definately make you more healthy only you know if you can handle one more surgery. Good luck! Greg.

  65. My father is doing dialysis now and has been since the mid of Nov.
    I was just wondering if the light headedness is going to ease off or is it going to be an ongoing thing, it appears to come and go but especially after his run.
    Are they taking too much water off, I mean I know they are trying to figure out his dry weight, because he came in under weight and since put on a bit so it may be an up and down thing.
    As well his feet hurt especially in the big toe area, as well the swelling appears to be more dominant on the left side (in the ankle area and foot) when it is noticeable why more on the left?
    Why does he itch mainly where the joints are elbows shoulders fingers and of course the back down the spine?
    I know all these questions may seem over whelming but that is exactly how it feels for us at times as we search for answers. At times one wishes they understood the anatomy of the body so much better so that one could understand and answer all the whys.

    • Hi Teresa. It takes a while (a couple of months) to settle in to dialysis. During that time there are usually a few things that come and go as the changes take place within your dad’s body.

      The light headedness is probably related to a low fluid level, which can happen until the dialysis staff establish and stabilise his dry weight.

      With regard to feet, this could be gout. Gout is a common problem for dialysis patients, where recurrent attacks of acute inflammatory arthritis—red, tender, hot, swollen joints. It is caused by uric acid crystallizing around the joints tendons, and surrounding tissues. I have had gout for years, but it is controlled by drugs (non-steroidal anti-inflammatory drugs, steroids, or in my case, colchicine. Get your dad to talk to his kidney doctor.

      The itch is another symptom of a phosphate imbalance common to dialysis patients. It can drive you crazy. It can be controlled by phosphate binders (see http://bigdandme.wordpress.com/2011/05/29/dialysis-calcium-and-phosphate-binders/ for details). He may also find http://bigdandme.wordpress.com/2012/07/20/dialysis-scratch-that-phosphate-itch/ useful.

      Best regards, Greg

  66. How about constipation. By the end of the week (three times dialysis 4 hour runs) come the week end comes on the constipation. Could this be a symptom of to much water coming off, or the dreaded figuring out the new diet? As well do you have any ideas as to what can be causing the leg aches and hip aches. My father felt that maybe the more he moves around they would ease off but this …at the moment any ways does not seem to be the case…His nurse at dialysis told him today that those on dialysis do feel pains in and different ways with the body, Has anyone done any thing at home to help with the aches.Thank you in advance Greg for this sight and your dedication to it.

    • Hi Teresa. Constipation is a common by-product of dialysis. As you suspect, it occurs when your dad is constantly at his dry weight. Many BigD-ers take a mild laxative or structure their diet accordingly. Ask your dad’s doctor, I’m sure he will help.
      With regard to hip pain, sadly arthritis is also common for us. Anyone else have any comments? Greg

  67. Hello Greg
    My father has CKD from hypertension. His GFR reading is 12 which is getting scarey as I know people start dialysis around 15. Strangely enough he feels well. Doesn’t have any of the common symptoms of renal failure and all his blood work is perfect except of course the creatine levels etc that make up the gfr. Have you heard of this before? His nephrologist says he doesn’t have to do dialysis until he starts to feel sick?

  68. Hi there Donna!

    I am in your boat, so its probably not all that unusual. My mom who is insulin dependant diabetic has been hovering between 12 and 13 for almost a year and they haven’t started her yet. Probably because of the things you mentioned, that he is feeling okay and his other lab work looks pretty decent. Same with my mom. Shes not nauseated yet, her feet are holding stable (as far as swelling) and her other numbers aren’t totally horrible, except her anemia. She has had a fistula in her arm for over a year and they can’t believe she has lasted this long without dialysis, but so far so good. Every month is a blessing. Changing her diet has helped a lot I think.
    This is a great blog and will help and support you. Great people here:)

  69. I blog often and I seriously appreciate your content. This great article has really peaked
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  70. Hi… I started Peritoneal Dialysis (on the cycler at night) about 1 month ago. Prior to that I was on HD (with a catheter placed in my chest), for 5 months. When I was 21yrs old, I got a Strep Throat infection which in turn, affected my kidneys. I was told that I would have to eventually start Dialysis. I am now 38yrs old.

    I am very happy with PD. I connect at night (the machine does everything) and disconnect during the day. I have a pretty normal life.

    My only issue is that my hair is falling out at an alarming rate. Have you heard of this and do you know what could be the cause???

    My nephrologist has no clue why this is occurring. He wants me to see a dermatologist but I don’t get the point of that. It definitely has to do with dialysis…

    I read online that it may be due to low albumin or zinc deficiency… What is your take on this???

    Thank you so much for your time… This blog is amazing…

  71. Hi. My name is Therese. I’m 49 years old. I have reflex sympathetic dystrophy, which is the most painful disease you can have. It affects how your nerves work. It’s led to: kidney disease, horrible pain, diabetes, hearing loss and so much more. My Husband (my love, my support, my best friend!) and I moved to NC 3 years ago. We came back to NY (where his Mom and my family are) last year for our niece’s wedding. When I went to my Dr here (who is our angel!) he found that my potassium level was way off. He referred us to a nephrologist. We had one a long time ago but he wasn’t practicing any more, so we had to see a new one and we were very scared. Thank God he is PHENOMENAL!! He has carried us through this with professionalism and compassion. We knew that I’d be facing dialysis soon. A week and a half ago my BP was 245/135, They admitted me to the hospital and I was there for a week. I got out last Tues. Yesterday I went for bloodwork. and he called us at home and told Joe to get me to the ER because my numbers were way off. I didn’t feel good, as you say I fell asleep and woke up “in a fog” as you call it, and we all know how scary that is! We talked with my nephrologist in his office today and he explained dialysis and said I was ready for it. As soon as I came home I looked up a site with other people going through this. You’ve been a PHENOMENAL help. When i read your blog i felt like you were talking directly to me! We’re Catholic and very spiritual. But I’m ashamed to say that I’m VERY scared about all of this. I guess it’s the unknown. Thank you all so much for your messages, Sharing your stories has made a huge difference to me. And thank you to the author of the blog. It helps so much not to feel alone! Therese

  72. This blog is a godsend. My husband found out in October that he needs to start the preparation for the big d and kidney transplant. He went into complete denial and has now come to terms with it.

    I wish I could do it for him, but it is his cross to bear. Finding this blog helps me understand what he is going through.

    I am hoping he will join so he can see he is not alone.

    God bless all of you dealing with this.

  73. Maureen, what a wonderful post. You obviously love your Husband very much. You sound like my Husband and I. You also sound like you believe strongly in God. So do we!! You and your Husband will be in our Prayers. We too need SO much to know that we’re not alone. This blog IS a God-send, you’re right. I already am a little less frightened after reading it. Please post whenever you our your Husband need a friend! We hope your Husband comes on here, I truly believe it will help!! In our Prayers always! Therese

  74. Hi! Will exercise help your kidneys get any better? If you’re on dialysis will exercise help? My doctor says I’m on stage 5 but I’m not feeling any of the kidney failure symptoms should I start dialysis? Thank you for reading this can you please answer as soon as possible.

  75. Hi!
    Awesome and informative info and great stories!! I’m 29 and got diagnosed with ckd 10 months ago, from diabetes complications and am now at end stage and will start hemodialysis next week! I’ve read a few horror stories about people passing out all the time after dialysis treatment or feeling so washed out they can’t function!! Is this the case and can I avoid this as it sounds dreadful!!!

  76. Hi there my name is Jose Im a 43 Yr Old Male that recently started Dialysis. I started March 15, 2013. I was diagnosed with Kidney Failure on Oct 24, 2012 and was mainly in denial. Christmas came around and I started getting sick. By the time February 2013 came around I caught Pneumonia and had trouble breathing. Was pumped with Antibiotics and Steroids to help me breathe. March came along and I was healthy enough to start Dialysis. First week was horrible I had headaches, felt dizzy, disoriented, bloated and confused. I can honestly say that I begged GOD to please take me with him I couldn’t stand the side affects from Dialysis. All is good now I’m in my third week of Dialysis and I’m feeling a lot better, I even went bike riding with my Son tonight which I hadn’t done in months. In my case the first week felt like hell, the 2nd week I started feeling better, by my 3rd week currently I can truly say that I feel 90 – 95 percent good, It’s weird at times I couldn’t remember what feeling well felt like, now I do thanks to my Dialysis treatments
    Jose

  77. Thank you Sandra I finally told my husband I joined this blog. He wants to join as well. I am hoping you see his posts too

  78. Hey there, looking to investigate some skin cream/oil options. My father at times will get very dry itchy skin with being on dialysis. As we all know the body detoxes in a number of ways and one being that of the skin, and with having a diet that is made to limit his fluid intake we have found very few skin products that seem to work for him when these out breaks occur. Mainly fragrance free, alcohol free and usually an oil can work, but when it gets real bad it is hard for him to not scratch and than every thing can hurt. besides being on a wait for a call back for a dermatologist visit do you have any suggestions.

  79. Hi,

    My Dad’s been on peritoneal dialysis for about 10 months now and it’s been working quite well. His average UF output has been about 1400 +/- 150 ml during this time. But for the past month or so we have noticed a decrease in the output and it has dropped to about 900 ml.
    He is maintaining his weight and there seems to be no visible fluid retention. Do folks experience a change in UF vol with weather ? Where he’s living right, it’s peak summer with pretty high temperatures and it’s humid. Can the drop be attributed to the heat ? The doctor seems pretty ok with what’s happening, but Dad’s tending to worry quite a bit about this and is not too convinced.

    Thanks

  80. Hey there Greg and gang.

    Well we skated another month at 11 GFR. I really thought we had it….lol.
    But now we are on the phosphate binders three times a day (Renvela), which is fun because with food right? But then shes supposed to take iron three times a day with food as well, except APART from the binders.
    Come again?? lol.
    oh yeah and separate from the synthroid and norvasc, etc…..o that sounds easy….LOL. Especially since yer food choices are so limited anyway, mom doesnt actually eat 10 times a day, ha. I’ll just have to figure this out with a chart. Mom will hate me, I’m already the drill sergeant.

    But shes happy she skated another month so theres that:)
    He keeps asking her if she “wants” to start, and of course she always says “no”, and then he looks at me, looks at her, looks at me, looks at her…..
    Thanks for letting me vent:)

    Colleen

  81. How often does a person need dialysis? Can one work a job? Ski? Surf? Swim? Bike?
    What it you have no insurance. Are you turned away? I’m on state medical.

    • Hi Lee. Typically, most people need dialysis three times a week, for four+ hours per time – though some choose to dialyse longer for the health benefits. It is possible to hold down a job if you have a sympathetic boss and a flexible dialysis unit. Alternatively, you may choose to dialyse at home, which also gives you a lot of flexibility.
      Yes, I know many people on dialysis who do various sports, though mostly on their non-dialysis days, or early AM if they are dialysing in the PM. Most countries have a dialysis safety net, though not all. It is best to contact your health worker (or talk to your doctor) to find out the rules in your country. Hope this helps, Greg

  82. My dad is 67 with chf and renal disease. He has currently been in the hospital for a month..without much improvement. Doctor says because they want to get fluid off and keep his k and Na levels normal dialysis is his only option…my dad is very afraid and so am I..my dad right now gets confused..sleeps constantly..and shakes really bad…I hope this dialysis makes him feel better and be independent again…

  83. hi Greg
    I just read some of the things on your page, and I am wondering if you can tell me a little more about dialysis. My Dad is 74 and his one kidney worked at 7% when they got him onto it two weeks ago. After the first week he was very sick (he had his in his chest), last week was his second week and the Monday was bad because there were two days of no dialysis, but the rest of the week was ok. This week he is very sick every day. He does not eat very much and he is throwing up a lot or sleeping. He did have the operation in his arm and still receives his dialysis in his chest. Mum gave Dad a few items such as little ice cream one day and a small burger another day, could this be affecting him so badly, was it the operation or is he still just getting used to it??? They are now thinking of the stomach option, are they over reacting?? I am so confused, I do not know how to help them, besides learning how to cook salt less and dairyless meals which they can freeze. Jo

    • Hi Jody. I am sorry to hear that your Dad feels unwell after starting dialysis. However, it can take more than a couple of weeks to start feeling better, especially if you have been sick. Also, dialysis is quite a shock to the body, more so and as you get older, and it takes a while to recover. Hopefully, he will gradually feel better.
      There is nothing wrong with a hamburger (no salt) and a small amount of ice cream. All things in moderation. It is important that he eats something. He needs food to get the energy for each day and each session.
      The stomach option, peritoneal dialysis, has a lower physical impact, but there are other considerations (he will need an operation to insert the stomach catheter, and it is more prone to infection).

      If he can, it is worth persevering for another week or two and see how he feels. Just take one day at a time. Greg

  84. Hi all
    I have a real problem concerning my renal diet and recent dental extractions I have had!!

    I am on hemo and needed the extractions to be considered for a kidney/pancreas transplant but now I cant eat anything but soft foods or liquid meal replacements!!This is impossible on my fluid restricted diet and I cant just eat nothing cause I’m not allowed to lose any weight!!

    Has anyone been in this situation and can you give any advice as to what to eat?!!

    • Hi Mel. You are in a difficult position! If it was me, I would give myself permission to push the envelope here and there. Find some high protein soft foods like tofu, eggs, tuna mix (mashed tuna with corn, spring onions and mayo), soft cheeses like cottage cheese and ricotta, protein shakes and of course mashed vegetables. The key is to start small and to mix them up. Don’t focus on any one food. They all have phosphate and potassiun, but in small amounts you should be fine.
      I hope this triggers some ideas.
      Regards, Greg

      • Thanks Greg! Very helpful, I didn’t think about soft cheeses! I’m mainly eating scrambled eggs and Weetbix made with cream I’ve even been allowed mashed banana and ice cream which I would usually avoid like the plague!! Suppose every cloud, and all that!!
        It’s super helpful to bounce ideas around! Some times you can feel as if nobody knows what you’re talking about or really gets the issues!!
        Thanx
        Mel

  85. Good info. Hi there Greg, just wanted to say thanks again for the great service people like you provide here. You guys really are a GODSEND seriously. Hope you are doing okay in your life right now, and I just wanted to say thanks on behalf of all the people here. Take care.

  86. Hi there, Just a note to say I’ve found your site very useful and informative. I start my first dialysis session on Sunday and feel pretty good about the whole thing. Partly due to the sage advice yourself and others have posted.

    Kindest regards

    James Sneddon in sunny Edinburgh

    • Thanks James. Good luck on Sunday. It will take a few sessions to get used to it, but units usually start slowly and build up the time and pump speed as you can handle it. Regards, Greg

  87. Hi. I have been on dialysis for 2 months and everyday i feel horrible. I feel like all my energy has been sucked out of me day in and day out. Before dialysis, I felt fine with no symptoms. Now i feel horrible everyday. Is this normal for me to feel this way? Will this eventually get better? I just want to get back to how I felt before dialysis. Thanks for your advice.

    • Hi Jeremy. Feeling exhausted, weak and washed out are sometimes symptoms of not getting enough dialysis, or part of getting used to it. Even though you are sitting (or lying) through the session, having all your blood pumped through the dialysis filter over a few hours can be quite shock to the body. For this reason your clinic usually starts you off slowly.
      Still, after 2 months you should be feeling the benefits by now. Typically, you need at least 3 sessions per week each of about 4 hours in length. Small stature people can get away with less; larger people need more.
      If you are doing these times, ask your nurse/technician to check your dialysis adequacy (called Kt/V, which shows that patients are having enough wastes removed from their blood during dialysis). Kt/V should be more than about 1.6.
      If all this is OK, you may feel unwell because of some other problem.
      Keep at it. Eventually things will get better. Keep in touch and let me know how things are going. Regards, Greg

      • Hey Greg, thanks for the input. I asked about my Kt/V and it was above 1.6. What other problems could be going on? Good news is that I have an echo stress test to complete and after that i can be placed on the transplant list. My coordinator told me i would then have my transplant a few weeks after being placed on the list. Thats alot faster than i had expected. The said because it will be a kidney and pancreas and also my blood type thats why I am able to have it so soon. If you have any other suggestions of what to do so that i can feel like a normal person and not so wiped out day after day, that would be awesome. thanks.

  88. My son, age 31 just found out he is in renal failure. Last year in June his creatinine level was 1.8. He is hypertensive and overweight. Since finding this out I have been on many web sites and basically the doctor should have been doing a protein in urine test 3or 4 times a year because my son was a prime candidate for kidney disease.
    Now a year later he goes in for routine blood work and his creatinine is 2.6. He was in for a kidney biopsy yesterday and because of anxiety issues his blood pressure was running 180/130. They were pumping him full of blood pressure and anti-anxiety meds for 24 hours before they could get it down enough to do the biopsy.
    Now we wait for the results but I am sure that it was the high blood pressure. After the procedure my son’s blood pressure dropped to 115/75 but the doctor said when they got the pressure down to 115/75 (normal) then the creatinine levels went up (not promising).
    1. I don’t understand why this happened. I have been reading your blog and I would like to know how a person qualifies for PD. My son is losing weight but still heavy especially in the stomach would this stop in from doing PD?
    2. I have heard that hemo dialysis is much harder on the body and other organs. Is this true?
    3. How long does a fistula have to be in before using it?
    4. What do you mean by it has to heal before using it?
    5. How do some people get a kidney transplant before they even go on dialysis?
    6. What qualifies you as a donor?
    7. I’m not positive but I think a have a couple of kidney stones does that rule me out?
    8. For transplants are you saying it will take 8 months to 12 months do get approved?
    9. I only have one son and one daughter and my husband has passed away at 58 so we don’t have a lot of options. Also, I read that people who have type O blood take much longer to get a transplant. Why? I am O positive and I believe my son is too.
    So many questions! My son is not married and still lives at home. This has been a real shock to him and he has health related anxiety already. It comes from living with a father who also had it.
    Please help! I have already lost two sons in my lifetime and can’t stand the thought of losing another.
    God Bless
    Jackie

  89. Hi Greg,

    I’m 30 years old and I have PKD, I’ve had a transplant which unfortunately failed in January 2012. I spent a few months training to do haemo myself so I could do it at home (thinking that would make it much better) how wrong I was! I’m not sure if it’s my age and the need to stay active but dialysis is driving me mad! I get very fidgety and agitated especially when I’m on the machine and sometimes I get so angry when I’m on there I just want to smash the bloody thing up! My doctor wants me to do 16 hours a week because I’m a 6ft5 fairly big built bloke so I need more time on dialysis but I just can’t face it. I think I probably do 10 hours a week at a push. My blood levels are terrible with creatinine of 1500, phosphate 3.5 (apparently that’s the record in Cambridge hospital) and god knows what else. I feel like my life is slowly going down the tube with so much I haven’t achieved. I work 50 hours a week and I’m really starting to struggle. Any advice? You seem to know your stuff.

      • Hi Greg,

        Thanks for the post. Some good advice in there. Not sure about doing it in the unit again though. That’s why I opted for home haemo because I didn’t like it there, nobody talks to me and the chairs are unbearable, so I thought it would be much more comfortable doing it on my lovely big arm chair in my house, and at first it was fine. However, as time has gone on it feels like it’s taking over my life. It feels like all I ever do is work and dialyse, I have no life. Because of that my philosophy is ‘I would rather have a bit of a life now by dialysing less but not live as long than have no life at all by dialysing all the time but live longer’, it’s a no brainer for me. Plus, even though my blood figures are bad, I actually feel ok. I do get tired and my legs and my head always ache and I do get a hungover kind of feeling (usually on the days I dialyse) but otherwise I’m pretty fit.

  90. Great site! I start HD May 1st and having good and bad days following dialysis. All the comments here are helping me figure it all out. Hoping a transplant will be soon.

  91. If you are interested in preventing further kidney damage, you might want to check out an iphone app called RENALTOUCH or the ipad app called RENALTOUCHXL. It allows people with kidney disease who are either on dialysis or who may soon be on dialysis learn what they can do to improve their quality of life. There is information about 8 areas of kidney health to explore with a question and answer format to reinforce learning.

  92. Thank u for this message. I was diagnosed in 2002 with renal disease. I am now stage 4. I’m tired, itchy, stressed, an wish it was just time for dialysis so I can feel better. Thanks again, u made the big d not so scary.

  93. My 73-year-old mother is on the brink of starting dialysis. (She’s stage 4 currently.) She is diabetic, but she hasn’t followed a diabetic diet; rather, she eats a lot of fast foods and more desserts than she should. I’m wondering what will happen to her if she maintains this diet once she starts dialysis. Will it even work? Will it make her more uncomfortable?

    • I understand ur stress over ur moms diet, my family feels the same way. Although I don’t have diabetes, we r still supposed to stick to a renal diet, an I love fast food too. Salt is my enemy, an I love it!

  94. I am 38 and been on dialysis on and off for 10 years. I have unknown kidney failure. I do not have high blood pressure or diabetes. I’m reading all these posts some are true. You will feel a little better but your life will never be the same. I am miserable! My life will never be the same. Please don’t tell me to look at the bright side. There isn’t one!

    • Many people hate dialysis. But many accept it as just one more necessary aspect of life. Check out Shad Ireland. He’s a professional athlete and dialysis patient. No one says it’s fun. Just necessary. And to that end there are many, many ways to work with your medical team to incorporate dialysis into your life in such a way as to minimize the negative impact. This is what Greg does, and when we were first facing the Big D, he was a lifeline for us.

  95. I’m a 28 yr old male. I’ve had kidney problems my whole life. They were stable up until 10 yrs ago when I was told I had a GFR of 18% and that they were starting to deteriorate. 3 yrs ago I was put on the transplant pool and got a fistula in my arm after my function dropped to 13%. Since then, like in your blog, I’ve been fighting going on dialysis even though some days I’ve felt really crappy, nauseous, lightheaded etc, sometimes even vomiting! I’d always dread my check-ups 4 fear my levels dropped significantly.
    Recently, and unfortunately, they have done just that and I now only have a GFR of 5%. I’m due to start dialysis in the next week and i’m really scared! Up until now all I’ve heard is horror stories about going on dialysis, so much so i’d rather keep going as I am feeling unwell than start dialysis. It really is the fear of the unknown… what if I don’t feel better? What if I have major side effects? What if? What if? What if?!
    Your blog does give me some hope that its not all bad and that once I incorporate it into my life things will start to look up. One query I do have though, is it true that you are fit for nothing only sleep after a session because you feel so tired and drained?

    • Richard, I am sorry, that the dialysis is giving the classic side effects!

      Have you discussed with your nephrologist if you are a candidate for peritoneal dialysis!

      I have been on it for the past 5+ years and I am doing great, however not everybody is an automatic candidate, the treatment is easier on your body! You can self manage it and if you are lucky, sleep right through it! One of the things I did was to prove to myself that there was life after dialysis and my daughter’s dog and myself took a trip in the car for 4 weeks along the California coast line! Now that gave me confidence and a quality life, I needed
      I even kept up a blog, which automatically let people know where I was!

      Incidentally, if that would work for you, make sure you request a company called Fresenius! Their cycler, the Liberty is superior to the Baxter competitive model! Trust me on that, I have the facts! A year ago I was disgnosed with a type Glioblastoma brain cancer, requiring an operation at the National tumor Center at Duke and the fact I could maintain my cycler even 2 days after being released from the ICU! Proved a huge advantage! I could not have done that with the Baxter unit!

      I wish you the Best, but hang in there! One more thing, ensure that you work with your nephrologist (get a second opinion if you have to in getting the best surgeon you.can for the implant of the catheder.! This is very important, because you want thr catheder located in an optimum spot in side you! The procedure was done on an uoutpatient basis, while I was placed under and did not cause me any problems! I just have a short little tube sticking out of my belly,nwhich I have to keep super clean! My wife, thinks it looks a bit sexy on me, but shhas been super supportive, which you need and assists me in the evenings and mornings with the hook ups! You can also get a special belt,, which has a sleeve and holds the loose end of the catheder in place!

      Best regards,

      Peter
      p.s. Don’t stress out too much on the GFR. I found out that your kidneys can overcome quite a bit.

      When they gave me very strong steriods for the brain cancer and I turned a classic moon face and my creatine jumped over 20! I syopped making urine or “golden rain as the doctor’s called it, once the took me off, my kidneys made a come back! I also feel that my daily dialysis was one of the reason for the recovery.

      • Hi peter. I think you may have mis-read my original comment. I am not on dialysis. My doctor says I will have to start within the next week. I currently feel unwell alot of the time but my point was that I’d rather carry on like this than start dialysis cause i’m afraid of the unknowns…how will my body react etc.

      • Renagel and others like it will bind the harmful phosphorus the kidneys cannot process and excrete the natural way! I experienced some of your symptoms, incl the GfR values and once placed a rigid treatment pattern of these binders, man what a difference! I could immediately tell, that my kidneys were being helped and I felt like night and day difference almost immediately!

        I took two Products, Renvela was the other! They are not cheap or your doc feels otherwise, but my insurance covered them! In the case of Renvela, the manufacturer pitched in with some kind of grant! Make sure you discuss it with your nephrologists financial specialist! They know how to download the necessary forms, which your Pharmacist provide you with the discount! I am going through with a product called Avastin, a novel drug, costing about 60 Grand per treatment! Good Luck! As I said it had instant results, but keep in mind every body is different, but it is a step to try at least!

        Hang in there, sometimes you just have to double check on your own! Greg my mate, Keep the blog going! Great information!

  96. Hi peter. I think you may have mis-read my original comment. I am not on dialysis. My doctor says I will have to start within the next week. I currently feel unwell alot of the time but my point was that I’d rather carry on like this than start dialysis cause i’m afraid of the unknowns…how will my body react etc.

  97. I just want to say thank you. I start dialysis next week and ive been really freaked out. I have one kidney (left removed in 2003) and im at 9% function. This page & everyones post made me feel better and not so terrified.

    • It is a very hard adjustment but it can be done. This is my second time on dialysis and it still hard to get use to. But my husband and my son are very supportive. Especially my husband!

      • I had my first session today and I had a little issue. I had 1/2 hour left and all of a sudden my entire body was cramping. Like a head to toe Charlie horse and just drenched in sweat. Has anyone else had that and if so any suggestions on how to prevent it in the future? I’m thankful that my boyfriend and my family are so supportive I don’t think I could do this on my own. Also, thank you all for sharing and helping people like me!!

  98. I have had Chronic Kidney disease since I was five now i’m eighteen. My kidney’s failed just three months ago, so I have been on dialysis for three months. I use to wrestle and my senior year was harsh I felt so bad I would lose almost every match cause I was so tired all the time. My coach was always mad at me cause I went to state my junior year and could barely beat a freshman my senior year. Now that i’m on dialysis I feel much better could wrestle a bear! But unfortunately my doctors and nurses would not approve. Does anyone know some good fundraisers I could do to pay for all this?

  99. Hello!
    I had my first kidney transplant at the age of 13 and I managed to avoid dialysis. I am now 29 and my kidney has failed; I am awaiting (hopefully) my next transplant but will start dialysis on Monday. I’m getting an access in my neck as I prepare for dialysis and plasma treatment for before and after my possible incompatible transplant. “Scared” doesn’t begin to cover it perhaps because I managed to avoid the dread of the D word the first go around. Does anyone have experience with this plasmapheresis? I know absolutely nothing about it, but I would imagine that it’s similar to dialysis, no? I’m not a big fan of searching these questions on search engines as they’re often times more scary than reality. I appreciate your blog, it’s helped to put my mind at ease during this crazy time.
    Also, Greg, I used to live in Sydney during a semester of college! I love Australia! I’m now in the states. I hope to go back some day :-)

    • Hi Anna and welcome. I have had several plasma exchanges, a couple after each transplant. They are designed to remove antibodies and thus stop or reduce rejection. My plasma exchanges were very similar to dialysis: using two needles, blood flows from the body, plasma (containing the antibodies) is extracted from the blood and discarded, replacement plasma (with no antibodies) is then combined with the blood and returned to the body. During plasmapheresis the extracted plasma is treated to remove the antibodies then recombined with the blood and returned to the body.

      I found the treatment no different to dialysis. I was unwell when I had my treatments, so I can’t say whether the procedure affected how I felt (but I don’t remember feeling any worse!).

      Good luck with the transplant. Next time you come to Australia, come and check out Melbourne too!
      Regards, Greg

  100. Hi Greg.
    I just thought I would share my experiences with kidney disease.I was diagnosed with Polycystic kidney disease 8 years ago now and have had a fistula in my upper arm for almost 2 years . The first thing I noticed was my inability to concentrate. As an artist I found this the most frustrating thing. I’m currently at 7% function but I have not started dialysis yet, but it just a matter of days till I do.
    I have only a few symptoms and the waiting to start has been stressful.
    Can I expect any of my previous concentration and/or motivation to return or would it stay about the same as it is now.
    I know I have little choice about dialysis but as they say I can’t worry about things that I cannot change.
    Thank you so much for this blog .It helps so much to read other peoples experiences, their hopes and their fears about kidney disease as it reinforces the feeling your not alone in feeling the same things.

  101. hi, my mom has been on dialysis for about 12 years she had valve repair surgery on her heart and she is doing well.. i hope she gets better because im the only one that takes care of her and i would feel soo horrible and sad if something happened to her…hopefully soon shell get her transplant but i hope it helps people understand that you can live for a long time on dialysis im hoping my mom live till i’m 60 that’s 30 years from now but if god allows it i would be very greatfull

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