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.
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
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.
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
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
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?
Are there any alternative treatments also
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
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!!
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.
Pingback: 2010 in review | Big D and Me
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.
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
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.
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
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?
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
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
I see people talking about percent of kindney function…how do you get that %?..My Creatinine is now about 4.0 and my GFR is 15.
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
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
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
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
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
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.
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???
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!
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
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.
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
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
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
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
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?
How do you survive financially. I will have to quit my job. I support myself.
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
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!
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
Thank you for your reply Greg, I’ll definitely let you know once I started on bigd
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
Glad to hear you are feeling better about you new fistula Kathy. Good luck and keep in touch! Greg
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!!
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