I’d be perfect if not for two missing kidneys.
Hi, I’m Greg Collette and I write the BigDandMe blog, about living with dialysis from the recipients’ viewpoint – yours and mine. I have been on BigD for 23 years, off and on, and I’ve learned that regardless of changes in technologies or practices there are some fundamental actions that anyone can take to live well on the BigD.
I started this BigDandMe blog on Easter Monday, 2009, to help other normal people whose kidneys have let them down (“kidney failure” is so judgmental!) deal with the daunting prospect of dialysis and transplant.
If you have just joined the BigD club, there’s much you’ll want to know: what to expect, how to stay healthy, actions to take to win back your life, what’s happening in the world of dialysis, stem cells, kidney transplants, and much more.
So check out BigDandMe: there’s a new post every few weeks.
In the other part of my life, I’ve had my own business for 26 years, working first as a technical writer, then as a knowledge and business process management consultant. I’ve had two transplants, and I returned to the BigD when my last transplant failed in November 2008.
I dialyse at Diaverum at Diamond Valley in Melbourne, Australia.
To contact me, please email greg.collette at gmail dot com.
The content in this blog licensed under a Creative Commons Attribution 3.0 Unported License.
Big D and Me 
Greg, Like you I have I also have Renal failure and have been on Dialysis for almost 4 years. You website is a very helpful reminder about how important a positive attitude is when on dialysis.
I now go to a gym 2-3 times a week and lead a “normal” life. I spend 3 hours a day (on dialysis) looking after my health and the rest of the day I can do what ever I like.
Thank you for sharing your experience with the rest of us.
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Greg,
You are an inspiration to all on Dialysis, keep up that great attitude, so nice you are sharing it, I will pass this on to the Big D person in my family too!
Truly amazing…
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Hi Greg
I love your site. I started on dialysis about four months ago and I am doing it at home. I still have fairly good residual function so I am only doing three hours every second day. I get up at 3.00am in the morning and I am done and dusted by 7.30am and on with my day.
I think I make the dialysis fit in with my lifestyle rather than the other way around. It is great doing it at home. I am really well right now and for that I am grateful.
Thank you for sharing. It is really terrific you have gone to that trouble to support people like me. xx
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Thanks for your comments Cindy. It’s great to hear that you are doing so well so quickly. Keep well, keep going and keep in touch!
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Hi Greg,
Im a nurse at the new North Melb Diaverum, LOVE your blog, will be recommending it to all our clients and nurses. Great information, you are doing a fabulous service to the ‘renal community’.
Jen
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Very informative, Greg. I am envious of your great information and research. I’ll be following.
Rock on.
-Jason
http://ineedakidney.wordpress.com
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I went on hemo march 07 following open heart surgery.Went on manual home after short hemo.I finally had too many infections (the catheter becomes infected and has to be replaced). Iam back on hemo. I have had 2caths installed and removed from my abdomen. I had a fistula which was ruined by a pacemaker which created scar tissue in the wrong place. I have also had 2 shoulder caths installed and removed. I now have an implant which is working great. It has allowed me to go from 4 hrs to 3hrs and 15 mn. I am fortunate not to have diabetes. I eat eggs almost every morning to help keep my protein level up. I eliminate orange juice,bananas, tomatoes and potatoes. Sometimes I splurge a little on these as long as my figures stay within bounds. I keep my phosphate in bounds most of the time by watching milk products, chocolate, nuts and dried beans. I take two binders after each meal and three if eat say dried beans. Extra binder for snacks. I know high phos can cause itching and I may be into that a little now. I need to know if phos itch is accompanied by a rash.
Thanks Jim joyner
Peoria Ill
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Wow Jim, what a ride you’ve had. A tough mix of heart and kidney problems. Thank goodness you and your team persisted, and your implant is working for you now. Do you know what kind it is or what it is called?
Your diet sounds a lot like mine, a mix of being good and enjoying yourself! Whatever works eh? Yes the itching can be a real trial, but strangely enough, I have never had a rash where it itches. If you have a rash, it may be something else.
Great to hear from you Jim, keep in touch.
Greg
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Greg,
I feel I had one of the best surgeons for open heart here in Peoria. And perhaps the best renal surgeon around. No problems at all.
I don’t have rash with the itching I now have. So it might be Phos. Jus trying to distinguish it from a rash that I had for nearly a year. The dermo doc did pathology on that and never came to any definite conclusion. A note on the pleasant side: I played my harmonica at dialysis yesterday.
I get dialysis at Fresenius on Main Street East Peoria, IL. If you are wondering I am 84.
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Greg, inviting those who wish to visit my blog.
Jim Joyner
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Hi Greg
I am living in Hong Kong, to be closer to my grandchildren. My son-in-law was diagnosed with CKD -iga nephropathy in Dec 2008. Unfortunately the disease progressed quickly and he is at the end stage of CKD and due to have dialysis etc. He would really appreciate to speak with another guy who is positive like you and to share some of his feelings, and ask questions. Can he contact you by phone and have a chat with you from HK? He is a New Zealander, and we are from Melbourne. Thank you
Judy
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Hi Judy, thanks for your post. I would be happy to have a chat with your son-in-law. Ask him to email me at greg.collette@gmail.com and we can arrange a time.
Regards, Greg
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Greg,
I am living in Singapore. 8 years ago I donated one of my kidneys to my wife, Wendy. She recently had a lung infection which affected adversely the functioning of the one kidney she had from me. In the hospital she had to go through dialysis. The doctor has told us that she might have to go through it for the rest of her life. We are actually giving to go for her first one post hospitalization, and hope and pray that after 2 weeks her kidney will resume normal function. I found your blog when I was searching for a dialysis centre in Gold Coast QLD that we might have to visit in the unfortunate event that the kidney failure does not reverse. My questions here are do you know of a decent dialysis center we should check out at Gold Coast, and what are the considerations we should address for a second transplant ?
You are truly an inspiration. Take care.
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Hi Teck Soon, thanks for your post. The hassle with anti rejection drugs is exactly what happened to Wendy: you catch anything that is passing. I am very sorry to hear it and I hope it works out ok. Sometimes transplant kidneys can be quite resilient.
About the Gold Coast BigD Unit. The one most people here go to (and think is pretty good) is the John Flynn Dialysis Unit (part of the John Flynn Private Hospital). The details are:
The John Flynn Hospital Dialysis Unit
42 Inland Drive
TUGUN, Queensland 4224
(or PO Box 1 at the same address).
Email: dialysis.jfp@ramsayhealth.com.au
Phone: +61 7 5598 9174
Fax: +61 7 5598 9195
Regards and have a good time, Greg
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Kia ora Greg,
Awesome blog! I joined the Big D Club four months ago…..it’s good to learn about your journey.
Being a newbie to the Club, your information & research have been very helpful to me.
Naku noa,
Shaun
NZ.
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Thanks Shaun, good to hear from you. Keep plugging away…
Greg
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What a great discovery to run across this blog while researching dialysis. I’m not a member of the “club” yet, but both my heart and kidney doctors have warned me it’s coming. Considering I have diabetes and congestive heart failure, I’m apprehensive, but will do what I need to to keep on plugging away. Your insightful and humorous, but information posts help sooth some of my anxieties. Thanks!
gary
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Thanks for your post Gary. Everyone is anxious when dialysis becomes a reality. But it doesn’t take long to settle in, and to realise that it a treatment this gives you the rest of your life back. Good luck and keep plugging away. Greg
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I have been on dialysis 3 years plus-2 of those three years was on manual CAPD I was doing so well and so happy about it that I slipped up and had to go back to hemo. I want to warn those on capd about the neccesity of using sanitary conditions Please know what and how you have to do it. You have to be diligent about this at all times and if you forget something please contact your nurse at the first possible chance. When it comes to peritonitis three strikes and you are out.
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Thanks for this timely warning James. Infection is the biggest drawback with CAPD. Most people only use it as an interim treatment (1 to 3 years) , maybe waiting for a living donor transplant, while the donor does the workup. Haemo is a little more intrusive, but statistically, much safer. Greg
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What an awesome blog! I’m especially interested in hearing about folks who have done long term CAPD or CCPD and can would some success stories. Best, LuAnn
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My dear friend, Greetings! It is nice to know about alternative kindney, please let me know more about? Thank you!
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Remember that a good positive attitude is really helpful. While you go thru hours of various stages of discomfort just remind yourself of the fact that you are still alive is a god given process.
I had a friend who went on CAPD from the start and was on it 11 years, dying at the age of 85..
Another success story is a man I met who was on hemo and had been for 25 years. 3 or more years seems excessive you may be just getting started.
I haven’t updated my blog in a long time but but welcome those who might like to visit.
http://picksandpicks.blogspot.com/
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Hi everone. I am only three sleeps away from my next caravan trip. We are heading borth to warmer climes, getting as far as Hervey Bay. Follow our bloggs at http://www.bugbitten.com/blogs/petergibson/my_blogs.html See you there. Peter
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I am reading everything in preparing for my husbands need for dialysis. He’s in his mid 50s, diabetic, works full time***, feel good but the creatinine gets high. Do people still work regular jobs? I don’t see much questions about this. We will need to prepare … Emotionally and financially I fear.
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I was retired when my kidneys failed so I can’t answer your question about working full time. I can tell you this: I’m almost certain you can find out about if you call your local dialysis center and contact the social worker there. I would probably be right if I said all the centers have these. They also have a kidney doc that not only watches my dialysis but also attends to anything else I have wrong and also a nurse practitioner.
In one of my last replies someone asked about my implant. No name as far as I know..It is actually a piece of tubing in the form of a loop (about 4in.) that is connected to an artery on one and a vein on the other. It worked real well and I got my on time shortened some. A needle goes into each side. That’s 6 needles a week 352×6 a year they used it more than a and then had clean it out. I was only on for 3 hopurs for a while and had to up it to 3/1/2.
I’ve thought of home hemo and would like to learn more about it
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@Karen,
I worked full-time while on dialysis, usually about three hours during, with a rest during the last hour. Had my laptop and a phone I could tether the laptop to in order to access the Internet (the clinic WIFI was terrible).
When I started initially, I was on second shift (10:30-3:30); only a few people worked, either during dialysis or at an office. When I moved to mornings (5:30-8:30 am), nearly everyone worked, going into the office after dialysis.
It’s a long day, but certainly possible, if your employer can be flexible with schedules and time off for doctor’s visits.
Gary
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Hi Greg,
I’m a writer and I got the idea for a book about living with dialysis and the wait for a transplant without realising quite how difficult it would be to write as a narrator who experiences dialysis and the effects of it every day.
It’s one thing to know all the facts, but it’s a real struggle to sound convincing as a dialysis patient- obviously there are so many little things that you learn over the years, and I found it hard to find a website where I could learn this “inside knowledge”.
Your blog has been so helpful in researching everything I need for my story to be (hopefully!) convincing, so thank you so much for sharing your experiences, they are very much appreciated here.
All the best, Jess 🙂
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Thanks Jess, I’m very glad to have helped. Let me know when you launch! Greg
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Hi Greg,
My Mother, 62, a diabetic for the past 10 years, 6 years on insulin, suffered Hypoglycemia three weeks back. Her creatinine started to spike with potassium, at their peaks Creatinine went up to 5.1 and potassium to 6.5. Now after two days of fluids in a hospital, her creatinine levels dropped to 4.8 and potassium under normal range 4.5.
Initially, doctors at her current hospital were advising Dialysis, three times a week, life long, but after talking to the head of Nephrology, they said she is responding well to medicines and tests, but sugar levels are fluctuating 100-300. And they will decide in 2-3 days for dialysis.
However, when I talked to doctors at AIMS (All India Medical Sciences), they said they don’t advice Dialysis for patients with constant creatinine at under 5, and suggest decreasing it by food control , diet and medication. Even if Dialysis is done, it will be maintenance one, not thrice a week/lifelong.
These are the questions I have:
1) Dialysis is needed at all? If Creatinine keeps on dropping slowly, even then Dialysis would be required?
2) If Dialysis is needed, then it will be periodical, lets say monthly or twice a month, once in two months OR thrice weekly/lifelong.
3) Kidney replacement for her is an option? She has diabetes.
Greg, I need your advice ASAP, as my mother and my family would not like to opt for dialysis and would prefer to keep her Creatinine levels down with strict diet, and medication, Yoga and meditation.
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Hi Vivek. I’m not qualified to answer you, but I will ask a friend who is and get back to you. Greg
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Hi Vivek. I have spoken with two very experienced renal nurses, and they think as follows. If your mother was in Australia the doctors here would probably agree with the doctors at her current hospital and recommend that she start dialysis.
The research shows starting early is better than later, especially if she has kidney failure symptoms, where she feels unwell. If she has only minimal symptoms she may be able to be monitored for a little longer, but they recommend an earlier start. What are her Urea and E-GFR numbers? They are usually a good indicator of how immediate the need is.
If it is available and she has few symptoms, perhaps she could begin by dialysing 2 days per week. As her kidneys fail completely, the number of days will need to be increased (typically to three days per week). Periodical dialysis is not an option.
A kidney replacement is an option, but its availability depends on the cut off age for transplants in India. If you mean a transplant from a live donor, the preparation in Australia can take 2 to 6 months. Diabetes is not a barrier to kidney transplantation.
I hope this helps. Of course these are opinions based on experience. You should be guided by her Nephrologist or ask for a second opinion.
Good luck and regards, Greg
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Thx a lot Greg
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Thx a lot Greg,
I just had a talk with Nephro, he said Dialysis is not required at the moment as Creatinine has dropped from 5.3 to 4.3 in 4 days and looks like improving further. Urea has dropped from above 200 to 150 and they said kidney has 15 pct function remaining.
Doc said they are treating her for the infection in kidney, which was an CUTE infection when she was admitted to the hospital six days back. The reason why creatinine dropped 20 pct in 6 days, because she was severly dehydrated with infection, so after hydrating her and clearing infection, creatinine levels dropped.
She may be discharged in a day or two, with even lower creatinine levels, or a constant number of under 4, I will write to you again with the discharge summary. Thanks for your help Greg, it means a lot to me, you are the guiding light for most of us.
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Hi Greg, Mom gt discharged with CKD of 3 from 5 :). Apparently, there is a term called “acute on chronic” where the acute impact can be reversed to the baseline which was before the creatinine gt spiked. Almost 30 pct of the people of CKD suffer from it, BUT if a doctor conducts a dialysis on these types of patients in a haste, then the damages could be permanent. My Nephro was quite knowledgeable on this front and which helped in not doing the dialysis, at least for now. She is on Ivanz injection for 10 days to remove infection plus insulin.
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Hi Vivek. That’s great news, and some very useful info. Keep in touch. Thanks and regards, Greg
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Hi Greg, Im so glad I run into your blog and found so much info for dialysis especially travel dialysis. I started hemodialysis for almost two years now, when my age 30, now I’m 32. Doctor said my kidney getting worse because I had iGA NEPRITHIS or they call me iGA’ian. I can’t accept my dialysis life at first, especially when I need to bear the pain everytime they use the biggest Avf needles at my hand…but slowly I can build strength and be strong about it. But I still thought that travel is impossible till I read your blog. I’m thankfull to you for show me some lights in my darkers hour.
I hope I can use your blog for my info to travel the world. Who knows if I got a chance to be in Melbourne. You might help me to which center I should go.
Again thank you
With lots of Love,
rosdylia
Kuala Lumpur, Malaysia.
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Hi Rosdylia, lovely to hear from you! Coming to terms with dialysis is not easy or pleasant and I am very pleased that you are doing so well. You sound very positive and strong!
Yes, travel is next. Take it slowly, try travelling locally first, to get the feel of being away from your home unit. Every unit is a little different and it helps to have an open mind. Preparation is the key to successful travel with each unit exchanging information about you just before you leave. It would be very nice to meet you one day at my unit in Greensborough, we often have visitors from Malaysia. Warm regards, Greg
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Hi Greg!
My name is Brielle and I have been on dialysis for 22 yrs. I started dialysis when I was just 13 years old. I came across your site while I was doing research on the artificial transplanted kidney. I love that you have a blog about dialysis and living your life to the fullest:) I strive to do the same and not let dialysis hold me back. I hope one day in the near future that the artificial kidney will be an option for Big D patients:)
To Your Health,
Brielle:)
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Hi Brielle, great to hear from you. I’m with you: the artificial kidney can’t come soon enough! There are several research programs on the go, some using small artificial filters driven 24/7 by small batteries, others are based on stem cell technology. I would prefer the stem cell version – less artificial and less subject to breakdown – I hope! Let me know if you hear anything. Keep in touch! Best regards, Greg
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Hi Greg
Thanks for blog!!!
We are looking at going to China for 8 weeks, I read your unfortunate experience and wondered if you had had the opportunity to eventually get to Peking Union Medical College Hospital in Beijing? We would really like to know if this is possible.
Thanks Kylie
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Hi Kylie. We have decided not to go to the Peking Union Medical College Hospital. Some Chinese friends of ours prefer another hospital, and we are talking with them now. All seems OK and I will let you know more are time goes on (our travel date is 1 May!).
Regards, Greg
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Greg that would be great and much appreciated. Our 8 year old daughter has been offered the opportunity (for 2 weeks) to go to China as she has been learning Mandarin for 2 years. We are considering going over and living there for 8-12 weeks, this would really boost her listening skills and be an amazing experience. So as like you if we can sort out our obstacles – we will be able to make it happen. Looking forward to hearing how you go. Thanks again.
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Hi Greg,
Just came across your blog and love it. I have been on dialysis for about 16 years. I have Alports and 2 of my 4 brothers have it. I lost one of them when he was 24. My other brother has been on hemo for 26 years. I was on for about 5 years then had a transplant spent 2 months in the hospital rejecting but finally it ended up working, Had it for 5 years, then found out I was pregnant. The drs. told me to terminate but I couldn’t do that. They ended up taking my daughter at 29 weeks and I did lose the kidney but I got a beautiful baby girl out of it. Went back on for another 5 years and had another transplant but the antibody I have attacked it and it was 6 months of hell. So, have been back on since 2006. Lately, I’ve been having a hard time getting my fluid off. This seems to happen to me once or twice a year. Crazy thing, pressure drops so low I come off heavy. I was wondering about the foot detox pads you mentioned. Where do you get them?
Keep up the blog it is fantastic!
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Hi Beth, thanks for your comment and your story. Life can be very tough, but fortunately not all the time. Congratulations on having your daughter!
Sometimes things are easier and more stable on dialysis than with a transplant, especially with the combination of rejection and all those damn drugs.
I don’t remember writing about foot detox pads, but if you discover something, please let me know.
One option to keep blood pressure up is the suck ice throughout the run. Not great chunks, but slow and steady. It worked for a couple of people in my unit.
Regards, Greg
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Greg,
This is Brielle Gazzara and I wrote to you several months ago. I love reading your blogs!!! I wanted to comment on Beth’s comment about low blood pressure and having fluid on. I take a whole food supplement that is low in potassium and phosphrous. It’s called Vasculin and it’s made by Standard Process. I have been taking it now and then when my bp gets low and it works great. It is made from food so it won’t react with any other medications:) you can read more about it on standardprocess.com , maybe this will help some patients out. It had helped me:))
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Hi Brielle, many thanks! I will check it out too. Regards, Greg
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Hi Greg and Brielle,
Thank you both for the info. One question, the Vasculin helps to keep your pressure up while on treatment? Do you take it before you go or when you are on? I will try that and the ice.
Sorry Greg, I thought you wrote about the foot detox but it was someone else. I’m so glad you have this blog. Being on so long I’m usually the one with the answers but glad to know there’s more to learn.
Thanks Beth
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Hi Out there. Since I don’t have high pressure they put me on a drug called Midodrine 5Mg. It helped a lot and how I don’t have to wait to go home.
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Hi Greg – I just found your blog tonight (restless legs keeping me up) and want to let you know I like your style and your positivity. Like you, I discovered I only had one kidney right at the time I needed a spare… renal cancer in my case.
I just got the all clear on my cancer this week, so the BigD is all I have to worry about now. I’ve been dialysing for 15 months, and tbh I think so far I’ve been lucky. But these jiggly limbs drive me crazy.
Love the blog, keep up the great work!
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Greg
A good word for all those on dialysis After 5 yrs. on dialysis, I am now 87.Do as much as you can to stay busy.I play guitar and harmomica and also I’m learning more on the piano I hope I never have to stop learning..I’ve started Painting again though I’m not a pro. I’ve just finoshed a painting of the USA flag. it is large and neatly done. Just to have more to do and to see how it would turn out.
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I am so glad i found your blog. I just told my mom all about it. She is getting ready to start dialysis shortly and i know she will get a lot out of reading your story.
Thanks
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Hi Greg,
I am studying Bio-medical Engineering and I have to do a report on Hemodialysis next week. Your blog is great and really gave me a good perspective on the lives of people who have to live with BigD, you nearly had me crying at times.
I hope engineers(future me) can continue to development technology that can help people like you to live a more comfortable, normal life.
Good luck and thanks for being such an inspiration.
Regards,
Hein
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Hello Greg,
How are you? 🙂
I too live with the “big D”. I just started a blog about my experience and I’ve love to share it with you. http://www.karennicolesmith.wordpress.com
I am following your blog now and I think what you’re doing is amazing!!
Best,
Karen Nicole
(Canada)
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Thanks Karen, I will have a read and come back to you. Greg
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Thanks, Greg!! Happy New Year. 🙂
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Hi, Wow great blog!!! So interesting to see people from all over the world making great comments. My sister has been living with ESRD for two years now. We recently published our first cookbook for kidney patients and would love to share this with you.
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Thanks Lorraine, I will check it out! Greg
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Hi Greg,
I am a Hemodialysis RN in an acute care setting in the US. I am doing research for a HD information presentation for new, critical care RN’s when I ran into your site. I think this is wonderful! I am sure your site has been a great source of information to many people who have found themselves confronting “the Big D”. Thanks for your effort!
Tim Martin
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Hi Greg, I came across your blog after googling info about dialysis. My 69 y.o. Dad just started HD a few weeks ago and isn’t bouncing back as quickly as my mom has hoped. But I’m trying to explain to her that everyone is different and responds to treatment differently. I’m going to show her your blog to reassure her that there is “life after dialysis”! She and my dad are complete opposites (physically, health-wise and personality) so I think the way SHE would approach her treatment is completely the opposite of how my dad’s doing it!
I was reading some comments and its a little more assuring to know that my dad’s not the only one going through this. And I think showing your blog to my mom will help manage her expectations a little as well. Thanks for sharing your HD experience and I’m looking forward to reading more!
Cara, from NJ
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Hi Greg,
Thank you for sparing me the huge effort of starting and doing just what you are doing here. Otherwise I was in the process of relating experiences with dialysis.
Had to chuckle at some of the things written , as I’ve gone through many of the same experiences. Of course those experiences are laughable now, but at the time were a real pain in the ……
Will be back to fill in some things I’ve been through.
Again, splendid job of detailing as you term it, the big D
Be Well
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For unknown reasons, my fistula vein, has decided to dance around to avoid getting the needle.
HA.
Exactly what I don’t want.
Stop the dancing vein, and allow those two needles, that look much like night lamp posts that line the streets here in Chicago, Illinois. Nah, I know those needles are much smaller but they feel like lamposts going into the skin and vein.
So online I go to add to my ‘given’ instructions about exercises for the fistula. If my veins had been in other than good shape, it would have been a ‘graft’ put in the forearm.
More on that another time though.
There is conflicting information on ‘when’ and ‘how’ to do fistuila exercises.
After some confusing trial exercise periods, thought it best to use plain common-sense.
(Oh, has been well over a year and thought all was well.)
But the dancing vein has changed that picture.
Sooo anyway what I”m doing now is:
Tourniquet on the forearm just ahead of the elbow.
(Instructions called for above the elbow.) My way give more pressure on the fistula vein.
Squeezing a special exercise rectangular tube (it allows the finger tips to touch when squeezed)
I do 20 squeezs-50 s-75 s- 50 s- 20 s with a brief pause between each number of squeezes.
I them use a set of bands (from the dialysis center) looped and tied together to perform wrist lifts,
much the same as the ‘squeezes’.
Pause a longer time and repeat the process.
Yes my fingers find it very hard to squeeze when the 75 s, is reached.
This exercise would of course vary for each person.
Some will be higher, some will be lower in squeeza.
For me this seems to be the way to go as my forearm and fingers feel the rep exercise strain.
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Hi Greg,
Thanks so much for your words of encouragement. I am 32 years old and recently diagnosed with the collapsing form of FSGS. The doctors have not found a cause. RIght now I am in the prednisone/cyclosporine treatment stage, however most information that I have read states that this is an aggressive form of FSGS which can quickly lead to dialysis. I am also a nurse, so you can imagine all of the horror stories I have seen as I rarely see dialysis as it goes well, only when it goes wrong. I have saved your site as a favorite to keep up to date and as a reminder that this is not the end of the world, although it sure feels like it right now with 2 small boys to chase after. Thanks again!
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Hello Readers,
Been doing my exercise routine, and while I don’t see any dramatic improvement, the dialysis technician seems to see an improvement in what she is looking at.
Missed, one day, putting on the ‘numbing’ cream on my fistula area. Almost was ‘not’ going to allow a hookup due to my apprehensions of ‘painful needle insertion’. Decided to try anyway. Ha, while it did sting badly, it was not as bad as I had perceived.
Ha, funny how one’s mind alters reality.
Due to having lost weight while in the hospital (year or so ago) and wanting to regain that lost weight, proved to be a challenge with what is called ‘dry’ weight at weigh-in time on dialysis days.
Doctors just didn’t want to believe that ‘all’ weight gain was part muscle or whatever, and normal. Nope, to the doctors it was a’’ ‘water’ gain and has to be pulled out with dialysis.
Needless to say I was completely’ wiped out’ .
Ah, and this is important, ‘completely wiped out’ an hour ‘after’ dialysis. Mind you, an hour after I got home is when the low energy depletion hit. POW completely wiped out.
When I complained to the doctors about this energy depletion they couldn’t understand it. Then I realized where the miscommunication was. Normally I was asked ‘how do you feel’ after dialysis was over. Feeling ok is what I would respond with. True at the time, but not true an hour later.
So now entered true, weight gain, versus ‘water’ gain, for dialysis machine setup, for new ‘dry weight’.
As I regained the lost weight, it was a constant battle to get the doctors to adjust the dialysis machine to the ‘new’ dry weight. Have a new doctor now and the new dry weight adjustments are more readily achieved.
Pulling out wallet, keys,etc, and wearing much the same weight clothes for weighing in on dialysis day is a must. Otherwise too much is ‘pulled out of you, and one starts to feel ’not good’.
Even while on the dialysis machine, any change in vision, or body sensation shoul / must be called to the technicians attention.
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Hello Greg,
hope you’re feeling well. I found your blog while searching for holiday dialyses around the world, especially Bali. I’m 46, have ill kidneys since I was a little boy. First dialysis at 16, first transplant at 17, second transplant at 19 and third (from my mom) at 37. Now I’m at dialysis again since a few weeks. 3 times a week for 3 hours, because I have still a little bit function (GFR 10). I do dialysing in the afternoon, because I still work full as a radigrapher at university hospital. Just ask me, if you have any questions, I’m sure I’ll follow your blog, its nice and informative.
Greets from Munich/Germany!
Thorsten
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Hello Greg,
My mom is 66 and she supposed to start dialysis last Tuesday (she had her fistula surgery on March 4th) but they put the needles to start the treatment and it started to come a lot of blood (hemorrhage) so they suspended the dialysis until her arm is healed. I do not understand doctors said fistula was already established, why she had the hemorrhage? Now her arm is very bruised, like black, and she has pain. Now she just called me that she is worry because it hurts and she feels her arm a little hard.
She is very tired, no energy these past weeks.
I think I would be entering frequently to your web page to learn more about dialysis and to ask you some questions. Thank you. Rossana
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Hi Rossana. From your description, it sounds like your mother’s fistula was “blown”. For normal dialysis, two needle are inserted into the fistula, one to draw the blood out and into the machine, the other to return the blood from the machine back to the fistula. Sometimes, especially when the fistula is new and quite soft, the person doing the needling accidentally pushes right through the fistula and out the other side. If this happens the returning blood, is pumped directly into the flesh of the arm rather than into the fistula. This is called blowing the fistula. It is painful and ugly, but not life threatening.
Blows are more common with new fistulas, which is why most units have only their most experienced staff putting in the needles during the early stages of dialysis.
Most people have a blown fistula at least once during the early stages, either because the person needling pushes the needle right through, or because the patient accidentally moves her arm in a way that forces the needle through he wall of the fistula. Your mother’s arm feels hard because it is full of blood. It is black because the blood loses oxygen and turns very dark. It takes 2 -3 weeks to gradually get back to normal (sometimes longer if the blow is a big one).
She is probably very tired because she needs dialysis. The sooner she gets into a regular dialysis routine, the better.
I am sure this is both frustrating and traumatic for you mom, but things will improve with time.
Regards, Greg
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Thank you Greg for your reply. Tomorrow doctor after see the results of a urine test is going to tell my mom if she needs now a cateter in her chest, I hope not.
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Great work Greg….fabulous support for people going through a bumpy ride…good on You mate
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Hi Greg enjoy your blog, A lot of our UK clients now have iPads etc. and spend their D.time floating around the internet. In case they didnt already know of you I wondered if you would mind us puting a link on our website to your blog for our patients and travelers to read about your positive force and information resource! Regards Brian
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Thanks for the info Brian. Will do.
Dialysis Holidays UK can be checked out here: http://www.dialysisholidays.co.uk/
Link on main page coming. Greg
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I’m a little late in asking about this! And I can’t find my info darn it……but whats worse…..PUMPKIN PIE or PECAN PIE….I realize its phosphate binders with either/or…..but in the grand scheme/scale…any advice?
In other words, mom is going to have some….I cant seem to stop her….LOLOL. So advice is great:)
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Check out my new cookbook! Very low phosphorous, potassium, and sodium recipes…http://www.amazon.com/Mama-Lolos-Cookbook-Recipes-Cookbooks/dp/1493637355/ref=sr_1_2?s=books&ie=UTF8&qid=1384106858&sr=1-2&keywords=mama+lolo%27s
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Thats wonderful! I will have to check this out, thank you:)
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Hi Greg, just want to say hello and greets from bigD staff at BIMC Bali! I said hello from you and they still remember you and shown me your card. Having a great time here at Ayodya resort although my blood pressure is down in the cellar and I passed out yesterday at Bali collection after dialysis..
have never been nearer to Australia!
Cordial greets!
Thorsten
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Hi greg, went in for a check up in Dec. found out my kidneys are failing. Do you have to run 4 hours on dailysis.
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Hi Dave. Yes, I’m afraid so. Four hours, three times a week is usual. Check out this briefing sheet for a gentle introduction. Greg
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Thanks , sometimes I feel the effects for 2 days. So I was concerned about my dry weight.
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Hi Greg,
In May 14, 2013 you replied to my daughter Rossana. I am on dialysis using a fistula since May 2013. I am taking tests in order to know if I qualify for a transplant. I am 67 years old. I would like to start in contact with you for asking advises.
Let me know when you go to dialysis , how do you feel during and after your treatment. What do you use to do during the time you are in treatment?
I am happy to find your blog.
Thanks
Blanca
Ps. Sorry my English not good
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Hi Blanca. Good to hear from you! I hope you make it to the transplant list. Your age will affect how well you react to the transplant surgery – it is quite a traumatic procedure, but if you are generally healthy (within the dialysis lifestyle), you should be fine.
Regarding the age of transplant patients, I remember about 20 years ago, my kidney doctor, who was a fantastic operator, the head of the kidney unit, and a leader in his field, used to say that no-one should be offered a kidney transplant if they were over 60 (he was in his forties). He thought they were too old and would be too frail. Then a funny thing happened; he turned 60. All of a sudden he changed the protocols and removed the age limit. The decision is now based around the health of each individual rather than an arbitrary number. Just recently I heard of a healthy 80-year old who just received his first transplant. That gives people in their 60s (like you and me) another decade or two of hope and anticipation of a more normal life.
I tend to follow a routine on dialysis. I have written about it a couple of times, the most recent here. I will revisit it though, things are always changing.
Nice to catch up Blanca. Regards, Greg
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Hey Greg, haven`t seen any updates on your blog lately. How are you doing? hope you are well and fighting strong!
regards, Tom
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Hi Greg, im really glad that I have found your blog, its nice to get a straight forward positive view of things.
My situation is, my son’s solo kidney is trying its best. Its been struggling for the last year, but has tricked his doctors many times, even as unborn baby he beat the odds and survived. We go to Westmead Childrens. I get so overwhelmed with it all, but I do know to stay positive (not that easy some days) and to be as informed as I can be. Im thinking that P.D would be more suitable option for him, he has only started school this year (a decision that was totally taken out of my control, and everything that I feared w/could happen, has happened) Everybody who knows us keeps on about transplants, its driving me nuts, its not the golden cure that these ppl think it is. I dont know if I can donate my kidney, his doctors ignore me both the neph and uro when I ask about this.
I cant donate blood, what hope have I got with donating a kidney or doing the kidney swop scheme. I cant donate blood due to being a Pom and living in U.K when the BSE / mad cow disease was in its peak.
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Hello Greg, I found your website and was hoping you could answer a quick question. My mother is scheduled to insert a fistula in her arm for dialysis this Friday. The nurse told her that her arm with the fistula would become useless. The doctor recommended the fistula be inserted in her right arm because the flow is better. She is worried that she will not be able to sleep on her right side or carry a purse from now on. Is this true? Maybe she misunderstood the nurse.
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Hi Ron. Your mother’s arm will be perfectly fine. The fistula is just to create a large access vein for the dialysis needles. It will have no affect on the strength of her arm, except perhaps during the healing process after it is created. Many people with fistulas swim, lift weights and generally use their fistula arm just as before. She may need some adjustment sleeping over the years, as the fistula grows bigger, but nothing major. Wish her good luck on joining the club!
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Greg,
You are such an inspiration I am a graduate student working on a mobile app thesis project for dialysis patients to assist with knowing what foods to eat and staying on track with specified nutrients.
My mom is 82 and she is on dialysis. This week we are discussing content. I was wondering what do you think are the key areas of content in a mobile app for dialysis patients?
-Tarry
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Hi Tarry. I think the best App is one that tracks how well you are doing on dialysis, that is the measures (fluid intake, phosphate binders, meds, diet, exercise, etc,) that you have the ability to control. That way, you should be able to use the app and take action based on live data. Good luck and keep in touch! Greg
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Greetings
I recently posted an inquiry in the section for people to dialogue. Now O cannot find that section . Would you please explain where I can find the postings. My question was would I feel better on dialysis when my GFR is 14. I am tired most of the time.
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Thank you for this blog!
I am 72 years old and was very active traveling around the world until having a heart attack 6 months as a result of acute kidney failure. they said that my potassium was 9.2 when I arrived at the hospital!
your blog is my first contact with others who I can relate with!
Thanks Jim from homestead, Florida, USA
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Thanks Jim. Welcome, and stay active! Greg
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Hi Greg,
My wife Jann has been reading your blogs for quiet awhile and she suggested I should start reading them too. I find them really interesting as I recognise some of the issues I am having. I have been on Hemo Dialysis for 2 years, I have now hit the wall with Fluid restrictions, I have been set 600ml per day. I have always been a large water drinker living in Papua New Guinea for 13 years it is a struggle. I am determined to get my head around the reduced fluid. Apart from this everything else is going OK.
I have an added problem where I have calcium in the heart and I need two valves replaced and the surgeons have advised me I cannot have any operations to rectify the problem. Life goes on!!!!!
Ray L
Brisbane Qld
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Hi Greg,
I am interested to know more about the APP you are using to see how well you are doing on Dialysis, can you possible Email information on it and where I can purchase one.
Thanks
Ray L
Brisbane
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Life Goes on!
Hi Greg. I so love the positivity of you site. I’m 25 and been on D Club for almost a year now. I was diagnosed 3 years ago and I felt better now. I just wanted to congratulate you for what you are doing because it’s a great help and very informative. I just want to share to everyone as well that life goes on. I’ll be spending some time on this site, that’s for sure.
Jezreel
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Thanks for creating this blog.. I learned a lot here!
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Hi, I just read this beautiful story. I thought I would like to share it with everyone.
Thx !
http://www.today.com/health/grandmother-donates-kidney-baby-granddaughter-t19991?cid=sm_fbn
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Yes, great story. Thanks so much for posting it! I love the last photo.
Greg
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Howdi Greg? May I ask if you have had experience with osteoporosis and what treatment for ESRD?
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Hi La. Osteoporosis (reduced bone density) tends to be a problem for people on long-term dialysis, due to lack of vitamin D. I don’t have it, I have the milder form, osteopenia, so I take vitamin D, and have a bone density scan and attend an endocrinology clinic about every 9 months. It is slowing down though I don’t think it will ever go away. If you have either, talk to your nephrologist and arrange a visit to an endocrinologist asap. Regards, Greg
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Hi, Greg,
I was hospitalized April 26, 2015. We believe that my only kidney failed last summer, I was just unaware of it until I got very ill. My BUN was pushing 220, my creatinine was pushing 15. I have been on dialysis since the night I was admitted. I had a seizure the first night, but not since then. I find that 3 hours in I start having problems. Low blood pressure is a problem. I love your ice tip. I have an infection in my jugular port, so they removed it, but replaced it right away. Normally there is a catheter holiday while you get heavy antibiotics, but my team decided against that. I had chosen CAPD, but my surgery was delayed because of this infection. Now I have changed my mind. I do not want any more infections. Fistula surgery is in my near future. Any advice? Thanks for your blog. It is very helpful!
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Hi Jami. I’d go for the fistula. For most people, dialysis is a long-term proposition, so I chose haemodialysis and the fistula rather than CAPD, which mostly lasts for only 2-3 years and has a greater chance of infection. It takes a few weeks or more for your body to get used to dialysis, so soldier on! Hopefully even now, you will be feeling a little better than when you first started. Good Luck, Greg
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Hi Greg and all!
Its been awhile since I’ve been on here. Mom (or the QM as we like to call her for queen mum, ha)..has been on dialysis fistula for a year and a half now.
Lately though, I’d say the past month..whenever we go the “2 days” on the 3 day a week deal we do…she is starting to get more confused on that day 2. She never used to this whole year, but I have noticed it about 3 weeks in a row now.
So my guess is, its not enough dialysing? or is it something else? and if its not enough, yes we have discussed home one (peri), but I just don’t think she wants to do it. It would be a lot on HER. As far as responsibility and I think she likes sorta just going and coming home and forgetting about it till the next time.
But yet I don’t want to damage her if going that extra day is bad.
Any advice? Or does this have nothing to do with it…its something having to do with length of time or the rate they do it or something?
Thanks for the help…(we go to a Fresenius in Orange County CA)
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I am looking for support groups in Pretoria South Africa. On PD for the last year. Struggling to cope. Diabetic for. 43 years and had heart attack at 38.
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Hi Greg,
I was looking for some information on blowouts and tumbled across your blog, let me congratulate you on fantastic blog with so much information for newbees like me.
I have APKD and found out about it in 1991, so I had accepted the fact that I will have renal failure at some point in future and was mentally ready for it.. but then, the reality when it actually happens hits you like a ton of bricks and is so difficult to cope with , I am 47 with good job and lovely family.
Initially, I intended to start on Peritonal dailysis, while inserting the catheter my intenstine got punctured, had I not gone to the A&E in time to investigate the extreme pain.. the story would have been different.
After various investigations, including CT scan for the cause of pain, I was rushed for laprotomy, it all added up to me having Dailysis earlier than I should have been, I had neck/shoulder catheter inserted for initial dailysis till my fistula got matured.. and have recently started cannulation with orange needles.. on very first try I had a blowout, I have been dailysed with needles for 3 weeks now, until yesterday.. blow out happened again..would you shed some light if this is normal for new fistula ?
Great work.
AJ
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Hi Ash. You’ve had quite an intro to dialysis. No, your problems with PD and the subsequent medical dramas are not usually part of the normal dialysis start up. Cold comfort for you, I know.
Also, the first few times you have HD most units I know take it very slowly and gently until you and your body are at least understand the process. That said, with the best of intentions, blowouts still happen, especially if the person doing it is new to the twists and turns of your fistula.
It happened to me a couple of times in my early days too and I remember the shock of the whole thing quite vividly. It was one of the reasons I learned to needle myself. I reckoned that I could feel the location of the needle a lot better than someone else, so I might stop pushing before a blow happened. This turned out to be mostly right.
You seem to have a great attitude to dialysis, and that will serve you well. Good luck and stay positive. Greg
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Hi Grey,
I am Caren from Malaysia. I am glad that i found your blog which enlighten me on the dialysis life. i’ve been feeling so depressed when my husband diagnose with final stage of CKD and required immediate dialysis in last year. Pray to god that everything have been went well and we have adapt to the dialysis life.
i need your help, reading your post on doing treatment in mainland china “beijing” china-japan friendship hospital. could you share with me the contact, email and etc?
thanks, hope to hear from you soon.
best regards,
caren
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Hi Greg. I had a tenkoff put into my stomach and a fistula in my arm in 19 Nov 2014. I am 60 years old and have to take insulin for my diabetes. At present, my pd team are helping me to transition to haemo but my fistula is not behaving well. A vascular surgeon will soon try to correct this, meantime I am back on pd.
I am wondering if you, or anyone on this blog, has had experience with travelling to the USA on dialysis. Particularly the availability and the cost. Thank you Greg.
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Hi Beau Kaa,
to travel to the US is not easy, because the dialysis sessions are extremels expensive. 500-800 US $ is an usual fee. I like the US, have often been there when I was transplant, but with dialysis Mission imposiible, because my health insurance gives me back Maximum 189 Euro (about 200 US $) per session, so I had to pay everything above it alone.
By the way… you can do hemodialysis with a demers catheter too, many People with bad vessels use them.
Another question: Im planning to travelling to Australia in 2017, how are costs there?
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Hi Thorsten. Costs in Australia vary from $A300 to $A500 per session depending on the company you approach. I know that Diaverum are quite reasonable. Of course, that cost varies with the exchange rate (right now the $A is quite cheap). Also, before coming, check if your country has a reciprocal agreement with Medicare. If so, the service is free, but hard to get (most units are full with their allocated patients). Call and discuss with public and private units in your target area before making any plans. Regards, Greg
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Hello Greg,
I have a question, my mom 68 years old (2 year and half on hemodialysis) she just told me that today she entered to the treatment with a weight and now that she is leaving she has more weight.
And that is happening before.
My understanding is that she needs to leave the treatment with less weight because the dialysis is taking out liquid. why do you think she is earning weight?
Does is something wrong with her cleaning machine?
Please let me know what do you think, she is concern.
thank you,
Rossana Salazar
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Thank you very much Greg for your prompt reply. My mother always take good care of the quantity of fluids she take and she always try to follow a healthy diet. When she is on dialysis treatment she never eats, well, maybe some gummy bears and drink just two sips of water. I do not remember what she said me but I think it was that she entered with 58 kg and then went out with 58.9 kg. That particular day she ended with a very strong headache.
Thank you for your comments and I will let you know what happen.
Rossana
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Thanks Rossana. I usually reply to Christian names, not surnames! Sorry about that. I look forward to hearing about your mother. Greg
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Hi Salazar. You are right. Dialysis usually does two things: it cleans the blood and it takes off excess fluid. Your mother should not be coming off the machine heavier that when she goes on. However it can happen, typically for a two reasons:
1. Miscalculation. The nurse or technician’s calculation of how much weight to take off during the run is based on your mother’s starting weight, the estimated weight of any food or drink she may have during the run and how much fluid is to be used to run back her blood when she finishes dialysis. If any of these numbers are incorrect, she may end up heavier
2. Having more fluid than planned through the run. If your mother eats or drinks more that the estimated amount of fluid, or if more fluid is used than planned to run back her blood at the end of the run, she may end up heavier.
Ask her what she eats and drinks through the run. Also, talk to the nurse or technician and ask the question. I’m sure they will be happy to talk about it with you.
It is not good for your mother to have too much fluid on between runs; it puts a lot of pressure on her heart.
Good luck. Let me know what happens. Regards, Greg
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Thank you very much Greg for your prompt reply. My mother always take good care of the quantity of fluids she take and she always try to follow a healthy diet. When she is on dialysis treatment she never eats, well, maybe some gummy bears and drink just two sips of water. I do not remember what she said me but I think it was that she entered with 58 kg and then went out with 58.9 kg. That particular day she ended with a very strong headache.
Thank you for your comments and I will let you know what happen.
Rossana
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Hello Greg,
My mom 68 years old (2 year and half on hemodialysis) she would like to know if she can eat something (like snacks )during the treatment.
In two opportunities when she had strong headache she ate a small sandwich and the headache was gone. I would like to know if eating something is related with the disappearance of the headache.
Do you eat something during your treatment? If so, what do you usually eat.
Also what protein bars would you recommend her to eat when she is out of the treatment.
Thank you very much and I wish you the best for 2016
Rossana
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Hi Rossana. I haven’t heard that eating can help with headaches, but if it works, absolutely do it.
Some people can tolerate eating food on dialysis others cannot. The most common reaction is a drop in blood pressure (as the body diverts fluid to the stomach to digest the food).
However, many people can and do eat on dialysis. I usually have a sandwich about an hour into the run, and at meal times, I also have a hot dinner (our unit supplies them at a reduced rate). I’m by no means alone; each evening session in the unit is a virtual Roman feast of hot food service to hungry BigD-ers. Some people even order from the local Italian or Asian food shops.
The usual food restrictions apply of course. Everything in moderation; start slowly and experiment. If your Mom eventually has a more substantial meal, don’t forget to add the weight of the meal to the fluid removal total.
The same with protein bars, but keep away from nuts and dried fruit; oats bars are best. Greg
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Thank you very much Greg for your prompt reply.
That’s good that your unit supplies with food. I thought food was not good during treatments but now I understand it is ok if it is in a moderate way. I think the most that my mom will eat will be a small healthy sandwich.
My mother goes 3 days a week for 3.5 hours. (5am to 8:30) Do you also go 3 days a week?
Thank you again.
Rossana
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Love your site I have just received a kidney from my dad after spending a year on dialysis. I also blog about dialysis, transplants and organ donation and my journey through it all
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Help. My husband has been on dialysis for 20 months, his cramping after session is horrible. What’s the answer? Thank you
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Hi Lynn. Cramps are awful. They are frequently caused by taking off too much fluid too quickly. This can happen if you put on real weight (not just fluid) after a while on dialysis and your health improves. Then, taking off the same amount of fluid may be more than you need to take off, which can result in cramps. Talk to the nurses/techs about this and see what they suggest. Also, a couple of short-term fixes: 1. See if your husband can suck some ice (no water) for a while during the run: it may just hold them off. 2. A couple of lightly salted dry crackers can often stop cramps in their tracks.
Hope this helps! Good luck, Greg
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Hi Greg. My name is Lynn and I’ve just been told I will start dialysis next week. Monday or Wednesday to be exact. I went to visit the center a couple days ago and felt very nervous. The nurses were nice and I assured me that I would be taken care of. Then I saw the needles I would be stuck with not so good for me. I don’t mind needles; I’ve been poked a lot. I had a transplant 15 years age and now its ready to retire – not a bad run 😀. I write because I’m a little scared. Words of wisdom for a newbie to the Big D? Thanks Lynn
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Hi Lynn. Everyone here felt the same way that as you do right now when they first started. Fears and tears prevail. But the bottom line is that all will be well: for a couple of needle pricks a few days a week and you will be feel well and can get on with your life. Not a bad trade. Many people have found these briefing sheets, Starting Dialysis and Your first Dialysis Session worth a look.
Good luck and if you feel like it, let us know how things go. Regards, Greg
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Hi Greg !!
My dad is undergoing dialysis since Aug- 2015.
Before starting this procedure, he was very scared and so were we as we were unsure how will we go through this procedure more so because my dad was very scared of this. I went through lot of blogs and yours was the one which stuck to my mind. You had such a positive approach which surely made me stronger 🙂
Today its been 4 + months … and now my dad goes for dialysis 3 times a week after work.. I go along. for 4 hours he watches movies back to back… 🙂
Though sometimes when I get late he says he is too tired of this procedure to tease me 🙂
But i have seen his will power become stronger. He is an inspiration for everyone over there as he can be seen smiling through the entire procedure.
So just wanted to Thank- you as your blog made me re-think that maybe life wouldnt be as bad as it seems after dialysis 🙂 Thanks !
Also, just wanted to check.Our doctor says we should continue with standard 3 days a week procedure though his creatine is 5 sometimes 6. There are other patients who have creatine levels 15 10 and even 18 who go for dialysis just twice a week, How do we determine how many times shoudl we go for it ?
Regards
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Hi Tanya. Thanks for your kind words. It’s is absolutely great to hear your Dad’s story. He sounds like he is a great advertisement for BigD. Maybe, if he has time, could he perhaps write a brief post on how he handles dialysis, to help others in the same boat?
With regards to dropping back, don’t do it! The reason he is so well is BECAUSE he is getting sufficient dialysis. People on less than 3 definitely feel less well between sessions and usually end up having shorter lives. In fact, many people are not entirely well on just 3 days. Some people in my unit, including me, choose to dialyse 5 days per week to stay that extra bit healthy and to get more from our non-BigD time. I urge your Dad to stick with 3 days: its the price we pay for living well the rest of each week. 🙂
Regards, Greg
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Five days, how many hour each day. My mom is having difficult time, headaches , blood pressure after 2 hours. She would like to know if she cand dialysis five days only 2 hours per session. I am not sure is ok and if they offer that here. ( davita usa)
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Hi Greg
Planning to visit relatives in Melbourne (from Holland) but it is difficult to find a center in Melbourne where they are able to provide single needle dialysis. What is the right decision? Go back to double needle (caused a lot of problems) or does anyone knows a unit? (ps same for the stopover on Bali)
regards Bernard
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Hi Bernard. I know that Diaverum unit at Diamond valley in Melbourne does single needle dialysis. I will forward your query to the unit and I’m sure they will contact you. I’ll also email you the manager’s email address. I have dialysed in Bali BIMC Hospital Nusa Dua and they are excellent but I’m not sure if they offer a single needle service. You can email the centre manager, Jo Skala at dialysiscentre@bimcbali.com. Good luck! Let me know how things go. Regards, Greg
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I would like to know if anybody has experienced bad headaches and nausea
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My mom is having strong headaches. What do you do for that?. She takes tylenol , tramadol, but sometimes does not help. High blood pressure too.
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That’s good, thanks for sharing,.. I think this is great blog
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Hi Greg
I’ve been on Dialysis for 2 years and wanted to take my family on an overseas trip. I had to plan months in advance and that was not enough time! I wanted to go to the states and Hawaii , but could not get adequate insurance cover (if anyone has details of an insurance company that covers the US please pass on details).
I decided on NZ – 3 days in Auckland, 1 week in Queenstown. This is where it becomes awesome for those on Dialysis. NZ is much more flexible here than Australia. In Auckland, I dialysed at the home dialysis unit at Greenlane clinical centre. They have a little flat located next to the Dialysis unit. You can dialyse any time of the day or night. They give you a 4 digit code that gives you access to the flat. I arrived 4am in the morning and dialysed. It’s all self-care no nurses and it’s free. Contact details – Janice McNeil (09) 307 4949 ext 27372 | (021) 938 921 | * jmcneil@adhb.govt.nz.
Queenstown what a magical place , skiing one day and as the family rests I’m on Dialysis the next day. I dialysed in Clyde which is just over 1hr drive from Queenstown. The dialysis unit here is a flat with 2 machines bedroom kitchen. The cost was $200 and it’s all self-care here as well.
I took my own needles and heparin.
Contact details for Clyde are Blair Donkin | Associate Charge Nurse Manager – Dialysis Unit | Southern DHB
Private Bag 1921, Dunedin 9054, New Zealand | office: 03 470 9301 | Extn: 59301 | Mobile: 027 665 6659
blair.donkin@southerndhb.govt.nz
NZ so easy for dialysis patients able to dialysis day or night , give it a go we had a great time.
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Thanks for that great news George. I am sure there are many BigD-ers who will think seriously about this! I certainly will. We are planning our next holiday right now. Regards, Greg
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Hi Greg,
My mom is on hemodialysis more than 3 years. She is 69 years old. These last days she is having very strong headaches and extremely high blood pressure. We are on emergency room now. She start developing these headaches after 2 hours of the dialysis. Yesterday she did not want to be dialysed because of her high pressure, so she moved it for today. She is very concern for Monday dialysis. She is taking her blood pressures medicines but seems not working very well.
Any comments will be highly apprecciate it. Thank you.
Rossana
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I have been on Diaysis and I can understand your mum with the headache. I also get them every time I have Diaysis. most off the time I can’t even see out off my eyes, sometimes I do throw up because the pressure is to strong. My blood pressure is also high 186. Can go over 200 after Diaysis. They have done so many different things with myself on the machine. Sodium proffering. At the moment half way so yes on the 2 hour mark they now give me glucose and it does help but It does not take away the full pain but it does easy it a bit.
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Hello my name is emma and I am going to Fiji and have read about your vist. Just a question with the price off Diaysis. What did u pay? Has they are saying $650 Aust plus extra for things that go with my treatment. With u could give me a idea that would be great .
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I cant wait to show my grandmother this page! She is a fairly healthy 74 (minus the kidney disease from high blood pressure which is now controlled) and is frantic.. super nervous about starting dialysis and the needles. I am too. It gives me anxiety thinking of her being scared. She loves to dance and cook.. her fear is she’ll decline after dialysis and not be able to do those things. I told her to look at it as a new lease on life. She is getting a new fistula next month (the old one they placed 3 years ago.. she never had to use as her kidney function stayed at 17% with some diet modifications & it no longer works) so we know dialysis is coming soon. You have eased my fears..and this page is uplifting. I hope you know how inspiring you are to people all over the world. (Even way in Kansas City, Missouri)
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Thanks David. Good to hear from you. I wish your grandmother luck and ongoing good health! Regards, Greg
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Hi David, hope your Grandma is doing well. Hope she is keeping up with her dancing, etc
My husband has been on dialysis for 6 months now, we trained for three months and now we are at home doing just fine.The first day was quite a shock, needles etc, – we had no idea and thought there would be an open port. Anyway, Hubby at first almost quit, but realising the other option of hospitals and waiting around endlessly etc, is now fine with it all and I do the cleanup and maintenance. I must say that hubby has improved a great deal and leads a very normal life, just adjusting to a new routine, but Thank goodness for HHD
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Hi Greg < so glad to have found you. This blog is awesome and so very helpful. My husband had just been on home Hd for 3 months now and its so good to be able to connect with others and realise that we are not alone or perfect or unable to always grasp stuff that is thrown at us.Thank you… we are in Perth
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Hi Greg!
I chanced upon seeing your blog and it gives so many inspiring messages.. And reading it more gives me a chance to understand fully well other peoples life inspiration…My Mother is 79 yrs old, a type 2 diabetic since 1988,started dialysis in September 2016 in a 2 times a week session…and I was not aware about the responsibilities of facing it financially and emotionally….Im the only one surviving in our family…It’s been long ago lost my father and 3 brothers recently as hereditary of being diabetic…And we are just an ordinary people living to make both ends meet,and honest to say that dialysis is very expensive…I just want to ask if you know where i can ask financial/medical assistance for her treatment…. I hope anyone cares to suggest..thank you so much and Godbless!
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Greg—you are my hero, beautiful brother—(I am a little biased)…Celeste
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