Through the years I only recall one nocturnal patient who got a transplant and he said he felt about the same on both modalities, the difference being, that with a transplant he was no longer tied to the machine. I would like to get some more opinions on this so I am looking for the largest kidney transplant discussion group. Can anyone tell me where to find it? I have a feeling very few patients have done both modalities so it will be interesting if I can find even a handful of those who have in order to get their input.
I did find one such opinion at the following old thread dating back to 07’, but don’t recall anything much since then:
Hi Jane
I haven’t posted here for a while but I do remember all the wonderful support I received from many people here such as yourself and Pierre that you have just mentioned as well as all the others. I started straight into Nocturnal hemo at home after training from Day 2 of going on dialysis and chose this modality because I had read Prof Agar’s website down here in Australia and knew that it would give me the best chance of staying fit and well and having as normal a working life as possible regardless of whether I received a transplant or not. Without the support I received from Pierre and of course Prof john I don’t think I would have had the perserverance to cope with all the sleep and needling issues that presented themselves over the next three and a bit years before I received the wonderful gift of a kidney from my hubby, Andy on 31st October, 2008.
I will post more soon but what I can say is without a doubt Nocturnal gave me the energy to lead an active life whilst on dialysis but it is only after about a year + into my transplant that I can really notice that I genuinely am getting fitter and stronger by the day. I think at first its the drugs that give you that feeling and you no longer feel like you ‘have hit the wall’ which I often felt on dialysis. I noticed at the gym this morning that I was actually doing three times what I was capable of on dialysis without wearing out. Sooooooo more later. I don’t get tired and don’t need to nap either. But having said that I still believe that if I hadn’t been on Nocturnal I wouldn’t have been so well to cope with the physical effects of the transplant on my body.
Talk again soon. Gotta go!
Kind regards
Mel (aka Beachy)
I am glad you asked this…because I would have soon. I am in the process of switching to nocturnal from short daily. I also have my first meeting with the transplant team tomorrow. I’ve been battling bladder cancer for many years - which is the reason I lost my kidneys thus on dialysis. I want the modality that keeps me alive and healthy the longest. With a cancer diagnosis I am concerned about the immunosuppressant drugs. I watched a transplant DVR the other day and admit I was shocked at the amount of drugs you need to take after a transplant. I find it hard to believe anyone could feel good taking so many drugs. I have seen the life expentency graphs comparing dialysis to transplant. I assume the dialysis stats are for thrice weekly in-center dialysis. I know short daily would have better stats and nocturnal perhaps even better. Still lots to consider.
Wendy, the survival stats for nocturnal (and short daily) HD are that it compares to deceased donor transplant–but without the immunosuppressants. There are 3 or 4 studies now showing this–with more to come, I suspect.
The risk of cancer with a transplant is very real, and if you already have it, the immunosuppression is a risk you need to talk with the transplant team about. Here’s a new article about the risk that just came out a couple of months ago: http://www.medicinenet.com/script/main/art.asp?articlekey=115848.
Hi Wendy
I am glad you metioned the Cancer risk too!
The two main things that I had overwhelming concerns over were that my kidney disease can reoccur in the transplanted kidney (of particular concern if the kidney is from a loved one) and also the concerns about cancers. I have spent my life outside on and around the ocean and have had many skin cancers including a Melanoma so the drugs scared me although the volume of pills you swallow is of no significance in the scheme of things. Since the transplant I and my medical team are extra vigilant to stay on top of these things as best we can. In the end it comes down to what is important to you and your loved ones, what is your quality of life like with your present mode of treatment and what will make you happy and thrive with whatever time we have on this earth.
Personally, I find I am treasuring every minute of every day and making the most of my time with my precious gift. I constantly marvel at how brilliant the process of the transplant has been, much easier than I imagined as long as you can control those dark thoughts that we all have at times. I never forget how far we have all come with dialysis and I know that we can all be positive for the future of renal therapies with such brilliant minds out there working on it.
Cheers
Mel
Living donor kidneys have the best outcomes of all, Beachy. 
[QUOTE=beachy;19764]Hi Jane
I haven’t posted here for a while but I do remember all the wonderful support I received from many people here such as yourself and Pierre that you have just mentioned as well as all the others. I started straight into Nocturnal hemo at home after training from Day 2 of going on dialysis and chose this modality because I had read Prof Agar’s website down here in Australia and knew that it would give me the best chance of staying fit and well and having as normal a working life as possible regardless of whether I received a transplant or not. Without the support I received from Pierre and of course Prof john I don’t think I would have had the perserverance to cope with all the sleep and needling issues that presented themselves over the next three and a bit years before I received the wonderful gift of a kidney from my hubby, Andy on 31st October, 2008.
I will post more soon but what I can say is without a doubt Nocturnal gave me the energy to lead an active life whilst on dialysis but it is only after about a year + into my transplant that I can really notice that I genuinely am getting fitter and stronger by the day. I think at first its the drugs that give you that feeling and you no longer feel like you ‘have hit the wall’ which I often felt on dialysis. I noticed at the gym this morning that I was actually doing three times what I was capable of on dialysis without wearing out. Sooooooo more later. I don’t get tired and don’t need to nap either. But having said that I still believe that if I hadn’t been on Nocturnal I wouldn’t have been so well to cope with the physical effects of the transplant on my body.
Talk again soon. Gotta go!
Kind regards
Mel (aka Beachy)[/QUOTE]
It is great to hear from you, Beachy, and to know that you are doing well. If I understand you correctly, you seem to say that you feel even stronger with your transplant than you felt with nocturnal now that you’ve made it through the break-in period. Did you do nocturnal 6x or less often? What meds were you on initially, and now, with the transplant and are there any side effects?
Hi again Jane and yes I definitely do feel stronger than I have felt in years! I did nocturnal 3 nights and a shorter 5 hour run on Sundays and I averaged around 31 hours a week I guess. But I did vary my routine to suit what was going on with work, sleep etc. That was the beauty of it I guess.
As for meds… the names are probably different down under with some of these. They whack you full of Prednisolone and the other immuno suppressants to start with and then taper you down I am now on 9mg a day. I find the Pred the hardest to deal with emotionally (along with menopause LOL) Get agitated and grumpy easily, find it hard to stay on one task etc but I manage it most of the time. I am on Tacrolimus and Cellcept which are the 2 immunosuppressants and apart from the ever present skin cancers so far so good. Caltrate, Vitamin D,Lipitor, Ranitidine and Dilitiazem are the others that I take daily.
basically I have described the transplant journey before as taking a long time toprepare a big bus journey with trepidation, getting on the bus and getting run over by it (the operation) and then before you know it you come out the other side, cared for wonderfully and wonder what all those months and years of worry had been all about. Friends and I that shared these experiences reckon we would go through it all again if we had to in an instant. Part of it as with sharing dialysis experiences is the lifelong friendships and closeness you develop with others that have been on this ‘bus trip’.
So basically I guess what I am saying is apart from the freedom that a transplant brings and for me the fitness, the main changes I find personally are going on inside my head! LOL
Cheers
beachy
beachy,
As I consider transplant, I am most worried about the prednisone - or any steroid. I am relieved to know that you can get back to strength in time. That is the one thing that bothers me the most now. Although I still go to the gym regularly, I feel at 1/2 steam a lot. I want to feel like I did before.
With regards to the prednisone, did you put on much weight or maintain much fluid? I dread the thought of that personally.
Your frankness will be appreciated.
thanks,Wendy
[QUOTE=Wendy Ramsay;19772]beachy,
As I consider transplant, I am most worried about the prednisone - or any steroid. I am relieved to know that you can get back to strength in time. That is the one thing that bothers me the most now. Although I still go to the gym regularly, I feel at 1/2 steam a lot. I want to feel like I did before.
With regards to the prednisone, did you put on much weight or maintain much fluid? I dread the thought of that personally.
Your frankness will be appreciated.
thanks,Wendy[/QUOTE]
I have been on prednesone since the age of 11 with my first transplant. I am now 34 and still on it due to EPS ( Encapsulating Peritoneal Sclerosis) and also have adrenal insufficiency.
It doesnt make me hungry although this is a side effect many have. The only thing I dislike is the chipmunk cheaks…
//MM
Hi Wendy
My hubby and I both celebrated for many months and ate far too much so yes I put on around 5 kgs and developed a ‘well rounded’ look in the face. As I mentioned though I am also menopausal (54 years old)
Cutting back on the sugars and carbs stopped the weight gain and I am now about 2kgs more than I was on dialysis but much fitter and stronger as I now keep some muscle mass on and the face has normalised. I am happy with my weight (69kgs) sorry we left the lbs system behind in the 60’s in Australia so I’ll leave you to the conversion :0) Don’t have that sucked dry look that I had on dialysis (so I’m told) and don’t have much fluid retention. Lots of fluid in and out these days!
If I haven’t answered your questions properly feel free to ask some more. Only too happy to chat.
Cheers
beachy
MM and beachy,
Thank you for your replies.All information is helpful.
Wendy