Dialysis choices

I thought I'd start a thread specifically for dialysis options. Hopefully this thread will become a good starting point for people at Stage 4 renal failure who need to begin to decide which dialysis is best for them.
I have only had actual experience of dialysis for a few weeks, over 20 years ago, so most of the following info is what I have recently read, rather than what I have experienced. So please feel free to correct me if anything is incorrect.


When choosing dialysis there are 2 main options - Haemo and Peritoneal.
Beyond that the next choice is - at home or in clinic/hospital.
Beyond that it is - frequency and the choice of nocturnal or day time.


There is a mass of information regarding the various options, so I will try to pick out some main points, but will try to answer any specific questions I don't cover.


"Which is best?" is likely to be one of the first questions, but there is no one-fits-all answer. The correct dialysis should not only be the one that prolongs life, but also lets you live, socialise, work, etc.
No current dialysis matches the performance of a living donor transplant. The best dialysis is that which mimics a kidney as close as possible. Considering a healthy kidney works quietly behind the scenes 24/7, the best dialysis (for prolonging life) would be if you were attached to the dialysis machine 24/7.
This is obviously not practical. Therefore the best "realistic" dialysis is dialysis that happens frequently, for many hours.
For this reason nocturnal dialysis, every night (or most nights) is usually a good choice.


Pro and cons


Heamodialysis at clinic/hospital.
Pros - Some patients only feel safe when professionally trained nurses deal with dialysis.
- If space is limited at home, there's no issue
- Home is always home and a place to relax. Your home hasn't become a full time medical facility
- Get to meet other dialysis patients
- Usually get 4 days a week off dialysis completely (in reality this isn't good for kidneys though)


Cons - Slower, more frequent dialysis has the best results. Hospital/clinic dialysis is the opposite. You are likely to get 3x4hrs/week. Therefore out of a 168hr week, your body only has the equivalent of 12 hours kidney function.
- Food and fluid intake is restricted (often quite severely)
- Usually need extra meds to combat the inefficiency of this method
- With travelling, parking, waiting and preparation for dialysis, waiting to be "unpluged", etc, a 4 hours dialysis can take up most of the day.


Peritoneal, Continuous Ambulatory Peritoneal Dialysis (CAPD)
Pros - Done at home, or wherever there's a clean environment, so no trips and waiting at clinic/hospital.
- The "exchange" is done 4-5 times a day, every day so results are good (less pressure on heart)
- Fluid and diet is either not restricted or only mildly
- No machines involved, which makes travel more accessible.
Cons - 4-5 times/day (approx 40 mins), every day, is a big commitment
- Peritonitis (infection) is a bit of a risk
- Some people don't like having tubes hanging out of their stomach
- The Peritoneal lining in your stomach is unlikely to manage this type of dialysis permanently (usually 3 years)


Peritoneal, Automated Peritoneal Dialysis (APD)
Pros - Done through the night, so you can get on with life during the day, every day, without using dialysis
- Done at home, or wherever there's a clean enviroment, so no trips and waiting at clinic/hospital.
- Done most nights, for long period, so results are good (less pressure on heart)
- Fluid and diet is either not restricted or only mildly
- Machine is quite small and portable
Cons - May make sleep hard to achieve, especially the first few weeks.
- Peritonitis (infection) is a bit of a risk
- Some people don't like having tubes hanging out of their stomach
- The Peritoneal lining in your stomach is unlikely to manage this type of dialysis permanently (usually 3 years)


Haemodialysis at home.
Pros - Can be done more frequently and during the night, giving best results and least strain on heart
- No travelling and waiting at hospital/clinic
- If you dialyse during night, you have every day to yourself
- Not restricted on fluid/diet if you have frequent dialysis
Cons - Using needles and high-tech machines at home can be daunting for some.
- Some machines need to be plumbed-in, so may not be suitable for all homes


I am due a home visit soon to discuss my options. If they have any relevant info, I shall add it to this thread.

Thank you, Pete, for such generosity & kindness to share all these info with us. Not an easy decision to make... please update us what you decide and why. I keep you in my prayers ♡

Thanks Alysia.
Haemodialysis through the night, 6 times per week seems to be the most effective. But that is so long as your fistula works well. I often have problems with blood tests and cannula, so I'm not sure.
I will definitely choose to dialyse at home and for long/frequent periods. So APD through the night, may be best for me. It is also fairly portable, which is important due to my many hospital appointments that are a long distance from home (i.e. I spend the night before close, or in the hospital grounds).

Thanks for sharing, Pete. Sounds like you have found the better way for you. I hope the fistulla will cooperate. Please update us how is it going...

Just been catching up with my emails and noticed one from yesterday - from my nephrologist's secretary. It stated that my latest bloods showed further deterioration from 18% function to 14% :crying:
15 % or less is Stage 5 Cronic Kidney Disease / End Stage Renal Failure and requires dialysis.

I was SO hopeful that my kidneys would stay above 15% for another 10 months (I could pursue a transplant then if I stay in remission). I need the bloods repeated, which I think will be tomorrow. If no improvement then dialysis will be very soon. I've actually felt worse the last 5 days so I'm expecting the worse.

Sad to hear the news, Pete. Hope all goes well going forward.

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Originally Posted by gilders

Just been catching up with my emails and noticed one from yesterday - from my nephrologist's secretary. It stated that my latest bloods showed further deterioration from 18% function to 14% :crying:
15 % or less is Stage 5 Cronic Kidney Disease / End Stage Renal Failure and requires dialysis.

I was SO hopeful that my kidneys would stay above 15% for another 10 months (I could pursue a transplant then if I stay in remission). I need the bloods repeated, which I think will be tomorrow. If no improvement then dialysis will be very soon. I've actually felt worse the last 5 days so I'm expecting the worse.

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Sorry to hear that.

Not good, Pete.... Where will you have to go for dialysis? Near by?

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Originally Posted by gilders

Just been catching up with my emails and noticed one from yesterday - from my nephrologist's secretary. It stated that my latest bloods showed further deterioration from 18% function to 14% :crying:
15 % or less is Stage 5 Cronic Kidney Disease / End Stage Renal Failure and requires dialysis.

I was SO hopeful that my kidneys would stay above 15% for another 10 months (I could pursue a transplant then if I stay in remission). I need the bloods repeated, which I think will be tomorrow. If no improvement then dialysis will be very soon. I've actually felt worse the last 5 days so I'm expecting the worse.

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I am sorry, Pete. I keep you in my daily prayers & I ask my beautiful dr. Phil to help you from his good place in the presence of God ♡

Question, which also reflects my wish for you: you said that your wg is active now. Is it possible that once you will beat it to remission, the kidney's functions will get better ?
You have being on dialysis 20 years ago but you have recovered from that need. Is it possible again ? And if this is the issue, then the wg treatment is the most critical thing, isnt it ? What treatment are you on ?

Sorry if I ask too much or stupid questions... trying to think about more possibilities.....

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Originally Posted by Alysia

I am sorry, Pete. I keep you in my daily prayers & I ask my beautiful dr. Phil to help you from his good place in the presence of God ♡

Question, which also reflects my wish for you: you said that your wg is active now. Is it possible that once you will beat it to remission, the kidney's functions will get better ?
You have being on dialysis 20 years ago but you have recovered from that need. Is it possible again ? And if this is the issue, then the wg treatment is the most critical thing, isnt it ? What treatment are you on ?

Sorry if I ask too much or stupid questions... trying to think about more possibilities.....

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GREAT NEWS!
Blood test showed eGFR back up to 18%.:w00t:
Obviously I'm still borderline dialysis, but I'm on the right side of the border!
Alysia you never ask stupid or too many questions and I'm always happy to respond!
Thank you for your prayers and thanks to Dr. Phil.
My kidneys are suffering from chronic damage, so there will not be any function increase, beyond slight variations (probably up to 5% difference). I have noticed that after my previous W.G. relapses have gone into remission, kidneys continue to deteriorate. My specialist said that this was because once the active damage to the kidneys has stopped, scarring then begins. As you will see on a cut on your hand, scarring is larger than the original damage (cut), therefore kidney function will continue to deteriorate until scarring stops.
From personal experience and from reports I've read, damage to kidneys from an acute attack of vasculitis can be reversed using dialysis, but not long term, repeated attacks like I have had.
As for treatment, I'm on maintenance Rituximab (every 4 months) and a low dose (5mg) of Prednisolone, plus 11 other drugs.
I've been in remission for 2 months, but need to stay that way for a further 10 months before transplant can be considered.

vdub, my aim is to avoid dialysis and get the transplant done. Success rate is MUCH higher for patient who get a transplant before having to have dialysis.
If that does not happen then I plan to have dialysis at home, but I will most likely need to begin treatment in hospital. Although most of my care is at an hospital 160 miles away, I still see a nephrologist in the next city to me (Bradford), so would be having dialysis in Bradford.

As well as the usual problem with dialysis I have 2 problems that make it much riskier!
Not only am I on warfarin, but I have platelet dysfunction. I was in hospital for 2 weeks last August with severe bleeding (Geoff came to visit me:thumbup:) and as I would prefer daily dialysis, needling myself everyday runs a high risk for severe bleeding.
The other option is Peritoneal dialysis (through permanent catheter in stomach), but this method carries high infection risk, so isn't recommended for immunosuppressed patients.
This is why I'm SO scarred of dialysis and need a transplant.

Pete and drz, thanks for your concerns too.

Thanks God for the better blood tests. And thank you Pete for your clear explanation and info. Then you are alreay in remission. Thats good. And your treatment sounds perfect. Hang in there. Keeping you in my daily prayers. Please update us.

My goodness. All of this sounds scary from word one. I am glad to hear that you are back in the 18% range. Perhaps that transplant is not as far off as you were now thinking. I'd give you one of mine!! Of course, I also have WG/GPA but my kidneys haven't suffered yet!
Dialysis sounds frightening to me. It always has, way before it was on my radar this much.
I will continue to send good thoughts and prayers your direction!!!

Just a data point - may differ with others - I have no idea how this works. In my case, my kidney function improved over a year and a half time frame from 18 GFR to 26 GFR and knock on wood may continue to improve. Every few months, up to and including my last test last month, there has been a small but significant and seemingly stable improvement in my kidney function. For several months at time it remains with in a range and then suddenly a bigger improvement occurs. It's a mystery but a good one!

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Originally Posted by LisaD1

Just a data point - may differ with others - I have no idea how this works. In my case, my kidney function improved over a year and a half time frame from 18 GFR to 26 GFR and knock on wood may continue to improve. Every few months, up to and including my last test last month, there has been a small but significant and seemingly stable improvement in my kidney function. For several months at time it remains with in a range and then suddenly a bigger improvement occurs. It's a mystery but a good one!

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That is wonderful. This is what I was hoping for gilders to happen.... What meds are you on ?

Thank you for your words of encouragement and hope that my kidneys will recover function.
I also hope that this is the case, but realistically, it's highly unlikely.
My kidneys have been damaged and have been partially recovering for over 20 years. But no matter how much they fight and recover, they are overall on a downward spiral.

I really need to get prepared for dialysis (physically) by "growing" a fistula or having a catheter put it place. The fistula will especially be a good idea as it can be in place unused for a long time (maybe indefinitely) and if my kidneys do hold out for a long time, at least it will be ready and fully "grown" when the time comes.

Quote:

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Originally Posted by Alysia

That is wonderful. This is what I was hoping for gilders to happen.... What meds are you on ?

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I am only on 5 mg prednisone! nothing else. I did have a high dose prednisone event in the hospital for asthma a few months ago but relatively quickly tapered back to 5 mg pred. and I am feeling better than ever. My kidney decline only really went south very fast 2 yrs ago so I haven't suffered declining function for a long period - checked monthly. I was treated w/ cyclophosph (sp) and pred about 6 months after the decline began. I expect some function is lost for good (one kidney mostly atrophied per scans) but I'll take what I have for now!

something to cheer you up gilders, and others.... : World?s First Implantable Artificial Kidney Could Enter Human Trials By 2017

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Originally Posted by Alysia

something to cheer you up gilders, and others.... : World?s First Implantable Artificial Kidney Could Enter Human Trials By 2017

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Wow thanks Alysia.

Gilders - thank God! make sure you drink lots of water in the days before the blood work so not dehydrated! Hoping the 18 % stays the same or gets even better.

Thanks Alysia. Usually these type of stories are about solutions that might become available MANY years in the future, but this one expects trials next year and possibly be available in 2!

I'm just waiting for 3D printers to make functioning kidneys. I could have a few on stand by, in all different colours!

The sentence "only one in three dialysis patient survives longer than five years without a transplant." , scares me so much. On one hand I have been getting stressed/upset with this looming over me, but it has also made me appreciate the small things in life so much more.
I feel stupid that I've known for over 20 years a time will come that I need dialysis, but only thought about the hassle of dialysis, rather than the poor life expectancy.

They cant really tell the life expectancy for sure. Look at us, Pete, most of us were not supposed to live according to the literature but we are still alive & kicking....

A few years ago they started an experiment in Canada using pig kidneys to transplant in people with diabetes. I get this type of news since my mother died from kidney failure caused by diabetes. Most of her siblings did too and my sister and I and my sister both have diabetes.

Pig organs are the most similar of domestic animals to people and skin has also been used for emergency care. The goal of the experiment was to find out if this was a viable resource due to shortage of people kidneys raising pigs for this purpose could solve the shortage problem if such treatment was effective and feasible. The question was whether the drugs we take like AZA and MTX would harm the body more than damage caused by failing kidneys. I wonder if the experiment is still going and what the results are so far?

I did some checking and found this article:
http://www.medicalnewstoday.com/articles/269738.php

Just wanted to let you know, gilders, that I keep you in my thoughts & prayers. Here for you. Anytime you feel like.

Definitely good news, Pete! I hope those blood tests keeping going in the right direction! Other than the kidneys, how have you been feeling?

Hi all,
I've had a busy couple of days, so apologies for long post.
I had the pre-dialysis team visit on Thursday and my Vaculitis/Wegener's appointment, Rituximab infusion and echocardiogram on Friday.

The gentleman from the pre-dialysis team was very friendly. To be honest, I didn't learn much new information as I've been researching a lot online. What I did learn was a little disappointing. I was hoping that I could postpone dialysis until I began to feel so ill that the benefit of dialysis out weighted the negatives. But the pre-dialysis gentleman explained that delaying it would not only cause me to feel more ill, but would actually cause other permanent damage/problems due to kidney failure.
When going through the choices he said that Peritoneal Dialysis (PD) offers the best results. I asked if PD was better than daily Haemodialysis (HD) and he replied that they don't offer daily HD treatment. He also went on to explain how the dialysis at hospital is really struggling to cope. He went on to mention that some people are only having dialysis once or twice a week. I'm concerned that patients are only having dialysis once or twice a week not for their benefit, but because they can't fit them in as often as what would be ideal.
My main issues between choosing HD (bleeding risk and poor veins) and PD (infection risk with being immunosuppressed), were only answered with "we wouldn't know until we tried". I know nothing can be guaranteed, but I'd like to know what is the most risky in my circumstances, but no-one will commit to an answer.:predrage:

My Rituximab infusion went well ONCE they managed to get a cannula working. They tried a couple of different style cannulas in different areas and I've been left badly bruised. I really can't see how I'd manage Haemodialysis when my body won't even accept small cannulas. I am definitely thinking I'll have to go on Peritoneal dialysis, even though it's not recommended for immunosuppressed and people with problems with bowel movements (like me).

During my appointment for Wegener's check up we discussed my kidneys. The doctors thinks that as long as my heart tests come back fairly good, I should be ok for transplant in about 6 months. This was good news as I was thinking it would be 8-9 month before I'm ready. My aim is to avoid dialysis and get a transplant first. My wife has offered her kidney to me, but it is early days and although unlikely to be a match, she is offering to "swap" with another couple. The next time they will try match couples is October which is a little too soon for me. The next run after that would be January.
Therefore my hope is either that my wife's kidney is a match and I can have the transplant in 6 months, or we manage to get a "swap" in January. All this, I hope, happens before my kidneys fail to the extent that I need dialysis.

Apart from being quite stressed at the moment, I feel well enough that dialysis would actually be detrimental to my daily life. I also feel that the risk of a transplant operation wouldn't be worth the slight improvement the new kidney would make me feel.
BUT if I wait until I feel SO ill that I want to go through with dialysis or transplant, I would be at more risk of the transplant not being successful or organ damage from delaying dialysis.

Dear Pete.
Thank you for the detailed update. Not an easy time for you, to say the least.
Thanks God for another rtx. I am glad you were able to have it after all. Weggies veins become tough to handle over the years. I saw it with my beautiful Phil. They poked him so much, and it was complicated to set the line for plasma pheresis and to keep it working. So in my humble opinion, dialysis in hospital will be better in case of stubborn veins.
I have a weggie friend on facebook who goes to dialysis 3 times a week in an outpatient clinic. From his reports it sounds comfortable enough.
We also know few weggies who have kidney transplant. One as a kid, age 10. Also we have Rebekah in this forum, if you want to send her pm and more on facebook, if you will want me to connect you with them. The change is not little but great. They are as good as new, literally.
I understand how scary all these might be. But you have a good hope for better days.
Hang in there. Keeping you in my daily prayers. Please update us.

Oh, sweet gilders, I am so sincerely praying for you. Such choices. You have been through SO much and it seems everything that is supposed to help you is also a challenge. How does one make such a decision? I can't even imagine what that would be like, nor do I know which one I would choose if I was in your shoes!
Isn't it lovely that they respond with "we don't know until we try!" I don't like that. I want to know that you will be OK.
Sending you all my love and prayers.

Good analysis of your issue. I have friends who do their dialysis at home. Less risk of infections there if you keep sterile technique. You might have to switch from one form to the other as your health condition necessitates. I have only seen good news fro people who had transplants. The one down side is having to do pentamadine or equivalent treatments due to suppressed immune system since transplant recipients have to also take immunosupressants to avoid rejection of the organ but that could be a plus in help control the Wegs..

Here is another one to cheer you up gilders, and others around... I hope the link works
https://m.facebook.com/story.php?sto...47644198825411
If not, it is on facebook page of a weggie friend who is searching for a kidney:
https://m.facebook.com/Amberskidney/

I've just returned from my holiday to Portugal. It was a very close call as whether to go or not. I must have picked up a virus immediately after my last RTX infusion, which was a week before I was due to fly out to Portugal.
Whilst on holiday my wife received the results from her blood test. Unfortunately her blood is not compatible with mine, so we've failed at the first stage of me receiving a kidney from her :crying:. She is still willing to swap with another couple if one can be found.
My dad is willing, but I'm not sure if that will be a good choice as he's fairly old (64).
My son's girlfriend has offered. Her blood type is O so it's compatible with my A+. She's also young, doesn't drink or smoke and is fit and healthy (as far as I can tell). Obviously there's a lot more compatibility tests than just the blood group, but I'm hopeful it's a match. Half of her family are supportive and the other half aren't. I hope she doesn't change her mind.

Thanks for the update, Pete. I am glad that you were able to have the trip to Portugal and that there might be some options to get a kidney. Your son's girl sounds sweet & kind. I think that the kidney can fit if the body size is similar.
Keeping you in my prayers ♡

Went to a Pre-dialysis meeting yesterday. There were nurses discussing various options and patients telling their story.
I was already 90% certain that I would choose Automated Peritoneal Dialysis (Performed EVERY night, at home, through the stomach) if I don't get a transplant first.
I had already done lots of research so didn't find out much new info, but having the patients there to tell their own story and answer questions was helpful.
Unfortunately the few new bits of info I learned was a bit negative -
Firstly, if I was to receive a kidney and it failed, the remaining kidney function I have would drop and I would have to go on dialysis immediately. I never thought of this and just presumed that if the transplant wasn't successful my kidney function would be the same as before the operation.
Secondly, my healthiest potential donor is my son's girlfriend. She is happy to donate and understands the slight risk and likely pain post op. But when I spoke to a transplant about my potential donors (Father, wife and son's girlfriend) she mentioned that they're not as keen on having donors from young women who haven't yet have children. Not because there would be any issue in getting pregnant, but the birth itself is stressful on the mother's body. This was the first time I had heard this and all the literature I have states that pregnancy is not effected by having one kidney.
Obviously I want my son's girlfriend to know all the facts and then make an INFORMED decision. My wife seems to be ruling my son's girlfriend out as a potential donor and I'm concerned that she might persuade her not to donate, rather than letting her make her own mind up.
Thirdly, the Automated Peritoneal Dialysis that I have chosen if I can't get a transplant early enough isn't an option until I've done Continuous Ambulatory Peritoneal Dialysis. This means that I would do dialysis through my stomach 4 times a day EVERY day for 3-6 months.

There was some good news though -
Firstly, although my wife has incompatible blood group. With modern techniques there is a slim chance the our antibodies might be compatible and she could donate to me.
Secondly, although the idea of having dialysis 4 times a day, every day is daunting, one of the patients showed us him having an "exchange" (the dialysis procedure) and he didn't look to be in any discomfort.

I am so sorry, Pete, that you need to face those very hard decisions.

Are you also on a transplant list ?

In Israel almost everyone signed on a card for organs donations. Each one wrote what he will be willing to donate, in case... some are even willing to donate their whole body to med school. I signed it few years ago, willing to donate my kidneys or so, but I doubt they will use mine. We have many young and healthy people dying here, soldiers and in terror attacks and sometimes there are stories how an organ from a dead soldier saved the life of a palestinian girl. But since its politics almost, I will be back on topic.

Is there something similar in the UK ? If you are on the transplant list will they call you if they just have someone who died and can fit ?
How urgent is it now for you to go for it ? Do you need to do some tests before ? When my sweetie was a candidat for transplant they sent him to many tests, many were to check his heart.

Keeping you in my daily prayers. Please update us.

Hi Alysia,
I am not on the transplant list (for a deceased donor) because my preference is from a living donor for a few reasons (hope that doesn't sound like I'm being too picky).
The advantages of living donor are numerous -
1. Plenty of time to do many tests on the donor to check the health of the kidney and compatibility.
2. A date and time would be set for the removal and transplant. This is important as it means the surgeons will be wide awake and prepared. A deceased donor can happen at any time meaning a surgeon may have had little or no sleep.
3. Kidneys are the last organ to be removed from a cadaver. Not only does this mean the kidney is slowly deteriorating as other organs are removed, but they often get damaged whilst other organs are removed. They then need to be repaired as quickly as possible.
4. I have bleeding problems and take warfarin. This means I really need a planned date to prepare my blood, rather than a phone call telling me I'm going into surgery in a couple of hours.
5. Living donor kidneys tend to start to work immediately and last longer.
6. If I can find a living donor, it means I free up a space for someone else on the transplant list.

You ask "How urgent is it now for you to go for it ?"
That is the Million Dollar Question!
You are not usually considered for transplant until your kidneys are down to 15%. Mine are 18% and have dropped to 14% on occasion, but seem to have stabilised at 18%. Many patients have a steady decline in kidney function and it can be predicted when they will reach 15% or less. I am different. My function dramatically drops, then stabilises (sometimes for many years), as you might have guessed, this coincides with WG relapses/flares and periods of remission.
I have been in remission for about 6 months. If I knew that I would stay in remission for many years it would be likely that my kidneys could hold up just as long. But we never know when the next flare/relapse will be. Not only would a relapse/flare damage my kidneys to the extent that I'd need dialysis/transplant, but even a simple cold or virus could be enough to damage them.

Until I went to the meeting a couple of days ago I thought it would be better to have a transplant too early (i.e. before I actually need dialysis) than too late (after I've started dialysis), because transplants are more successful done before you need dialysis. But when I found out that a failed transplant would result in my remaining kidney function ceasing (and therefore requiring immediate dialysis) I'm not sure whether to wait.

As for dialysis, there is not an actual percentage of renal function that dictates when you should start dialysis. Some people have strong symptoms of kidney failure at 20% function, others can go as low as 5%. I'm certainly suffering with many of the symptoms (worst one being exhaustion), the only thing holding me back from pushing through an immediate transplant or going on to dialysis immediately is the fact that my symptoms may not all be down to kidney failure and therefore transplant or dialysis may not improve my health by much when I will still have other problems (W.G., heart failure, lung problems, etc, etc). I wouldn't be too happy doing dialysis 4 times a day, every day and not feeling an improvement in health.

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some are even willing to donate their whole body to med school

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I have considered donating my body to the University of Washington med school simply because I have so many odd things wrong with me. The only thing that has stopped me is that I don't think you have any control over how your body is used once it is turned over to them. I would hate to simply be hacked up by first year students trying to figure out where the heart was located. I would want to have them analyze all my problems and give a report to my wife or kids. I (they?) would be particularly interested in how the damage to my phernic nerve came about. That is a total mystery.

Gilders,I am so sorry to hear you are having to go through all of this. So many decisions to make. Hopefully your sons girlfriend will donate. I would have her talk to an obgyn about the possible effects of her getting pregnant.
You certainly have done your research. I can see where you would rather it be a living donor, there are to many "ifs" the other way. I really hope you don't have to do dialysis 4 times a day.

I have on my drivers license that I am an organ donor. I plan on being cremated so if they is anything someone else can use to live..I won't need it. But I was wondering if people with an AI disease if that matters about donation. Like I am sure no one would want my lungs !

It's so pleasing to hear that people are willing to donate their organs after death. :thumbsup:
I think there would be many willing people, but many just never get around to filling a form in or simply ticking a box so the right people know their wishes of donating.

One of my doctors told me that no one won't take any of my organs for donation because of my health issues. They won't take my blood either. I can understand that my damaged organs would be poor choice but if I had a kidney with 15% function and could get a kidney with 30% function it would seem a step up, but not if it gave me GPA or other issues.

Has anyone been told they are not a candidate for organ donation?

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Originally Posted by drz

if I had a kidney with 15% function and could get a kidney with 30% function it would seem a step up, but not if it gave me GPA or other issues.

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Even a very healthy kidney, let's say with 100% filtration ability, will significantly drop in efficiency as soon as it leaves the body. Therefore only very healthy kidneys are removed from living donors. The number one concern for drs (at least in the UK) is the donor's health and rightly so. So they would not want to leave a donor with one kidney unless the remaining kidney is very healthy. They will always tests both kidneys and the donor always gets to keep his/her's best kidney.

Thank you, Pete, for the detailed explanations. I understand now why alive donor is better.
You have multiple considerations to take into account all at once... not an easy mission to say the least. Its good that you can research it all in advance. You are becoming THE expert.

I pray that God will provide the best option for you, this way or another.

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Originally Posted by drz

Has anyone been told they are not a candidate for organ donation?

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I signed the card of organ donations in a weired situation: I was sitting on the train with 3 ladies who turned out to be nurses who are working in transplants. They convinced me to sign the card, although I explained about my wg. They didnt say that they will not use my kidneys but either that they will. They say that signing the card gives me priority if I will need transplant. So I am not sure... I dont mind to give one kidney now if it useful to anyone. I dont have wg in the kidneys. Gilders, my blood type is AB minus....
Although I underatand that it is better not to take mine...

Hi Gilders. I saw this article and recalled that my wg dr. Just told me that they treat with it.
Check it : Researchers find drug that could halt kidney failure ? Medi Cures

Hi Alysia, I somehow missed your previous post (#41). I like the idea that in your country if you sign up as an organ donor, you get priority if you need a transplant. It only seems fair that people willing to donate get priority for receiving.
Thanks for the info on abatacept. I'm not sure if it would help my renal failure, but it looks like I wouldn't be able to receive it anyway - NICE (National Institute for health and Care Excellence) dictate which drugs the NHS can use and for what purpose. Their website looks like they only authorise it for use for Rheumatoid Arthritis after previous treatments haven't been successful.

I had an appointment with my nephrologist just a few days ago. It did not go well. My nephrologist has told me that the NHS will not fund tissue match tests for all my potential donors as it's too expensive. He thinks the best donor will be be my father (even though he's 64). I really wanted to have a living donor transplant before I went on dialysis as it has the best success rates. My biggest disappointment is that my Dr thinks I'll be on dialysis before I get the transplant. This is not because he thinks my kidneys are rapidly deteriorating, but because the process of transplantation from start to finish takes such a long time on the NHS. It can take about a year just to do the matching tests and if my dad isn't suitable, I'd have to start all over again. The longer I'm on dialysis the less chance the transplant will be successful for many years, plus the more chance of me being declared too high risk (as my health will deteriorate on dialysis).
I am so annoyed :predrage: that it has been left so late to begin testing potential donors when I first told my Dr I had potential donors many years ago and my wife has reminded him at every appointment since.

Alysia, when you wrote "Gilders, my blood type is AB minus....
Although I understand that it is better not to take mine..."
If that was an offer of donating a kidney to me then I can not express how grateful I am for your offer. You really are too kind and generous. You are right about the blood group being incompatible. As I've previously mentioned, my wife is incompatible also. There is a way around it using plasmatheresis and extreme immunsuppression, but it only happens as a very last resort.
Considering how long it takes for the tests to be done under the NHS and the fact that you would be a last resort back up, realistically I would either have being matched with one of my current potential donors, too ill for transplant due to too long on dialysis, or unfortunately, dead.

I just need to prove my nephrologist wrong and keep hold of my remaining 15% function until transplant date.
He has already requested an appointment with the team that do the surgery for a Peritoneal catheter and a Vascular surgeon to create a fistula.
The NHS is at breaking point where I live. For example, the vascular surgeon will first see me sometime this Fall/Autumn, then I'll need to wait for an appointment for my veins to be mapped. When everything is set up for surgery, there is a further 6 months wait for the operation!

My cousin who lost her mum last December had a miscarriage last week and my stress levels are soaring at the moment. My mum has her mastectomy on Tuesday, after 12 awful weeks of chemo. But fortunately her scans came back good the other day, so it looks like she's free from cancer at the moment.

Dear Gilders.

Yes. If my kidney can be useful I will be glad to give one to you or another friend or relative.

I am so sorry for all the stress that you have to deal with in too many issues. Indeed overwhelming. Thank you for sharing with us. At least you have good news that your mother is clean of cancer. Thanks God.

I am not sure if being on dialysis before transplant means always worse outcomes... I hope it is not. From what I understood from friends on facebook, it is not an axiom. Also I didnt see friends on dialysis getting worse. I might be wrong. Just my impressions.

It sounds so frustrating to deal also with your health services, having their own time and thinking about money. Such a shame. We see it all over the globe. (Not sure, but it seems to me that not in Australia.... ).

If that med, Orencia (thats her name in Israel) can truly help your kidneys maybe the meds company will be willing to give it for free ? Worth asking.

Hang in there. I understand how rough it is all and I keep you in my daily prayers.

St. Padre Pio said: pray.hope. and dont worry.
I hope it can bring more peace to your soul.

I am surprised, but happy, that the renal section on this forum is very quiet. This suggests that not too many forum members have kidney problems, which is great!

Anyway I thought I'd update on my situation with dialysis and transplant.
Towards the end of summer last year it was decided that I would have both Haemodialysis access (fistula) and Peritoneal Dialysis access (catheter in stomach). It was then decided that as I was initially starting peritoneal dialysis, it wasn't worthwhile to have a fistula as back up.
At the meeting before my catheter surgery, I said I'd decided not to have any dialysis. I wanted to cope with my symptoms rather than wear out my peritoneal lining. Plus considering transplants are more successful done before dialysis has started, I thought postponing dialysis would be best.
It was decided that between my dad, wife and daughter-in-law, it should be my dad that went through to the final stage of donating.
It's now almost April and my dad is still having tests and I'm still due tests and various appointments. The process is ridiculous slow.

The good news is that my kidney function has been stable for about 10 months now. I really don't know if I should go through with a transplant at the moment. I don't want to have one too early. Donor kidneys don't last forever, so I'd rather make use of the donor kidney when I REALLY need it. But the risk of turning down a transplant would likely end in a scenario where my kidneys fail further and I'd have to start the transplant process from the beginning again. As this is likely to take over a year, this would mean I am on dialysis for over a year before I finally get the transplant.
Me and my father will carry on having tests and if my kidney function deteriorates, my mind will be made up and transplant will go ahead. If we get to the end of all the tests and my kidneys are still stable, I'll have a big decision, whether to have the transplant or not.

Thanks for the update, Pete. I am glad that your kidneys are stable and that your father will prob be able to donate... tough decisions to make.. I know few weggies friends on facebook with kidney transplant who are doing good years after the surgery.. so there is a hope. Keeping you in my thoughts and prayers.

Glad to hear a pretty positive report, Pete! I hope you won't need a transplant, but what a blessing to have your dad as a possible donor. All the best to both of you!

Sent from my MotoE2(4G-LTE) using Tapatalk

I found this one to cheer you up gilders and the others...

https://troab.com/worlds-first-bioni...ust-two-years/

Hi Alysia. Thanks for this. I did come across it last year (possibly Blake told me?).
It really does sound very promising. Probably too late for me at the moment, but hopefully by the time my donor kidney "wears out", it might be available to me.
I'm trying to keep as fit and healthy as possible ready for the transplant. My kidney function is fluctuating between 14-16%. They only perform transplants when your function is consistently 15% or less. My kidneys are real fighters and refuse to stay below 15%.
I'm enjoying the new house and making good use of the garden, growing fruit and veg, whilst keeping as fit as possible.

My main problem is severe joint pain (rheumatism ). I had my final rtx fusion 5 months ago and been off pred for about 4 months. I hate the side effects and weight gain from pred (I already lost 7kg), but I'm in so much pain without it.

Hi Pete. Thanks for the update. I am glad that you enjoy your new house and that your kidneys are stable after all. As for the joints pains, I think that many of us cant make it without any pred. Sorry to say so. Also 5 months after rtx might be the time to prepare for the next IV and your joints are just telling you so. Hang in there. I keep you in my prayers.

UPDATE
I started this topic over 18 months ago to help any others that are needing to look into dialysis. I expected that I would be on dialysis within a few months and hoped for a kidney transplant within a year. It has become a kind of journal of my journey and has evolved from dialysis choices to transplant.
The good news is that, miraculously, my kidneys are still holding out at 14%. The bad news is that the transplant still hasn't happened and I'm running out of time.

I had a good enough tissue match with my dad, but when they physically mixed our blood, there was signs of rejection. I have many different antibodies due to the multiple blood transfusions I received when I was first diagnosed with Wegener's and on death's door. They have decided to repeat the tests to see if the reaction is less this time. I will find out the results about a week before Christmas, but it doesn't look too promising.

If the reaction is not too severe then there is a possibility of giving me plasmatheresis before the transplant and having me take a stronger dose of immunosuppressants after. The immunosuppressants have bad side effects and being severely immunosuppressed puts me at risk of fatal infections. So it's not an easy solution considering I'll need to take them for the life of the kidney.
My other option would be to have my donor swap with other donor/s, but there will still be a struggle to find someone compatable due to all my antibodies.

I may start a new thread titled "transplant" for any more updates considering I've strayed away from the original topic of "dialysis choices"

I received my first Christmas card of the year today, so I'll take this opportunity to be the first (at least I think I'm the first) to wish you all a very Merry Christmas with good health and cheer!

Yes, indeed, Merry Christmas to all! And, I hope you find a match soon.

Thank you for the update, Pete. Thanks God that your kidneys behave, waiting patiently to be replaced.

I hope that the blood issues can get a good solution soon. I had a thought, please forgive me if its too foolish: my blood type is AB minus. During my pregnancies I got few shots in order to prevent my blood to hurt my babies', in case that their type of blood is positive. Acording to this rational, is there any shot or other intervention that your father can get in order to protect you from a different blood type ?

Wishing you a blessed Christmas, with the gift of perfect new kidney. Keeping you allways in my thoughts and prayers.

Quote:

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Originally Posted by Alysia

is there any shot or other intervention that your father can get in order to protect you from a different blood type ?

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It is my antibodies that would "attack" the new kidney, so it's me who would need extra treatment, not my father. It's not my dad's blood/tissue that would attack me, but me that would attack my dad's blood/tissue. So treating my dad wouldn't help.

Quote:

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Originally Posted by gilders

It is my antibodies that would "attack" the new kidney, so it's me who would need extra treatment, not my father. It's not my dad's blood/tissue that would attack me, but me that would attack my dad's blood/tissue. So treating my dad wouldn't help.

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When Phil was candidate for lungs' transplant, the transplant dr. told us that he had done 3 transplants surgeries to weggies, and that thanks to the meds which were powerfully preventing the body from attacking the new organ, also the wg became totally quiet.