Dialysis choices

[gilders]

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.

[Alysia]

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....

[drz]

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

[Alysia]

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

[vdub]

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

[gilders]

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.

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.

[Alysia]

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.

[NikkiNicole]

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.