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« on: December 23, 2017, 02:11:24 AM »


I'm Val. Many years ago I was a member of this site and I am finding I need community again.

I'll give you the bare bones of my story.

When I was 2 my brother got really sick and once they figured out what was wrong with him (Alport Syndrome) my mother and I were both tested. Turns out we three won the genetic lottery  :sarcasm;  I grew up with my brother being on dialysis, he did both hemo and peritoneal, and in his too short life he had 2 transplants as well. He passed when I was 11. He was only 19.  When I was in my teen years (about 15 ish) my mom ended up on dialysis. She only did peritoneal and had no interest in a transplant. As with my brother, I helped set up the night cycler and helped her out as much as I could while still being in school. Shortly after I turned 22, she passed as well. She was only 48.  During all of this, I myself ended up on hemo when I was 20. November 17, 2005. My life crashed around me and it seemed too cruel.  It wasn't long after my mom passed that I found this site and talked to some wonderful people which helped quite a bit now that there was no one.  With the support I was able to pick myself up, and live. I met my fiance and we've been together almost 8 years now. I'd never really considered I had much of a future with anyone as everyone I had met backed away or ghosted me when they found out about my health. Not everyone can handle it, I get that, but the rejection for something out of my control still hurt. After a couple years together I started thinking about getting a transplant, and sweetheart that he is, get got tested and was a match. Unfortunately he was disqualified as his BP was just a bit to borderline high for them to be comfortable. So I went on the list. 7 years to the day my life changed, it changed again. I got that magic phone call. They had a kidney for me, and though it was slow to start, it did start and gave me freedom. More importantly it gave me hope. It was a roller coaster of emotion after but we got through it and I was determined to live. Hemo took so much out of me I did that, then I crashed and was exhausted and drained until my next session. I was out of the work by this time about 8 years. I took advantage of job training programs and ended up with a good internship, after that ended had a great term position because of the training I received. I took some more little courses for interview skills and resume writing at a fantastic program we have here in order to fully take advantage of all I could to get myself off disability. It worked, about a year and half ago I landed a job in my cities transit department working for our Handi Transit service. I was now helping people, which I've always wanted to do. It may not seem like much booking rides etc for people, but what I do, and where I work helps people who can't take regular cabs or bus service get out and maintain their independence as well as get to and from life saving treatments such as dialysis. I have a unique perspective that my coworkers don't and I know I make a difference. Even a small one.

Now for the hard part. Present day. December 13, 2017. My bloodwork has been declining and my numbers are not good. Creatinin is 333 and my eGFR was at 14. Just the latest in a bunch of poor numbers.  My doctor doesn't think a biopsy is worth doing as after my last one there was already a lot of scarring, and with my numbers trending the way they are the outlook is not good. By his best estimate I have until around March, depending on how I feel/bloodwork and I'll be back to the machine.

It's my worst nightmare. I now have a decision to make. Go back or don't. My country has Medical Assistance In Dying (MAID) laws. So it's an option. On one hand I really don't want to die. I want a life with my love, with my chosen family. On the other, hemo always felt like a living death to me. Largely colored by my past and I know that. My fiance will support me no matter what I do, and while he would rather I not die he saw what that life did to me. I always said I wouldn't go back. Life is different now though. I'm finally financially independent,  have a good and well paying job that's with my city and very understanding and accommodating with health issues etc. A true equal opportunity employer. I could keep my job and go back. I could get listed again and get another kidney. Or, I could not. I am torn between living and dying.

While the fiance is supportive my so called best friend made the fact that I might die and not do dialysis all about her.  I've been shut down for the last 10 days. One because of the shock of what my Dr told me and also because of that selfishness.

I'm lost

 :sos; :sos; :sos;

Alport Syndrome
HD started November 17, 2005
Countless line insertions
2 fistula creations (first one failed due to me being hypercoaguable. Antiphosphlipid Anti Body Syndrome)
Parathyroidectomy w/partial forearm implantation
Transplant, November 17, 2012

Currently transplant is failing and it's just a matter of time
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a good year for Chevys

« Reply #1 on: December 23, 2017, 07:53:16 AM »

Wow. And I mean wow. You've sure had a tough time. Home HD or PD an option?  Don't make any 'final' decisions until you've had more time to process this shock. People in your life need you, even the ones who aren't very good about how they express it. Your life has value, and I'm rooting for you!

PD for 2 years then living donor transplant October 2018.
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« Reply #2 on: December 23, 2017, 08:38:57 AM »

Val, I am very happy that you've come to IHD to allow us to try to support you through what is every tx patient's worst fear.  Forgive me for being curious, but is the failure of your tx because of the Alport's, or is it just because of not one thing in particular?  I'm sorry I don't know more about Alport Syndrome.

I am sorry that your best friend has not been more supportive.  Is she an inherently selfish person, or do you think it's possible that she made it "all about her" because she's genuinely afraid of losing you?  If it is the former, she is making your already heavy emotional load just that much heavier, and it would be in your best interest to try to put her comments out of your mind.  I know that's not easy to do, but you have other more pressing concerns and can't really afford this particular energy drain.

I agree with Cupcake that this is not the time to make any "final" decisions.  You are smart to recognize that your life is very different now from what it was like when you were younger.  You genuinely have more to live for.  But only you can decide how much you are willing to sacrifice in order to hang on to all of the things you value now...your fiancé, your financial independence, and a job that gives you self-esteem AND makes life better for other people who depend upon you.

It is so hard to hang on to meaningful employment while on dialysis, and not enough is done to help patients retain their jobs.  Going only by your post, it appears that you have what so many patients lack...a real chance to keep your job with an employer who has shown willingness to accommodate your medical needs.  You are fortunate.  You have a real chance to retain a modicum of a normal life despite dialysis.

The idea of remaking your life, back on dialysis, is exhausting.  The shock you've felt is tremendous, and I am so very sorry that you are having to deal with this.

I don't know how the rules work in your country, but if your egfr is 14, can you go ahead and be evaluated for a second transplant?  This might serve as a positive step forward for you, a way to regain some control over your life and a way to lessen the negative impact of ever declining lab results.  It is horrible going in for lab work knowing full well that things are never going to get better.

Whenever you feel like it, please let us know more about your thoughts.

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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When all else fails run in circles, shout loudly

« Reply #3 on: December 23, 2017, 09:16:17 AM »

Hi Val, I second all that above posters say. I too believed that there was no way I would dialyse again after having had my dad's kidney for 13 years. But my life had become completely different too.
And as I crashed into D again I discovered D has improved too.
As my fistula didn't work I restarted on PD. This kept my dad's kidney hobbeling along for another 5 years.
Is PD (APD) an option? And Home HD? Check it out when you feel up to it.

Wishing you love, luck, strength and wisdom, Cas

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
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That's another fine TARDIS you got me into Stanley

« Reply #4 on: December 23, 2017, 11:42:37 AM »

First off, my sympathies to you for you predicament. As to my thoughts on what you should do (N.B. these are my thoughts, please do not feel I am trying to tell you what you should do - take my advice or ignore it as you like, it is your life, not mine - I am only giving you my thoughts). As someone said, look into PD, that is a lot easier and can be done at night while you sleep. I was supposed to have this (other medical problems made it impossible in the end) and from what I was told, it takes a while to get used to, but once you are over that period it is easier to take than HD, does not leave you as tired afterwards, and as it happens while you sleep, you don't loose three days a week at it.

If that is not possible, look into home night HD. I am told that after you have had some practice at home HD, that too can be done overnight so you don't loose the days. Plus you can do it more often (you are sleeping, what it matter to you if you are dialysed even every night?) and doing it more often means less fluid is taken each time, which means you will not be so tired afterwards, hopefully not tired at all during the day.

And if that is not possible then please remember there are things you can do to reduce, or even eliminate, the tiredness between sessions: The tiredness you felt before was due to the quantity of fluid they take off. This ts caused both by the quantity you drink (obviously) and what you eat. Most meat and vegetables are about 70% water when broken down in your body. If you can reduce the water in, you reduce the water out, and the non dialysis days are better. Also keep an eye on your hemoglobin levels. The wrong dose of EPO or iron will reduce this and make you tired, getting that right is another way to make your days better (do not rely on the doctors to do this, they worked my ideal doses out, and I was still finding myself tired most days, some time later,for unrelated reasons, I switched from their IV iron once or twice a month, to daily regular dose iron tablets from the drugstore - the type lots of healthy people take as a supplement - this cured my tiredness most of the time {still occasionally get tired days, but they are usually due to too much liquid taken off or screw ups by the nurse with the needle - if it touches the side, that is me weak as a kitten for 24 hours})

Whether you take any or none of the paths I suggested, can I mostly suggest that you make no decision right now. Even if the only option is the same hemodialysis you had before, try it before giving up. As someone said, the machines are improved all the time, you might find it easier this time. Also you are stronger, so you may not be so tired this time, life may be better this time on HD for either or both of those reasons, so don't give up before at least trying it and finding out.

Remember, you always have choices if you try one type of dialysis. If it is not for you, you can try a different type that maybe right for you. And even if you find that none work, you still have the option of coming off dialysis and letting nature take its course. But if you do it the other way round, give up any form of dialysis without trying, and let nature take its course from the outset, then you have given up all your choices. If you decide you don't like being dead you cannot say "OK, can I try that PD now instead?" Your chance is gone Try everything else first, and leave dying as the very last option.

And as a final thing: Those seven years on dialysis, we tend to remember the bad things and forget the good. The bad dominates are memories, the good hides beneath these thoughts. I'm not going to disagree with you that dialysis is unpleasant, but what about the good times during those seven years? I know there were some, and there was at least one really great moment - I'll remind you what you said " I met my fiance and we've been together almost 8 years now." Looking back on your life, if you are considering MAID now instead of dialysis, then, if you had known in advance what dialysis would be like, you would have considered it before your last period of dialysis. And if you had chosen that back then, you would not have had those good times, you would not have met your fiance. You would not have had that love.

Now think of the good things that will be in the next few years along with the dialysis. For a start there is a few extra years of the love of your fiance. I don't know what your dreams, desires, wishes are, but I know that you will fulfill a few of them in the next few years, if you are still alive. But if you go the MAID route, you will miss them.

And what about another transplant? Even if your condition does not allow that now, think how much medicine will improve over the next few years. A few years ago my sister went down with the same thing that killed our mother (as you are aware: Genes are a bastard) but my sister lived through it, because medical science has improved a lot since our mother died.

Or if not a transplant, what about other medical improvements over the years? As well as being given a chance to die of old age, another difference between my sister's treatment and my mother's is that my sister's was less unbearable. What my mother went through was so bad that she said she would rather die that go through that again, my sister's treatment was a lot less unpleasant. What are we going to get in the near future? For example most people think artificial kidneys are only a few years off, you want to miss out on that?

In short, it is your decision, it always was, it always will be. But I do urge you to try every alternative before going for MAID. Dialysis does not have to be forever, but death is.


Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
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« Reply #5 on: December 23, 2017, 12:14:16 PM »

I was moved by your post.  You have survived a lot of bad and you deserve a happy ending.  There is a possible solution for your problem.  Google Implantable Artifical Kidney. It’s making good progress and ie scheduled to begin testing  soon.  It is a medical device so rejection is not a possibility.  For the last several years I have been calling Dialysis a bridge to the future.  The artifical kidney is only one attempt to fix our problem, cloning is also being worked on.  Theirs is hope for a better future.  I survive because I know many people are working to make my life better. 
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« Reply #6 on: December 24, 2017, 07:28:30 PM »

You have had a tough decision forced upon you.  Fortunately you have time to plan ahead, look into your options.

I am fortunate that PD worked so well for me that I had virtually NO dietary or fluid restrictions. In fact, my PD team kept telling me to eat MORE potassium daily. 3 1/2 years seemed to fly by.  That all came to a screeching halt as I must have touched an open fitting while making my daily Cycler set-up.  The resulting infection fromo Hell tried to kill me, and wouldn't die with repeated courses of antibiotics.  My cath had to come out and a Hemo cath went in.  That was a year ago.  I have learned a lot.  Managed to change my diet, I severely restrict my fluids as the mere thought of a large amount to pull-off scares me.  So fortunately for me, Hemo is working quite well.  I have to admit the fear of the unknown is far worse that the treatment actually is.  My Clinic is staffed by a bunch of great people that actually seem to care about us.

Take charge of your life.  Take total control of your diet and fluids, this is one of the most critical issues as it will have an effect not only on your Dialysis treatment, but how well balanced your labs are.

You CAN Do this!
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