transplant : about to give up hope

[mcclane]

sorry if I've placed this in the wrong section, please feel free to move it to the proper area if required.

long story short, i'm on the wait list (3 years so far, and no phone call) for a 2nd kidney transplant.  Last year (sept 2010), my mom began her workup as a donor to me.  It was a grueling list of tests for my mom, but little over 4 months all the tests were done and in mid january 2011 we had an assessment with the transplant doctor.

At that time, the doctor was concerned about my mom's weight/blood pressure, and he said he would give my mom 6 months to lose the weight (he felt that if the weight came down, so would the blood pressure).  He said he would reassess in august 2011 to see if we can go ahead.  I encouraged and taught my parents the basics of working out, and in roughly 1.5 months time (since end of june 2011) my mom has lost 20 pounds.  Her blood pressure is quite normal now.

Well, it is august now, and i called the transplant clinic at the hospital to update them of my mom's condition.  Now they tell me all the tests she did last september need to be redone again !  (any tests done is only valid for a year).   

if there is any good news is that my aunt is doing her cross match testing today.  but either way, whether it is my mom or my aunt (the transplant clinic will only do work up for one person, not both), it will be next year (unless i get another roadblock) before we know anything.

I simply don't know how much more bad news/roadblocks i can handle anymore.  Since august 2010, I've had nothing but bad news regarding my kidneys.  Before aug 2010, i had to go back on PD.  that lasted a few short months when april 2011 they said my peritoneal membrane was shot.  Hemo was the only option.  So i got trained for home hemo, and have been doing that since may 2011.  In between that time, i had the cvc put in, then fistula, then they removed the pd catheter, and then a hernia repair (all seperate surgeries in about a month's time).  about the only bright spot is that the self needling training is going well (the buttonhole is developing well, hopefully by the end of this week i move to a blunt needle).

My wife and I were really hoping to know whether the transplant surgery would happen this year or not.  but now it looks like we won't know until next year. 

man, i don't know how much longer i can continue doing hemo.  it is extremely time consuming, and i feel mentally drained (it feels like my whole life is revolved around the hemo dialysis machine).

[okarol]

I am sorry. It's quite a challenge and going through all the changes and surgeries can be quite depressing. I know here that the only way to keep things moving forward is for the donor to take a very active role by calling and pushing for appointments and tests in a timely manner. I hope things work out for you and one of your donors. 

[MooseMom]

I know this is frustrating, but there's no reason to give up hope!!!  You have two people willing to donate!  My goodness, many of us have NO one at all and are looking at years and years before we have any hope of getting a cadveric kidney.  But I do understand that things have been sort of piling up on you.  I hope you get some good news soon; I know you could use it (good luck with those buttonholes...that's a big achievement!).

[mcclane]

I know this is frustrating, but there's no reason to give up hope!!!  You have two people willing to donate!  My goodness, many of us have NO one at all and are looking at years and years before we have any hope of getting a cadveric kidney.  But I do understand that things have been sort of piling up on you.  I hope you get some good news soon; I know you could use it (good luck with those buttonholes...that's a big achievement!).

thanks for putting things in perspective 

I guess in my frustration, I never thought about it that way. 

I'm not sure if I'll ever get used to jabbing myself with a needle, 15 gauge no less.  Took me a while to poke myself with aranesp, but seeing this horse needle go into the arm, that's another story lol

[tbarrett2533]

 

Stay strong!!!!

[jbeany]

I think they call us patients because they keep hoping we'll start being patient, too.  NOT!  Hang in there.   

[RichardMEL]

MM is totally on my wavelength here!

try and focus on the positives. While you're on dialysis, at least you're an acceptable candidate for tx - some patients are due to age, or other conditions, or whatever. That call COULD come at any time!! I'm serious. I know they say it and you think whatever.. but you KNOW this because you're waiting for your 2nd as you said. Yes, it's harder with the antibody count, but it's certainly far far far from impossible (look at Lori Hartwell who just had her 4th!).

Yes, that damn hemo machine and process is draining and time consuming. I did it for 4 and a half years so I feel I can comment from some small amount of experience. However I saw it as a means to an end, rather than the end. I did not live to do dialysis.. I did dialysis to live.

You, my friend, have willing donors, a loving wife, family etc - some people simply do not have that support system, people willing to go as far as they can, or perhaps unable to (like my sister who could not donate).

I get your frustration and annoyance with what's going on (or not) and how your mom's tests have expired etc, but in a way it IS a long time since her tests, and anything could have changed that they need to re-check - remember any potential donor's health is paramount in the consideration, so they will always err on the side of caution because of the "do no harm" mantra.

mate, it's difficult. I understand, and when I feel like that I try and focus on all that is good and positive in my life. And you know, I was sitting on that bloody machine thinking about anything but transplants when the call came in.

yours will come.

[mcclane]

thank you for your kind words of encouragement.  I am so glad i did find this forum, as everyone on here has their own life experiences to share about dialysis, and I've found it extremely helpful.

Usually I do keep an upbeat attitude, but I guess with all that has happened, it has pushed my stress level higher than I can bare at the moment.

[MooseMom]

Usually I do keep an upbeat attitude, but I guess with all that has happened, it has pushed my stress level higher than I can bare at the moment.

Your upbeat attitude will give you many good days, but it is unfair for you to expect yourself to always be upbeat.  That will tire you out in no time.  You will have some terrible days when your stress level will go through the roof, but those days will not last forever.

I'm really glad we have been able to help you through all of this.  I hope your frustration is short-lived.  Keep us posted!

(I have spent the past 4 days trying to just schedule my annual tests!  I can't get any of my messages returned by my transplant center.  How do they expect me to make my required appointment with them if they don't even return my calls?  Frustration is part of the whole transplant process. )

[mcclane]

Usually I do keep an upbeat attitude, but I guess with all that has happened, it has pushed my stress level higher than I can bare at the moment.

Your upbeat attitude will give you many good days, but it is unfair for you to expect yourself to always be upbeat.  That will tire you out in no time.  You will have some terrible days when your stress level will go through the roof, but those days will not last forever.

I'm really glad we have been able to help you through all of this.  I hope your frustration is short-lived.  Keep us posted!

(I have spent the past 4 days trying to just schedule my annual tests!  I can't get any of my messages returned by my transplant center.  How do they expect me to make my required appointment with them if they don't even return my calls?  Frustration is part of the whole transplant process. )

Makes me wonder why I didn't join this forum before.  It is great to discuss dialysis/transplant issues with people who are going thru the same thing.  When I was on PD, i was frustrated at times but had no one to really discuss it with.

Before returning home, my aunt did draw blood for the cross match test.  We'll know in 10 days or so if she is a match or not.  If she is a match, she told me she and her husband is committed to seeing this donation thing thru.  Her husband is very supportive of her donating her kidney to me, and she said she will donate if it is a match.

[MooseMom]

Wonderful news about your aunt!  I hope you will soon have good things to tell us in 10 days' time.

The important thing is that you are here on IHD NOW.   

[Rerun]

Her weight and BP should have been the FIRST thing they looked at before making her go through all those tests.  But NO, they get all that money for the tests and then tell her the obvious.  You need to lose weight and bring down your BP.  NOW, they tell you that she has to go through all those tests..... just to tell her NO on some other obvious point.

Reason number 457 why I will not get listed.  Money grubbing doctors.

                   

[Riki]

I know this is frustrating, but there's no reason to give up hope!!!  You have two people willing to donate!  My goodness, many of us have NO one at all and are looking at years and years before we have any hope of getting a cadveric kidney.  But I do understand that things have been sort of piling up on you.  I hope you get some good news soon; I know you could use it (good luck with those buttonholes...that's a big achievement!).

Thank you for putting it that way. I think anything I would have said would have come across as belligerent and bitter.  I try to keep those negative feelings to myself

[RichardMEL]

I have to say for a few months before I got the call I was starting to get a bit... well not bitter.. but a bit funny at times... I caught myself asking myself "When is it going to happen?" or "I'm getting sick of this routine... where is it?" and even though I was pretty stable on D and had nothing really to complain about, I had always thought 2010 would be around when I should get the tx (and it turned out to work out that way) but even me - mr positive - was getting a bit fed up at times.

And of course, like they say, when I least expected it - it happened.

chin up!!!!

[Poppylicious]

Her weight and BP should have been the FIRST thing they looked at before making her go through all those tests.

I agree with this.  I still had a fair amount of weight to lose when I had my first evaluation to donate my kidney but they knew it and I knew it, and they knew that I'd already lost weight and so were happy to continue with the tests.  One year earlier and they would have told me to go away and come back when I'd lost some.

I think you have every right to be completely miffed about it, mcclane ... and what better place to vent your frustration than here, with people who understand and can put it into perspective.  Perhaps now she's lost the weight, and her BP is under control, they can redo the tests fairly quickly?  Whether it's your aunt or your mum who becomes your donor, I hope the time flies by and things progress smoothly!

 

[mcclane]

I have to say for a few months before I got the call I was starting to get a bit... well not bitter.. but a bit funny at times... I caught myself asking myself "When is it going to happen?" or "I'm getting sick of this routine... where is it?" and even though I was pretty stable on D and had nothing really to complain about, I had always thought 2010 would be around when I should get the tx (and it turned out to work out that way) but even me - mr positive - was getting a bit fed up at times.

And of course, like they say, when I least expected it - it happened.

chin up!!!!

after reading what you wrote a few days ago, I've tried to occupy my mind with other things.  I've tried to block 'when will the call' occur out of my mind.  I figure, the less you think about it, the more it will happen.

 

[mcclane]

Her weight and BP should have been the FIRST thing they looked at before making her go through all those tests.

I agree with this.  I still had a fair amount of weight to lose when I had my first evaluation to donate my kidney but they knew it and I knew it, and they knew that I'd already lost weight and so were happy to continue with the tests.  One year earlier and they would have told me to go away and come back when I'd lost some.

I think you have every right to be completely miffed about it, mcclane ... and what better place to vent your frustration than here, with people who understand and can put it into perspective.  Perhaps now she's lost the weight, and her BP is under control, they can redo the tests fairly quickly?  Whether it's your aunt or your mum who becomes your donor, I hope the time flies by and things progress smoothly!

 

My mom has lost a significant amount of weight.  In january of this year, she was quite overweight.  I kept encouraging my mom to workout, and I would even show my mom the basics of working out.  Not until end of june did my mom (or parents for that matter) started exercising.  Since then, they've been going 7 days a week, roughly 45 min - 1 hour.  Since the end of june, my mom has lost about 20 pounds, and he bp has moved from high to normal.

I've decided that hemo will here for abit, so I'm going to make the best of it.  It still is time consuming, but it is keeping me alive. 

[paris]

Members have given you beautiful advice.  I just want to hug all of you!   This group gave me strength and when I would even think "there is no hope", people here reminded me that there is always hope and just pick yourself up and keep moving forward.   Easier said than done some days, right?   I'm anxious to hear how your aunt's blood work has gone.   


Remember to vent to all of us.  We all relate in some manner.  You can yell and scream at us and we'll just hug you right back!                

[Riki]

I am quite bitter, after nearly 7 and a half years of waiting, to a point that I had to stop coming to this site all together for a while, because I was afraid that I would take out my bitterness on people like you, Richard, who have been able to get a kidney.  I still don't go to the Transplant Stories section of this site

[MooseMom]

I am quite bitter, after nearly 7 and a half years of waiting, to a point that I had to stop coming to this site all together for a while, because I was afraid that I would take out my bitterness on people like you, Richard, who have been able to get a kidney.  I still don't go to the Transplant Stories section of this site

I try to avoid that section, too, so I understand.

[RichardMEL]

Riki, sweetie, I appreciate the concern and the care you've taken to stay away when you've felt like it is all too hard.

For my part though I say "take it out on me!" - no, I'm not into S&M or anything, but I don't blame you!!! I think I would have been pulling out my hair after 7 years. As I wrrote earlier I was starting to get a bit antsy after 4 and a bit.

I don't think any of us who have been so blessed to get that call and that gift would begrudge you, or anyone else waiting and frustrated, for needing to vent. It's like when I go to my D unit to visit... I do feel somewhat guilty in terms of the patients - specially those with no hope of a transplant - that I do not want to "show off" or "shove it in their faces" - so I don't take drinks in with me, or try to talk too much about how good it is. I'm very mindful of how it might feel to see that. Yes, if I was in the chair and I saw a former patient doing well of course I'd be so happy for them, but I also know part of me would be jeanous and wondering "where's mine?" - and by the same token where I am now I am more than aware that my tx could fail anyday and I could be right back there. I don't want to take any of this for granted or to make out that it is the solution forever.

We're all human and get frustrated at a frustrating and sometimes depressing situation. By all means protect yourself emotionally, but remember IHD is here to help people cope - so if it helps to vent.. come vent

While you're on the list and suitable for transplant there's always hope, and it *WILL* happen. Hopefully much sooner than later - that's always what I tried to tell myself when waiting and getting annoyed/depressed/bitter etc.
 

[RichardMEL]

MM/Riki and others -

a bit OT, but I have to ask - since you guys(well, ladies) avoid the transplant section, is it more difficult for you to read whebn people like me make tx related comments in unrelated posts or threads? Like do you find it hurtful, or does it make it harder to read and potentially shy away from some threads?

Would you prefer we try and keep tx related stuff to just threads in the tx forum?

[Riki]

No, it's not that it bothers me that those who've gotten their kidneys talk to much about it, I mean, I followed everything with you when you got yours, Richard. I just have a hard time sometimes seeing all these people getting theirs after a year or two and saying how long the wait was, and here I am, 7 years and 3 months in, being treated like crap by the doctors who are supposed to be looking out for my well being, and feeling pretty much forgotten by the transplant coordinator. Sometimes it feels that i'm invisible. They see me pretty quick if I set a toenail outta line. They've whipped me off the list so fast in the past, it would make your head spin.

So, yeah, I stay out of the transplant stories section and even seeing threads like this one, where the OP is complaining about how long their live donor assessments are taking. At least they know that odds are good they'll be getting that kidney. They have that light at the end of the tunnel. People like me, who have no willing donors, don't.

[MooseMom]

MM/Riki and others -

a bit OT, but I have to ask - since you guys(well, ladies) avoid the transplant section, is it more difficult for you to read whebn people like me make tx related comments in unrelated posts or threads? Like do you find it hurtful, or does it make it harder to read and potentially shy away from some threads?

Would you prefer we try and keep tx related stuff to just threads in the tx forum?

That's a very tricky question.  While I was going through my evaluation last year, I imagined the day when I would be told that I was deemed eligible and would officially go on the list.  I had dreams of getting to come onto IHD and finally being able to share that good news with everyone here who had been so supportive of me for so long.  And when the day came that I received the official letter, I chose not to post about it because I was aware that there were so many IHDers who were struggling to get on the list or who knew they couldn't at all.  The saddest part was that my mom had just passed away, so I couldn't even share it with her.  But, never mind.

I'll be honest...I can't always predict how it will make me feel to hear that others got their miracle.  It ALWAYS makes me happy.  But some days when I've been feeling particularly pessimistic and fearful, that happiness is tinged with "what if I never get MY miracle?."  For someone who HAS been able to get a transplant to say, "Don't worry, you'll get yours." just doesn't ring true.  Just because one particular person was blessed doesn't mean that I will be or that Riki will be.  We don't know if we will even survive long enough to get to the top of the list.  It's one thing to have to wait, but it's another thing entirely to know you are probably not going to get healthier while you wait.  I don't have to tell you that each time you dialyze, you run a risk of infection or all kinds of funky things that can kill you.  Even if you are thriving on D, you still don't know if it will be the next session that will kill you because someone didn't wash their hands or made some sort of error or whatever.  Patient safety isn't a huge priority here in the US, so every session is a risky proposition.  But I don't have to tell you any of this, Richard.  You've lived it.  You know.

Whether any of us find anything hurtful or worth shying away from shouldn't be your concern.   You have every right to talk about your own particular miracle whenever you want!  I would never want anyone to feel that they had to edit their comments!  And being a transplant patient isn't a picnic; this is a forum where information is exchanged, and the need for information doesn't stop when you are transplanted, just as transplantation itself isn't a cure.  The trudgery continues, but the burden isn't so heavy.

[RichardMEL]

Thanks both of you for the honest responses. I appreciate them!

I guess I asked because both as me personally and as someone who is (ever so slightly) involved in the running of IHD, I feel a responsibility to set a good example somehow, and that I don't want to be deliberately stepping on any toes, or upsetting anyone by posting inapppropriately or whatever. Sure, I get that I'm not responsible for everyone here reading and how they may react to a particular post or comment based on their own situation, experiences etc, but I do want to be mindful of where some are at - as I wrote it's sort of like how I am thoughtful when I visit my D unit of those that either can't or haven't yet got a tx and try to not "rub it in."

I remember when about a year ago and this guy in front of me got the call and everyone was so exited, and I stupidly asked him what blood group he was and how long he'd been waiting, and he'd been waiting nearly 2 years less than me, but the same general group. I admit.. I felt a bit sour. The brain part of me was quick to remind me that it's not as simple as the main blood group and all that, but still I did ask "where's mine?" - i think it's only human. I don't want anyone here reading this to feel like those sorts of feelings aren't normal or anything like that.

Riki - I totally understand where you are coming from. I do not think that you are invisible though. I think you're a "victim" (I hate that word, but cant think of a better one to use-sorry) of your situation - in that you've had two transplants already, so it was always going to take more time to get one to match you for a third. Not impossible obviously (look at Lori Hartwell!) but a lot tougher than for us "newbies" - so I'm sure you're not forgotten but more that they know that you're going to be a much harder match, and when the computer or whatever finds that match they'll be more than happy to get you going I'm sure.

That doesn't mean you shouldn't feel bitter or down when you hear of others' good fortune. I totally get that and again, it seems like a pretty normal reaction/way to feel to me.

All I can say is that to some of us you have had a more fortunate experience than others. I know you'll laugh your head off at that and think that my kidney has driven me insane (which perhps could be true given my recent poor form with the punting lol) but what I mean is you've had two transplants that lasted a reasonable amount of time - that's more than some CKD paitents can ever look forward to.

This is the kind of thinking I try and have myself - to focus on what's positive - than dwell on what's bad. I'm not for a second saying "you should be happy you had those transplants and not be upset that you've waited 7+ years so far for another shot at a normal life" - NO!!! Please don't take that from what I've written (I'd be motified!). I guess I'm trying to say that "things could be worse" - cold comfort I know.. I guess I don't have much I *can* offer at this point because I know that while I, and everyone here, pray that you get that call tomorrow, it could be some time yet. Just try and hang in there as best you can. Dialysis, as terrible and frustrating and annoying and soul destroying and risky as it is, is keeping you here while you wait for that call, and that's a good thing!

Anyway again I thank you both for the responses to my tricky question.