Getting Frustrated

[Annig83]

So, I wanted to take a poll.  How many of you out there have been waiting for a kidney from a cadaver?  None of my family nor my friends are matches, and I'm beginning to lose hope.    I've been getting irritated because some of my friends keep asking if I'm still on dialysis, or if someone gave me a kidney?!  Um, don't you think I would inform you of this major news?   

Anyway, I'm doing okay on D, and my levels are good.  I could use a little more sleep, as I've been an insomniac for the past month (no known causes).  I just haven't heard anything, and I feel like a burden on my boyfriend and my family... 
I just want things to get better sooner than later, and I KNOW I have to be patient, it's just getting a little difficult for me to keep my head up.

[amanda100wilson]

The answers that people give to your question will not really give kuch insight into your own situation.  It is difficult for you to guage whether you have been waiting an unduly long time because this time varies between transplant units and different geographical locations.  What is pertinent to you is to find out what The average waiting  waiting time for a cadaver transplant for your blood groupat your transplant facility.  Your transplant co-ordinator should be able to provide this information, as well as letting you know where you are on the list.  You may also want to find out if you have antibodies that may slow the process down. 

It is better on the whole to try not to ponder it toomuch and to just try to live your life as fully and normally as you are able.

[justme15]

yep, I'm waiting for a cadaver transplant.  I have a small family, and half have the wrong blood type, the other half aren't interested.  my husband has a medical condition that he can't donate.  and so I wait.... They say the wait for blood type (O+) is several years.

[MooseMom]

I'm waiting, too.  I've been waiting for "only" 18 months.  My husband is ABO incompatible but probably wouldn't qualify for donation, anyway.  I have only a half brother who is SO not interested in even being tested because I wouldn't give him a share of the money my mom left me in her will (she is not his mother, and she was on dialysis herself, so she knew what I would be up against).  I have an adult son, but he lives abroad and is mildly autistic, so he probably wouldn't be a candidate, either.  So, I figure that a cadaveric kidney would be just fine because then I wouldn't have to feel forever indebted to a living donor.

I'm trying to get double listed to perhaps reduce my waiting time a bit.  But I have the advantage of not yet being on dialysis, so my frustration is easier to cope with.  But I know all of that will change once I actually start D.

[Brightsky69]

Don't give up hope. 
I am O+ and they told me it would be a 5 to 7 year wait on dialysis. I had no one willing to donate or really even get tested. By the grace of God...after two years on dialysis I did receive a deceased donor kidney.

[Whamo]

I'm not even on the list yet, and it's ten year wait for type "O" blood in California.   I'm hoping for stem cell advancements to take place first.  Cheer up.  I'm the one going to the dentist this morning.   

[beachbum]

I feel your pain. I didn't even have one single family member offer to get tested. The few friends that would be willing have their own medical issues that prevent them from donating. I get the same stupid questions from people asking how I'm doing but I feel frusterated because it doesn't feel like they really care how I'm doing, they just feel obligated to ask.

Don't give up. Think positive. I know it's easier said than done but I've had to change my attitude about it because it was really getting me down. We can't control other people, hell most things in life we can't control. Just do what you can with the things you can control and leave the rest to God/whatever higher power you believe in.

[Deanne]

I'm pretty new on the list - 6 months. My three siblings all offered to donate and I know two are a match. Two were permanently ruled out for medical reasons and the third can be retested if she loses 20 pounds. I don't have high hopes. I think she's losing an average of about 1 pound/month, and most of that was because shewas sick for a couple of weeks. She laughed at me when I suggested walking her dogs for exercise. I'm lucky because the wait list here (Oregon) is only 2-3 years.

[Brightsky69]

I was getting frustrated there too when I was on dialysis. I was hearing about all these other people in my clinic getting transplanted and I wasn't even getting a call or any offers. My PD nurse kept encouraging me by telling me that my transplant was coming and coming soon. 

I try (really try  ) not to be bitter towards anyone I know who never made the offer to donate or even get tested. Yet they have no problem asking me for hundreds of dollars. Thats a whole nother story. 

The way I see it is a living donor is a special breed of person. Donors are selfless individuals who actually care about others and think beyond themselves. Deceased donors and their families are made of the same stuff. The families of deceased donors could ignore their loved ones wishes and not donate but they do donate. They can look beyond their own grief to help a total stranger. Organ donors are amazing people. Not everyone is built that way.

[MooseMom]

No one can ever accuse me of looking on the bright side of life nor of finding the silver lining in any dark cloud, but I honestly have to say that I am grateful that I will be relying on a cadaveric kidney as opposed to having a living donor because knowing me, I'd feel beholden to and concerned about that person for as long as I lived, and I am not sure I am built to cope with that.  I want to be able to get my new kidney and not feel any guilt.  I never thought I'd come around to feeling this way, and to be honest, I, too, went through a period of feeling bitter that no one would test for me.  But screw them.  I can get on with my life and never have to worry that I'm not grateful enough or that I'm not grovelling enough, you know?  It is just fine by me that I won't ever have to worry about that sort of thing.

[bette1]

I have had two cadaver kidney transplants.  I am O- blood type.  The first transplant was a 3 out of 5 match and lasted 12 years.  I waited 2 years for the transplant in 1994. 

I got the second cadaver kidney transplant in 2010 and it was a perfect match, so I was very blessed.  Every thing is going very well so far.  I waited 3 years for the second transplant.  I was able to be double listed in two states, so my wait was much shorter than average.

I didn't have anyone in my family that was willing or able to give me a transplant.  That was a bit frustrating, but I knew I'd feel really badly if someone in my family gave me a kidney and then the transplant did not work out. 

The waiting sucks!  I felt like I was going to be on dialysis forever.  People would ask me too if I was still on dialysis!  They would forget and ask me to go on vacation with them like it was no big deal.  They would ask me why I was so tired all the time.  They just had no clue.

 

[cariad]

Every time I read these discussions I feel so lucky, not so much for the transplant - though there is that - but because I cannot ever think of any annoying questions I had about my health or any fake-concern from people I know. I think this is where it helps to be as secretive as I was. No one knew until the last year before my transplant that I was experiencing any health issues. Once they did learn, the offers of support were overwhelming.

I never told a single family member so could hardly be distracted about the lack of offers for donation. Knowing how utterly bizarre my original donor is, I think he would have had the bigger problem with the silence from my family and probably would have pressured everyone to donate. He does not experience emotions as we commoners do and has no patience for lame arguments like "I'm afraid for my life and health". Never informing any of them solved myriad problems for me. I am not close with any of my siblings and could only imagine maybe being able to accept an offer of donation from one of them, and frankly I never would have asked. If they had known, I would not have wanted to even be contacted about it, nor would I have cared if they never offered. I honestly don't see that we have any responsibility to each other and consider them essentially to be no more than acquaintances that I cannot avoid running into every five years or so.

MM, we each have to come to our own peace with our situation, so it sounds like you've made enormous strides. That's excellent news. If Gwyn could not have donated I do not know what I would have done. To me there are only two relationships that require an offer of donation: parent/child, husband/wife (or committed romantic partners depending on circumstance). This feeling of whether certain relationships demand an offer be made will obviously vary from person to person, so I only speak to my own worldview.

[Kammie]

Wow..since joining this group I am continuously saying 'Yeah..I know..me too..been there..!
Yes, I, too am awaiting a cadavar kidney.  Let me say, though, that I've had my transplant now 15 years.  From my 'introductory' post, most of you know my transplant is now failing and so I'm on PD while waiting on "the list".  I'm aware I'm in for a long wait..I was only placed on the list in February of this year.

My 'transplanted kidney' came from my Adopted Brother!  I have two sisters, but his was the better match! Go Figure! I, too, get alot of "Oh..you're on dialysis?..I'll donate a kidney!"...or "I'll be tested!"..but to date no ones actually pushed the issue.  I'm just not the kind of person who could, or would ever ask someone to do such a thing. 

Here's another tidbit..I have a mentally handicapped son (Fragile X Syndrome) in his twenties.  Physically, he's perfectly 'normal'..mentally, he functions around 7 or 8 years old.  My Nephrologist keeps bringing up to me that he would be the 'perfect' match.  I have adamantly refused to even consider this.  His philosophy is I'm his primary caregiver..without me, someone else would have the responsibility of caring for him the rest of his life.  My philosophy is, I could never EVER consider it because he is in no way capable of ever understanding the issue.  I have never mentioned this to my family because it is an 'non-issue' with me. 

I will be forever grateful for my brother, but now have alot of guilt that his donated kidney is failing...

For these reasons, I will wait on a Cadaver.

[bette1]

Kammie,

I can't believe that your doctor would suggest your son to be a donor.  It would be cruel to put someone through surgery that they really don't understand.

[justme15]

Kammie,

I can't believe that your doctor would suggest your son to be a donor.  It would be cruel to put someone through surgery that they really don't understand.

I completely agree!!
in fact, I am actually a little relieved that my husband can't donate.  I didn't want him to sacrifice his health for me. and then if his kidney would fail, I would feel guilty.  so I'm ok with waiting on the cadaver list.

[MooseMom]

Cariad, I would not deny being stoked if my husband were to come in tomorrow and say, "I am going to have lapband surgery so that I can quickly lose weight, and then I can be tested to see if I can participate in a paired exchange!  I am so very happy to do this for you because I love you more than I love a deep dish pizza!"  LOL!  But since that's not going to happen, I have to shift my thinking so that I am mindful of what he DOES offer me, which is a good health insurance plan along with financial security.  At this time in my life where I am dealing with an incurable disease, the last thing I want to have to think about is having enough money.  Other people are lucky that they have a lot of support and a long list of possible donors.  I'm lucky that I am financially secure, so instead of being bitter about not having the former, I thank my lucky stars every single day for the latter.

Kammie, my son was tested for Fragile X when he was very young, but his final diagnosis was high-functioning autism.  He is 20 years old, and I am not sure how well he will be able to live independently.  Right now, he is living in the UK with his dad and is looking for a job along with just about every other 20 year old in Britain.  He has just passed his driving test, so I know he is capable of many things, but I don't know if he will be able to live alone without some sort of assistance.  Because of my fsgs, I was warned not to have any more children, so my son is an only child.  My biggest worry is what will happen to him when his dad and I are both gone.  All parents of disabled children have this as their chief worry.  The last thing I could ever do is to saddle my son with a potential health problem that might crop up involving his kidneys, exacerbated by the fact that he only had one, so I could never accept a kidney from him.  So, I do understand why you would say no to that option.

[Kammie]

Bette1..I couldn't believe it either.  When I expressed that to him, his response was "You're my patient, and I have to consider what's best for you".
While I appreciated his candor..I've let him know it will never be considered.

Kammie, my son was tested for Fragile X when he was very young, but his final diagnosis was high-functioning autism.  He is 20 years old, and I am not sure how well he will be able to live independently.    My biggest worry is what will happen to him when his dad and I are both gone.  All parents of disabled children have this as their chief worry.  The last thing I could ever do is to saddle my son with a potential health problem that might crop up involving his kidneys, exacerbated by the fact that he only had one, so I could never accept a kidney from him.  So, I do understand why you would say no to that option.

Very interesting..I'm happy your son is so high functioning!  I, too, worry constantly about his care if something should happen to me.  I try not to dwell on the issue as I stay close to the edge of sanity anyway!

[Whamo]

There is this old guy at my kidney center,  probably 5 -10 years older than me,  who had a transplant that went bad, did Home "D" and got an infection, and now is waiting for another transplant.  He said if you get on VA (veteran's administration) list the waiting period is only two years, and he says they get better kidneys.

[Annig83]

Thank you for all your responses and support.  I guess this is what I needed to hear.  No one around me in my actual support system knows what I'm going through.  Both my parents feel incredibly guilty because they have their own medical issues, and I tell them it's not their fault of course!  My boyfriend too, has kidney stones and the doctor said "no way he could be a donor". 
I'm not bitter towards those who don't want to donate, they have their lives to think about as well.  What I do mind, is people who ask because they feel like they have to.
I live in Indiana, and the cadaver wait-time is 3 years, which isn't as long as some of you have waited.  I guess at 28 years old and having a small child I feel like I am being cheated in some way.  I have always tried to put others before myself, (especially my son now, and my friends and family), and I guess the frustration comes from those people who act concerned, but really don't have any idea what I'm dealing with and act sincere when they're really not.

Kammie- I can't believe that your Nephrologist would ask that either.  I have a 15 month old, and even though he is "normal functioning" (he was born 3 months early because of my kidney failure),  I could NEVER fathom asking him to do this for me even when he is older and does understand what the transplant process is.  Good for you for standing up to your doc.  I would have done the same, and I probably would have said a few choice other words that would have got me escorted out of his office!   
MooseMom-I just have to say that I love your posts, and your insight on everything.   
Whammo- I promise to quit complaining as I too hate the dentist! You win this one

Thanks again to you all!

[chook]

I was told a 3-5 year wait here in Australia for a deceased kidney and waited 10 months, so short waits do happen.
I think the association with the donor is there whether live or deceased. I constantly think of my donor and her family, especially at anniversary dates and Christmas.

[amanda100wilson]

I've been listed for about 10 years, but am highly sensitised.  Even John Hopkins paired program have extended their search for me into incompatible blood groups because nothing is coming up for me.  Realistically don't ever expect to get one.

[austinsoul2011]

Very interesting stories here, and it's inspiring to know that y'all are such strong, good people in the face of this depressing, horrid condition.  I myself suffer from PKD but am still sufficiently functional for the moment.  It's my elderly father who suffers Stage 5 ESRD and is currently making the transition from hemo to PD (third night on the cycler coming up this evening).  He's having so many problems with accepting that he has this disease, and that treatment necessitates being hooked up to dialysis machines to keep him alive.  I know it takes time for a person to accept this big change in lifestyle, but it's been nearly a year and his depression, guilt, anger and bitterness shows no signs of waning.  I'm so grateful I'm able to be there for him and my mom; I can't imagine how on earth they'd manage if they were by themselves.  I guess my biggest worry is that something will happen to me and there will no longer be anyone to watch over my parents.  I can't bear the very idea of that happening and so I'm trying to read everything I can to ensure their lives are as comfortable as possible. 

I'm so glad I can come in here and read your amazing life stories.  I know others feel the same way when I say I draw strength and comfort from knowing there are people out there facing the same challenges, day-to-day.

[cariad]

((((austinsoul))))

I am so sorry for your father feeling so down and you having to watch and worry. I struggled with anger and bitterness, too, and if I knew the answer on how to overcome those very challenging emotions, I would gladly let you in on my secret. Your parents are lucky to have you and I am sure they do not wish to cause you any anxiety. I'm glad it helps you to trade experiences on the forum. I will keep my fingers crossed that PD makes a positive difference in your father's life.

[brenda seal]

I find it difficult to understand why one's family would not be willing to donate a kidney . I have heard of a scheme here in Australia , whereby if a family member is willing to donate but is found to be incompatible they can go on a register to do a swap with someone in a similar situation . That is donate their kidney to someone else that they are a match for and somebody else does the same for their family member that needs a kidney . My four children are all willing to donate a kidney to their father but Alas he is not suitable for a transplant because of his many other medical issues  .

[Annig83]

Brenda- We have that too here in Indiana, but so far I haven't had anyone be able to donate (family or friends), but it's a wonderful program!