Got dam it, I’m tired of waiting!

[Tora66]

It’s been four years and three months since I’ve been on dialysis and it doesn’t seem like I’ll ever get the transplant call. In just the past three months I’ve seen three ppl from my center (Fresenius) in Tacoma, WA at my time slot get the green light. I got one dry run call back in September. I was fourth in line. Back in October of 2016 I came close, but the person ahead of me needed both kidneys. I’m happy that ppl at my center are getting transplanted. One person had been waiting for 8 years due to lack of insurance. He was well overdue. It had been hard on his family with his wife being disabled and he being the only one working—a part-time job as a paramedic. Plus raising two teenagers.

I really feel like my life is on hold as I would like to travel to England with my family in June to celebrate my twin boys high school graduation. Plus we plan to buy a vacation home there so I can spend six months out of the year there. With the kids out of the house, (not far, their college will only be ten minutes from home,but they’ll be on campus) I can do more. I guess I really don’t have a reason to complain and I truly hope I don’t sound selfish. The whole transplant thing didn’t start to worry me until last August when I realized it had been nearly a year since I heard anything back in October. Guess I just have to wait my turn. Plus realize it may never happen because there aren’t enough kidneys for everyone. I just maybe that % that will never get transplanted. Thanks for hearing me out.

[Paul]

In Britain the average wait is 5 years, so I'm expecting to wait slightly longer than you have so far.

[Indajen]

In Britain the average wait is 5 years, so I'm expecting to wait slightly longer than you have so far.

Where did you get that figure?

It's 2-3 years according to my transplant consultant, and these sites:

https://www.nhs.uk/conditions/kidney-transplant/waiting-list/
https://www.organdonation.nhs.uk/news-and-campaigns/news/waiting-time-to-kidney-transplant-down-18-but-shortage-of-donors-still-costing-lives/

[Paul]

-Where did you get that figure?

Was sent to a transplant talk at St Hellier Hospital. We were given that figure by one of their surgeons. This was over two years ago, possibly three, so more people could be dropping dead now, or they may have a better response to donor cards.

[justagirl2325]

The waiting is brutal for all of you.  Canada just published their 2016 stats.  The Median wait for a kidney is 4 years.  So there are many people waiting much longer.  I wish more people would donate.

[Tora66]

Wait times are getting longer as more ppl are added to the list. Getting multi-listed or transferred to other hospitals might make transplantation available for some.

[cassandra]

Waiting times are getting longer for a lot of reasons. Lack of organs, money for transplants (uk), longer living D patients, older (western)world populations etc.
Anyway Tora66 if your antibodies are not high your kidney will be coming anytime soon.


Have you thought of home HD? It's a hell of a lot less 'life on hold' than in-centre.


Love, luck and strength, Cas

[Kathymac2]

Hi Tora 66. Be glad you don't live in Los Angeles. Here the wait time for type A blood is 6-8 years.  I've been waiting 5 years and two months and have never had a call. Whoever said that the waiting is brutal is absolutely right. 

[kickingandscreaming]

All this makes me think that getting a TX is a bad idea.  I know some of you swear by it, but it seems to foster a lot of waiting-to-live behavior.  I don't think it's at all healthy to spend so many years on hold.  Life is short and all this on-holdness creates a situation that wastes the life that you already have.  Full disclosure: I'm not on the list and have no intentions to do so.

[iolaire]

I really feel like my life is on hold as I would like to travel to England with my family in June to celebrate my twin boys high school graduation. Plus we plan to buy a vacation home there so I can spend six months out of the year there.

Please try to choose  to live your life in normal way. A transplant will come when it's time and no amount of waiting around for it will speed things up.

Start making plans for your trip. You should be able to be treated in England and  maybe you will be lucky enough to get to travel post transplant and get to cancel the dialysis sessions.  You do run the risk of "missing" a transplant if your are traveling far but at least you will have attended the graduation and know that your closer to a transplant.   

The beach home might need to wait if you are outside the healthcare system covered by England. But if you are already in the EU it probably is possible. 

I was on dialysis for 3.5 years and actually received my first call a few weeks before starting dialysis. I'm very glad I continued to book trips and travel like we have always done, as it would have been a longer wait had we disturbed our normal lifestyle and stayed home waiting for the call that came after six years, not right after the first call in that third year.

And yes it's a long wait. I'm not trying to minimize that in any way. 

[PrimeTimer]

Tora66: First I want to say that I am sorry you are having to go thru this. My husband has Stage 5 ESRD and is on dialysis and it's been hard. He still works a fulltime job but it's not always easy for him. As his wife it is hard to see him go thru it and put up such a brave front. He does it for my sake but he also happens to be one of the bravest strongest people I know. He also looks to the positive side of things that I swear so many of us can't do so easily. He makes everything seem like a breeze. Don't know how he is able to do that. So many of you on here are like that...strong willed, resilient, positive. He says that if he didn't work he would probably lose his will to live so he wants to work for as long as he can. I feel for all of you on dialysis and who are waiting for a transplant. The anxiety must be unspeakable. Glad you come here to reach out. This is the best place to come.

I am somewhat familiar to the Pacific Northwest and if I'm correct, your location there in Tacoma puts you close to several transplant centers and some of the best hospitals in the country. And being near I-5 can give you good access north/south to other hospitals. I hope you are or can be listed at more than one. And I don't know about laws and policy but you are also near Vancouver BC. I wonder if organs are allowed to be harvested from the deceased who were here visiting the USA at the time of death. A lot of Canadians (for instance, from Vancouver) visit the Pacific Northwest and even have second homes down here. I bring this up because I wonder if that increases a person's chance of receiving a transplant. Guess what I am trying to say is that altho it is stressful right now, try to stay positive and keep your location there in Tacoma in mind. I think you are in a good location...hopefully it is only a matter of time now. Stay strong!

[cbatsea]

Hubby has been on the list for 3+ years...they say it's a 5-7 year wait for O recipients. Yes...waiting is awful...so is dialysis.

[Kathymac2]

Hi kicking and screaming. I look at the wait time this way. If I'm not on the list, those 6-8 years are still going to pass and at the end, I'll having nothing more than l have now. I may even be worse off health-wise depending on how things go. If I am on the list, those same 6-8 years are going to go by. If I don't get too sick for transplant or die before the end of the wait, I will get a transplant and a chance for a healthier life.  Might as well pass the time on the list, with a chance for improved health as the long term goal.

I know that not everyone has the opportunity to be listed and not everyone wants to be listed.  Everyone needs to do what is best for themselves and their families. I just wanted to explain my thinking on the subject.

[Tora66]

Thanks everyone for the support and sharing your stories. I have no reason to complain when some are waiting longer.

[Tora66]

Kickingandscreaming, you have a good point. Life keeps on going and I shouldn’t focus all my energy on getting a transplant.

[Tora66]

Thanks for the advise Prime Timer. UW Medical Center is my primary hospital. Also I’ve just been listed at Legacy Good Samaritan in Portland, Oregon. I go for my first appointment with the transplant team next Thursday.

Sending best wishes to your hubby. Having a job definitely keeps you occupied and gives you a full life.