I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Rerun on November 04, 2008, 07:45:23 AM
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I'm finally starting my evaluation in Spokane. I was on the list in Sacramento for 2 years. That time will be transferred to Spokane if they list me. Already.... things are not going right. I've lived here for 6 months and they are Just getting the referral from my Nephrologist. They want blood work this morning.... they won't take it at dialysis when I get off in the morning. They won't "share". So now I'm starving and have to wait until 9:30 for yet another stick.
I then get a chest X-ray and EKG. That is all I'm willing to do until I see if my PRA has changed. If it is still 95 then I'm not going to be listed. It will be just a bunch of money spent on tests and my time and agony for nothing. I know I don't have a positive attitude about this but I have my reasons.
The last time I went to the Spokane Evaluation Team 2 years ago before I moved the Director who is a Nephrologist told me I had a bad heart. I had just been cleared by Sacramento Heart as a go. So I went back and come to find out the Nephrologist didn't no what he was talking about. So, one reason I want to see him again is to tell him he better stick to Nephrology and stay away from guessing at Cardiology. I can't wait!
It will be a long morning!
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It makes me crazy when simple things have to be so difficult.
I hope all goes well and you get listed. There are still patients who get a match with high PRA's, it's just less common.
Hang in the Rerun! :waving;
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:waving;
best of luck Rerun.....
Hope it works out in the end for you. :cuddle;
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I really hope it goes better this time around Rerun. I'm especially hoping that your PRA is different and by that I mean way way lower. :cuddle;
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Good Luck! :)
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Hope it goes well for you. I'll be crossing my fingers that your PRA levels have decreased.
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They wanted 9 vials of blood. That was 60cc's worth. They had to have someone from the dialysis floor come down with a butterfly needle and take it from my fistula. That was way better then my hand. GEEZ!
There is the problem with my PRA and then there is the 12 month timeline when I'm kicked off my disability and have to find my same job that I left. That scares me. I hate being on Social Security and Federal Disability, but it is better then working for less, 40 hours a week at Wendy's. I would get "points" back at a Federal Job on an application but they are not just going to hand me a job and then if they know I'm dealing with a second kidney transplant and then there is the dark cloud of losing it. OMG what am I thinking!!!
I hope my PRA is high so I don't have to deal with this anymore. I'll just say "no." OK so why don't I just say no. Well, because I need to blame it on something other than myself.
OMG now I'm answering myself!
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Love you Rerun. :-*
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WOW thanks... I needed that today.
:cuddle;
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Sending you some love from me, too :cuddle;
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So sorry about this crazy situation you're dealing with Rerun. It's like an impossible dilemma and I wish you weren't in it. Sending you hugs and the wish for some inner calm as you go through this anxiety and worry.
:grouphug; :cuddle; :grouphug;
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I just need to make a decision and take full responsibility for it. I think I'm getting closer. It is funny how I've changed over the years. When I was 25 there was no way out except through a transplant and I thought everyone who didn't want a transplant and was eligible was crazy. Now I understand.
:flower;
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I don't expect you to base your decision on what I say but I would love to see you around doing the things that you can't do because of your dialysis schedule.
Like anyone it is your decision and like you say you have your reasons for your own decisions but I'm just adding my :twocents; I respect your decision whatever it may be Rerun. Unconditional Love and Respect always.
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xoxoxo. Rerun I understand the whole PRA thing remember that's what they told Otto and he did find a match. :grouphug;
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I remember the hassle of trying to get listed. I am with you Rerun what ever decision you make. If you cannot do a transplant you can come stand in my corner with me and we can have a party.
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Rerun,
I have a PRA of 96 so I know how you feel about the transplant list. Sometimes it feels pretty hopeless with such a high PRA. I figure I'll never get the call and am learning to live with that fact. However, there is still that very slim chance a perfect match will materialize and I hope you will go ahead and get listed if possible for the opportunity of that very slim chance. Not everyone wants to be listed, but since you have made the decision to go forward with the testing, why not get on the list regardless? On another note, I'm sorry to hear your disability may run out soon. I guess I don't understand the nuances of that issue for you. My long-term disability from my employer's insurance plan will last till I am of retirement age if necessary. Maybe I just got lucky regarding good disability insurance. Either way you look at it, you have been most fortunate to have such a good outcome with your first transplant. Let's hope there is a good outcome for you regarding a 2nd transplant. Hope things go well.
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>:( :secret;
i dont understand all this yet. But in time i will know it all to well im sure.
Rerun you know im in your corner.
I look up to you :-)
You have lead me many places in a short time. And they all were answers to my own questions :clap;
You have my respect and admiration :cuddle;
I want you to get what you are looking for.................
P&K
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:grouphug;
Just wanted you to know I am thinking of you!
Lori/Indiana
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:cuddle; Hugs Rerun
I wish you strength in making the right decision for YOU. It's a crazy situation that you have to think of a 12 month time limit on disability. :Kit n Stik; to that crazy weird system of helping people.
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:flower; Rerun. Let us know what you decide. :grouphug;
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Just follow your heart, do what you feel is right and take no crap from anyone
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Got the blood tests results back. My PRA is 96%. Two years ago it was 95%. The guy said I would be hard to transplant but not impossible. Well, I don't want to keep all my tests current for "not impossible". He suggested that I become dual listed in California, Oregon, or Utah. I can't do that! I don't have any support system there. My whole family is here. I do have a niece in Oregon, but they both work and you need someone to help you get to and from the hospital, tests, etc.
I know Meinuk did it by herself, but I don't see that I could do that. Next I talk to the Financial coordinator to really make up my mind that I really don't want to do this.
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Jenna's transplant hospital had housing within blocks of the center - small apartments available for transplant patients to stay in - cost was very minimal - about $20 per day.
A good transplant coordinator will help with these details so it's not an obstacle.
Multiple listing doesnt have to be so far away, sometimes the next procurement area away will have better stats. What is the wait time in your area (the high PRA notwithstanding?)
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Rerun, I just wanted to let you know that you can be dual listed in the same state. In our area, Washington Hospital Center is considered one area, John Hopkins another and Richmond or northern Virginia is another. Couple hours drive from either direction but I totally understand your support system problem. What is the areas procedure for staying on the list? Is it just labs every month or something more involved. Len just told me that it might be harder for you to get multi listed because of the area you are in but I think it would be worth checking into to help you make your decisions. Please let us know and if you need help with anything let me know. You could get listed here and I'd take care of you. Seriously. :cuddle;
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Rerun,
I can't imagine how this must weigh on you- PRA and second TX etc.. I am imagining that a few years down the road, I'll be in your shoes. It seems like just when things seem like they should be smooth sailing, getting tested and bloods drawn, some kind of obstacle jumps in the way. My take is that life is a marathon, and we are in it for long run.
I am lucky that I live in NYC, with multiple options for medical care and everything is so handy by public transport. And you are right, being on Home hemo allowed me to draw all of my own bloods, monthly lab work and tissue typing. (I even drew my own labs while I was in for my transplant - I can be a pushy broad when I put my mind to it!)
Whatever you decide, you have my respect and admiration. I was so happy when you started nocturnal - really the best form of dialysis you could get when you are in center. And transplant or no transplant, I just want you to stick around, with commentary, movie reviews and support.
I've faced the harsh reality of the costs of transplant in the past week. Yikes - I even have private insurance, but I had been planning on leaving my job in 2010. Ummm maybe not now, between the economy and my new found dependence on immunosupressive drugs, crikey I am fiscally terrified.
I have my interview with Medicare on 12/5 and shudder to think that it will be only for 3 years (I know that people are working at changing that) between medicare and my private insurance(with a $1,000,000.00 cap) - well, early retirement is not in the cards for me.
Oh well, I just wanted to add my :twocents; to say that no matter what you choose, I'm glad that we can be going through this together.
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I do not understand
you will not have disability after 12 months on it
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I hope you can work through this. It's seems to be a tough situation. I'm sending you good vibes ~~~~~~~~~~~~~~~~~~~~~~~~~
~~~~~~~~~~~~~~~~~~~~~~~~~ How's that? :flower;
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Sorry about the high PRA. I know what that is like having 96% myself. You are facing difficult decisions for your future and it isn't easy. Take your time and no need to rush with your decisions because you don't need any added stress. Things probably won't change too dramatically for you regarding your health any time soon and that means you can take all the time you need to decide on whether you pursue a transplant, or multi -list. You've probably given it plenty of thought already. Not only that, you can always change your mind about things in the future whatever choice you make. Wishing you the best.
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:waving; Rerun,
Whatever you decide to do, I will admire you for it. You have tough choices, the kinds of choices that few (outside of IHD) have to make and many of us (like me) can not fully understand.
:cuddle;
P.S. I would have posted on this thread earlier, but this is the first time I am seeing it. I don't understand how that happens!?! ???
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Rerun-
I hope that you figure things out. I am very sure that it is a difficult decision. I am getting ready to start the work-up myself and I have no idea what to expect. I got my mom through hers and a liver transplant, but I wasn't "there" in the room for procedures. I would love to know more about it, especially from you, because you do say it how it is.
What's up with your disability? If you worked for the federal gov't, how could they discriminate on a job???
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If I got a transplant I would have 12 months before I lost disability... because I would no longer be disabled. I could apply for another Federal Job, but no guarantee. My last Federal job was in Sacramento and I now live in Spokane, WA to be closer to family. Also, the agency where I worked is politically appointed so the "Big Guy" won't be there anymore. It is just scary to think about. I guess I would just have to have faith that God would get me through.
I have a hard time with them getting me a transplant and being held hostage to work 50-60 hours a week to pay for the medication. I'm better off financially now then I would be having a transplant. That sounds lame but it is true. If I get a transplant and can't find a job I'll be out on the streets (or in my sister's basement).
It was like the transplant coordinator was trying to talk me into it. Like I'm not supposed to think beyond just getting the transplant.
Thanks everyone for your support. I'll talk to the financial coordinator and let you know my decision.
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It doesn't sound "lame" at all Rerun. It sounds like a horrible catch-22 bind to be in and I find it grossly unfair that you have to give the financial aspect of a transplant as much weight as you do. Lord knows it's a tough enough decision as it is without that kind of pressure. I look forward to hearing what the financial coordinator says and wish you well as you come to your own decision about it all. I'm also sending you hugs. :cuddle;
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I understnad now. From your other post, I thought it was due to your former federal job or something like that. I came across this link a while back, regarding medical conditions that are approved for SS, so maybe you would qualify? It is a little outdated, but there is also an updates tab at the top of the menu.
http://www.disabilitydoc.com/updates/
Check out the menu on the left for approved medical conditions....starts about half way down with cardiovascular system. Anyway, just a thought. What a crap situation you are dealing with.
I was approved right away, for what I thought was CKD--ha!, but it was due to PAD and degenerative disc disease.
There is a girl on another site who's transplant just failed after 18 years and she is doing home hemo-nocturnal. They are pushing for her to get another transplant, but she says she feel better now than she ever did transplanted, so she is also facing the dilemma of "should I or shouldn't I." My mom has never felt good since her liver tx, but she didn;t have any alternative to live, so we are just thankful she is here. It really makes me question whether or not I want to get transplanted. My mom also has many other major health problems now, due to the surgery itself and the meds.
Of course they push for the tx at the hospitals, because that is their big money maker.
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It is true the hospitals are in the business of transplants and will push that option every time.
Seven years ago when I first got sick with ESRD my transplant hospital was pushing for me to look for a living donor since my PRA was 96%.
At the time I had 30 % kidney function and they made it sound like the end was near and dialysis sucked and the odds of me matching a cadaver
were so slim that I felt very pressured to find a living donor. My older sister came forward and was a 6 out of 6 antigin match and they set a transplant time
frame for us. I then started doing research on living donors and learned that donors with high blood pressure, which my older sister has, are not good candidates.
However, my transplant hospital told us that if my sister got her HBP under control with meds they would accept her anyway. Long story short, I just couldn't go through
with it knowing the risk to my sister, no matter that she was willing anyway and the transplant hospital assured me she would "probably" be fine in the long run.
Now my kidney function is 20% and I am pre-dialysis and I am still told of gloom and doom about my future. But I have managed to make a life for myself anyway. I am on disability.
Like you, I think about whether I would want a transplant over dialysis considering I would then have to choose between disability or working my A-- off to afford the transplant.
I would also have to choose between the side affects of a transplant and the meds taken versus the side effects of dialysis and meds taken for it.