Blood Work Today

[twirl]

I do not understand
you will not have disability after 12 months on it

[kellyt]

I hope you can work through this.  It's seems to be a tough situation.  I'm sending you good vibes ~~~~~~~~~~~~~~~~~~~~~~~~~   
                                                                                                                                                 ~~~~~~~~~~~~~~~~~~~~~~~~~    How's that?   

[Sunny]

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.

[pelagia]

  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.
 
 

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!?!  


 

[lruffner]

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???

[Rerun]

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.

[monrein]

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. 

[lruffner]

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.

[Sunny]

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.