Dear friend is Very Ill, Transplant is Approved (I am up to snuff!).UPDATE POST #260
WE have a surgery date!! Update post# 150. and #260!
My dearest friend (and excellent human being) experienced complete renal failure before Thanksgiving, has been hospitalized since and was released from the hospital just before Christmas.
She is now on dialysis 3x weekly. She is 56 and has much to live for (children,grandchildren that she adores).
Being the holiday season things are rather on hold, transplant has been mentioned ,but only mentioned, as it seems the Docs are waiting until after the holiday season to even discuss it and get the ball rolling.
I believe one of her children would most likely be the best match, however if they are unable, for whatever reason, to donate, I will if I am suitable.
University of Colorado is the nearest hospital for transplant.
I am so afraid that this will be one of those times that having Medicare as your only form of health insurance will be the difference between life and death. Of course, I am jumping the gun, because I don't yet know if she will qualify for a transplant. (She certainly will, if lack of kidney function , GFR ,and creatinine levels are the criteria)
I have been all over the web researching diet (low phosprorus etc..so I can make some meals for her as her DH is not a whiz in the kitchen), dialysis and transplantation and am discouraged. Any words of wisdom and/or hope?
PM's from expert COTHers appreciated as I am not comfortable giving too much of her info on a public BB. I do understand the ethical boundaries that must be observed by any physicans who care to respond.
I want so much to ask "who is the best" and "where is the best transplant hospital" but realize that those questions are best asked by those with either good insurance or great financial resources, neither of which is the case here.
I don't have any advice for you either, but big hugs and mad jingles for your friend.
My good friend and matron of honor at my wedding 19 years ago is in the hospital room 7 doors down from mine with ovarian cancer and now a small bowel obstruction. She just welcomed her first grandchild 8 months ago, and while she is 12 years older than me her youngest of five children are the same ages as my two teens. I know her kids/grand baby aware all that keeps her going some days.
I hope your friend gets the absolute right care and what an amazing friend YOU are to be willing to donate an organ to her. The world needs more people like you in it!!
Thank you. That is so kind of you to say, but I think most people, when faced with this situation, would donate without hesitation (after all one kidney is all you need ,we've all got a spare, really). I can only hope that my kidney ,if needed,is a match and is worthy, in the medical sense..
ETA My best wishes to you and your friend, it is so difficult and painful to see people you love in such distress.
I'm a post-kidney transplant of 5 years but did the dialysis thing for 2 years before getting my transplant. The pre-transplant process and testing can be a bit lengthy and take a while, at least where I received my transplant although mine was from a deceased donor. If your friend will be on dialysis for a bit longer I would recommend she look into home hemodialysis programs at hospitals in your area. You feel healthier than the 3x a week dialysis and your diet is less restrictive. And in terms of dialysis diet, less processed and more home-cooked is better. Less sodium and more control of what is in the foods.
Also, not sure if it is you or your friend who is Medicare insured but I don't think medicare only insurance will be a problem. In fact, all post-transplant patients qualify for medicare for 2 years and I used that instead of my GHP insurance because it covered more of the drugs. Just a fair warning though that even with Medicare the medications can get somewhat expensive but in my experience the drug companies are sometimes willing to give you vouchers and help.
In terms of you donating, most hospitals are very thorough with testing of potential donors and making sure donors are healthy both for the safety of the recipient and the donor. This included weight, blood pressure, cholesterol, diabetes, lung health, well really everything. If you want to be considered as a donor think about if you need to lose some weight or check out current BP or cholesterol levels etc. Expect a lot of tests if you decide to go through with donating, which is a great thing.
If you have any other questions about kidney disease, dialysis or transplant feel free to PM me. I've done pretty much every kind of dialysis available and been there with the transplant. Good luck!
Thankyou! It is my friend's medicare I was referring to. I am happy to know that transplant will be possible with medicare funding. She is currently doing "outpatient" hemodialysis 3x weekly ,going to the dialysis center and then back home afterward.
I noticed that the diet really requires non processed foods, and that's OK since my friend did not eat much junk before this problem. It's a matter of avoiding natural foods that are high in phosphorus and having something available that can be made in advance that she can have in the fridge. I'm working on it!
As for my donating( if needed) I would expect and welcome rigorous testing. I am not overweight, good blood pressure ,not sure about cholesterol. As I mentioned, I am jumping the gun because she has not yet been evaluated for transplant and I know that that is the first step. I am just so worried and want to find all the resources for her that I can. A big thank you for your offer and I most certainly will accept the invitation for PM.
Will be seeing my friend tomorrow and will confess that I have broadcast her business to the world. (She'll be happy to know that people do care and are willing to share info). Thanks !
ETA I had found the davita site and it seems like a good resource. Thanks for confirming.
An internet friend a few years back ended up on dialysis.
She was lucky to receive a donor kidney. (Sadly i have lost contact with her shortly after)
it prompted me to look up up the national Kidney foundation http://www.kidney.org/
(I did not do any further research though...I did consider to put on a 5k or so, but the local chapter here seems to be non operating...)
many prayers and jingles to your friend!
Originally Posted by Bristol Bay
Try setting your broomstick to fly at a lower altitude.
My friend is now on the "list" for a transplant . She has been on perotineal dialysis at home for a long time now.
I am in the first stages of living donor testing.
Have any COTHers donated organs?
I have done much research but would like to hear from any donors.
My worry is that I will not be a candidate (though, so far, so good). If I am not a MATCH, that can be worked around, by paired donation. Just hoping that all will be move ahead without delay and things can move forward quickly.
A big shout out from my friend (and me) to mjhco ,larkspur, and threefigs, for their willingness to share their horses with my friend at the Estes Park show. Even though she was unable to attend as planned, she was touched by your kind offers to allow her to visit your beasties . Larkspur, thanks for the photos, she enjoyed them very much.
My older sister (37 years) is on the transplant list for a kidney. Has been on the list for 4 years already and is probably another 2 years out from getting close enough to matter. She does the peritoneal dialysis at home nightly and feels really good and aside from just the annoyance of having to do it and her spare bedroom looking like a med ward, doesn't feel its a super big deal. She even has vacationing and having stuff shipped to destinations down to an art form! She is also a type 1 diabetic (since she was 13) so that just adds that extra something special for her. Currently she is at about 15% kidney function, but her diet isn't super limited, she just has to take a pill (can't remember what it is, but it helps with absorption) before she eats. Nobody in our family is a live donor candidate as our mom had rheumatic fever as a teen so actually can't donate any organs alive or deceased, my oldest sister is morbidly obese, and I too have had renal failure already when I was 27 (I do not have ongoing kidney issues though and no damage, but once your kidneys take a vacation once they pretty much want you to keep what you got!). Her husband would give her a kidney but alas he was only born with 1.
As long as your friend feels good the dialysis can continue for quite a while and keep her feeling good. Our pastor is having a kidney transplant this summer and his wife is donating she matched. Luckily kidney transplants are probably the easiest of all the organ transplants and is incredibly common so easier to find surgeons etc. Remember too even if you aren't a match and someone is still willing to donate a kidney regardless of who gets it, your friend gets bumped to the top of the transplant list.
Wow, Skydy - that is quite the unselfish act. And I've had to deal with so much garbage the past few days, reading something like you are undertaking will make me hop in that car with a different attitude.
My sister-in-law had liver disease - forget the name of it - the one a famous pro football player had. My ex's family was, however, also quite malady-centric. It was sad - her father such a hypochodriac, he'd still talk about his perceived ills over her crisis at the time. When I met him almost 30 years ago, he was going to die at any second. He is still here.
Sorry, I've digressed. What that situation did, however, was throw me into the mix to advocate for my SIL. She had health coverage on and off through all of it. She lost her job due to the illness. Her husband a ne'er-do-well who wouldn't keep a job. Finally some insurance came into place.
I had been living overseas, was home for the summer. Went to visit her, and it was so apparent she was in huge trouble. She couldn't go to the top of the list because the insurance company was saying they were waiting for word from her doctor. Her doctor said he was waiting for something from the insurance company. I jumped in and spent the next few days on the phones with both, and with whatever administrative department for the state, legal, insurance, etc. I could find. Within 5 days the carrier had provided coverage, she was on the list Friday, and had the transplant Sunday. It was a very, very rewarding experience, and I was so glad for some of my professional background to be able to make that happen. No one in her family knew how to advocate for themselves, let alone another family member. We drove down to Pittsburgh and two days following the surgery, her husband said he hadn't even talked to her doctors yet! I got him together with them as well, and finally they had some idea of what was to be expected. Still makes me angry when I think about all the ball dropping that occurred.
SIL lived another 4 or 5 years, I believe. At least was there for her daughter's teen years, and her HS graduation. Eventually she needed another transplant, got another one, but passed away shortly afterwards.
Despite my divorce, her mother used to greet me warmly, giving me credit for jumping in there.
I do think she was probably careless to some degree about her own care. Both transplants were entire liver transplants. I think if she had had more support, she would have done better. But her family life was so depressing with everyone else going on about themselves, I believe she gave up earlier than many would have.
I am so glad they have found the technology for partial liver transplants. You are extremely brave to be undergoing this. Liver transplants are such major surgery.
Wishing you all the best. What a friend you are. Yours is very lucky you are in her life.
Oops! Reread, and thought you said "liver" donor testing. Sorry... My opinions of your effort, however, are no different!
Being right half the time beats being half-right all the time. Malcolm Forbes
mjrtango93; My friend is not well and dialysis is taking a big toll. She has been on the list for quite awhile now.Time is of the essence. Thanks for telling me about your sister.
I am hopeful that if I do pass all the criteria for being a donor (which is my biggest concern at this point in time), that even if I do not match the necessary tissue typing (we are blood type compatible, but there is much more to it, as you know) that we will be able to find a "paired donation" a 4 way "swap" with a donor who is a match for my friend but not a match for their person, and I would give to their person with whom I am a match.
They do seem to have great programs in place to make it happen.
Thanks CVpeg. Live donor kidney transplant is more successful than deceased donor and my friend needs all the odds in her favor.
Thank you all for the response. It is helpful just to "speak" about it.
Last edited by skydy; Apr. 4, 2014 at 03:38 AM.
I do appreciate the opportunity to post about this situation.
Unlike the general public (from my experience) horsey people who have injuries and surgeries, count them as part of life. Not a big deal, just a pain in the rear.
Having a kidney removed is apparently painful, as most surgery is, and apparently one feels as if they were hit by a truck afterward, but one does recover, and I don't think that donating in itself is that big of a deal. The way I see it, all the injuries and surgeries I've had before had no positive results outside of my healing up. This one would.
I think that many horse people would take a one time surgical hit to give a friend, family member, or spouse a chance at life. No pity party here. Just a request for good thoughts for my friend and hopes of a match to expedite the process.
A coworker of mine donated a kidney to her dad. Both are well and doing great - 2 years post-op. It was a lengthy procedure to get the whole thing approved, but of course, the surgery itself was fairly quick and uncomplicated. The recipient recovered more quickly than the donor, but that may have something to do with the personality involved. When her dad irritates her, she threatens to take it back. I hope you can help. It is a huge gift.