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...)