I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: YLGuy on January 05, 2010, 01:47:21 PM
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I thought I would start this thread that hopefully will lead to my transplant.
A quick history:
My kidneys failed at the end of March 2009. They believe it was due to high blood pressure. I had no idea my kidneys were failing until I ended up in the hospital for 17 days.
I am trying to get on the transplant list at St Joseph's Hospital which has the highest success rate in southern California.
First I had to attend a group meeting and they went over a bunch of information that I knew thanks to IHD.
I then met with the the social worker who had a long list of questions for me.
My next meeting was with the one and only transplant surgeon they have. This was the meeting where I had to bring support people. Between my affiliation with Indian Guides, Pop Warner and church I had 22 people show up.
That same day They did a EKG, pulled 20 vials of blood, did a chest x-ray, urine test and made me bring home a stool test.
On December 24, 2009 they called me to say that all the first tests were good. The only issue was that I had bradycardia (slow heartbeat).
They called me today, 1/5/2010 and scheduled An abdominal ultrasound, more labs, a TB test and a meeting with their dietician. for 1/26/2010. They said that they would call back with 3 more appointments" cardiologist, transplant nephrologist and pulmonologist.
This seems to be a very long process just to get approved to be on the list. I am curious how long it took others to get on the list?
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Marc, it took Carl almost a year. A great deal of that time was due to a screw-up with the social worker on the first day meeting. She nixed him right off the bat since we did not have prescription drug coverage. Turns out she was mistaken, and well, lost close to a year because of that. No apology. :banghead;
But once the ball started rolling it did not take too awfully long. Seems like it was about 6 weeks.
But then, every transplant center has different protocols.
:cuddle; Aleta
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I think it took almost 6 months from initial appointment to getting the approval letter in the mail. There was an endless stream of requirements and tests that had to be completed and sent to the transplant hospital. If you have tests done locally, keep in touch with your coordinator to make sure they get the results in a reasonable amount of time. I had several done nearby that I had to keep calling on to get results faxed in.
Many of the tests will have to be repeated yearly once you are on the list, and then you have to repeat the badgering of the locals to get results sent so you can stay active on the list.
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It took me about 8 months. A lot of that was due to test scheduling. One test done, then they would add one more. But, I just did what they said, when they said. I had donors being tested during that time, also. Last month was my 4 yr anniversary on the list. Good luck, Marc. You will do fine and get on the infamous list quickly and then get a new kidney! :2thumbsup;
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There should really be some standardization for this, because I think it's ridiculously unfair without it. Listing protocol is the primary reason I left USC. I called for an appointment with them in mid February 2007, saw them in late June (??!!) had all my tests completed by mid-August, and was not listed until end of November because they neglected to tell me I needed a final bloodtest. There were a few other USC screw-ups that led to the delays.
By contrast, I took a 6AM flight from LA to SF end of July 2007, got to UCSF for a noon orientation, met with all their staff, had two blood tests exactly 10 minutes apart (some state requirement or something) and was back in LA by 9:30PM. UCSF listed me as active in early August, almost four months before USC.
My current hospital is also hopeless with listings, but I am going there for a specific reason (clinical trial). My first appointment with them was in March of 2009, and I was listed mid-October (almost 7 months).
Jbeany is right - keep on everyone, and be sure that results get where they need to be, because no one will be in any hurry to call and tell you if they don't. Good luck, Marc! :flower;
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Marc
All that you have done,and all you have gone thru make it very evident that you are capable of doing everything the transplant folks want you to. Just be patient for the results, and we will all be thinking of you.
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Jenna was evaluated in one day at USC - all the tests, xrays, meeting with surgeon, social worker, financial rep., etc. No word for 3 months so I called them. Turns out they were "between coordinators" and our file had sat there with no activity. Within 2 weeks we got the letter that she was listed. It was just the beginning of slow and inefficient dealings. After 3 years of no calls in Los Angeles Jenna got multiple listed (in ONE DAY) at Scripps in La Jolla and she jumped at the chance to switch her primary wait time from USC to Scripps. They gave her a pager and she got 2 calls withing the next 2 months. We found a living donor and the rest is history.
If I had it to do over I would have had her evaluated in Los Angeles, La Jolla and Davis, CA concurrently, but I didn't know we could do that at the time.
I think the squeaky wheel gets the grease, and it's up to the patient or advocate to call and find out what is needed to complete the evaluation in a timely manner.
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Okay, what a day. I started off at 7:30 this morning. I had to fast last night. Nothing to eat or drink after dinner. They did an abdominal ultrasound which took over an hour. I then had to go for more labs. I was told specifically to continue to fast for the labs and not to void my bladder. After the labs I had to void my bladder and go back upstairs for additional shots with the ultrasound. I was told that I would able to eat before my next appointment at 9:30. The problem is that I got out of radiology at 9:27 and I had to go across campus to the transplant center to meet with the renal transplant dietitian. Things went very well with her and she told me that I was her star patient after looking at my labs and discussing my diet. I told her about not eating at the end of the appointment and she asked what time my next appointment was and I told her 11:00. She then told me it was already 11:10. She brought me some crackers and jelly to my next appointment which was very nice of her. After seeing the transplant coordinator who said I was getting near the end of testing I was able to eat lunch. I then saw the pulmonologist. After some testing he said that he was clearing me for transplant surgery. I was finally done at 2:15.
On Thursday I go for a stress EKG. On 2/2 I see the transplant nephrologist. Then all I need is the PPD test and unless something else comes up I hopefully will be approved at this transplant center. Again, I chose this center because it has the highest success rate for patients and kidneys in all of southern California. As a bonus it is a Catholic hospital.
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Oh, Marc, I feel for you. I get >:( when I'm hungry!
:rofl;
Well, I hope things will keep rolling along smoothly now!
Aleta
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Marc....Sounds like you're going to breeze through the process. My nephrologist that I had since childhood was in Pennsylvania even though I live in NY. When I learned that I needed a transplant I also learned that my insurance wouldn't cover it if I went out of state for my transplant. My neph contacted the NY transplant that I chose (was actually the closest one to me a little over an hour away). She contact the transplant center to get a list of what they required. The scheduling office set up all my tests to be done in two days....half on a Wednesday and the other half the next Monday. Two weeks after all tests were completed I went to the transplant center and went through their group program and their evaluation by the social worker and psychologist.
Two months later I wasn't listed so I called them. ONE doctor from PA hadn't forwarded a clearance letter. I made a few phone calls...did some frustrated yelling and got the letter forwarded. In less than a month I got my letter of confirmation that I was listed. I was told at the time that the waiting period was three years. I got a cadaver transplant 15 months later.
Best of luck to you!
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I will let you know. I started the process at OU Medical Center Nov. 11, 2009. I had the final step today. The consultation with the surgeon. He told me I was approved and I would be receiving the letter from UNOS once I was on the list. I figure I will wait about two weeks and then I will be bugging the crap out of them if I have not received the letter.
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Sounds like everything is going well for you. It just takes patience and persistence. It's interesting to read through your posts of exactly the tests and meetings are being done because when I went through it 6 years ago, it was all a blur. Now I'm beginning to remember!
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Yay - go Marc.
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Today was the EKG stress test. I passed. The cardiologist told me he was going to let the transplant surgeon know that he was clearing me for transplant surgery. :yahoo;
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:2thumbsup; :yahoo; :2thumbsup;
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Excellent news!
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I saw the transplant nephrologist today. He said he had read my history. He said that I needed certain tests and was surprised that I had already had all of them done already and that the doctors who did them had signed off on my transplant surgery. He said that he will recommend to the transplant surgeon that I go on the list. He also said that I should be done with testing. I will believe that when I see that.
On another note. After church on Sunday I bumped into one of the people who offered her kidneys. She said that she had her blood drawn last week.
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Moving right along. That's fantastic.
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Sweet! Welcome to the roster.... :yahoo;
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Sweet! Welcome to the roster.... :yahoo;
I will let you guys know if and when I get my UNOS letter.
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Great news Marc. Nice to hear that someone has already had blood drawn and the process is going in the right direction. :2thumbsup;
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I spoke with my transplant coordinator today. I left her a message yesterday asking what was left to do. She said that she got the info from the cardiologist and it was good. She said that she still needed the write ups from the pulmonologist and transplant nephrologist. I told her both of them said that they were going to recommend me. She then said that all I needed was a TB test (PPD). I told her that my dialysis center did it this week. She said she needed to do it. I go the 16th to have it done and the 18th to have it read. She then told me that she is scheduling her presentation for me to be on the list the 24th. She presents my file to the transplant surgeon, the transplant nephrologist, the transplant dietician, the social worker and 1 or 2 more people. Keep your fingers crossed.
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My work up for a live donor transplant were very similar, and a similar time frame perhaps, if I remember clearly (which I don't lol).
I was very lucky that the transplant coordinator (a cancer patient herself) was extremely hard working, efficient, and competent. Just an amazing woman. Her name is Toni, from the Queen Elizabeth Hospital here in South Australia.
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Congratulation for a smooth process.
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They called me during dialysis and told me I was accepted. I need to drive down there this afternoon and sig some papers and go to the lab. They said they were going to take some blood to be stored at UCLA for if and when I get a transplant.
:bandance;
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:yahoo; :yahoo; :yahoo; And let the journey begin
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I was completely wrong about the lab work. They are sending it to UCLA to crossmatch???
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Either way, Super Dooper!!!!!!! Best of luck Marc.
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:yahoo; Good to make progress!!
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Sounds great, Marc!
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Every little forward movement in the process is cause for celebration. :cuddle;
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Okay, here we go. I was working at the registration for Pop Warner this week. My buddy's wife came in with her boys to register her son Cory (he is on my son's team). I went over to say hello. I had just been camping with the boys last weekend with the Indian Guides. Cory is also in my son's tribe. She was like isn't the news from St. Jo's great? I had no idea...she had gone and had blood drawn to be tested. She had offered awhile back and thanked her very much and told her that I would never bring it up in a conversation. If she waned to tell me as she went along that would be great but her just even thinking about giving me a kidney was more wonderful than any words could describe. I did not want to ask just in case she backed out at any point. I do not want her to feel weird about it. Their family has been very good to my family over the years. So I believe they are testing the antigens now?
It just so happened that I brought my 18 year old son to the transplant center on Thursday. He had his blood drawn too. He informed me that at a minimum 3 antigens would match because you get half from each parent. One of the things that I have definitely learned from IHD is although this is a very good thing, you don't count your kidneys until they are in your body producing urine.
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One of the things that I have definitely learned from IHD is although this is a very good thing, you don't count your kidneys until they are in your body producing urine.
:clap; Ain't it the truth?!?
It's really heartwarming to know that someone wants to be tested, it gives you hope.
Best wishes to them - whatever the outcome - they are very special folks.
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Marc, that is the best news ever!!!!!!! :thumbup;
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I was laying down to rest yesterday when my oldest son came in my room jumped on my bed gave me a kiss on the head and in an excited voice told me that he was a match. So many different feelings. First I am very proud that I have raised such a loving caring young man that he would consider doing something like this for his dad. I know that he is a giving person as he has donated blood since he was 16 and is in the bone marrow bank to donate. I am very scared that they will test him and he will come through with flying colors and want to proceed with the donation. It is a weird feeling being cared about so much by not only him but also by Marissa (my friends wife) that they are willing to go through a pretty major operation and give up a body part for you. Humbling might be a good word. I do not want to put the cart before the horse so I will try not to worry about something that may never happen and just be thankful for my blessings.
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Marc, you are so blessed. I am happy for you. Just dont you dare have your transpland on June 5th. Altho, I guess I would forgive you for something like this. Yes, I am sure I would.
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What wonderful friends and family you have, Marc. But you're absolutely right to not worry about anything until it actually happens. In the end, as difficult as it may be to explain to your son, both recipient and donor have to be comfortable with the transplant. I hope he does pass the eval, because that speaks to his good health, but I also hope that you get the transplant that you want, and that your son will understand if you go a different route. Good luck.
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:grouphug; I love that your son and friend are willing, and I understand there are mixed feeling because it's hard to imagine another person undergoing surgery to help you. Jenna's younger sister (19) said she wants to get tested to donate to Jenna. It's tough to imagine them both in surgery. But, as was said, no need to fret or worry as it is not happening now. xoxox
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Caring fathers who raise caring sons are gifts to the world and of course you worry. What a lovely moment though. :grouphug;
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I got a call today from a friend of mine. He coaches soccer. His assistant coach that is my age has been in a coma. My friend got a call that it does not look like his friend will live that much longer. He told me that he is thinking about approaching the family and ask them if they would consider organ donation and if so would they be willing to designate a kidney for me. He asked me to call my transplant center and ask them what would need to be done. They said that the family would have to tell the attending nurses and that would start the ball rolling. I have no idea what blood type he is, if he even has viable organs and most importantly if his family would consider it. I will of course keep you posted.
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How amazing that your friends are thinking of you so much. Any time someone tries to help is a wonderful moment. This would be wonderful. I'll keep the asst coach and family in my prayers. They have a hard time ahead of them. :pray;
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This situation is so sad. I am very upset. I cannot help but to think about his family. Thank you for the prayers for him and his family.
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Very sad indeed. I too have said a prayer for the family.
That your friend thought of you is heart warming, amongst the tragedy, a glimmer of light.
A couple from our church called in a similar situation when Jenna was waiting, asking to donate their aunt's organs to Jenna, if possible.
It didn't work out but it touched us so much that a family could reach out beyond their grief.
:grouphug;
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Marc, I so pray that this works out for you. Sorry for the young man and his family, but hope they decide to donate.
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Marc, of course I am devastated for the donor's family, and I can imagine this is all so confusing and overwhelming for you. If there really is no hope for the assistant coach, then you know I am hoping that this is it for you and you can say goodbye to dialysis.
My thoughts are with you and the donor and his friends and family. :cuddle;
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My buddy called me. His friend passed away. He told me that he had tried to contact his wife but was unable to prior to the passing.
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:grouphug;
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Well, it has been a long time but I have an update. I just went through 7 hours of doctor appointments. They have approved me to stay on the list. We also discussed and I agreed to accept an extended criteria donor kidney. I have to set up a meeting between one of the living donors, her husband, me and my children and the social worker. She wants to move things along and try to set up a transplant for this summer.
One thing I asked about was if the nurse could tell if I had a transfusion when I was in the hospital when my kidneys originally failed. She said that it very much looked like I had as I had a number of CW antibodies. I was really out of it on morphine when I was in the hospital and remember them talking about a transfusion but was not sure if they did it. The good thing is that they tested my possible donor and we are still a go...so far. I certainly do not want to get my hopes up too high.
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this is wonderful news Marc. I hope you have one of your kids trained to let us know when it happens. Notice I said when, not if. :cuddle;
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I really hope everything goes well for you. You will keep us updated, right?! I'll be thinking of you.
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Good for you Marc...... it only took me three months.... that was a year ago.... I hope you get on soon....
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Great - keep moving forward. :cuddle;
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I didn't think you COULD designate an organ to a specific person.....
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You can here.
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I didn't think you COULD designate an organ to a specific person.....
You can here.
We can't in the UK (I think, although I'm happy to be proven wrong.) We are SO behind the times! *sigh*
Hope it all keeps going in the right direction Marc.
;D
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Marc, this is so cool.
How far is everything now? Keep me posted. :bandance; :bandance; :bandance;
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I didn't think you COULD designate an organ to a specific person.....
Singer Natalie Cole got her kidney from a deceased donor whose family directed it to her.
Also happened for a facebook friend - Becky - http://ihatedialysis.com/forum/index.php?topic=21968.0
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Update:
A while back I had a turn of events but can only write about it now. okarol posted an article that discussed the fact that donors may be denied health coverage. I, of course forwarded the article to my donor and her husband. We then had a meeting with the transplant social worker to discuss it. She told us that yes it was true. We also discussed the fact that if you have your insurance through an employer that is small that it could increase your premiums. Well, my buddy owns his own company and it is a small company so he had a very real concern that his insurance would increase. A mutual friend is his agent that he carries his health insurance through and our mutual friend could not let him know if the premiums would increase if his wife gave me a kidney.
I mentioned the 7 year wait and the social worker said that it was 7 years when my kidneys failed but now type O blood in SoCal was now a 8-10 year wait. the fact that I agreed to an extended criteria kidney could maybe cut that wait time in half.
So that is that. I will wait and pray that I will beat the odds. My kids need me. I so want to walk my daughter down the isle and be a grandpa some day.
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What about your son is he still following through with the testing?
That's what I hate about America and being chronically ill...insurance!! blah!!! Won't be happy until we are all dead!!!
Keep the faith Marc!
xo,
R
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I hate insurance companies!!! They make enough money, they dont need to raise rates just because you dared to us the insurance. Keep you chin up Marc, I just know something good is coming up for you.
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Marc,
I am so sorry to hear about your troubles. Just know that I am thinking of you. :grouphug;
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What about your son is he still following through with the testing?
That's what I hate about America and being chronically ill...insurance!! blah!!! Won't be happy until we are all dead!!!
Keep the faith Marc!
xo,
R
I can't. I just can't.
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Marc,
All I can say is that I wish the insurance industry in this country were not so screwed up. This sucks big time. :thumbdown;
I'm sorry. :'(
Thinking of you.
Aleta
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Update:
A while back I had a turn of events but can only write about it now. okarol posted an article that discussed the fact that donors may be denied health coverage. I, of course forwarded the article to my donor and her husband. We then had a meeting with the transplant social worker to discuss it. She told us that yes it was true. We also discussed the fact that if you have your insurance through an employer that is small that it could increase your premiums. Well, my buddy owns his own company and it is a small company so he had a very real concern that his insurance would increase. A mutual friend is his agent that he carries his health insurance through and our mutual friend could not let him know if the premiums would increase if his wife gave me a kidney.
I mentioned the 7 year wait and the social worker said that it was 7 years when my kidneys failed but now type O blood in SoCal was now a 8-10 year wait. the fact that I agreed to an extended criteria kidney could maybe cut that wait time in half.
So that is that. I will wait and pray that I will beat the odds. My kids need me. I so want to walk my daughter down the isle and be a grandpa some day.
I know groups are working on this problem, but it's actually pretty a rare event. Some insurance companies believe that donors are considered to have a "pre-existing condition" due to donating, meaning a waiting period or increase in premiums. This is incorrect. The donors go through a battery of tests to ensure that they will not be harmed or disadvantaged by donating a kidney. The admins at Living Donors Online have helped other donors overcome this obstacle with their insurance plans and are available to help anyone who has the same issue.
You were a good friend to let your possible donor know about this issue. I will keep you updated as I find out more.
It's true, the wait in Los Angeles area is now 10 years for O blood type. That's why a living donor is essential. Don't give up Marc, there is someone out there to help you. You need to get your story out in a broader range of people and your donor will find you. I am happy to help however I can.
:cuddle;
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Wait a minute; I'm confused. Marc, is everyone concerned CERTAIN that your buddy's insurance premiums would be affected if his wife donated? There seems to be rather a lot of assumptions and maybes in your post. Can someone call the insurance company and find out for sure? I find it difficult to believe that his insurance agent doesn't know the answer to this. At the very least, the agent should find the hell out! An insurance agent is selling a product (an insurance policy), so it is his duty to know all about said product.
I'm sorry if I am missing part of the story here, but it seems to me that someone should be getting some definite answers, preferably committed to paper!
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Our mutual friend, the agent could not say. I know him VERY well. He offered to let my oldest son live with him when I was hospitalized. I also know that he knows his products inside and out. He can not speak for the underwriters of the policies nor would the underwriters state either way. Part of the issue is that my donor is covered under a policy for a company with less than 10 employees. If he worked for a large company this would not be such an issue.
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Our mutual friend, the agent could not say. I know him VERY well. He offered to let my oldest son live with him when I was hospitalized. I also know that he knows his products inside and out. He can not speak for the underwriters of the policies nor would the underwriters state either way. Part of the issue is that my donor is covered under a policy for a company with less than 10 employees. If he worked for a large company this would not be such an issue.
OK, so the problem is not the agent but is the underwriters. Why won't the underwriters state what they will cover and what they exclude? An insurance policy is not supposed to be a mystery. I personally would be very worried if I was unable to find out what my policy covered and what it did not, and I certainly would balk at paying money for insurance whose exclusions weren't very apparent.
What exactly is the difference in coverage/benefits and exclusions between those offered to a larger company and those offered to a smaller company?
I just still find it very hard to believe that your friend cannot approach his insurance company, IN WRITING, and say, "My wife is considering donating a kidney. Please outline how/if this would affect our coverage under policy number blah blah held by The Blah Blah Company."
What if your buddy's wife were to lose a kidney because of cancer or injury? Would his policy respond to THAT?
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The transplant hospital called me today to confirm that I do not have any living donor prospects. I confirmed this and then asked if their policies were the same. If I were to find an altruistic donor they would not do the transplant as they have very strict rules that I must have an emotional connection to the donor. She said that was correct. I then asked if they were any further on doing any chains. She said that there was one more hurdle and hopefully by the end of the year they may be closer to possibly doing chain donations. I said then no, I do not have any possible living donors at this time. She said she would be contacting me at the beginning of next year to set up the doctor appointments to keep me on the list.
Just the phone call I needed. I am having one of the hardest times since my kidney failure.
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:grouphug; :grouphug; :grouphug;
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I am sorry to hear this, Marc.
All I can think is to explore other options - a different hospital, or maybe train for NxStage? I know it requires commitment from a partner, but as you already self-cannulate, maybe you would consider asking your older son or a friend to train with you? You would be doing it yourself, and just need them as backup in case of emergency.
Heartbreaking to read of you struggling. I can see how that phone call would only bring your mood lower. Not helpful. :grouphug;
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So, who gets to decide the validity or the quality of any "emotional attachment" that you may have with an altruistic donor? If a stranger walked up to me tomorrow and said, "MooseMom, I heard you need a kidney, and I'd like to offer you one of mine," you bet I'd get pretty emotionally attached to that angel pretty damn quickly.
I thought that potential donors have to go through a lot of hoops, including a psych evaluation. If that's the case, then wouldn't they be able to suss out if your altruistic donor was somehow manipulating you? And are they so damn sure that someone to whom you have an "emotional attachment" comes without psychological blackmail?
Seriously, this pisses me off. Who are these people to deny you treatment based upon their assessment of how someone feels about you or how you feel about him/her? That's just ludicrous. Just because their rules are "strict" doesn't mean they aren't cruel and stupid.
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They are worried that I would be paying them for a kidney. lol I have $8 in my checking account and no savings.
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They are worried that I would be paying them for a kidney. lol I have $8 in my checking account and no savings.
What, and they assume that you couldn't possibly pay a family member enough for a vacation to the Bahamas? Look, I understand that centers have to have rules for ethical reasons, but they shouldn't be just random crap they make up and make you follow just because they have you by the short and curlies. For them to make the fundamental assumption that someone to whom you have some emotional attachment would be a better/ethically safer donor than a relative stranger is just flat out wrong. There are people on IHD who I have never met that I have deeper feelings for than for most members of my own family.
I would think seriously about going ahead and trying to find an altruistic donor, or just change centers like cariad suggested. If you can't change centers, find a donor and THEN worry about getting them approved.
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Can you change hospitals?
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*huggles*
I realise I'm a bit late (a whole month!) but going back to the insurance premiums; why do they increase? Surely in an ideal world they should decrease? Someone who donates has to go through SO MANY hoops to prove their health, both physically and mentally.
If the altrusitic donor issue is only with one hospital/centre then can you change centres? How many places can you be listed with? I really hope that something comes up soon for you.
*huggles* again (because you can never have too many, even if they are ineffectual.)
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I chose this hospital because they have they highest success rates for patients and kidneys in all of Southern California.
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Seems to me that having the highest success rate doesn't help if they won't let you have an altruistic donor. Don't let statistics blind you. How about LarryG's story about finding a donor on Craigslist? Why does HIS center allow that but YOURS does not? I truly don't mean to be harsh, but look who has got a kidney.
This just really gets up my nose, Marc. I really chafe at the idea that your center thinks they can play God and decide who is emotionally attached enough and who is not. Frankly, I think it is illogical, and it borders on the immoral. I'm just really angry on your behalf. Sorry.
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Thanks, to be honest I am just way too tired to be angry. Life is just getting way too hard. I have to worry more about keeping a roof over my head and food on the table right now.
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It was 2004 when Jenna's hospital said they didn't accept donors that didn't have a significant emotional relationship with her. The other hospital said they would be willing to look at each donor on an individual basis. We had already tested all the family and friends that had offered to donate, so changing hospitals became necessary.
YLGuy, I am sorry you're having difficult times. You've got so much responsibility with your kids and dealing with CKD on top of that must be tough. Please let me know how I can help. :cuddle;
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I strongly agree with some of the recent posts about check into going to another hospital that will allow donors that you don't have a emotional connection to. Forget the statistics some hospitals will really push their great results to convince you to go with them. Overall the numbers are usually not that much of a difference and if you see a difference often times it is connected to the type of patients that a hospital may embrace that could be high risk and another hospital would reject. View the numbers this way kidney transplants are not done on every corner they are not like nose jobs and breast implants where there tons and tons and tons of people doing them. Unless you see one hospital with a 50% success rate and another with 85% don't get caught up in it.
If you change hospitals try and do what one of the earlier posts talked about with getting your story out there. You said you pray do you belong to a church? Maybe you used to be in a bowling league or some social club. High School reunion recently or coming up? You have kids, have them set up a Facebook account and try and find old friends. How about neighbors? Talk to as many people as you can about this because it could spark a idea to get you a kidney.
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It was 3 years ago today that I was informed that I had end stage renal failure. :(
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It was 3 years ago today that I was informed that I had end stage renal failure. :(
And you need a hug. :grouphug;
One of the things I came to realize through dealing with Carl's transplant hospital (which also had a high success rate) was that they were VERY quick to deny all sorts of potential donors. I'm not sure if that was a factor in their success rate or not, but it was quite disconcerting.
I agree that you might want to investigate another transplant hospital. Transplanting is good business. When we started looking into another hospital a little further from home, our center suddenly agree to do a nuclear test of my kidney function. The other hospital had a slightly lower level of functioning that they would accept than our first center. As it turned out, Carl got a kidney from a deceased donor. But it was amazing how quickly the hospital became more accommodating when they thought they were going to lose us.
:cuddle;
Aleta
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I just finished my last appointment for the annual stay on "The List" check ups. The dietitian and transplant surgeon told me that I was probably their healthiest patient. I kept thinking about all the people who say how I don't look sick at all. No, I do not wallow in my sorrow but it has taken so much from me.
3 years down...7 more to go! :rofl; :'(
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Just stopped by to add to my thread. Won't be able to come back to read any replies. It is way too hard for me right now.
Kind of bummed out. I have been on dialysis for 5 1/2 years. I had a number of people offer to donate a kidney (8). They were tested and could not donate for one reason or another. I recently had another person offer to donate one of their kidneys (#9). (Thank you so much Judy and all the others! There are no words that could even begin to relay how grateful I am to those who cared enough to offer one of their kidneys to me.)
A couple of weeks ago I had a meeting with my transplant surgeon. He said it was a go! I told him that the donor is a teacher and wants to wait until the beginning of summer to do it. He said great and was going to start the process in February when I have my annuals. I was finally going to be done with dialysis! Woo Hoo!
About 4 hours later I got a call from my dermatologist. It was 8:15 at night. He told me that the growth on my ankle was a rare sarcoma. I spent about 9 hours at City of Hope Hospital the other day. It has not spread to my lungs. They are pretty sure they can save my foot but they may have to remove my Achilles' Tendon. Either way I will have a huge whole in my foot that they will have to take skin from somewhere else to close up. I start radiation therapy soon. 5 days/week for 4-5 weeks before I have surgery. Dialysis days will be long. I will be going an hour away for radiation therapy as soon as I get out of dialysis. Maybe some chemo after surgery.
The biggest bummer is the fact that the cancer will knock me off the transplant list for a minimum of 2-5 years. I just got off the phone with my transplant hospital. I am officially suspended from the list. I guess this is a good thing because if I had the transplant either the the cancer would have spread quickly due to the immunosuppressants or I would have had to stop taking them killing the new kidney. Kidney failure and dialysis have been a long and difficult road. It seems like I have run a marathon. I turned the corner and saw that the finish line was only a 100 yards ahead. I looked down and when I looked back up someone had moved the finish line. No longer visible. Four hours. I had four hours that I thought I would be done with the nightmare they call dialysis. I will beat this too but it will be awhile before I actually get my life back. I am still here to complain about it and that is always a good thing. I am truly blessed with 3 awesome kids and many caring friends and family.
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YLGuy: Even though you may not be able to come back here to read replies, hope that somehow you will be able to "feel" the strength, hope and well wishes that some here will be sending your way. Hopefully in some way or another, you will know and feel others thinking of you and wishing they could somehow give you strength because, whether you realize it or not, you have just given of yourself.
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One day you will come back, not to read replies, but because we are part of your kidney tribe, and you are part of ours. I pray for strength, peace of mind and courage for you and your family as you go thought this difficult time. Cancer sucks,and you have been dealt a lousy hand, but I am glad the sarcoma has not spread to your lungs. Please let someone know haw you are doing. We will worry about you.
Hugs.
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:grouphug; :grouphug; :grouphug;
And lots of strength, and luck, and love, Cas
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Well, that's just really crappy. I'm well and truly pissed off and am very angry on your behalf. Sorry...I don't have any sweet and sugar words for you to live by at the moment.
I hope that by the time to feel like reading these replies, your circumstances will have changed for the better.
In the meantime, do what you need to do. Take good care of yourself.
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I'm so sorry. That is absolutely crappy. We are here for you if you need to vent more.
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Yes, I am still here to add to this Journey. I fought cancer and won. It turned out that it was not a sarcoma but a rare form of Non-Hodgkin's Lymphoma. I had surgery and then went through low dose radiation every Tuesday and Thursday keeping my Monday, Wednesday and Friday dialysis schedule. This went on for what felt like eternity. I had the best doctors at a great hospital here in Southern California. I owe my life to City of Hope! Then it happened. They cleared me for transplant and wrote a letter of recommendation for me to get back on the transplant list. I chose a different hospital because the transplant surgeon I had before rudely told me that I might be able to find another center to do my transplant but he guaranteed I would be dead within a year if I pursued that. My oncologists assured me that this was not the case for me anymore. The original transplant surgeon would not even speak with my oncology team from City of Hope. Very unprofessional.
In the meantime one of my high school buddies had called me out of the blue awhile back as his younger brother passed suddenly here in SoCal. He asked if I could use his brother's kidney. Because I was not listed anywhere I could not take it. It is very moving to be thought of during a time like that. May he rest in peace.
I contacted a great center near me and was going to start the process all over again at the end of last year. I was about to have my orientation meeting when I got a call from my uncle back in Connecticut. He told me that if I wanted to say good-bye to my mom that I should get on a plane right away. As tough as this journey has been I know that I am truly blessed with some really great people in my life. They made it possible for me to afford to go back. I made it back there and my heart broke when I walked into the hospital room. I stayed there for a month while she transitioned into Hospice. I had to get back to California and a week after I returned she passed. I was extremely close with her and even though I lived so far away we spoke multiple times a week at length. I still go to pick up my phone now and then.
The transplant center was not to keen that I postponed everything a month but they understood. I was almost done with my testing when Covid-19 hit and they stopped my testing. I only had a couple of things left to get back on the list. Recently they opened back up and I finished testing. My file went to committee and I was approved for transplant. They were supposed to contact UNOS last Friday to put me back on the list. I am waiting for my letter. They said that since I will have 11 1/2 years on a 10 year list I should get calls right away. My bag is packed. I am cautiously optimistic.
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Good gracious ! What a journey ! I am very sorry about the bad luck you had to go through and I just hope you can make use of your packed bag a.s.a.p. in the transplant-centre and enjoy a new kidney.
Hopefully your "kids" are alright and keep your mental strengths & hope going.
Best wishes and good-luck-thoughts from Kristina. :grouphug;
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My kids are great. Single dad of 3 I raised through all of this. My oldest graduated cum laude with a Bachelor's degree from Cal State. He recently paid off his student loans and is starting graduate school. My middle child graduated college in 4 years with 2 Bachelor's degrees from UCI and has her Master's degree. My youngest is in his last year at Cal Poly and will graduate with a degree in Civil Engineering. My 2 boys still live with me and I am grateful for all of their love and support. I love being their dad.
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Oh, my God! YLGuy! I can hardly believe it's you! I am thrilled to bits to "see" you.
Gosh, you have really been through the wars, haven't yoiu. Cancer, the passing of your mother, fighting to get on the transplant list, getting ON the transplant list, raising your kids...it doesn't get much harder than that. But here you are, finally in prime position to receive a new kidney and a new future for you and your sons and daughter. This really is the best news I've heard today. Thank you SO MUCH for taking the time and making the effort to come back to tell us. I wish you only the best and am looking forward to hearing good news about a new kidney!
This is just fantastic, it really is.
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Well, it finally happened. I got the call. I received a transplant Monday night 10/19/2020. The kidney came from someone younger and flown in from another state the kidney was delayed because of covid and the lack of flights It was a 5 out if 6 match and started to produce urine before they closed up It was approximately 11 years and 7 months after I started this journey. I am blessed to have so many people in my life that helped and supported me. I got to raise 3 great kids that are there for me and the best reason to never give up the fight no matter how hard it was at times.
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Congratulations! Its fairly amazing and cool how your wait time was so "short" due to the time on dialysis.
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:yahoo; Fantastic newsYLGuy, good luck, enjoy and have an extra drink on me,
Love and luck, Cas
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Oh! My! Goodness!! This dreadful year of 2020 has a silver lining! I'm so very happy for you and wish you the very best for your new future!
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Great to hear!