I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: tyefly on June 02, 2011, 10:34:05 AM
-
I am currently listed at OHSU ( oregon ) and have been for almost two years now.... I am currently transferring to another transplant center because they have a Paired Donor program....( legacy ) There wait time is lower at this hospital... by a saving of a year..... wait time is 1 y 10m.. whereas at OHSU it 2 y 9 m.... I had a meeting at the new transplant center and was told that there standards for their kidneys are different than the other ( OHSU ) center.... they didn't say that these kidneys were the Expanded Criteria Donor but said that they have different standards than the other transplant center... they had plenty of statistics to show that many transplants are successfull.... This I guess contributes to the wait less which is less at this clinic.... I was told that when I transfer I would be put at the top of their list because of my time that I already have.... That's exciting.... but do I need to worry about the standard of quality of kidney...?? I was surprised that different transplant centers have different standards.... I want a kidney but I want one that will last me forever.....LOL I am 52 years old and have alot more time ( I think ) and dont want to face dialysis again.... ( I know no ones wants to but....) I transferring to this center because of the Pair donation program as I have a donor who blood type is not the same as mine, but healthy and ready to go.... But they ask me if a kidney came available would I take it.... or would I want to wait for a Paired donation to come up.. which may take much longer.... Decisions... I know a live kidney would be the best..... but Heck any kidney would be better than doing D..... whats with these different standards.... Are they trying to sell me a bad kidney......LOL
-
You will be given a choice if a kidney that is not considered ideal becomes available before your paired donation.
I would be in favor of changing centers if it means getting a transplant sooner. It is not that likely that a cadaver kidney will become available before you paired donation, and you still have the option of declining it in favor of your live donation!
:2thumbsup;
Aleta
-
This would be a concern to bring up and make sure they are aware of. Don't wait till the last minute, keep your records up to date with them which includes your preference in extended criteria. I wa given that option way before I had my transplant. I signed a sheet that stated I did not want extended criteria also. So bring this up and ask questions about their standards and procedures regarding extended criteria.
Now for a question. I may have this wrong, but isn't paired kidney, where a recipient has a donor who doesn't match them, but still want's to donate? If so I thought this would be a faster process than being on a cadaver wait list because you have a living donor. I guess it depends on where you live also and if they have someone out of state, but the first center having a 2 year wait, wow.
-
This would be a concern to bring up and make sure they are aware of. Don't wait till the last minute, keep your records up to date with them which includes your preference in extended criteria. I wa given that option way before I had my transplant. I signed a sheet that stated I did not want extended criteria also. So bring this up and ask questions about their standards and procedures regarding extended criteria.
I actually asked the surgeon at time of evaluation if I would be told if the kidney was a ECD kidney at the time I got the offer. He looked at me and reasssured me "YOU will not be offered an ECD kidney. ECD Kidneys are only offered to people 60 and older, at our center.
would be a faster process than being on a cadaver wait list because you have a living donor. I guess it depends on where you live also and if they have someone out of state, but the first center having a 2 year wait, wow.
You just never know when a deceased donor kidney becomes available. It might be sooner than the time it takes for all the work-up is done for all the donors.
In fact I have heard of happening. Of course the patient is given the option of taking the deceased kidney or wait for a living donor.
-
The ECD kidney would not be given to the patient who has not signed up the ECD agreement form.
I posted on another topic about OHSU and Legacy. I spent a little time to study these two centers about 2.5 years ago. My question was why Legacy had much shorter waiting times than OHSU since they belong to the same waiting list? From the much poor results from Legacy, my guess was that OHSU was picky to accept kidneys whereas Legacy had a lower standard to accept kidneys, including those rejected by OHSU. This guess could explain the shorter waiting times and poor results from Legacy. However, I saw the same poorer results of Legacy from living donors, which scared me. Both transplant coordinators from OHSU and Legacy said to me that Legacy might accept sicker patients. Based on the available data in the web, I compared patient profiles from both centers. But I could not determine there were much differences between two centers (in terms of ages and diabetic patients). Because I did not accept the transplant evaluation protocol from Legacy, I never did any evaluation there and could not discuss any further with the staff there. Recently, someone asked me a question about these two centers, and I took a look at their results. I saw that the results from Legacy has improved a lot from three years ago, although its results are still the poorest among all centers in the Pacific Northwest. Anyway, based on its current results, it seems to be OK to do transplant at Legacy if there is no any better option.
-
You can always turn down an offer. I know that there are new matching protocols being used by different centers for paired exchanges.
My husband got a Rolls Royce of kidneys after two months being listed at a center with a large paired exchange program. He had a PRA of 94%. You never know how quick a paired exchange program can be if the center participates on a national level.
-
I have so much to learn about this transplant stuff.... I know that my PRA is 30% and I am not sure if that is bad or what.... I know that I have some antibodies.... I am going in for a final review with the surgeon next week... and was wondering what type of questions I should be asking.... its hard.....you want a kidney so bad..but you want a really good one... we all do.... dont want to have to do dialysis ever again.... I am 52 and want one that will last...
what kinds of questions would you ask a surgeon...... I know I dont staples...... no way !!!!! LOL
-
A PRA of 30 isn't too awful.
Studies show that a double HLA dr match plays a big role in longevity.
I would ask about plasmapheresis pre transplant (not needed if a negative crossmatch), the size of the living donor pool and what hospitals they trade HLA information.
Just google HLA antigens kidney transplant. You will get loads of information on antigen issues and matching.
-
A PRA of 30 is good. In simple terms it means that you will react to 30% of the people tested. You have a great chance at getting a match. You know my story, so impossible things do happen! I signed the EC papers after being on the list 3 years. But, I am older than you. When the coordinator talked with me in the ER that day, the first thing they said was the kidney donor had high blood pressure, but the kidney looked great -- and the odds were so against me ever getting one, I made the choice to accept it. Great decision! The center wants you to have the best outcome (it helps their statistics, too). You are so knowledgeable, so imformed and you know so many who have traveled your path, that I think it is just a matter of time for that perfect kidney goes to you. I always say that my kidney isn't perfect, but it is perfect for me. You know I will be doing a happy dance :bandance; when that day comes!
-
update on transferrying transplant hospitals.... had my last visit with the new hospital where I had to meet with the surgeon..... wasn't sure what that type of appt would be like.... I went to see him for my appt and he had a couple of questions for me ....Like why do you want a transplant..... well we know that answer to that.... but then he got me on the table and wanted to take a look at my belly and then told me where the kidney will go and the incision and the amount of time for the surgery and hospital stay.... Ok ... then I had to ask him..... staples or tape..... he looked at me and smiled...... He said staples.... I said ok how much more do I have to pay to get the glue and tape job.... he again smiled and told me that all transplant surgery's are done with staples due to possible infection and its a easier way for them to deal with infection... well I have had two surgery's one with glue and tape and the other with staples.... the scar from the staples is really big and ugly.... So I guess I got my answer.... staples it will be when the time comes....he also told me that in just a couple of months I will be at the top of their list..... I am transferring to this hospital to possible get into the paired donation program as I have a live donor with a different blood type.... I really want a live kidney but they keep telling me that I will probably be offered a kidney way before the paired donation can come together.... and now that the surgeon has mapped out my stomach for surgery.... I guess I am ready to go....
-
I had staples for my transplant, but they also used the glue and my scar is barely visible. It might be their technique or something that can or not cause a bad scar. I was worried about a bad scar also after seeing my grandfathers open heart surgery scars as a kid.
Hopefully you wont have a bad scar after you heal up.
-
Legacy does not have many patients on its list, so it is not too difficult to be the top. The top of its list does not mean getting a kidney very soon because some patients may have longer waiting lists at OHSU and VA (most likely the case) such that they are above the top of Legacy list. Legacy hardly has any patients with 4 or 5 years of waiting time. OHSU and VA have some patients with >5 years of waiting time. Legacy, OSHU and VA share the same list for kidneys.
-
Jenna had glue, and no scar tissue. But I know different surgeons have their preferences, so I would think he's doing what's best for you. Good for you - keep moving forward, you've made good progress! I am always impressed how you get stuff to happen! Best wishes for a great transplant, whichever way it goes! :cuddle;