Has anyone had a pre-dialysis transplant?

[Falkenbach]

This is what we are planning for myself, with my father as the donor. I am really starting to feel sick, but the last few tests and appointments will mean that it will be at least a couple more months before the transplant.... some days I wonder if I'd be better off on dialysis prior to the op.

My Neph. says there are pros and cons to both.

I'd like to hear people share their pre-dialysis transplant experiences, though.

[paris]

I am in the same spot, except the three months we thought it would take to do a living donor transplant has now grown into 2 years.  My local neph seems to have a different time frame than the transplant center. I am hoping yours goes quickly and all goes well. I will look forward to hearing more from you.

[Falkenbach]

I will certainly keep you updated. 

[kelliOR]

I certainly wanted my transplant before dialysis, but my neph was in no hurry to refer me.  He said I had "plenty of time".  Well, things spiraled downhill quite rapidly, and I was on dialysis for about 9 months before transplant.  I was so pissed at my doc for not acting sooner.  I was suspicious of him getting some kickback from Fresenius, plus I had to see him more often. $$$.

However, even though I hate to admit it, dialysis did make me healthier and I wanted to be in the best physical condition I could be in when surgery time came.  After all, my living donor was making a great sacrifice.  To me, taking care of myself was honoring the gift he was giving.

kelli

[waitlisted]

That is my plan as well. I was referred to evaluation right after the kidney function dropped below the required limit (GFR 20). I was evaluated and put on the list last October. After that my wife was evaluated for donation and for our positive surprise she was having same blood type and approved as donor in Dec.

As I am lucky not feeling sick yet, I am currently waiting on the list, but at the same time keeping having living donation as plan B if the function drops too low before the call. (I know am very lucky being able to have plan B).

When asking from the transplant neph about the timing of living transfer, I was recommended to do it at about GFR 15-16, to be still in good condition for the transplant. Based on the comments I have received from doctors, if you feel sick=require dialysis, you should have dialysis before the transplantation to recover better from the surgery.

[kelliOR]

Hi Waitlisted,

Are you currently on the transplant list even though you have a living donor thats been approved?  Not sure I understand. Is your living donor plan B?

kelli

[angela515]

Weird.... I guess rules are different everywhere... but when i had my mom being tested for my first transplant, I was told I couldn't go on the list b/c I had a living donor. In which I agree, if you got a living donor, and they match and are just going through the tests, you shouldn't be allowed on the list... your taking chances away from others who have no living donor.

[waitlisted]

Hi Waitlisted,

Are you currently on the transplant list even though you have a living donor thats been approved?  Not sure I understand. Is your living donor plan B?

kelli

Kelli, yes you understood correctly.

[Falkenbach]

Based on the comments I have received from doctors, if you feel sick=require dialysis, you should have dialysis before the transplantation to recover better from the surgery.

Yes, I'm feeling sick but the transplant should be occurring within weeks. Probably withiin 8 weeks at the most. The transplant team are doing their best to fasttrack everything, but without cutting corners. We had a visit with one of the doctors today (as well as the surgeon a few days ago, plus the transplant nurse the following day) and we've been quite pleased with the whole team and hospital.

I feel reassured that the surgeon (Mr Rao at the Queen Elizabeth Hospital in South Australia) is apparently one of the most experienced transplant surgeons in the country, and the Queen Liz has done more kidney transplants than any other hospital in Australia. So at least I'll be in experienced hands!

My creatinine isn't particularly high at around 450, but I am very small (45 kg) so that's why I'm feeling sick I guess. If there's any hold up to the transplant for any reason, I have no doubt they will get me onto dialysis pretty quickly.

[lola]

I know when my hubbie was on the list the first time they said they wanted to get him a kidney b-4 dialyses and the day of transplant his creatine was in the 9's that was 14 yrs ago and now he's being relisted again and they still say they would like to see you not on dialyses but the wait is alooooot longer now

[Jill D.]

My intent was to have a pre-dialysis transplant. I was evaluated in Nov 2003 when my GFR was around 15; my sister was tested and found to be a perfect match in Jan 2004. Since I still felt good and my labs weren't bad, my doctors said to wait. In early 2005 my neph felt we should do the transplant that year, so we scheduled for Aug 2005. A couple of days before surgery I found that my PRA was very high and I was a positive crossmatch with my sister's tissue. It was kinda back to square one to try and find a live donor, and I was put on the list. In Nov 2005 I found out Mayo Clinic would do positive crossmatch transplants and I was evaluated there in Feb 2006 and my sister was again tested and accepted as my donor in May 2006. However, my labs had gotten so bad (potassium, phosphorous, hyperparathyroidism) that I started dialysis in April 2006. Like Kelli, I did feel a lot better and was healthier when I had my transplant in Dec 2006 because of dialysis.

I will say that because I felt so good in Aug 2005 (my first scheduled transplant), I always wondered if I was having the transplant too soon -  wanted to keep my own kidneys as long as possible! It turns out that the timing was very good since I ended up on dialysis 8 months later.

Also, FYI...after being evaluated at Mayo I was put on the list out there as well, so I was on 2 lists. Both hospitals told me I would stay on the list until the minute I had my transplant. I guess I never saw myself as being selfish, rather keeping my options open and "God's will be done". My coordinator even told me a story about a patient who, the day before her scheduled live transplant, got the call that a cadaver kidney that was a perfect match had become available. She went with the cadaver kidney, and shortly after (a month or two) her donor got cancer and probably would have had more complications if she had had the surgery. My coordinator even called it "divine intervention". 

[waitlisted]

Hi cycobully,

I'm sure you transplant team knows what is the best for you.

What kind of symptoms are you having? I am just interested comparing to my situation. My creatinine was last time 508 (65kg) and I still feel good.

[angela515]

Creatnine of 508? What is the USA conversion..?

[waitlisted]

Creatnine of 508? What is the USA conversion..?

508 umol/l = 5.7 mg/dl

[angela515]

 

[Falkenbach]

What kind of symptoms are you having? I am just interested comparing to my situation. My creatinine was last time 508 (65kg) and I still feel good.

Regular nausea and extreme tiredness. I need to sleep a lot. I can do very little (around the house or whatever) before I crash and need to sleep.

I also have a lot of the other regular stuff that goes with the territory - restless legs syndrome (severe at times), and badly dry and itchy skin. Also,  osteoporosis and I have also had anaemia which is being treated with Epo. Just this last week I've also been very head-achy but I don't know if that's related. My blood pressure seems to be fine as long as I take my meds.

[angela515]

What kind of symptoms are you having? I am just interested comparing to my situation. My creatinine was last time 508 (65kg) and I still feel good.

Regular nausea and extreme tiredness. I need to sleep a lot. I can do very little (around the house or whatever) before I crash and need to sleep.

I also have a lot of the other regular stuff that goes with the territory - restless legs syndrome (severe at times), and badly dry and itchy skin. Also,  osteoporosis and I have also had anaemia which is being treated with Epo. Just this last week I've also been very head-achy but I don't know if that's related. My blood pressure seems to be fine as long as I take my meds.

Your having the same exacgt probs I had while ON dialysis. LOL

[Falkenbach]

That's actually quite interesting, angela! I've heard people say how fantastic they felt on dialysis, in comparison to not having it.

I guess this just further highlights how different experiences can be for different people.

[livecam]

I know of a case where a person did receive a pre-dialysis cadaveric transplant.  Just to give you a little background information...I had a fellow dialysis patient who suffered from PKD.  Her sister also had the same problem but was not on dialysis.  The non dialysis sister had a busy career as on overseas engineer for a large American construction company.

When PKD made the possibility of dialysis a real one for her she was listed for transplant.  I don't recall how long her wait time on the list was but a cadaveric kidney did become available and she was transplanted without ever having to start dialysis.  She had a quick recovery and got right back to work without missing a beat.

Timing the point of listing to remaining kidney function is important in making something like this happen.  With a disease like PKD the decline happens over a period of time so there is time to plan for what is going to happen.

It's too bad things can't happen that way for all of us but for the lucky few, they do.

[Falkenbach]

K, update.

The only things left to do, I believe, are one more scan for my dad (he's already had said scan, but they weren't happy with the age of the equipment used or something, so they're getting him to come to Adelaide and have it done again here) and they have fast-tracked my appointment with the renal unit psychiatrist so I am seeing him tomorrow - apparently standard procedure. I doubt there will be any issues there because I have had time to become more accepting of my situation and am actually looking forward to having the transplant over with and getting on the path to my new life. So that should not be any kind of hold up.

So I can only assume they will contact us to discuss a date very soon, and I've already been told that there is no waiting list so once we are ready - it's all systems go. I think my initial estimate of May-June will be pretty spot on.

What can I say - I'm excited, nervous, still scared, a little sad (not sure why) but most importantly, looking forward.

[RichardMEL]

Oh Louise.. I hope very much it works out for you and your dad. I'm in a similar situation.. just a couple of tests left for my sister and the psych interview for us both (it is standard) and then yeah hopefully May for me

your feelings seem very close to mine.. so either we're both crazy or quite normal.. I choose the later

keep us informed...fingers crossed

[charee]

I know of a case where a person did receive a pre-dialysis cadaveric transplant.  Just to give you a little background information...I had a fellow dialysis patient who suffered from PKD.  Her sister also had the same problem but was not on dialysis.  The non dialysis sister had a busy career as on overseas engineer for a large American construction company.

When PKD made the possibility of dialysis a real one for her she was listed for transplant.  I don't recall how long her wait time on the list was but a cadaveric kidney did become available and she was transplanted without ever having to start dialysis.  She had a quick recovery and got right back to work without missing a beat.

Timing the point of listing to remaining kidney function is important in making something like this happen.  With a disease like PKD the decline happens over a period of time so there is time to plan for what is going to happen.

It's too bad things can't happen that way for all of us but for the lucky few, they do.

Things are certainly done differently here in Aus . I have pkd but you can't go on the transplant list until you are  on dialysis but you can get a living donor transplant before you start if you are lucky enough to find one.

[Wattle]

I know of a case where a person did receive a pre-dialysis cadaveric transplant.  Just to give you a little background information...I had a fellow dialysis patient who suffered from PKD.  Her sister also had the same problem but was not on dialysis.  The non dialysis sister had a busy career as on overseas engineer for a large American construction company.

When PKD made the possibility of dialysis a real one for her she was listed for transplant.  I don't recall how long her wait time on the list was but a cadaveric kidney did become available and she was transplanted without ever having to start dialysis.  She had a quick recovery and got right back to work without missing a beat.

Timing the point of listing to remaining kidney function is important in making something like this happen.  With a disease like PKD the decline happens over a period of time so there is time to plan for what is going to happen.

It's too bad things can't happen that way for all of us but for the lucky few, they do.

Things are certainly done differently here in Aus . I have pkd but you can't go on the transplant list until you are  on dialysis but you can get a living donor transplant before you start if you are lucky enough to find one.

I have had the same experience as Charee. I also have PKD and was placed on the list early, before I started dialysis. However, I was later told by the Transplant team that it meant very little. Your actual waiting time begins the day of your first dialysis treatment. The donor rate in Australia is sooo bad and the list is getting bigger, so the wait for a suitable kidney is also getting longer. A pre-dialysis cadaver transplant would be ideal its just not a reality in Australia. The only chance you have for a pre-dialysis transplant is a live donor. Generally a relative or close friend. There are no sites such as matchingdonors.com in Australia and I have not heard of any altruistic donations. Hopefully in the future our donor rates will improve and the waiting time will decrease.     

[Sluff]

Why can't there be one set of laws or rules world wide to follow to simplify things. My prayers are with you Louise. I hope the best for you.

[Falkenbach]

The donor rate in Australia is sooo bad and the list is getting bigger, so the wait for a suitable kidney is also getting longer.

Sadly, some states have far worse waiting times than others. I'm not sure as to the reasons for this. I was told recently at the hospital that here in SA the average waiting time is around 2 years - in Vic and NSW it is about 7-8 years on average.

I am so so so lucky to have a living donor and there's not a day goes by that I forget about that.