My Journey

[YLGuy]

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?

[willowtreewren]

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. 

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.

  Aleta

[jbeany]

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.

[paris]

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!   

[cariad]

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! 

[Jean]

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. 

[okarol]

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.

[YLGuy]

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. 

[willowtreewren]

Oh, Marc, I feel for you. I get  when I'm hungry!

 

Well, I hope things will keep rolling along smoothly now!

Aleta

[Wenchie58]

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!

[BASSMAN]

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.

[Sunny]

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!

[Hanify]

Yay - go Marc.

[YLGuy]

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.   

[monrein]

    

[Sunny]

Excellent news!

[YLGuy]

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. 

[monrein]

Moving right along.  That's fantastic.

[cariad]

Sweet! Welcome to the roster.... 

[YLGuy]

Sweet! Welcome to the roster.... 

I will let you guys know if and when I get my UNOS letter.

[paris]

Great news Marc.   Nice to hear that someone has already had blood drawn and the process is going in the right direction.      

[YLGuy]

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. 

[Falkenbach]

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.

[st789]

Congratulation for a smooth process.

[YLGuy]

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.