Screening process/how much to initiate

[JAS]

I am new to this forum and greatly appreciate all the info I've been able to peruse. I am in the early stages of the screening process for donation to a good friend's older sister in another state. I faxed in my initial screening and questionnaire forms to the hospital on 2/6. I know that the recipient and I are compatible blood types, but no further bloodwork (i.e. crossmatching) has been done yet. I was told that the next step is a 24-hour urine collection, which I can do in my resident city. I have spoken to my donor coordinator twice but have found that I have to make most of the calls. I know that my recipient's case was approved by the transplant board at the hospital last Thursday, and now they have to verify her insurance coverage. I realize that, depending upon the hospital, the screening process can be quite lengthy, and I know I have to be patient.

I have every intention of going through with my donation if I end up being the best match. My only issue is that if I end up making it through the entire screening process, I would not be able to commit to donating until late August/early September (due to prior travel plans that were made about 18 months ago). My recipient is Stage IV but is not on dialysis yet, and dialysis is not yet imminent.

What I'm wondering is how much I should be pushing the screening process, given that I would not be able to donate until 5-6 months from now. Would certain tests (other than crossmatch) have to be run again if there was a time lapse between approval and scheduled surgery? I have a specific time later this month when it would be particularly convenient for me to fly to the recipient's hospital to complete the round of donor tests that they only run on Thursdays. I let my donor coordinator know this, and she said she would contact me about the 24-hour urine test prior to that time, but I have not heard back from her in over a week, and I will be out of the country for a week between now and then.

Part of me says to sit back and let the process run its own course--what's meant to be will be--and the other part of me knows how busy the coordinators are and makes me think I should initiate more of my follow-up. Any thoughts?

[Snoopy]

Hi, JAS.
  Welcome to LDO!
   The donor screening process really can take quite a while, especially given under-funded programs and over-worked donor coordinators.
    It definitely is possible for you and your scheduling needs to get lost in the system, at least temporarily.  After a while, you may get a sense for what's the best way to work with your coordinator.  E-mails may be more effective than phone calls, or vice-versa.  Or, consider making friends with the secretary, who may be better equipped to focus on administrative, scheduling-type concerns. 
   I don't want to say anything definitive about which, if any, tests become obsolete at any given time (there are several others on this list who can be more authoritative on that) but I recall that, at my center, some of the more expensive tests were saved till after I had cleared several earlier (cheaper) hurdles first.
  Like you, I had several tricky travel and work constraints, and I made it a point to remind the transplant center whenever I could.
   Overall, you will need to be patient.  As I have written here before, this process is a marathon, not a sprint!
       Good luck, Snoopy

[JAS]

Thanks, Snoopy. Found out today that my recipient has 5 viable donors who have come forward to be screened, which is pretty amazing. Also, because a donor kidney will only last a certain amount of years, they don't want her to do the transplant too soon. I imagine the whole process will really slow down now.

[carmelpi]

A lot of the times our coordinators are one person handling a multitude of cases.  That being said I am a firm believer that the squeaky wheel gets the grease - I made arrangements to have all of my initial testing done by my pcp instead of the center.  Certain things I was not able to do that with (crossmatch and HIV testing) but I made sure to get those done in fairly short order.  I even hand-carried my results from my PCP to the transplant center.

That being said - I had a very short time between the beginning of my donation and surgery - <2 months.  I am very unusual in how fast mine got done (I literally called my poor coordinator multiple times a day and harassed her about results).  If yours progresses like normal donors your 5-6 month time frame, I believe, can be considered about average, so don't fret.  I would make sure to make it clear that you want the donation to proceed in that time.

Also - my dad's first kidney from a deceased donor lasted 14 years - it only failed due to damage from the immunosuppresent drugs preventing rejection.  With new advances in drugs now the damage is far less and the kidney could last a lot longer.  It's all up to individuals, though.

[JAS]

Thanks, carmelpi. It's great that donor kidneys last longer these days! I suspect because she's only Stage IV and is not on dialysis yet, they want her to wait a little longer. Her diet is already severely restricted, though, so she'd rather do it sooner. She's going to meet with her nephrologist again and ask. I have no problem initiating further contact with the donor coordinator. I may not end up being the best match of the five of us, but I'm sure willing to give it a try!

[elephant]

Dear JAS,

My time to donation was also quite short, since we were doing a pre-emptive donation.  That means that the transplant took place before Daddy had to start dialysis.  Transplantation outcomes are better if the recipient has not started dialysis, so I would be surprised if this was the reason for waiting.   

The transplant center was good about trying to complete my testing quickly.  It did mean that I had to take several days off work to go for tests, rather than trying to get them in at one time.  In addition, there are certain tests that may need to be done by your own personal physician, so I worked to get those done quickly as well.  For example, women need to have a current pap-smear and mammogram.  Older donors may need a stress test and colonoscopy.

Love, elephant

[JAS]

Thanks, elephant. I'm current on my pap, mammogram, colonoscopy, cholesterol, and skin cancer check, so I'm ready to go whenever they are.

[Fr Pat]

     Also keep in mind that some hospitals may deliberately slow down the process in order to let potential donors have plenty of time to think it over and perhaps choose to back out. They might also delay contacting you for the next step, in order to see if you care enough to be pro-active and ask about the delay. A potential donor who is having doubts now, but is embarrassed to tell the recipient that, might use the hospital's lack of response as a good excuse to quietly drop out without having to actually say "No, I no longer wish to donate." So, it's good to be politely insistent so that the hospital knows you are still interested. It can be helpful at each stage to clearly ask WHEN the next step will be.
    best wishes,
       Fr. Pat

[Mooge]

I definitely agree with those who have encouraged being proactive. I was told by another donor before I started that the process was very donor-driven and found that to indeed be the case. I had several times when I was trying and trying to wait patiently for results, only to break down and call after a week or so and then have the doctor tell me "oh yes, I've been meaning to call you about the results..." I wouldn't worry too much about bothering them, but things do tend to move slowly so you may have to do some encouraging in order to have the transplant in 6 months or so.

I also did a pre-emptive transplant and my recipient went longer without dialysis than she probably should have because she was determined to have her transplant before she did any dialysis. I also would think that would be a reason to speed things up rather than slow them down.

Good luck - it's a great thing you're doing.

[JAS]

Thanks, Mooge. Luckily, she doesn't need dialysis yet, but it's hard to judge when she may reach Stage V from Stage IV. I did call the donor coordinator again and faxed her my pap, mammogram, and colonoscopy results (she was very grateful to have them). Just waiting on insurance approval now. Having lunch with the recipient next week when I'm in her area, so we'll have a good chance to discuss all of this.

Even if the transplant didn't take place until 6 months (or more) from now, it would help me to know if I'm the most qualified donor or not.

[JAS]

Well, I became quite proactive, and the process is moving along! I did the 24-hour urine test at home in mid-April and flew down to CO for two days of testing last week: EKG, chest X-ray, CT angio, nuclear stress test, 18 vials of blood; and meetings with donor coordinator, donor advocate/social worker, nurse practitioner, nephrologist, and transplant surgeon. All went extremely well, and I was approved by the transplant board on Thursday afternoon. Just waiting for tissue match and crossmatch results on Wednesday of this week. My recipient's PRA is 0%, so I'm hoping for a negative crossmatch. No idea what the tissue match will be. I found it fascinating to go through all the tests, and I was very impressed with all the doctors, nurses, and administrators. I was treated well!

[elephant]

Dear Jas,

I was fascinated with all the testing too.  Guess when you are healthy all those tests are more interesting than if you were ill and waiting for 'bad' news.  Keep us updated about your progress!

Love, elephant

[JAS]

Got the last results: 0/6 tissue match but, thankfully, a negative crossmatch. I'm being told that the 0/6 is OK for a living donor. Anyone else gone through surgery with a 0/6 match?