Happy Donor News

Of course it is highly preliminary, but I have found a potential donor with O blood who appears to meet all the criteria to donate a part of his liver to me.

I cried.

So, we shall start the process and see how it goes.

OMG, this is crazy.

Schimbare

More info, please :) Since you were seeking info on how to find a living donor, can you let us know how you went about it?

Would love to hear you post updates on this conversation, and your progress as things move into evaluation, Susan. Exciting news for you, and thanks so much for sharing it! Big Hugs

MamaLama! You want me to go all the way to India? Good grief! I don't travel anywhere further than a few hours from my hepatologist!

Seriously though, it is a little to premature to talk about it in public. I am still in shock and disbelief that I might actually be going down this road with a wonderful donor. I am concerned that he or I will not pass all the health tests necessary, though from what we know, we are both excellent candidates.

I'm also concerned that the hospital might reject my donor due to some unknown factor. I don't like the unknown. Of course this whole process is a high speed marathon run into the unknown. Fun!

What I have done thus far is this -
1. Affiliated with a transplant center that has done lots of living donor transplants.

2. Ditched my parents as caregivers, as they are incapable of fulfilling that role. This caused quite a family upheaval, and it has taken many years, but I know I must build my own family. They love me, but as you know, family relationships can be very difficult.

3. I had my dear boyfriend (we live together) as a totally capable and supportive and loving caregiver. I reached out to my childhood friend who is a stay at home mother to ask if she could help, and she immediately jumped on board as my second caregiver. Her kids are in high school and her husband has a flexible job, so her time can be freed up if I need her. She will accompany me and my BF to the transplant eval on this Thursday.

4. My second caregiver offered to set up a Caring Bridge type account. There is a calendar function where I can add tasks and people can sign up to do them. Right now things are OK, but I can see a time when perhaps one or two meals a week would give me a break from cooking. Plus it has a fundraising function, as well as a journal type thing where I can write messages to keep everyone up to date.

5. I have a very dedicated person to take care of the dog, the cat and the six chickens, and neighbors who will gladly run errands when need be. We have a neighborhood internet group, and just today I posted a message asking if someone was going to Costco who might pick up a giant bag of dog food. Within an hour a neighbor offered to pop in to Costco while he was doing his errands later on today. People are kind.

6. I send detailed health updates to my family, my shrink, and the first line caregivers, generally if I am sick, or every two weeks or so.

7. I spoke to my pastor. One of my first line caregivers is on the outreach committee there. Soon I will reach out to the congregation to inform them of the Caring Bridge website where they will be able to see how they can help. I cannot make it to church as it is too early and too taxing for me. But I've been a member for twenty years, so most people know me and they know my ex-husband and our kids. I am a Congregationalist, (also know in the west as United Church of Christ). You gotta love protestant church ladies and men. You can't stop these people from helping others. Unfortunately, any casseroles they make will have to be low in saturated fat and low salt. No casseroles starting with a can of Campbell's soup! Plus Pastor Mark offered to drive me to appointments in the city, which is a very big deal now that I cannot make the trip there and back on my own.

Cont

Hi Everyone,

My two primary caregivers and I went for the official start of the transplant evaluation. It was a very long day.

We met with a person who gave us a 45 minute overview of the process, then the social worker, the nutritionist, the insurance/financing guy, my hepatologist, the blood sucker guy, and the two transplant coordinators assigned to me, who took a long detailed health history.

After that, I had an appointment with a cardiologist who told me I will need a stress test. They will do one that involves injecting a drug as opposed to my walking on a treadmill.

We were at the hospital from 9:30 till about 3:30. I made it through, but the next day I only got out of bed for an hour or so before going back to sleep. I was extremely fatigued.

The most interesting information presented to us was the strong suggestion that I (and the other transplant candidate that was there with his caregivers) either find a living donor, or list at a hospital that regularly transplants at a lower meld score than is normal in New York City. She explained the whole process of listing somewhere else, and explained how we would have to live near the new hospital once it got close to transplant. While the instructor explained this all in a matter-of-fact fashion, it seemed to me that the NYC hospital was actually telling us not to wait for a cadaveric donor, or we might be out of luck. She also told us the excellent results they have had with imperfect livers, split livers, and very old livers - the oldest was 90. Oh and livers with hep C to be transplanted into candidates that had hep C, to be followed immediately by starting Harvoni or the like.

The people in the transplant department were uniformly kind, highly trained, and personally welcoming. Of course there were all sorts of students, visiting MD's from overseas, and who knows who else was there watching and learning from the people working in this world renowned center.

The one question I had was about another hospital in NYC that is starting to do laparoscopic donor surgeries. I would love to save my donor from having a very large scar. My MD said they are doing the laparoscopic technique at my hospital as well....though it seemed like he might have been fudging that a little. Maybe I am just reading into nothing. But I did say that it was a big deal to me if I were able to have my donor's surgery be done with as small of a scar as possible. And I know that I am a good, healthy, young-ish candidate that will most likely live post transplant - thus improving their survival statistics. I think they would rather keep me that have me go to another NYC hospital - but maybe I am just over thinking the whole thing.

During the instructional part, the instructor talked about the statistics that are available online for all transplant centers. My hospital looks like it has slightly lower positive outcomes than some other hospitals in NYC. But the statistics are updated every six months, and depending if they lose a patient, of whatever. The statistics are not evened out so that the percentages are actually comparable and accurate to the casual reader.

I was not concerned about the slightly lower score of my hospital, but now that the methodology for all hospitals has been explained, I understand that the statistics are going to fluctuate somewhat over a given six month period.

They called me today to tell me that my blood work was fine. Status quo. My meld is 15.

So far so good.
Schimbare

A few things. The incision for a partial donor is small. maybe 2-3 inches long, much like an appendix scar. We (transplant people) call our scars a badge of honor. Unless you're a young woman who's used to wearing a bikini, most of us are proud of our incision (scar).

My cerebral hemorrhage took place 4 years prior to my transplant. It did precipitate the need for a transplant as my liver crapped out due to the trauma from the bleed.

I have spoken to at least a dozen transplant folks. You will feel like a lab rat by the time this is over. That's how medical students learn.

At MGH, my hepatologist and PA were the only Americans, other than one resident. My surgeons were German, Syrian, Chinese and Pakistani. Then there were Scots, Brits, Irish and a doc from Bangladesh. It's like a Benetton ad.

Sounds as if you're on the right track, schimbare.