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Posted 10/11/2011 2:58 PM (GMT 0)
I apologize for not posting more often but I just haven't had time, although I try to browse this site as time permits to keep up with everyone. For those who are not familiar with my situation I am the care-giver for my wife who has ESLD due to autoimmune hepatitis/primary biliary biliary cirrhosis.

My wife had multiple hospital admissions in the spring and early summer, and I almost lost her twice. The first time was due to septis where she spent nearly a week in ICU and another three days in a room in the transplant unit. The last incident involved her potassium level going off the charts causing nausea, etc, requiring an admission from the ER. During this stay on the second night her blood pressure suddenly dropped, resulting in her liver enzymes going into the 1000's. She was eventually diagnosed with even another auto-immune disorder named "Addison's disease." After the doctor's began giving her fludrocortisone (which she is still taking every day) her potassium came down to normal levels and she was discharged to go home (this being in July). Her MELD score this past month has risen to 18.

Baylor hospital in Dallas is now doing live donor transplants, and her 21 year old grand-daughter wants to be a donor. She is a pre-nursing college junior and is fully aware of the risks involved, but insists this is what she wants to do. My wife is just starting the long involved processed of being evaluated for this procedure, and has tests scheduled beginning next week. Her grand-daughter has only spoken by telephone to the transplant team and has yet to begin any testing. One good thing in our favor is her blood type is O-, which if I understand correctly is compatible with all other blood types, as my wife is O+. 

I am retiring from my job next week so that I can spend more time at home and as a care giver, and will keep you all posted as to how this process progresses.

Yes, I am taking care of myself............

Each of you remain in my prayers,

Charlie

Posted 10/11/2011 4:40 PM (GMT 0)

Hi Charlie!

Glad to hear things have stabilized.  I know how stressful it was earlier this year.  I like how you automatically put a line in about taking care of yourself!  You know everyone on here too well! wink

Being O- will help with her donating.  I hope her tissue is a match for your wife.  I think it's wonderful that she wants to be a live liver donor!  Someone at work, earlier this year, donated to his brother in Canada who has PBC.

It's great that you have the option to retire now so you can be home more.  I'm sure that'll be easier for both of you :-)

Posted 10/11/2011 5:50 PM (GMT 0)
   yeah   knew if I didn't mentioning taking care of myself you ladies would lecture me....and rightfully so.

 

Posted 10/11/2011 6:17 PM (GMT 0)
Hi, Charlie! Good to see you posting, and I'm glad you are taking care of yourself. :-)

When would it be possible for the granddaughter to undergo testing for donor transplant? Has your wife already been through the evaluation process? If not, this probably needs to be done soon...before the g'daughter's evaluation.

Please keep us updated. My best to your wife.

Hugs,
Connie
Posted 10/11/2011 7:17 PM (GMT 0)
We first learned (by letter) about the "live donor" program a couple of months ago, and I had only a brief conversation last month with the RN coordinator via telephone. She told me that  my wife's insurance would first  have to agree to pay for both operations, then my wife would have to be evaluated, next her g'daughter would have to undergo extensive testing. Her g'daughter also spoke with this same lady by phone and after expressing her interest in being a live donor, was told the same, however she hasn't heard anything from Baylor since.

We were just recently notified by letter that my wife needed a current pap-smear and mamogram, (which was done last week). We were also notified via another letter of an ultra sound scheduled for next wednesday, with labs afterwards. Since all of these tests were done recently, I can only assume they are related to the "live donor" program. When we see her Dr next week I plan on asking many more questions and will keep you all updated.

I know, I should have been more inquisitive.............

Posted 10/11/2011 9:30 PM (GMT 0)
Charlie, you are right. The tests your wife will be having are related to transplant, be it live donor or otherwise.

Hugs,
Connie
Posted 10/12/2011 3:04 AM (GMT 0)
Charlie,

So glad to see you posting! Sorry you have had so many ups and downs this summer, but sounds like she is stable!

We also go through Baylor Dallas and received that same letter. What a blessing that your granddaughter is willing to step up and make that sacrifice! I am sure you saw on the news in this area recently about one of the staff at a local TV station donating a kidney to her mother! I think stories like that have brought so much more awareness out, and now that Baylor Dallas is doing live donor transplants, hoping more people will be able to receive. Not sure about my hubby, and to be honest I did not ask that as he has had so many problems, in the back of my mind I guess I have been convinced the answer would be no.

Praying you guys get approved, and all will go smoothly for you as you have had so many bumps in the road.

Also, glad to see you are taking care of yourself, too!!

Try to update as you can

Mer

Posted 10/12/2011 1:45 PM (GMT 0)
Mer,

Yes, she is a remarkable young lady to step up and volunteer to donate a part of her liver to save her grandmother's life. The journey has just started and I know they are many hurdles for them to overcome, but I just hope and pray that it will work out. Janie's hepatologist has already told us the process will not be easy. From my personal research on Dr. Testa, he has been performing live donor transplants for over a decade and is considered one of the best surgeons in the world for this procedure. It appears he just recently joined Baylor from the University of Chicago Hospital where he did completed his residency in mid 90's.

I am taking care of myself also. I have been contemplating retirement for some time, and after my recent 67th birthday, decided it was time to end this daily grind from Fort Worth to Dallas. The stress of the commute and my job is getting to me. Now I will have more time to myself, and continue to take care of my wife.

Take care and I will keep you folks posted as the process continues.


Charlie
Posted 10/12/2011 1:50 PM (GMT 0)
smilewinkgrin   When I mentioned the "ladies" would lecture me, I didn't intend to exclude the male posters, I was specifically thinking about Pink Grandma, Connie, and of course Mer.

Charlie

Posted 10/13/2011 2:34 AM (GMT 0)
devil devil You got my number don't you Charlie? I am really glad that you are taking care of yourself too.

Your granddaughter must be really special.......just like mine smilewinkgrin

Thoughts and prayers........
Posted 10/13/2011 7:17 PM (GMT 0)
Hi Charlie

I've been coming to this forum for a year and so far, to my knowledge, we have not had a live donor graft posted. It is absolutely fantastic that the docs have figured this out!

I wish you all well and hope for a successful outcome

At Mikes center in Miami they only do tx from traumas. So sad for the donor family. But life changing for those who receive
Posted 10/13/2011 9:46 PM (GMT 0)
Charlie,

I was laid off a couple of years ago, and while it was traumatic at the time, I realize that the stress I was under, and also taking care of hubby was really just too much for me, so it was a blessing in disguise. I now go to school. So, it seems your retirement it perfect timing!!

ML, Baylor is a wonderful transplant center, and they did my brother in law's liver transplant 19 years ago!! That being said, they are just now starting the live donor transplants, but I am very confident they will be successful!

Charlie, praying all goes well with the evaluation process for your wife and your granddaughter!!

Mer
Posted 10/14/2011 3:05 PM (GMT 0)
There just comes a time in life when your inner-self says "I just can't do this anymore." My inner-self has been screaming at me for the past year. I'm very fortunate that I will be financially able to retire at this stage of my life. It will be the first time since I was 15 yrs old that I wont have a job to go to each day.
Posted 10/14/2011 7:07 PM (GMT 0)
Charlie, I had been retired when Mike got sick, but I had been VERY busy with various volunteer projects...board of directors of several associations, newsletters, writing groups, book clubs, committees for this and that.

Little by little I have had to pull in to focus on Mike.  It became a full time caregiving job for a year up un til his transplant in May 2011.

Since then it has been less hectic, but for the back slides, med allergy, etc.

Now, 6 months out, we are good. And I am taking back some of my retirement activities...but not too much.  I still go to all his appointments and often do the driving on longer trips.  So I have to be very flexible.

Best to you,

Carol

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