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Finished transplant evaluation


#1

Hi girls and boys.

Yesterday I finished the 4th and final day of my evaluation for transplant at the UWMC in Seattle. I have just a few more tests and odds and ends to get finished up over the next couple of weeks. So, my case should be presented to the board very soon. Like nearly everything in my experience, it wasn’t as scary or tough as I had imagined. You sure can waste a lot of time and energy fretting about things that don’t happen. lol

The physical tests were not particularly difficult other than the normal stress of spending all day running around a hospital getting poked with needles occasionally. 24 vials of blood and an arterial draw for blood gases one day. Drank plenty of water before that day. The stress test was done with drugs, imaging, and electronic monitoring. Very interesting to me.

The transplant social worker interview was a biggie. She had some pretty hard truths to discuss. She also asked many challenging and serious questions. She was WAY more concerned about my Pre-transplant plan than Post. Particularly for someone living alone, she said that the danger level is much, much higher Pre-transplant. Sickness, hepatic encephalopathy, etc… are often easy to start without being recognized by the patient, and can get out of hand very quickly, and cause damage than can not be overcome. Hard things to hear, but very sound advice. She said that Post-transplant, they will tell us exactly what to do and we only have to do it!

The surgical consult went very well. The surgeon told us that he doesn’t consider my paraplegia to be a disqualifying problem in and of itself. He said that they have to look at lung and kidney function as the biggest factors.

The anesthesia consult was very interesting as well.

Yesterday was the 3 1/2 hour class. It was primarily about $$$. Insurance issues, and paying for drugs. Also, a discussion on all of the drugs and their potential side affects.

After getting through it, I would say first and foremost to get your head together, get focused, and get ready to play. Having a strong and confident outlook always helps everything. Kindness and courtesy always go a long way. Having some strong support with you is critical. (no different than everyday life) Different people hear things differently, and comparing notes on what was covered is great! I was so fortunate to have an incredible couple with me. A 20+ year friend, and an amazing new friend. Bringing coolers of food and drinks to the hospital was a great idea. (strongly suggested by my “new” friend) Nothing like a nice little picnic in the parking garage! I had two family members attend the transplant class as well.

I’ll have to see what the board says now. It is in the judges hands… In the meantime, I have started a gym membership with a session with a trainer. I also have an evaluation with a Physical Therapist scheduled for Monday. One of my goals for whatever the rest of my life may look like is to continue to stay as strong, healthy, happy, and positive as I can for as long as I can. That will certainly help Post-transplant if that happens for me.

Wishing everyone a great start to summer.
:peace_symbol:
Doug


#2

Wow! Great info, thanks very much! Sounds pretty exhausting but I suppose that’s the way it goes. Best of luck buddy, I’ll certainly keep you in my thoughts!


#3

Doug,
Thanks for updating us on your transplant evaluation. I’m glad it all went well. You know for me, the blood gas draw was probably the most painful of the tests they did, but well worth it. I hope the transplant committee comes back with a unanimous decision and you get listed soon! Wishing you great success with this hope of the gift of life. It will change your life forever. Please let us know if there’s anything we can do along this path.

Mark


#4

Thanks Rich. I appreciate it!

Doug


#5

Thank you Mark! You’re right. That arterial draw didn’t feel very good. :wink: I appreciate the good thoughts!

Doug


#6

Hey Doug!
I’m glad you had support with you through all the tests! Whew- it’s finally over!
I’m hoping and praying for good news for you! Why am I ending everything in an exclamation point? <—I broke it with a question mark.
Have a good day Doug, stay positive and keep us updated! There’s the exclamation point again, I swear I’m not yelling…

Heather :slight_smile:


#7

One of the best things a pscer can do is have a good mental outlook. Having a good sense of humor helps too. We need it!


#8

Thanks Heather.

Yell all that you want!! LOL Sometimes it helps. :wink:

I did get some news this afternoon. Apparently my case was before the board on Wednesday and I was approved to be listed for transplant. That was a surprise as I didn’t think that would happen for a few weeks at least.

I appreciate the support. Have a great weekend!

Doug


#9

That’s true Jeff. That really is just a good way to be for everyone, but becomes more valuable when hard times hit.

Thanks man!
Doug


#10

Doug,
Congratulations on your transplant listing. I pray you will get the call soon! Be assured of our continued support.

Mark
Liver Transplant 2015


#11

Thank you, Mark. I really appreciate it!

Doug


#12

What a whirlwind journey! And here you are now - congratulations!
So very blessed to have the opportunity to join you on your journey. Your attitude and positivity have helped me greatly as I continue to work through just learning I have this crazy damn disease. And I think those parking garage lunches are the best - all I gotta do is show up :slight_smile:

Looking forward to many a more years navigating this ride with you!
Peace and Light and Love
Jennifer


#13

Awww. Thank you Jennifer… for everything! Your courage and willingness to look at this PSC crap at a more advanced stage, up close and personal, is amazing to me.

You make a great co-navigator but I hope we don’t have to spend too many years on THIS particular ride. There are so many, much more fun rides out there, and just never enough time. :wink:

DD


#14

Doug I feel for you I just finished up my transplants evaluation last week. Yes very scary leading up to but not as bad as I thought just running around like a chicken with it’s head cut off and getting stuck several times. New to this site but not to the disease. Also the week before had a colonoscopy which showed high grade dysplasia no meeting with a surgeon this week. This year has been a tough road but with my family by my side I am bound and determined to fight like hell and get better.


#15

mwhermes, Thanks for the comments. So many things that we worry about are a big waste of energy.

I’m sorry to hear about your year but, love your family and keep fighting like hell… I love that!!

Good luck and best wishes to us all.
Doug


#16

Doug,
All the best. I was listed in January and I know the drill. Lots of people to talk to and lots of tests to go through. Once that was done it was just routine blood work in addition to also keep check on the Meld score. In my case by May my Meld shot up to 25 and suddenly went up to 34 and the next day 36. Was top on the transplant list in my region and got transplanted in the next 2 days. Everything happened really fast. One thing that helped me a lot is keeping a positive mind and being mentally strong. I was prepared for any outcome. I feel this is the best medicine for any problem.
I wish you the best and I am very positive you will cross this barrier like the rest of us with no issues.

Mike


#17

Hey Mike.

That sounds like a wild ride. WOW!! Congratulations on making it through.

I’m just pounding it out. Trying to get all of the ducks in the row.

I totally agree on the mindset. But, that works for everything. I don’t always achieve it, but most of the time get pretty close. Thanks for checking in with me. I sure appreciate it.

Doug