Tuesday, May 25, 2010

New Development!

When I was taking a shower this morning I was thinking and thinking about the Dr's appointment that I had later today. I was also thinking about LOST. I realized that going to the Dr so many times was like watching LOST, every week I go in I expect answers but the answers come a little here and there if they come at all. With the LOST finale this last week I wanted my back and forth transplant answers to have a finale. I got satisfactory answers today but there are still some unanswered, sound familiar (hint....LOST)

I went in for another clinic visit at the U of U. I went in first for a check-up because last Thursday I had very strange heart arrhythmia's that lasted for a couple of hours so I went into the ER. The conclusion to this ER visit was that I wasn't in any kind of tachycardia so I will just have to ignore this kind of heart rate because it isn't going anywhere until I get a new heart. The second reason that I went into the clinic was because the transplant team met with the other transplant docs from PCMC and had a plan for me.

The plan was good because I have a new starting place but bad for obvious reasons. I do indeed have cirrhosis of the liver and I will need to transplant both my heart and my liver. That is a huge blow in itself because in the last 20 years there have only been 78 done in America. That is scary because it is such a new surgery, plus my lungs may be too damaged to do that surgery. Another option, heart-liver-lung, but that is reaching and only 10 of those have been done.

The next big blow was that noone in Utah can do a heart-liver and so Quintin and I will have to move yet again. The #1 leader in heart-liver transplants is at the Mayo Clinic in Minnesota. I really don't want to go to MN!! It gets -40 degrees in the winter. However, they have done the most heart-liver transplants (15) and I want the best because I will need the best with my very complex anatomy.

The transplant coordinator has a packet that she has sent to my great surgeon in Chicago and to the Mayo Clinic. We will hear from them hopefully soon and then we can plan our move.....yikes.

Love you all,
Holly

10 comments:

Sara Ker said...

MN has been a place of many miracles for this side of the family...

I've been there in the dead of winter, and I'll be honest, it is not just cold, it's painful...but it sure is a pretty place and there is always heating. :)

...always praying for you!!

The Zenn family said...

Minnesota is a great place to be!!! Sorry it means that you will be further from your family but all will work out. Praying for you and the doctors.

s.lloyd said...

Holly, have you looked at Dr Kato at Columbia he specializes in multiple organ transplant... NYC could be a fun place to live!

Babe in Boysland said...

DUDE. Your life is just one big adventure isn't it??? I love you Holzie.

Wait, does this mean we won't be able to make anymore half-hearted jokes? I'm gonna miss them... :-)

Watson Family said...

Holly, This is Wendy. I wish you the best and still think you're amazing. My brother is moving to Rochester in June. He starts his internship at the Mayo. If we go to visit him, I will look you up. We'd love to see you. Unless you and Quentin want to come down to Naples, FL in search of alligators, pythons, and of course...beautiful beaches. The water temp in the gulf is 85-90 degrees.

Becky said...

You are an amazing person! In the midst of all your trials you still have a great attitude and great faith. I wish you didn't have to move again because your mom and dad are so happy to have you close. If you have to move to get better then get packing because we want you better. Our prayers are with all of you. I know you are on the Stake Presidency list and will be prayed for by name on Sunday in their meeting. We pray for you personally as well.

Lynnette and Paul said...

Hooray.....a plan!! Darn it on having to move though but it sounds like you will be in good hands there. All the oodles of people that love you here in Utah will still be praying and pulling for you in Minnesota. You are an incredible girl and you have always beat the odds so here's to another one that you will conquer!!!! Can't wait to celebrate with you when it's done doing something grand.....you and Paul will be leaving me and Quintin in the dust!!! We'll keep praying. Hang in there. We love you.

Emily and Austin Gray said...

Awww, the frozen north isn't THAT bad. You get used to it! :)

ledmel23 said...

I did my weekly (post Holly update) internet research last night. I found really positive information about the liver/heart transplants they've done at both the Mayo clinic and Cedar Sinai. I'm feeling good about one of those.

Okay - Here's my idea for the finale.... You move to MN (the plane lands fine and everything). I come visit frequently. After only a couple of months a Dr. (who looks surprisingly like Jack) calls and says they have found the perfect heart and liver for you. They do the surgery. Everything goes just as planned. You feel so much better. You move back. I meet a really nice LDS guy who looks like Saywer. And....scene!

I love you Hollz!

Lake Family said...

no mel, what really happens is Jack Bauer will kidnap her and go to an empty warehouse where he demands a dr. performs the surgery and when he won't Jack does it himself. Holly recovers at CTU and Jack joins the church and marries you. Now that is a better ending to 24!