August 18, 2008

Today was a big day. No doubt….. Judy and Melissa picked me up around 9am. As we drove to the Mayo Clinic it felt like there was a lot of tension in the air!! Except for Melissa….she was busy dancing and rocking out to Madonna on her IPOD. Of course…….

The first appointment was with the Liver guy. They called us back to the room before Judy was done parking the car. Holy Cow, they are serious here. We first saw the Nurse Practitioner Michele, she was really nice and did some vitals. Melissa’s blood pressure was 82/44. Yeah…. Then Dr. Aqel and Michele talked to us. Dr. Aqul is very aggressive. Here is the bottom line as I understand it. Melissa needs several more tests before he can determine what is best for her from a liver stand point. These are scheduled as follows:

Liver panel blood test…… We did this right after the appointment
Liver Biopsy……………..scheduled for Wednesday August 20, at 1pm
Esophageal Pill Scan………. Scheduled for Friday August 22, at 1pm
CT scan………….To be announced.
Psychiatry appointment……., is scheduled for Friday August 29, at 10am. (Needed to be done years ago)
We re-meet with the Liver Guy for the following on Sept 2, at 1:30p.

#1 Liver is worse - she may need Heart and Liver Transplant
#2 Liver is the same - try the medicine to strengthen her liver again.
This time the treatment will be more intense.
#3 Liver is all better - move forward towards Transplantation.

The Mayo clinic in Phoenix has not a done a Heart/Liver Transplant yet. Every test Melissa takes is measuring some sort of risk. They are not crazy about doing the first Heart/Liver Transplant on a severely high risk patient.

Medicine can not be used to strengthen the liver after transplant. So we want it to be really strong before hand. The biopsy will show any scar tissue on the liver. The pill scan is amazing. She will have some sort of monitor taped to her chest and a pager like thing on her waist. She will swallow a pill that has a disposable camera in it. It will take pictures of her esophagus and everything else on the way down. (Aint that cool?)

Then we went to the lobby for a big melt down. Man this stuff is hard to take. We thought we were at the end, but we have only just begun. We feel out of control of any thing that is happening. Very scary. One minute we are joking and laughing and the next we are crying. Whew…………….. Then we went to lunch, (man Melissa can eat) Thank you for paying by the way…. We went over it and over it while we ate. I think we all understood it by the time lunch was over. Next appointment is with the Transplant guy.

Here is where Melissa decided that her lipstick needed to be re applied in the office, because the guys name is Dr. Studley. We were mistaken his name is Dr. Steidley, he is the transplant dr. and the heart failure dr. We had the wrong impression as to why we were there. He very nicely explained the facts. Here they are:
We have to get on the right path to keep Melissa healthy, happy and active as possible. We have to look at every test, every option. (We thought they had) He explained that Heart Transplant could take a long time and we need to get Melissa’s fluid from the PLE under control to keep her out of heart failure now, while we are waiting. (This guy is very long winded and our anxiety increased while listening to his very long story) He did an exam on Melissa, he did express how she had the world’s best teeth! Her blood pressure is now 80/44. (he thought his humor would increase it) He explained that Melissa has several big hurdles in front of her. Again, here is my best impression:

#1 Liver function
#2 Keep her out of heart failure
Wants to try Ultra filtration. It is kind of like dialysis, 2 IV’s
Pulling fluid off without pulling off potassium.
#3 put together all info and give to an informal committee to see she
Is a good candidate for transplant in AZ.
#4 If not in AZ, look elsewhere for a program that will accept her.

Then it would go to a formal committee. All this before she knows, he said we are not talking years, but months before she knows if she is a candidate. He talked a bit about the list.

1a. People are very sick, in the ICU, needing constant support
1b. People using IV medicine to keep their pressure up, may or may
Not be in the hospital.
2. This is where Melissa is
7. On hold (I don’t know if he said anything between 2 and 7)

Oh yea, then he mentioned that she needs a blood test for antibodies, I didn’t totally get this, (it is from the blood transfusions she had when she was five) If she has them, (antibodies) it will be a higher risk for transplant. When you are praying, pray for 0 antibodies.

What’s next for this guy:

Antibodies test: did it today after the appointment
Get the Ultra filtrations set up
Do an overnight oxygen sat check
Start keeping a daily weight log .

Meanwhile, Melissa is going to Las Vegas this weekend with her friends. (Finally, I think this has been scheduled about 10 times) September 4th she goes to California for a wedding (congrats Brian)

The doctors said after these two trips they want Melissa to clear her calendar for anything that they may need to do to her. Yea!!