Evaluation week!

So....right after Cyrca finally approved the insurance for the evaluation it was scheduled! Me and  my girls flew off  to Honolulu! This was a grueling week....lots of tests, injections, meetings, information, more tests, doctor appts....we spent probably 8 hrs a day at Queens Hospital Transplant Center. It was not easy on any of us but the girls made me proud again as they took notes and asked lots of questions, even made jokes when they could tell that was what I needed !

So far I am very impressed with the sincerity,kindness and competence of the entire staff at Queens! They were all very thorough and could tell they were very pleased that the insurance company finally approved this week of testings! They ALL received Mauis Aware bracelets and it was so cool to see them wearing them all week long!

Reck Navarro and his team at Cyrca/SHOTT could not have been more helpful. Jane Lee and the entire staff at Queens Transplant Center made us feel important, welcome and at home the entire time.

Transplant evaluation can be confusing and demanding. All appts are scheduled one after the next.

First day was with the head in patient Psychiatrist, Dr Serghi, who was wonderful and called me an inspiration and told my girls they should be proud of "who their mom is". He had read over my files very carefully and called me the "poster woman for everything that is wrong with insurance in this country today"! He admired the tenacity I have and the advocacy of my own health. He went on to tell us all that "it only needs a liver" (inside joke there!) and told us all I was 100% cleared for transplant from his perspective. He said he could tell during our hour and a half that I had a very clear and realistic grasp for my situation, what is involved and yet to come. He also went on to say he would be sure that the meds I am given at the time will NOT be what they have in the past and make some of the adverse reactions terrible for me, he said the doctors of the past should be ashamed at the drugs they had used and should have known better.
Whew! One down!

Next was Jane Lee , Transplant Coordinator who spent a GREAT deal of time with us going over everything to expect. This woman KNOWS her job and does it well. She provided us with her phone number , email address and assured us we could call or email at any time and she would always get right back to us.

The Cardiologist was really super nice (Dr Terekubo) and ran a bunch of icky tests but cleared me immediately! He took the time to remind the girls to STOP SMOKING!

The Team consists of Tx Financial, Pharmacy, Social Worker, Cryca reps, Dietician....so many people.....the Cyrca Rep, Lisa,  wanted us to know that Reck and Beverly told her "Wait till you meet her...her face lights up when she smiles!" This almost made me cry after giving Reck such a brutal time during the past year. I am now very sure he was doing everything in his power to get things approved but the medical director had the final say, it was NOT in his hands.

We learned soooo much...the costs involved are STAGGERING! Surgery alone is 300K.....Procurement of the organ is another 120K (RECIPIENTS pay NOT the donor or their family), Annual lab and prescriptons for life are approx 41K per year. Evaluation process is a min of 10K, lodging and transport and food is another 3-5k....tests tests tests.....the costs involved are just one after the next...NO ONE could do this without insurance....

We learned once "that call" comes in it is a total of 18 hrs max for the organ to be harvested to the point that it is put in my body. I have ONE hour to answer their calls and make a decision. They have three numbers to reach me. They keep the donor alive for as long as possible to allow patient to get to Center, prep and wheeled into surgery. They no longer do the mercedes cut...now it is more like a c section.

Miranda will not have time to get to Honolulu before i go into surgery but she will be there as soon as I wake up. Shannon will be there with me as they put me under ....Thank God!) I would hate to be alone during this time.

Presently there are 22 ppl on the Hawaii transplant list....two are inactive leaving only 20...of those 20 only approx 8 have same blood type as me. These are good odds.

On to the Heptologist....Dr Tsai is wonderful....he squeezed me in and I am now under his care (THANK GOD!) He changed my meds already and was extremely helpful!

Next was Dental....yuck....two deep cavities and a deep cleaning and I was cleared! No fun....

Ultra sound was not easy to see....it is so obvious even to the untrained eye....always is hard to see.
Cat-scans, stress tests, chest xray, 23 viles of labs drawn from my port.

Finally the last appt was with Dr Linda Wong the transplant surgeon....she was quick, thorough and made it clear that as soon as all the test results come in the team would meet about me and make a decision to list me or not list me. The only thing that would preclude me from being listed is if they find cancer anywhere except my liver.

So on to the colonoscopy and pap here on Maui.....wish me luck....noooooo cancer please nooooo cancer....

More to follow!
Whew!