Mayo Clinic: Day 1

As most of you know, today we began our consultations and testing formy transplant here at the Mayo Clinic in Jacksonville, FL. I have hada number of people request an email update, so here goes!We have been told that Mayo is one of the best- seems as though thisis accurate! Everything about the facility is state of the art, andthe whole place is like a well-oiled machine. All of the staff memberswe encountered during the day were just as nice as they could be. Theywere exceedingly polite and professional. It was a very long day,though..!We arrived shortly before 7am for registration. Although many peoplewere waiting in the registration area, we were called up to the deskin no mroe than 20 minutes. We were checked in in a matter of 5minutes, and the clerk said we could head upstairs to our firstappointment, even though it was not scheuled till 8am. We got up thereat about 7:40. At 7:45 the called me back for triage, and the doctorarrived in my room at 8:02 am. We were impressed! The 8am appointmentwas with the doctor who is the senior consultant for kidney/ pancreastransplants. We went over my labs, biopsies, etc in depth, and then heexplained the whole basic process to us. After my testing & such iscompleted next week (July 2), my case will be submitted to Mayo'stransplant commitee. This comittee reviews my records and thendetermines wheter I am a suitable candidate for the surgery. Thedoctor told us that from everything he could see, I am the idealcandidate. Great news!!! Of course he said he couldn't make anypromises, which we understood. But he said that they look at manythings, including other health problems, age, and if we/ I seem likewe will be able to manage the often tedious after-care & medicineregimen. I will have to take rejection medications probably for therest of my life- there are many side effects, but he said thatimmunosuppressant drugs have advanced leaps and bounds even i just thelast 5-10 years, and the side effects are becoming more and moretolerable.We then met with the R.N. who will be our transplant clinicalcoordinator. She will be with us through the entire process; if wehave any issues or concerns, she is available to us. She said after myfinal appointments on July 2, she should have my file to the selectioncomitte that same week, and we will probably get our answer within thenext week. We are really excited- we didn't know we would be able toget all of this done so quickly.After I am approved by the committe, the donor search will begin. Mayowill then begin to screen my potential living donors, one at a time.The success rate of the surgery when using a kidney from a livingdonor is signifigantly higher, so we are hoping we will find someonewho is a match. If we cannot find a living donor, the doctor saidaverage national wait time on the list is apx. anywhere from 2-4years. We also asked the doctor about our chances of having morechildren. He said the post-surgery wait time will be at least a year(which we knew), but that it is definately very possible. It willhinge on whether my new kidney is functioning well.
Our next appointment was in the lab, for bloodwork & urine sample. Iwarned the nurse, "I am a fainter!" Unless I lay down when having myblood drawn, I usually end up on the fllord. She was very sweet, andtook me to the room which had a bed. There was a little sign besidethe door that said "Swoon Room"... She got me settled and then went toget the vials needed for the bloodwork the doctors had requested. Shecame back with two metal vial racks, both full of vials. I sort fosub-consiously figured that the Swoon Room needed restocking. I waswrong.... they were all for ME. Rick began counting them and kind oftrailed off around 16. I asked, how many are there..? He said, "I'llteell you when you're done". I got about halfway through and wasfeeling OK. Then the ceiling tiles started looking fuzzy... then thecold sweat started, and at that point I knew where all this was goingto end up! That's the point at which, if I am not laying down, I hitthe floor. I did not faint, but I did get sick. No fun!!! Rick said hewas really impressed... I asked for the final count which ended upbeing.....30 vials of blood. 30!!! And he said some of them were asbig around as his thumb and 6" long. I don't feel so bad for gettingsick!
We hit up the cafeteria as soon as we could, since I had been fastingsince 10pm the night before. It was the best bagel I had ever eaten!
After the lab work we headed upstairs for a chest Xray, which wasshort & sweet. Because everything had run so ahead of schedule, wethen had a 2 hour wait until my bone density scan. That department wasrunning a bit behind (it seemed like they were short-staffed today),and I fell asleep in the little holding tank room. The bone densityscan was pretty cool, I got to see my hop bones and spine and such.The purpose of this scan is to see what my current density is, becausethe anti- rejection drugs have a tendency to leech calcium from yourbones and they need to have something to compare to later on.
Since we ran late in radiology, we had only 8 minutes to RUN to thenext appointment, which was allergy/ infections disease skin test.They made 3 tiny marks on the underside of my forearm with marker, andthen injected substances under my skin. I have to go back in 2 daysand have them see if I reacted to anything. One of the things theytested for was tuburculosis- they said they will be able to tell if Ihave ever been exposed to TB, even if I have never gotten sick, whichI thought was interesting. The first two injections did not hurt muchat all. The last one, which was the TB test, was in the middle of theunderside of my forearm, about 3 inches down fro my wrist. I found outthat THIS IS A VERY TENDER SPOT!!! That one really hurt.
Our final appointment of the day was for an electrocardiogram, whichwas quick and easy. We headed home around 3:30pm. Long day!
Tomorrow we have to be back at 7am, and will begin the day with anabdominal ultrasound. Also on the slate for tomorrow: living donorinstruction class, post-op & pharamceutical instruction classes,meeting with the financial advisor, echocardiogram, another allergy/skin test, and finally a transplant center surgical consult- mycaregiver is required to attend this one with me.Another long day, but it looks like we will be getting LOTS ofinformation and answers to questions.
Thanks for taking the time to read all of this! We continue to betouched by the outpouring of love from our friends and family. Each ofyou has helped us!!! I will have another update tomorrow.