May Clinic: Day 4-ish

Sorry for the delay in posting! The holiday weekend kept us pretty busy and work has been hectic because I have missed so many days for doctors appointments. I've been taking stacks of work home with me and finishing things at the house.

Our final full day at Mayo was on Wednesday 7/2/08. I had some more bloodwork early in the morning (only 2 vials!), and then we met with the head of the surgery team. Dr. Ganwa is also the regional director of our region for UNOS (United Network for Organ Sharing) so we are really confident that I am getting quality care! He was very nice, and we liked him very much. He went over all the results from my tests and labwork, and also answered lots of questions we had.

Turns out I DO have some small kidney stones but Dr. Ganwa didn't seem alarmed. He said they won't need to treat them unless they get really large and start causing problems. My bloodwork showed that my cholesterol & triglycerides are through the roof.... I am not going to say the exact number because y'all would REALLY freak out. I was feeling like a fat lazy American, but the doctor said even if I was a super skinny vegetarian, it would probably be pretty high. Both are aggravated greatly by my kidney failure. So, there are plans to add a cholesterol medication to my regimen of meds. We are also meeting with a dietician soon.
http://www.nlm.nih.gov/medlineplus/ency/article/000490.htm

We asked him about my changes of getting pregnant later on. We have been getting mixed information and had been feeling pretty down-hearted about it. But Dr. Ganwa said YES, there is definately a very good chance I can have a healthy pregnancy. We must wait at least a year after the surgery (which we knew), and the function of the new kidney must be good, and my creatanine levels must be steadily below 1.5. He gave the some information about a doctor in Philadelphia who has been collecting data and researching pregnancy in post-transplant patients for over 15 years now. We have gotten ALOT of good info and are feeling much more optomistic.

We did have one setback though. Dr. Ganwa said that the labs they did on me these past 2 weeks showed my kidney function to be at 21.5%. Insurance companies, being horrible and evil like they are, will NOT allow me to be listed on the national transplant list until I reach 20% function or lower.
My case will still go to the transplant committee this week, and all my of diagnostics & work-ups are good for one year. So, Dr. Ganwa said that my creatanine will get tested once a month and as soon as I drop to 20% or below, I'll get listed.
There's been alot of sadness at home since we got this news; we took it pretty hard. How much longer to we have to sit around and just wait for me to get sicker?

However- I called my transplant coordinator today to ask her a few questions, and as she flipped through all my lab results she saw the 21.5% that they got. She was really bummed out... then she said, "Tell you what. You'll be here Thursday for another appointment. Let's send you to the lab & have them draw another renal function panel & see what we can get". She said for me to try and not be super-hydrated when I go have the blood drawn, because that can make my creatanine levels look better than they really are. She said I can drink something with dinner the night before, but after that, nothing- not even water. SO, cross your fingers everyone & say a prayer that this works so we don't have to WAIT any longer.

After we met with Dr. Ganwa on Thursday, we met with the infectious disease specialist. The anti-rejection drugs greatly suppress your immune system, so we are going to have to take alot of extra precautions in the first 6 month-1 year post surgery. We won't be able to allow anyone over at the house who has so much as a sniffle. No babies with runny noses, etc. At work, at least at first, people will need to 'foam in' to my office. I will have to be diligent about hand-washing and not touching things like door handles & surfaces in public, which I am already pretty paranoid about so that should be easy. Rick will have to take over on cleaning the kitties' litter box (yay!), and all of the pet bathing. Once I feel physicall up to cleaning house, I will have to wear gloves and a mask, but I will still have to avoid an yexcessive dust or mold/ fungus type things.

She told me I don't have any AIDS or syphillis or gonnoreah, hurrah. She said I have also never had any kind of herpes virus, not even a cold sore. They could also tell just from my bloodwork that I had already had chicken pox & mono. There are some vaccinations I need to go get (tetanus, pneumonia, hepatitis, pertussis) and some others I can't remember.
I mentioned to her that I worked with kids for over 2 years and she was shocked. She said "You'd never know it from your bloodwork!" There's quite a few common germy things that she said almost everyone who works with children will get at some point. Apparently Ms.Erin was nice n' clean while she worked at the preschool/ daycare. I rock!
However, this means that my immune system won't have an antibody for it if I catch the germ post-surgery, which means we have to be extra careful.
She eased alot of our worrries about our pets & my post-surgery immune system. She said pets are fine as long we we observe some common sense things- keep them bathed, free of fleas, and don't let them lick my face. She said I will have to wear a mask for a little while after the surgery to protect me from getting sick, but she didn't mention for how long.

I went to my primary care doctor, Dr. Carlos, today to get the immunizations that Mayo ordered, but I was running a low-grade temp, 99.5 @ the doctor. I have been dragging & just feeling icky since Friday but I was trying to keep on keepin on. Last night Rick finally said to me, "You feel warm..." so we took my temp, which was 99.4. Dr. Carlos took a urine sample to make sure I didn't have a UTI but he said there was no sign of any type of infection. He was very hesitant to vaccinate me while I was running a temp and not feeling well, so we rescheduled for next Tuesday. He was out of the pneumonia vaccine, so I would have had to come back anyways.

So, tonight I am still running a low temp and just feeling like I want to do nothing but lay down. I go back to Mayo on Thursday for bloodowork and my gyno consult, so if I'm not feeling better by then I will see what they think. Boy I just can't wait to have my pap smear. Yeah.