Wednesday, October 22, 2008

21 tubes of blood on the wall.....

21 tubes of blood.....take one down and pass it around.....2o tubes of blood on the wall. That is no typo.....they took 21 tubes of blood from me yesterday! I talked to many people yesterday....I suppose the most amusing was Dr. Millgillacuddy.

I am not joking....that is his name. You are probably thinking he looks like the classic "nerdy" Doc. You are so wrong! With a name like that you have to be handsome and have a great smile. (Can I think of that about my Transplant Doc?) Let's just say he is easy on the eyes. for the serious stuff!

I'll probably have to break this down into a few segments over the course of the next week. There was a lot of info... I'll start with my first appointment of the morning and go from there.

My first appointment was with the Transplant Doctor at MUSC. Like I said his name is Dr. Millgillacuddy. He asked me a few questions about my health and immediate family's health. He then gave his dialysis vs. transplant speech. The pros and cons and the risks. As with ANY surgery there are risks....of course that scares the heck out of me, but I know I will be in good hands. He talked about the actual surgery and how they hook the new kidney to the two main veins that run down into your leg. I will have three kidneys instead of 2. I know that it is important for me to try and get a live donor....but it really sank in on how important for me at this stage in my life to get a live donor match. *** a side note is that I gave 5 more people's names to the transplant team. 3 of whom are people I don't even know. They are friend's of friends and a coworker of my sister. I cannot express the overwhelming gratitude I have for them.

I found something else Dr. Millgillacuddy said interesting. He said it was very unusual to have someone like me come in before I am on dialysis. Most of the patients they see are on dialysis or have been for quite some time. He also said they prefer to get candidates like me. This is the best scenario for transplant. If your GFR is 20 or below YOU CAN BE PUT ON THE TRANSPLANT LIST! We need to educate patients that have poor kidney function on this. My Nephrologists here at home NEVER suggested this way. I WAS THE ONE THAT INQUIRED. I cannot stress how important it is to make sure you know what is going on with your health. Yes....listen to your Doctors, but it doesn't hurt to question them or be a part of your own solution. Many Doctor's I meet think what is best for the majority of patients is best for you. Not always true. If you can build a good relationship with your Doctors (meaning you listen to their advice and they listen to your advice) it is a win-win situation.

I really have liked everyone I have come in contact with at MUSC. They like questions and they like patient's to be involved with their own health concerns. Maybe it is because they are a teaching university....I don't know. I do know I am comfortable with the staff there and not afraid of asking "why?"

BTW...did any of you catch House last night. The patient had Sjogren's Syndrome. I only caught the last 15 minutes. Was it a good interpretation of the disease?


Pam said...

Vicky, I agreee wholeheartedly about being evaluated before a person gets to dialysis. We were very blessed in the fact that my kidney doctor had me evaluated 11 years ago when my GFR was 24. As a side note this test is a generalized number. Meaning that this number is a generalized broad range and doesnt take in individual factors. My kidney doctor would look at the GFR and then do a calculation based on my weight, age, race and certain other blood/urine test numbers and came up a number that was more accurate. I was told that by law a person couldnt go on the transplant list until there GFR number reached 20 or below. It does not matter which method is used to figure this out. If the generalized number is above 20 chances are the individual's calculated number could be lower and that would qualify them to be put on the list. When my GFR reached 22 the calculated GFR was 17 and I was put on the active list. Hope this helps. To me it is most important as a patient in the confidence I had/have with the transplant team members.

Anonymous said...

This is an awesome first step! If dialysis comes before transplant please, please, please do yourself a huge favor and ask for some education about the process. Like learn about home hemo or PD, or even self cannulation...patients do so much better when they take an active roll in this process!

Best of luck! with getting transplantation and everything else!