Wednesday, October 21, 2009

Afraid to Say It

Well, appears there is a "plan" which I use loosely for fear another shoe (if there is one) will drop and God forbid something else will change.

So here's the "plan":
Nov. 20th removal with new Urologist-Ideally removing both kidneys. If not, then the left.
Dec. 20th removal of right kidney if not successful on Nov. 20th (HOLY COW-it would appear that this date is incorrect as it is a Sunday! Whenever they pull their heads out-I will update with the correct date!!!)
Dec. 29th transplant ONLY if the Nov. 20th goes off with both removed.
? transplant if two surgeries are needed

We go in on Nov. 16th to meet the new Urologist (4 days prior to surgery), do the pre-op work and meet with the "sleep doc"-no I still don't know how to spell that official word.

Sean's parents are going with us so we have some extra ears. Trying to prevent what happened this week. Although I know that I was diligent in my notes and crystal clear as to the dates the doctor said he was available. You know me asking point blank questions, so ....maybe they misunderstood direct questioning....who the hell knows.

Anyway, we are hopeful that this goes off without a hitch-this new "plan."

Friday, October 16, 2009

Bump in the Road

I guess without a bump in the road you can't enjoy the scenary!

Today, we got some information that took us totally by surprise. With so many doctors managing your care there is bound to be some issues. However, removing the NOT painful kidney-really?!

Sean and I were prepared for both to be removed and have accepted that only one might be. However, for 15 months, the LEFT kidney was to be removed based on that is the one causing the pain. So today when the doctor responded to an email and stated that the RIGHT one will be removed.....we were shocked to say the least. Since we can't get anyone on the phone, we drafted a letter and sent it to ALL of our doctors so all are on the same page and might work to make a decision. After all, the surgery is in 3 weeks!

Hopefully, they get some quick answers to us. This is not the time to be changing things. Of course, better to know now than after they removed the right one (the wrong one in my opinion). Either way....don't feel like waiting for answers. We have little time to switch doctors and get things under way, but it is under consideration at this point.

Thursday, October 15, 2009

Rotary Club

Today, we visited the Rotary Club for their organ donation speaker. A friend's husband is a member of the Rotary Club and saw our piece on the news. He asked if we knew anyone that could speak, so I had my mother in law make a call for me.

It was informative even for me. I learned today that only certain deceased people (brain dead) can be "organ" donors. However, you can be a tissue donor in most cases. I also learned that even though I signed my drivers license as an organ donor I was NOT done. Apparently you have to "register" on line too. So needless to say, I got that taken care of today.

Did anyone know that you can live with one lung? Not I. You can donate the following while living: kidney, lung and part of your liver. Who knew? I had heard about the kidney (of course) and the liver. However, I've never heard of the lung.

Quite informative. I hope that people choose to sign the organ donation card and/or register with your state. Even minors can do this and they recommend that you tell your family about it. They still like the consent of the family when looking into this option. (I asked about the minors b/c my daughter checked her box and it does not appear on her "permit." I was told that if it does not show when she gets her license, to let her know.)

The speaker said something that I thought when I was young. Organ donation is something you don't really consider at a young age. I am happy that I've been enlightened and hope to get information to others so they too might get information on organ donation.

Our online registration is
I am sure there is something in every state. Even if you are in a different state, you can go to this site and get some staggering information/numbers on donors needed vs. donors.

Saturday, October 3, 2009

What do you say?

I just got an email from my assistant principal letting me know that meals will be supplied for us during the kidney removal. She also asked what else we needed and that she didn't want me to say nothing. I'm not sure what we need. Frankly, I can't picture what this is going to look like myself. I'm still trying to determine if I want someone to "sit" with me at the hospital or if I'm supposed to just be a big girl and do it myself. It is a LONG surgery-like 8 hours, so how do you ask someone to sit with you? I don't know when and how the kids will join us and if they will go to school. I can't imagine them sitting at the hospital for 8 hours, but worry they won't be able to focus at school either. I'll likely send them to school though and have them brought to me. Any thoughts on any of it are appreciated.