First, lungs. Well, I had an interesting call last week, that I have had to take time to digest. My transplant coordinator from USC called. He, another nurse and the social worker were in the room with me on speaker phone. They wanted to talk to me about living donor transplant. They are worried about my bleeding and they don't want me to have any more embolization surgeries as they are so risky. As I've talked about, each time I go in I risk paralyzation, stroke, numbness, or chronic pain. Also, all the extra veins and arteries growing into my lungs, makes the transplant harder. Also as I have said, with my blood type and size, it will be a long wait till a cadaver comes available. So they are worried and told me it might be a good idea to start looking for donors.
That scared me and I had to wait a while to think. Then I emailed my wonderful cousin Darrell about my situation and ultimately asked him if he would consider donating a lobe. He was willing to talk about it and help if he could. So I called and he was actually excited about helping me. He had talked to a doctor friend of his and gathered a little information, but to no avail. He is the wrong blood type. Thanks anyway Darrell, I thank you for wanting to help!
So while I have one potential donor (my best friends daughter) I need to line up several more to be tested as I don't even know if she will work out. So here is what I need.
O+ blood type. No smoking, or having not smoked for a lot of years. Under the age of 55.
5'10" or taller. They said look at tall males, but my friends daughter is 5'11 so it doesn't have to be male.
I feel really weird and awkward asking everyone, but it seems a lot of people read this and maybe someone will know someone who fits the bill and would want to be tested as a donor.
I know some people want no part of it! and that is ok! I have no problem with people not wanting to donate. But some people know people who would love to help, but I can't think of who they are, so maybe they'll write to me. My email is cutecarols@gmail.com
On a good note, they said my antigens are 0, so my chance of rejection is really low! Yahoo, one good news.
Now lobe donors, line up! hee ehee
As for my weekend, Kelly and I went to Michelle's in Arizona. We had a really nice time. I went out shopping a little bit (only a little cuz there isn't much there) and out to eat. The wind was blowing so hard I had to cover my nose so that I could breathe in my 02. I was so tired by the end of the day, but it was nice. We got there late Friday, leaving after Kelly got off work and then left Sunday after I got ready, so we really only had Saturday to play around. Kelly went to play craps on Saturday night. He actually doubled his money! Yipee. Kelly and I like road trips and being together so it was nice. The drive, not so nice. Lots of traffic. I feel sorry for people who live in the high desert and have to do that commute every day. yikes!
So that's it for me. Contemplating not making it to transplant, having to ask people for a body part just in case, hoping I don't bleed any more before a cadaveric transplant...and going to cut quilt parts at my sisters tomorrow night. That will be a blog in itself!
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Cold Hard Facts:
Stats:
- 20 People with O+ are on the Tx list in our Region.
- USC Lung Tx List for O+ Score 35-40 = 3
- USC Lung Tx List for O+ Score 40-50 = 3
- UCLA Lung Tx List for O+ Score 35-40 = 3
- UCLA Lung Tx List for O+ Score 40-50 = 4
- Ceders Lung Tx List for O+ Score 35-40 = 1
- Number of O+ Lung Tx for our Region conducted 2006 = 13
- Number of O+ Lung Tx for USC conducted 2006 = 1
- Number who died waiting for Tx with CF in 2006 = 4
- Number of CF w/ O+ who died waiting for Tx in 2006 = 3
#1Fan (who is B-)
Hang in there Hun.
Just because people haven't commented doesn't mean no one is going to help you. We got Liz (crossing fingers) for one side, now we just need to find the other side. At lest with a live donor we can feel a little more in control over things. We can pick the right time that will work for everyone rather than waiting.
The numbers don't look good for cadaver donation. USC only did one O+ Tx for all of 2006. They also have over 90 people on the wait list between 1 and 5 years.
Anyway, I just wanted to post something.
Dear Cousin,
Just visited your blog after not having seen it for a few days --
My oh my, you and Kelly have entered some sobering (and yet,hopeful) blog/comments ... I almost fit the bill, except for the height requirement. I'm glad you have a "potential" with your friend's daughter; and yet, I know that it would be optimal to have some other folks lined up, just in case she's unable to be a donor. I hope that by putting this out there, that the good word will get around and you'll have the life-support you need. My fingers, toes, legs, arms and eyeballs are all crossed for you ...
Love, love, love, Kim
Hi Carol,
Sorry, haven't seen this blog either. Height requirement lets out most people in the family, also age (we're all old!). As with Kim, I'm crossing everything I can think of, hoping someone is out there who can help you. Maybe the person who can help you will make the decision to do so. I sincerely hope so.
Cousin Merle
Hey Miss Carol,
For the first time in my life I wish I were taller. Alas, it is not so. However, I have sent out an email to all the nice people in my address book, so hopefully somebody will be O+ *and* tall enough.
Love ya,
Shan :+)
Hi Carol
I have been thinking if the newspaper were to do a story on you maybe it would get the word out to people and someone would be interested in helping. Also if someone lost a family member, the story might be in their minds and they might want to donate that way. Just a thought. Hope you are feeling well and that the sunshine (but not heat) is making you feel warm and healthy.
Love,
Carrie
Dennis said that he was watching the Ellen show about a year ago and she had a 12 year old girl with CF on and they were remarking about how OLD she was and Ellen wa very interested in her story. I will look up her web site and see if I can e-mail and generate some interest there. Maybe you can go to Hollywood!
Well USC is tops in the Living lobar transplant area!I am glad they are finally talking live donor transplant. You are always in our thoughts.
Mike&Sandra
By the way, do you know about the 65 roses Basket & Brunch Fashion show on the 18th of March? If you want more info you can call (562)694-5457.
Mike
Here is a site with huge Information On Pregnancy Diseases And Genetic Testing. You can find information regarding Cystic fibrosis disease in:
http://www.geneticsofpregnancy.com/Encyclopedia/Cystic_fibrosis.aspx?pid=15
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