disney1990
<font color=royalblue>Wow, it make my heart skip a
- Joined
- Aug 24, 1999
- Messages
- 10,243
We never met him.
We know his name was Robert.
And he was six months old.
We never met his mother. We'll never know her name. But we're eternally grateful to her.
She gave us a gift we can never repay. We can thank her the only way we know how which is to never, ever forget or take for granted what she so unselfishly gave us.
Our daughter.
(TiggWDW)
Nineteen years ago our daughter was a very sick 6 week old baby. We got the call that a much needed heart was available to save her life.
If anyone is reading this is not an organ donor we beg you to reconsider your decision. Organ donation blesses lives. It doesn't always work. Our road has been anything but easy. But it gives people a chance who desperately need one.
Thank you Robert and your mommy. We know she is remembering this day as we are. We hope where ever she is and whatever she is doing she is happy and blessed.
Update on Laura's condition (5/15/08):
Every year (sometimes more often) Laura has to have a heart cath and biopsy to monitor how she's doing. Yesterday she had that procedure and we didn't get good news. She has something called "antibody mediated rejection". We've been through hard times before and pray that we will be blessed again with a full recovery. We ask for your prayers in her behalf if you are so inclined. Thank you.
Small update pg 7 - #93 (5/17/08)
Update 6/13/08
I decided to update in OP so it would be easy to find. Laura had her biopsy today instead of the 19th as was originally scheduled (doctor had a conflict). We have been hearing for awhile now that it was hard to get "good pieces" on Laura's biopsies. She has had so many during her 19 years that they end up getting a lot of scar tissue instead of healthy pieces that can be analyzed for rejection. On her biopsy a month ago the doctor had a real hard time getting anything usable but he finally was able to. Today he told me he got "a lot of pieces but they were all small and he hoped it was good enough". He also said he told her primary care physicians that they needed to come up with a new way to check Laura for rejection because the biopsies were getting impossible.
Tonight we got the call that all the pieces from today's biopsy were unusable due to being too small. We are very disappointed that today was all for nothing. They said apparently biopsy is not an option for Laura anymore. There is no other good option to detect rejection. So basically we have no way of knowing if the medication they gave her to clear up the rejection of a month ago worked. The Transplant Coordinator is meeting with the adult transplant program next Tuesday to see if they have any suggestions (Laura is still seen at children's hospital at this time). She said she's sure the adult program has patients who can't be biopsied either and she will see how they handle it.
Laura's heart function has always been good when the biopsies come back showing rejection (thank goodness for that). But if now they only go by her heart function how will we know when there is a problem? Or if we wait till her function decreases to assume she is in rejection it seems like it would have reached dangerous levels at that point. Hope all this makes sense. Sorry so long. I just don't know what to do at this point - not that I can do anything but wait and see what comes of Tuesday's meeting. Laura is NOT disappointed that she won't have to have biopsies anymore but she understands its importance at the same time. Thanks to everyone for all your support.
Update October 3rd
A couple of weeks ago Laura started having some mild but daily chest pain. Unfortunately she didn't tell me about it till last Saturday because I imagine she hoped it would stop and she thought I'd "freak out". We saw the doctor this week, went through a lot of tests which almost all looked fine. They want her to have a heart cath next Tuesday but we leave for Florida the following day. So now they are back to talking to the doctor to see if it can wait till we get back. We can always cancel our trip and that's what we'll do if they recommend it. We'd lose about $800 but its only money. We're scared. Please remember her in your prayers.
I know it's a hard decision to donate organs, but your story shows why it is so very important.
You are all amazing.
Hugs and prayers, Liz and Laura. Hopefully this will just be another small bump in the road. 
