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Posted 12/7/2007 3:36 AM (GMT 0)
Hello Everyone

Its been a while since I have chated.  We just spend another 4 days in the hospital.  I seem to be able to keep my husbands ammonia level good.  I'm getting better at recognizing the symtems.  His biggest problem now is he is in much worse shape then his number show.  He has lost 60 lbs in 7 months and can barely walk.  He is almost impossible to understand when he talks he's so week.  Vanderbilt has set up his third appointment for 1/16, I had to really push for that  and I'm scared to death he won't make it.  This next appointment is for more test, after which the committee gets together and decides if he can be on the transplant list. Which is a no brainer. At that time if they determine he is much worse then his numbers then we can persue live donor which his youngest sons wants to do.  It seems to me they should be getting his sons tests done now. I have no idea what a live donor entails.   I feel like he won't make it if we don't get moving.  I hope I am over reacting but I don't think so.  Could anyone tell me how I can get him to Vanderbilt sooner so I don't have to wait for Jan 16th.  I fear time is not on our side right now.  Any advise is welcome.  Thankyou

Posted 12/7/2007 6:46 AM (GMT 0)
Since Vanderbilt is a top hospital, I imagine they would have at least one patient advocate there. You might try contacting one and expressing your concerns about not being seen until 01/16. I imagine Vanderbilt books up well in advance, and that 5 weeks away is not so bad. However, if your husband is that weak it would seem that it would be prudent to have him evaluated ASAP, and the testing for live donor to be done quickly. All I really know about that is they need to be the same blood type...I think. (To those who might know: Since O+ is a "universal donor," would it be considered doable if the son were an O+ and the dad is a B+?)

My concern would be that in waiting that long, your husband may become too ill to undergo surgery. However, in the case of transplant, perhaps it would be a plus. Someone who has had one or been the caretaker of a transplant patient can provide more info than I.
Posted 12/7/2007 1:20 PM (GMT 0)

Exhausted, I am not familiar with your husbands case at all so I will just add what I can. If you have a specialist treating your husband now then that DR can call Vanderbilt and speak to someone there directly. A Dr to Dr call is always helpful and usually cuts through the red tape a little. You may want to ask his Dr to do it as soon as possible. I know 5 weeks seems like a lifetime to you but in reality  (medically speaking from the hospitals standpoint) it's not that long. You are correct in assuming that a lot can change in 5 weeks though. I would persue the possibility of his Dr making the call. I also agree with hep93. There may be a patient advocate that is available at Vanderbilt that you can speak to. As far as testing his son-that has to be ordered by Vanderbilt. As far as I know nothing can be done until there is a Doctors order for it. That too takes time. I hope this helped a little.

                               Shelly

Posted 12/7/2007 11:26 PM (GMT 0)
Exhausted, I am sorry that I can't help with any of your questions. I just wanted you to know that I am here, and I am am so sorry that you and your husband are going through this. I will keep you in my prayers.
Posted 12/9/2007 1:57 AM (GMT 0)
The transplant hospital should have a transplant coordinator. It's an RN that coordinates all the testing and appointments that needs to be done for the evaluation. If he has been assigned a coordinator maybe you can talk to him or her. I got my husband's coordinator's email address and sent her updates like once a week letting her know when each test was done and any new symptoms that my husband was experiencing.
Good luck and take care. Thoughts and prayers.............
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