<a target=new class=ftalternatingbarlinklarge href="http://www.save-allan.org/wpblog">Read my newest health update at my blog</a> (specifically, <a target=new class=ftalternatingbarlinklarge href="http://www.save-allan.org/wpblog/?p=12">entry #12</a>). It covers my second denial (of that transplant) by Medicaid and minor, miscellaneous stuff that I added for basically no reason. And lemme know what you think. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Update on my precarious state of health (08-25-2005)
- Thread starter WinAce
- Start date
I read your latest update and just have to say I wish that I could do something to help you in some way. I was looking at the Boomer Esiason website and it has a link to transplant grant or something to that effect. I didn't really see what the qualifications and stuff were but it may be something that you want to look into. the website is <a target=new class=ftalternatingbarlinklarge href="http://esiason.org/newsResourcesTrans.html.">http://esiason.org/newsResourcesTrans.html.</a> Hopefully it can help you in some way. As for stupid movies since you were talking about the burger one have you seen Napolean Dynamite. I highly recommend it. Just remember when watching that I did say stupid movies. There is absolutely no plot but I was laughing so hard that I nearly peed my pants. Then coughing besides from all of the laughing. Good Luck.
Emilee
Emilee
lovingBenandCambree
New member
I wasn't logged in before but that was me.
Emilee
Emilee
Allan - So very sorry to hear Medicare is still rejecting your tx. Hope you have further appeals at your disposal. I also hope you are out of the hospital soon.
Please correct your web site -- Greg never applied to any other hospital (specifically UNC) regarding tx, other than Methodist. During our initial interview with the tx team, we inquired about the added complications of cepacia, and their position has remained the same. It is not something they would reject Greg for. They have had, if I am remembering correctly, one other cepacia patient, and that patient is faring well. They said they believe if cepacia is managed well pre-tx, it will be managed well post-tx. This was not some formal statement of their policy, just a doctor-patient (and patient's wife) conversation. Greg has basically no other negative issues (He has mild osteoporosis, which is being treated with medication), and I know his overall health is a big blessing and plus -- which we continue to thank God for. (Sorry if I confused you or anyone -- Greg's insurance is private, but managed by the state legislature -- a high risk pool -- so relocating to an out of state tx center is not an option we even considered to try to pursue for a number of reasons).
All my information on the prospects and complications of tx with cepacia come from what I have read and researched on the web, and it is depressing. All my information about those personally with cepacia being rejected or having poor outcomes come from my web friends (like you!) and the couple of CF boards I participate in, and news articles that have been forwarded to me.
Thanks for giving Greg a heads up on your site - we hope his story is an encouragement to all cf'ers and their loved ones.
Take care, Allen. I absolutely know how frustrating this whole situation is for you. Write me anytime. Greg's doing iv's right now, too, after being desensitized (and still developing a rash!)
Best wishes, jan
(Wife of Greg, 45 cf'er w/cepacia at top of tx list)
www.standinginthegap4greg.org
Please correct your web site -- Greg never applied to any other hospital (specifically UNC) regarding tx, other than Methodist. During our initial interview with the tx team, we inquired about the added complications of cepacia, and their position has remained the same. It is not something they would reject Greg for. They have had, if I am remembering correctly, one other cepacia patient, and that patient is faring well. They said they believe if cepacia is managed well pre-tx, it will be managed well post-tx. This was not some formal statement of their policy, just a doctor-patient (and patient's wife) conversation. Greg has basically no other negative issues (He has mild osteoporosis, which is being treated with medication), and I know his overall health is a big blessing and plus -- which we continue to thank God for. (Sorry if I confused you or anyone -- Greg's insurance is private, but managed by the state legislature -- a high risk pool -- so relocating to an out of state tx center is not an option we even considered to try to pursue for a number of reasons).
All my information on the prospects and complications of tx with cepacia come from what I have read and researched on the web, and it is depressing. All my information about those personally with cepacia being rejected or having poor outcomes come from my web friends (like you!) and the couple of CF boards I participate in, and news articles that have been forwarded to me.
Thanks for giving Greg a heads up on your site - we hope his story is an encouragement to all cf'ers and their loved ones.
Take care, Allen. I absolutely know how frustrating this whole situation is for you. Write me anytime. Greg's doing iv's right now, too, after being desensitized (and still developing a rash!)
Best wishes, jan
(Wife of Greg, 45 cf'er w/cepacia at top of tx list)
www.standinginthegap4greg.org
Allan - just read your latest postings on your web site. What a nightmare your last hospital stay was! Sometimes you can just tell when everything is going to go wrong during a particular stay and the best thing you can do is just leave! Is there really a way to 'speed up' cepacia cultures? I just thought they grew slow in the petrie dish. - jan
Whoops. I did my best to correct that entry, up to quoting your clarification. Sorry 'bout that. Hope that Methodist hospital gets even more success with Greg; maybe they'll start competing with UNC and giving us cepacia-colonized people another option. Good thing Greg's okay otherwise, it might just be the thing to make up for that one, nasty handicap this germ gives us.
And yeah, that last stay was about one of the worst I've ever had. It seemed that everything that <i>could</i> go wrong, did go wrong. Antibiotics not working, incompetent blood test-takers, unusually belligerent (in their defense, probably stressed out) staff... ugh. I hope that never happens again, but I wouldn't bet on it.
Thanks for the movie recommendation, Emilee. Napoleon Dynamite is gonna be next on our list.
And yeah, that last stay was about one of the worst I've ever had. It seemed that everything that <i>could</i> go wrong, did go wrong. Antibiotics not working, incompetent blood test-takers, unusually belligerent (in their defense, probably stressed out) staff... ugh. I hope that never happens again, but I wouldn't bet on it.
Thanks for the movie recommendation, Emilee. Napoleon Dynamite is gonna be next on our list.
I looked (and have looked before) but I really doubt they'd foot even a significant fraction of such a huge medical bill. I wouldn't blame them, either, because if you could give a month's supply of Pulmozyme to 500 needy CF patients, or a lung transplant (that might not even work) to one... I might apply for one anyway, later, in case they'd toss a few bucks my way and make fundraising easier.