|
|
Post by merryfl on Apr 20, 2008 19:16:41 GMT -5
We live in Port Charlotte FL, which is about 100 miles south of Tampa. We own property in Jasper (about 300 miles north of here) which is where we plan to retire. I would then be closer to Gainesville (Shands Hospital).
2 years ago my Pulmo said it was time to be evaluated for TX. I preferred going to Gainesville due to proximity to family for support before and after, so we decided it was time to move. As soon as we put our house on the market, the bottom fell out. We couldn't give our house away (and can't afford to move without selling it).
So, I got in touch with Tampa General. They sent for my records from Pulmo and saw in his notes that we planned to move. They immediately rejected me as a candidate for their program. They insist on a firm commitment to stay within 2 hours of them until transplant and for 1 year after. They would not even consider letting me begin with them and then transferring to Gainesville if we were able to sell the house. They would not even talk to me any more. End of discussion.
So, that's where I am. I am hoping Shands will be a little more flexible since we are currently about 3½ hours from them. My lung function is currently about 16%, so I have to do something soon or it will be too late. I do not qualify for LVRS.
Any suggestions are welcome ;D
|
|
|
|
Post by pennypa on Apr 20, 2008 21:27:50 GMT -5
I don't know of any TX hospital that will forego that rule. I know you have to be within 2 hours both pre TX (as soon as you're listed) and post TX (for a certain amount of time). When they get a lung for you, there's no dancing around...you've got to get to the hospital...and I think the 2 hours is basically the length of time a lung is viable 'cause you've also go to factor in the surgery time.
If you definitely want it done at Shands, sell your house and move. A loss on the house is nothing compared to a loss when it comes to missing a TX!!
|
|
|
|
Post by merryfl on Apr 21, 2008 5:27:06 GMT -5
Penny, I understand what you are saying, but houses are just not selling, period. We can't make 2 house payments, so have to get rid of this one. We are talking about renting this one out, but there are so many vacant houses here that are bank-owned, even finding a renter is tough. We're stuck between the proverbial rock and a hard place, cause the money will only stretch so far.
Colleen thinks some hospital stretch the distance due to the ready availability of angel-flights. We'll see what Shands has to say, then try again to make a decision.
|
|
|
|
Post by Colleen-NC on Apr 21, 2008 6:39:24 GMT -5
Merry, have you thought of not selling and staying where you are until after transplant? If you tell them that your not moving now because of the housing market perhaps they would see you. After transplant is over and your through rehab then put the house back on the market and hopefully sell. Maybe by then the Real Estate market will be better. I would call the Transplant Department and see what they suggest, and tell your pulmo to take that note out of your file !!
|
|
|
|
Post by roadtrip on Apr 21, 2008 7:58:15 GMT -5
Merry,
My girlfriend had a heart transplant at Shands. Their transplant program is stellar. You would not even know my friend had a transplant. She is living a very active life and doing wonderful.
She lived in Apopka, FL and had to travel to Shands. Her heart was failing rapidly so she was living at Shands prior to her transplant. Her waiting time was about 4 months - pretty darn short.
Their team is wonderful. Good luck to you.
|
|
|
|
Post by blondie on Apr 21, 2008 8:55:01 GMT -5
Merry, I was going to suggest what Colleen posted. I think that may be the best route to take for now. You can't wait til you sell your house to do this. The housing mkt is terrible right now if you are trying to sell.
Or maybe you could go to the area around Shands and rent a small apt til the tx came through. Maybe you would be lucky enough to rent your house out or you could check up on it every couple of weeks. Wish I had a better suggestion.
Pat
|
|
|
|
Post by merryfl on Apr 21, 2008 10:07:13 GMT -5
Well, you could blow me over with a feather! I just had a call from Shands in response to my e-mail. They were so nice! Asked me to get my doc's office to call so they could start the paperwork ASAP. Distance is not a problem. We will, of course, have to drive up for appointments, but when organ becomes available Angel-Flight will handle everything. She said they have patients as far away as the Keys. It's amazing the difference between programs. I am so thrilled right now, I can't sit still. Doc's sec'y said she would get started today and will call me back as soon as she speaks to Shands to keep me updated. Shands said I will hear from them within a couple of weeks to start setting up appointments, etc. Happy Dance!  All my worrying and putting off calling because I made assumptions......Shame on me! |
|
|
|
Post by blondie on Apr 21, 2008 10:15:02 GMT -5
Merry, I am so happy for you. Everything always seems to work out no matter how much we fret about it. Please share with us as much as you would like. Pat
p.s. I love your little elf girls..cute as heck:)
|
|
Toni
Full Member
Posts: 236
|
Post by Toni on Apr 21, 2008 10:15:51 GMT -5
Wonderful news Merry, gosh - really great news!!! Thanks for telling us so quickly!
|
|
|
|
Post by Colleen-NC on Apr 21, 2008 10:32:10 GMT -5
Merry, I am so happy for you. Most hospitals are very accommodating so I was kinda shocked that Tampa wouldn't work with you. I knew Angel Flight helps with lots of transplants. All these pilots give their time for free. Its an awesome program. I am wishing you the best of luck with your journey. I had a link to Angel Flights, I will try to find it for you. I am at work right now so I will look when I get home. If I could dance, I'd do the happy dance for you LOL!!
|
|
|
|
Post by joann on Apr 21, 2008 11:07:39 GMT -5
Fantastic news Merry, so happy for you. What a way to start your week!!!  |
|
|
|
Post by Toby on Apr 21, 2008 12:47:06 GMT -5
Merry that is absolutely fantastic! Good luck and keep us updated on how everything is progressing.
|
|
|
|
Post by sue on Apr 21, 2008 17:29:41 GMT -5
Great news Merry!
|
|
|
|
Post by roadtrip on Apr 21, 2008 17:58:59 GMT -5
I am thrilled for you. You will love the entire transplant team. They are so incredibly dedicated. This is such great news! I'm excited for you.
|
|
|
|
Post by kenaz on Apr 27, 2008 15:30:11 GMT -5
That is kind of odd that the hospital dropped you for being that short distance away. If I remember right, when I was evaluated in San Diego I live in Phoenix which is 5 hrs. They said I could make arrangements with mercy flight to transport me. I would only need to stay in Diego for 6 months after TX. That is what I remember but I have been known to be wrong before.
Blessings and better breathing, Ken
|
|
|
|
Post by pennypa on Apr 27, 2008 17:11:12 GMT -5
Ken, did your insurance pay for those 6 months you had to stay in San Diego after the TX? I know there are people up here (Duke) who have been here for maybe 2 months prior to and then the long time afterwards and their insurance pays for the apt. and meals!! Good deal!
|
|
|
|
Post by merryfl on Apr 28, 2008 17:48:55 GMT -5
Ken-I don't know why they were so adamant about where I lived. I believe there was a communication problem/breakdown somewhere along the way. The woman I spoke with basically said "People move here from all over the country to be in our program, and they don't want to move away." I did not have a good experience with them and am not sure just what caused the problem. All I know for sure is that when I spoke to Gainesville, I felt welcomed -- not like I was being a bother. And I guess that's all that matters.
|
|
