After being rejected by Mass General (MGH) my son (26 homozygous for DF508 and colonized with NTM that is not sensitive to macrolides) we are now at Duke hoping they will accept him. Duke seems much more aggressive than MGH. If they list him (please, please, please...) we will have to relocate for a period of time. I am very daunted by this. Does anyone have experience with the relocation? How did you and your caregiver manage? Thanks for any insight.
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Relocating for Transplant
- Thread starter donin
- Start date
believingjesus
Banned
Dear Donin: I don't have any advice on transplants but want you to know I'm thinking of you and your son. I'm sorry you were rejected at Mass General. I know Pittsburgh will do transplants on people that have cepacia and from what I've heard Pittsburgh has an excellent reputation. Seems they have more of a heart at Pittsburgh. I hope it goes well for your son at Duke and he gets the transplant he needs.
believingjesus
Banned
I hope it goes well for your son at Duke. I feel for you and your son especially. I know how much I love my sons and I can't imagine what it is like for you both. I hope he gets accepted at the place that will be the best for him. CF really is hard and I will listen if you or your son needs a friend.
believingjesus
Banned
Dear Donin: Did you find out any news at Duke? I don't know how long the evaluation process is? but I'm sure it's a lot longer than one day! I read that in a post recently that your son was very upset after being rejected at one hospital. I feel for him so much. My son is 25. He and my other son are the lights of my life. I can't even imagine how you feel as his parent and wanting to fix everything and help him. Just keep going forward and fighting as I know you will. You have been through so much more than I have so I really don't know how to help you other than to pray he gets transplanted which I did and I will continue to do. You can PM me anytime you want. I hope it goes well and that you let us know so others can pray for him too.
Hi Donin, anything specific you're wondering about? My oldest daughter and I temporarily relocated for her to be listed for tx. She was in college at the time, we had a house in Texas and our younger daughter in high school. We relocated to the Bay Area for Anná to be listed. It is a scary ordeal. Unfamiliar location and just the two of us. For us, we were lucky enough to have a fellow VFW member offer to let us move in with him and his GF. We ended up moving into an apartment after about 3.5 months. We needed more room but we're so grateful to our friends who not only offered a bedroom and their home but also a car to use. My parents drove my car out to CA and our younger daughter to visit. My husband traveled for his job so that made it easy for him to swing by CA for a short visit. Probably, not the info you're looking for. I guess what I'm trying to say is it's difficult, sometimes complicated but it can be done. You are your sons strength. It was expensive to maintain our home in Texas and a place to live in Northern California. My family did a fund raiser for us, as did our VFW? We were out there a total of 9 months before she was released to return home. Depending on where they require you to be, there are potentially many smaller town around the Raleigh Durham area to move to. Please, if there is anything specific your wondering about, just ask. My husbands family is from the Wilmington area and we are a bit familiar with the area. Duke is where our daughters were diagnosed. We were stationed in Goldsboro at the time. Good luck on your sons evaluation and I pray he is determined a good candidate and they agree to list him.
believingjesus
Banned
Dear Donin: Remembering you guys, I hope his evaluation is going well and he gets accepted.
believingjesus
Banned
Donin: Is everything going well with your sons evaluation? I want you to know we are thinking of you and your son. I hope he stays encouraged and knows we are praying for him and you.
D
daniela.l
Guest
Donin,
I have not had any experience with relocating, but I do have some with transplant. It is important and convenient that you and your son stay close to the transplant facility before AND after transplant. Firstly, the evaluation process is lengthy what with CT scans, blood work, X Rays, heart catheterization, etc. After the transplant (hoping it is very soon) this is where it is HIGHLY important you guys stay as close as you can to the facility. The recovery process will be lengthy and bronchoscopies will be frequent. Also, it if better to be near the doctors in case they need to run some blood tests or just to check up on him. Hope for the best for you and your son!
Daniela
catchingyourbreaths.wordpress.com
I have not had any experience with relocating, but I do have some with transplant. It is important and convenient that you and your son stay close to the transplant facility before AND after transplant. Firstly, the evaluation process is lengthy what with CT scans, blood work, X Rays, heart catheterization, etc. After the transplant (hoping it is very soon) this is where it is HIGHLY important you guys stay as close as you can to the facility. The recovery process will be lengthy and bronchoscopies will be frequent. Also, it if better to be near the doctors in case they need to run some blood tests or just to check up on him. Hope for the best for you and your son!
Daniela
catchingyourbreaths.wordpress.com
kittencaitlin
New member
Hi, Not sure if you found out a place for your son to get tx'd yet - i hope so! I am from Boston and have relocated to Pitt while I wait for my tx at UPMC. I know this thread is a month or so old, but let me know if you would like any information. Happy to help.
Caitlin
Caitlin