"HI sTEVEN, 7-09-2010 WILL BE 3 YRS POST for me. Doing sanfrantastic with the exception of CMV which I'm on and off of frequently. You will be fine as I know a Navy Seal who recieved his transplant due to CF. He is doing awesome !!!!!!!!!!!!!!!!…"
Sharing Knowledge Is An Invaluable Experience
-
Steven
- 22, Male
- Middletown, CT
- United States
- Blog Posts
- Discussions (3)
- Events
- Join Groups (1)
- Photos (1)
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Steven's Page
Latest Activity
"Steven: I just realized I had responded to you many months ago and here I sit now with new lungs! Hopefully you have had tx as well!"
"Hi Steven: i had my bi-lateral tx end of October and waited a year.....also have ab bloodtype and was called in four times, only to be sent home because lungs were not healthy. the fifth time was the charm. My advise is stay…"
John Scags replied to Steven's discussion 'waiting' in the group Lung(s) Transplants"Hi Steven, I'm john I'm 25 and today is actually my 2 month post double lung transplant. It took me 3 yrs to get listed and a bit over 7 months for the call. If you would like to talk more you can Facebook me
John Scagliarini"
Leo replied to Steven's discussion 'advice/help' in the group Lung(s) Transplants"I had an O2 company that had offices through out the country. I had my O2 delivered in Fl, Ga, Tn, Me, Ma, Az, and other states. 6 Mos out my wife and I took an 11,000 Mi trip. Good luck and God bless."
"Hi steven,
just last month I was listening to the local radio station and heard about a young mother in her mid- Thirtys that was in desperate need of a kiddney transplant, well a week later I saw it on the local…"
DebbieK replied to Steven's discussion 'waiting' in the group Lung(s) Transplants"Waiting is to me the hardest part, but in the end it is worth it. Mediation. relaxation therapy, reading, tv, exercise. computer and support groups got me through it. I waited 2 1/2 yrs. for dbl lung tx."
DebbieK replied to Steven's discussion 'advice/help' in the group Lung(s) Transplants"They alow you to bring one person with you on your flight and there will be help to load and unload your belongings. CC also has a low cost guest house for you and a caretaker."
Hostess Risé replied to Steven's discussion 'advice/help' in the group Lung(s) Transplants"Hi Stevie
Did you sign up with COTA?"
DebbieK replied to Steven's discussion 'advice/help' in the group Lung(s) Transplants"As far as your O2 goes, I would recommend getting a portable oxygen concentrator for travel and you can also use it at home. Usually your oxygen provider will provide one for you if you are awaiting transplant. Make sure you have enough batteries…"
cindy replied to Steven's discussion 'advice/help' in the group Lung(s) Transplants"hi Hostess Rise your welcome I wish I could tell him to raise money but thats not as easy but the best way I would say is do they have a restruant or his old highschool ask to put up flyers and a donitions lockbox with a hole for people to give and…"
Hostess Risé replied to Steven's discussion 'advice/help' in the group Lung(s) Transplants"thanks for the support. I am lucky to say that we have a Cleveland Clinic ten minutes from my home.
CC is a great place!"
Hostess Risé replied to Steven's discussion 'advice/help' in the group Lung(s) Transplants"Thank you CINDY! xoxo"
cindy replied to Steven's discussion 'advice/help' in the group Lung(s) Transplants"You could check into angel flight there is 1-800352-4256 I spoke to a Ken Gorden they will sometimes help in this way Iknow its a 800 number but they can set you up with your local I live in florida there a really great bunch of piolet …"
Profile Information
- Were you a member of our Forum on http://TransplantBuddies.com ?
- Yes
- Where did you hear about Transplant Friends?
- Found it online
- Are You Male or Female?
- Male
- Share - which illness lead up to you needing a transplant?
- im a 22 year old male with cystic fibrosis currently awaiting a double lung transplant
- Which Organ(s) did you receive? If you are on the waiting list, please share.
- i need a double lung transplant. And yes i am currently actively listed.
- Drugs, vitamins, favorite foods
- Creon. Albuteral, hypertonic saline, pulmozyme, coliston, pulmicort. voriconizole
- How many years have you had your Transplant for?
- yet to recieve
- I am Interested in Transplant Friends because...
- learn what the actual experience is like. to talk to someone that may be going through the same "struggles" of waiting for "the call"
- Which Transplant Center has or will perform your life saving surgery?
- Brigham and women's Hospital of Boston Mass.
- Share how your transplant experience changed your life?
- yet to recieve.
- Share your interests and hobbies
- i like to be around my family mostly. big collector of fitted baseball hats, and sneakers. i used to love to play soccer and be with friends as much as possible when i was able to do those things.
Steven's Photos
Comment Wall (2 comments)
- At 6:34am on June 27, 2012,
David said… Greetings Steven ! Welcome to our lil world !
- At 8:25pm on June 26, 2012,
Holly said… I sure hope you get your new lungs soon. When I had heart failure I also had a 24/7 horrible, awful choking cough. It made me think how awful it must be to live with cystic fibrosis. When I got my heart transplant all that was gone, gone, gone. I hope the same for you.
I wish you WELL and able to enjoy a long healthy life. Holly (old enough to be your grandmother! )
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