waiting

hello my name is steven i am from the US and i am currently awainting a double lung transplant. i have cystic fibrosis. my blood type is rare, im (ab) and i've been listed for 6 months and 25 days. would like to talk to someone that can relate to what im going through. hope to hear from someone soon.

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Permalink Reply by Dennis on June 27, 2012 at 5:14pm

Hi Steven, I too am waiting for a bilaterial lung transplant. But unlike you I have Cronic Obstructive Pulmanary Desease (COPD) , My Blood type is "O" and have been waiting going on 27 months so far... I am in fair health so that is one reason why I have been waiting so long. I am trying to get listed at UPMC also as being "double-listed" might give me a shorter wait time. try and stay as positive as you can ( I know this is hard) and try to remain active if you can . Take care and I hope you get your call soon

Permalink Reply by Kathleen on June 27, 2012 at 8:59pm

Hi Dennis...wow! waiting for 27 months....gulp. You truly are a patient man. I too am waiting and hoping for "the call" and you can see my response to Steven. Hope you get your call soon.

Permalink Reply by Kathleen on June 27, 2012 at 8:56pm

Hi Steven: I too am awaiting double lung transplant and coincidentally am also ab bloodtype so yes, I can really relate to you! I have been listed for 5 months and have already been called twice, only to be sent home both times because lungs were not good. These "trial runs" have been very emotionally draining experiences, but I suppose I am glad I didn't get bad lungs ( I already have those :) ........ I hope you are trying to stay healthy and strong. I go to therapy 3 times a week and do cardio as well as other physical therapy excercises. It is all very scary but scarier to think of the outcome if we do not get tx. What hospital do you go to? Do they have support group? I go to HUP (Hospital University Pennsylvania) and we do have a support group that meets once a month. I have also spoken to other post transplant patients and found that helpful. This forum is also good for that! Can't say I have a lot of answers but do want to tell you keep up your faith, don't lose your sense of humor.....do excercise and stay positive! Hope you get your call soon!

Permalink Reply by Steven on June 27, 2012 at 9:48pm

thankyou for the reply kathleen. Im actually am listed at birgham and womens in Boston Mass. I just have had one call (dry run) it was a huge let down. but all i could do is keep fighting and hope the call comes again soon. i do pt twice a week. but do not participate in a support group. i have a huge family and feel i have all the support i could ask for. and after finding this website and being able to talk to a few people that are going through the same things as i am. it feels even better. i also have cystic fibrosis. thats why i am in need of a double lung tx.

Permalink Reply by Ltl Lof on June 28, 2012 at 12:58am

Steven - I would highly recommend you look for a local lung transplant group in your area, whether it is a formal meeting sponsored by your transplant team - or if you just collect a few you meet in rehab. I, too, have a large family and they have been fantastic --- but they cannot connect on the same level you would really appreciate! I have so enjoyed the people I have met that went before me and those who are getting listed now. Of course, we are here for you, too - but there is something so very special about the folks you meet at rehab, or in the waiting room at "clinic"! And don't forget your desigated caregiver. My honey has really appreciated having people he could call with questions - or maybe just bitch. And it is OK. I am almost 8 months out and have had a pretty good experience - but Carl will still be going to his caregiver support meeting tomorrow. He continues to learn and he is now a great resource for those coming along, too. It might be great for you to meet other Cystic fibrosis listees, but not necessary for your own support group. By the time we need new lungs it doesn't matter so much the condition that got us there. We are all in the same club and the experience of the transplant is our universal connection. Of course, we are all here for you --- and for each other --- too. You'll get answers, find more questions to ask, and hopefully feel very "at home".

Permalink Reply by Hostess Risé on June 30, 2012 at 8:19am

Thank you so much Ltl Lof for your support to Steven

Great advice! HUGS!

YES we are one big family!

Permalink Reply by Rosemary on June 29, 2012 at 11:42am

Hi Steven;

If it's any consolation to you, I've been waiting for 3 1/2 yrs for my double lung transplant. So I can definetly relate. My blood type is A, so I don't think that's the problem. All I can tell you is to take each day as it comes. The fact that you're still waiting only means that your lungs haven't deteriorated any further, which is good. I know it's nerve wrecking, but I'm told, the longer your wait, the better off you'll be post transplant.

Also, I have COPD with a touch of cystic fibrosis, so my progression is much slower than yours. Hang in there, and good luck to you

Permalink Reply by Hostess Risé on June 30, 2012 at 8:17am

Hi Steven,

Thank you for creating a discussion. Glad to see a big turnout. Remember you can always write to me with

any questions

Hostess Rise'

double lung transplant 05

Permalink Reply by DebbieK on August 10, 2012 at 7:22pm

Waiting is to me was 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.

Permalink Reply by John Scags on January 23, 2013 at 10:08pm

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

Permalink Reply by Kathleen on January 24, 2013 at 7:50pm

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 positive, try to keep your sense of humour, do excercise as much as possible and have a lot of faith. Stay busy and live every day to its fullest. what city are you in?

Permalink Reply by Kathleen on January 24, 2013 at 7:53pm

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!