Anyone Have A Lung Transplant?

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VMN162802
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 12/29/2008 10:01 AM (GMT -7)   
Has anyone had a lung transplant yet? I'm on the list awaiting my turn and don't know what to expect. Can someone give me some ideas on what to expect before and after. I'm REALLY scared but very EXCITED!!! I'm not sure how to tell my kids when they call either.
 
Thanks
 
Vickie
I am 33 years old and was just diagnosed 6 years ago. I have two boys Michael who is 13 and Nathan who is 10. I'd love to meet some new people in the same boat I'm in and make new friends. Please feel free to write me anytime!!!
 
Vic
 
Meds: Zithromax, Cymbalta, Centrum, Calcium, Vit.D, Aquadeks, Lisinopril, Trazadone, Doxycycline, Augmentine, Bactrum, Avelox, Vit.C, Ibprofen, Furosimide, Cephalexine, Pulmazyme, Albuertol, Flonase, and finally Advair.
 
Lung capacity is 19%, O2 365 days a year.


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 12/29/2008 3:12 PM (GMT -7)   
Hi there,
 
I cant give a whole lot of advice on this, having never had a transplant myself.
I have had 2 friends who have had transplants and survived and are doing incredibly well with there lives. There has been a lot of advertising in the UK about organ donation, simply because those 2 people have decided to live there lives now, creating help for other people. They have made a charity to provide support and information to those on the list, or just wantng to know more about it.
 
I have also had a friend who died before transplant as she decided she was too scared of the aftercare. It was a heartbreaking decision for all of us. But it proves how tough it is, as I know more than anythng that she wanted to carry on living. She just didn't want any more trauma to go through.
 
I have grown up knowing that one day I'll definately need a transplant, but even knowing has not got me in the sligtest bit prepared. The thought of it still scares me, even though I have my 2 friends who are alive thanks to the gift of life. There is that fear, but then also the excitement that you're going to feel well for the first time since you can remember. It will no longer feel like a cheesegrater going up a down your lungs when you cough.
 
Transplant brings with it its own set of medication and trouble. But, not as much as CF causes.
 
See, transplant talk makes me babble lots, because I'm not that sure myself either. I guess one day I'm going to just have to deal with it. I probably will easily enough.
 
Have a look here:
This is a site with a forum specifically for while you are on the list. On it, are people who are going through the wait themselves and also those who have had a transplant and are there to give there experiances. It is ran by the people I know who have had a transplant, and they're a friendly bunch to my knowledge (not actualy used the forums myself yet.)
 
 
This isn't meant as a post to send you to them. But more info for you, so you have a wider access to support, while you're going through a difficult, scarey and exciting journey.
 
All the best
Gemma
Moderator of the Cystic Fibrosis Forums
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shawn post tx
New Member


Date Joined Dec 2008
Total Posts : 2
   Posted 12/31/2008 1:17 PM (GMT -7)   
Hi Vickie i have had a lung tx My name is Shawn I am 35 I had Tx on 11/27/08 My FEV was 21 % I was on O2 24/7 .   6 liters I could not keep 89-90% on my O2 stat .  Please excuse my lack of computer skills for I am a plumber so my computer skills and my medical language is limited.             I was listed for tx for 16 hours (ya 16 hrs.) so I really didnt have the normal time to freak out or even get ready to go .  One day I got the call that my insurance co. said I was covered  and i was listed the next day --Thankgiving (i know thanksgiving ironic) I got the call at 8am I was cooking breakfast the Dr says we have lungs for you . So I said to him ya right whos this? I thought it was a friend messing with me. He said this is Dr Camp we have lungs for you. I said WOW Ill take them. next thing I know Im in the hosp. Brigham and Womans in Boston . I live outside of Boston so it only took 20 minutes for me to get there. I only had a problem with my lungs . I never had digestive issues or any other problems. I have been out of the hospital now for one month and i feel great my FEV is 61% and rising I would do it again in a secound. I started at Mass general I did alot of my work up there but I did not have a good feeling about my dr. I got a secound opinion at B&W I liked the dr there much better.  I kept saying to my self I would not buy a car from the first dealer why trust my life to the first dr . even if the hospital is suppost to be on of the best. I could go on and on but im not sure I am answering the questions that you have. yeah yeah

VMN162802
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 1/1/2009 3:58 PM (GMT -7)   
 
Dear Shawn:  Thanks for taking the time to write to me - it's nice to talk to someone who is in the same position and knows what it's like to go through this.  You did answer some of my questions.  I do have a couple of more for you.  How did it feel when you woke up and you were on the ventilator?  Was it scary?  Did it feel strange?  How does it feel now to have lungs that work?  I to am on oxygen 24/7 at 4 liters and it's still hard to breathe.  My FEV's are at 19% and it's a struggle just to walk from room to room.  It's amazing how fast they found lungs for you.  I have been on the list since the beginning of December but since I'm so small (5', 120 lbs.) I need lungs from someone small.  My biggest regret about this whole thing is that some parent will have to lose their child for me to live - where is the justice in that?  Are you married?  If yes, how does your spouse cope with it?  I was married but my spouse couldn't handle it and walked out on me - but that's okay, it made me stronger for my two boys (13 and 10).  I hear your area of the world is really beautiful - never been there but maybe some day.  Don't worry about your computer skills because mine suck too.  I hunt and peck.  Hope I didn't babble on too much.  Hope to hear from you again.  TAKE CARE AND GOD BLESS!!!!
Vickie      smilewinkgrin
I am 33 years old and was just diagnosed 6 years ago. I have two boys Michael who is 13 and Nathan who is 10. I'd love to meet some new people in the same boat I'm in and make new friends. Please feel free to write me anytime!!!
 
Vic
 
Meds: Zithromax, Cymbalta, Centrum, Calcium, Vit.D, Aquadeks, Lisinopril, Trazadone, Doxycycline, Augmentine, Bactrum, Avelox, Vit.C, Ibprofen, Furosimide, Cephalexine, Pulmazyme, Albuertol, Flonase, and finally Advair.
 
Diagnoses: CF, Bronchitis, Pneumonia, Cardiomyopathy
 
Lung capacity is 19%, O2 365 days a year.


Jodi jp
New Member


Date Joined Apr 2005
Total Posts : 11
   Posted 1/4/2009 6:51 PM (GMT -7)   
Shawn??? As in Tina's Shawn?? YOU are the man!!! smilewinkgrin

Sorry to hijack your thread VMN162802. But I can tell you, after reading Tina's blog, that he has the BEST, most understanding wife who loves him to death. Shawn, I sure hope you know how lucky you are to have such a supportive, loving partner in your life and CF journey, WOWZER!

Vickie, I'm 53 and not on the tx list, but I know it's down the road for me. I too am 5'0, 115-120, so I know my best bet is probably lungs from a teen or older child, UGH!

Like you I also had my first husband head for the hills when CF started problems. shakehead
But after 5 single parent years, I met my current husband who is very supportive after 18 years. smilewinkgrin
So don't give up hope in that area.

You might also check out the forums on http://transplantbuddies.com/
There are quite a few of CFers there, pre and post tx.

I wish you all the best.
Hope your lungs come soon.
God Bless,
Jodi
53, married, mother to 3, Grandma to 2 :)


VMN162802
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 1/5/2009 5:07 PM (GMT -7)   

 

Dear Jodi-

 Thank you for your letter. I am really glad to hear from people in my boat!! Did they find your CF as a child? I was 27 and VERY SHOCKED. I was always told it was bronchitis or pnemonia. When they first told me I didn't know what to do or where to go. After I started getting sicker and needed O2 and more meds. and ALL that great stuff, my ex walked out. But that's all good now, I have two WONDERFUL boys who support me and help me out when needed. My oldest is 13 and youngest headed for 11. They are excited for me because they want me to be able to run and do things with them.

I'm glad that you found such a great husband. I decided to go back to the father of my kids, on and off for 19 years, thought he'd understand and be the BIGGEST supporter of them all but just told me he's leaving after my surgery. So another hits the road. Maybe I should write a song about it! (HAHA)

You know I was just at the Clinic today, yeah I live in the Cleve. area, and I met a lady who is 46 and going for her SECOND transplant. She is 10 years out but caught pneumonia and started to reject. She also told me about the transplant buddies. That's twice in one day so I'm going to check it out!!! Sorry if I'm babbling but it is so nice to hear about ADULTS having this. At first it seemed like all I heard about were young kids and it was depressing!! I know how you feel about needing small lungs, this is REALLY upsetting me.

Okay, I'm really going to stop talking now! Please responed if I haven't driven you crazy. Please take care of yourself and again THANK YOU for your time

Vickie


I am 33 years old and was just diagnosed 6 years ago. I have two boys Michael who is 13 and Nathan who is 10. I'd love to meet some new people in the same boat I'm in and make new friends. Please feel free to write me anytime!!!
 
Vic
 
Meds: Zithromax, Cymbalta, Centrum, Calcium, Vit.D, Aquadeks, Lisinopril, Trazadone, Doxycycline, Augmentine, Bactrum, Avelox, Vit.C, Ibprofen, Furosimide, Cephalexine, Pulmazyme, Albuertol, Flonase, and finally Advair.
 
Diagnoses: CF, Bronchitis, Pneumonia, Cardiomyopathy
 
Lung capacity is 19%, O2 365 days a year.


Jodi jp
New Member


Date Joined Apr 2005
Total Posts : 11
   Posted 1/5/2009 8:40 PM (GMT -7)   
Hi Vic, :-)

I was Dx @ 25 after my second child was born. (Child, HA he is now 27). Had a REALLY bad pregnancy, ended up with pneumonia that just wouldn't go away, and finally the doc gave me a sweat test as a last resort to figure out what was wrong with me. I was always told my whole life, "you have asthma, severe allergies" had 5 sinus surgeries in my teen years, growing polyps like weeds. I always had a chronic cough and caught things easily.

I have always been PS so I never took enzymes until just this last year after a bout with pancreatitus. I became CFRD @28, insulin dependent. My lung involvement really didn't kick into high gear until my early forties. From 25-40, I was pretty healthy, worked, raised my kids, stayed active and busy. CF was more of an annoyance when I'd get a cold, I'd always end up on ABX, but orals did the trick until I caught MAC in 1999. That sucker just about did me in. Had most of my left lung removed in 2000, and been on a steady decline since. My FEV1 sits around 50, give or take. But I did eradicate the MAC after 2 years of intense ABX, and haven't cultured positive since 2000. *knock on wood*

There are many older CFers, in their 40s, 50s and I even know a few in their 60s. I think I know about 15 that are older than 50. I actually know a gal on another forum who was DX @ 52, another @48 and her sister @ 50. So know that you are not alone. There are plenty Dx in their 20s, seems to be the age when the lungs kick in.

I'm glad you have your boys to help out keep you going. Focus on how healthy you will be after tx, chasing your boys around. What a great goal! smilewinkgrin

I know I kept going for my kids, determined to raise them and see them to adults. Now they are 27 and 29. My daughter has been married 6 years and has 2 beautiful babies, my little grandbaby loves, 4 yo and 6 months.

I do have a blog with my whole sordid life about me and my CF. However, I really don't want to make it public here. I'll send it to you in your profile email.
Shall close for now,
Take care,
Jodi :-)
53, Dx 25, married, mother to 3, Grandma to 2 :)

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