Before Tx Questions

[bobbioh]

Getting frustrated was told there were not many more tests by the Diatician spent 20 min setting up apt. to have to change it all for another full day of testing on the 22 nd of Sept. And still know nothing except my cholestrol and weight are unacceptable. Its getting old already I tell you with the long rides, the exspence of gas parking and co pays.... grrrr. I hope when its all said and done its worth it. sorry to vent but its part of it. Bobbi

[Blossom/Jackie W.]

Hey lady..... that ain't venting! That's called being tired, a tad frustrated (rightly so) and to think of all the hoops they make you jumpt through

Hang in there!

[susanny]

I know that Aero went through a lot, too. You and she should talk, it might help. I know it would be verrrry much a strain on me, too, financially as well as emotionally. But we do what we have to do to survive, right? I know you'll be ok, you just n eeded to say it. I'm glad you did because it's a taste of what I have to come. Better save all my nickels.

[merryfl]

I know this is an older thread, but thought I would add some of my story here. Like Shelley and Colleen, I was diagnosed at a young age (early onset). I chose to ignore it for years. As long as I could get my hands on a Combivent inhaler, I was good to go...and smoking all the way! Finally, in 2000, I had to go on disability. I just wasn't able to work any more. Later that year, I had a bad exacerbation and spent almost 2 weeks in the hospital. That was when I quit smoking. I left the hospital with oxygen, but refused to use it except for sleep. I didn't want anyone to know about it. It took a few years for me to come to grips with my health and learn to accept and live with it.

My pulmo suggested that I think about transplant. He said "Other than the fact that you can't breathe, you are a young, healthy woman. There's no reason why you can't live a good long time with a transplant." I chose to ignore him. A year or so later, he brought it up again, and I thought about it. I did some research, but wasn't really interested. He kept after me about it, so I called Shands at the University of Florida for more information. They were wonderful, and the next thing I knew, I was getting assessed - 3 days of non-stop testing. I figured I'd be denied, and then my doctor would leave me alone. I was turned down because my legs were not strong enough (easy to fix) and I was amazed to find I was disappointed....I finally admitted to myself that I wanted this desperately, but that I was scared! I went to Pulmonary Rehab to strengthen myself, and 3 months later I was listed for a double (preferred) or single transplant. Still, scared, I figured I could always turn them down when they called .

3 months later, a Sunday afternoon, I was napping after church, when the phone rang. When they told me they thought they had a lung for me, I never even hesitated. It felt right. I immediately became very calm and told them we'd be there in a couple of hours. I grabbed my bag (prepacked) and my computer ( I posted from the ICU to let everyone know where I was!) and I drove myself to the hospital. Hubby was a wreck! There was no way I was going to let him drive!

Just past midnight, Monday, March 30, 2009, I was wheeled into surgery for a single lung transplant. Unlike Colleen, I had no pain from the ventolator. Tuesday morning, I was up in a chair for breakfast, and later that morning, I was moved to a regular room. On Wednesday, they had me walk the halls, and on Thursday I started in the gym on the treadmill. My pain was minimal (I think) and was easily handled with oral meds. I spent a total of 10 days in the hospital. I have no regrets and would do it again in a heartbeat!!

[susanny]

Thank you for sharing your story with us, Merry. It really helps to hear it from the people who have actually gone through the procedure. I have a question about the one lung transplant. What about the other lung you have that is diseased? Do you have any trouble breathing because of that one? Maybe you can explain how it feels. Thanks.

Sue

[Blossom/Jackie W.]

Thanks Merry for sharing.

Merry; do you think that your pain was less and your recovery a bit smotther (beyond the obvious of being in better shape from Rehab), but also becasue you had a single?

[merryfl]

A single lung transplant is, obviously, different from a double. The surgery is done by Thoracotomy - they remove a section of rib below the shoulder blade and around toward the front, then spread the ribs apart. After the surgery, they replace the piece of rib. I have had to deal with post-thoracotomy pain syndrome - the nerves cause pain, and the rib is left floating. Mine did not reattach, and tends to pop out at one end which causes alot of pain. I don't know whether the pain is less than a double, or if it is just different. But, either way, it's a big surgery.

My FEV1 is at about 58%. Pre-tx, it was 17%, so that seems about right. I can't tell that there is any problem breathing due to the remaining diseased lung. If I take a deep breath, I can tell that my right side expands a little more than the left, but that's all. There is no strange sensation - it just feels like normal breathing to me.

I've noticed several questions about how it is decided whether to do one lung or two. In my case, I have blood type B - pretty rare, so there are few organs available. When they come up, they try to spread them as far as possible. While I was having my surgery, a man was getting the heart and the other lung from the same donor. Heart/lung transplants are unusual, but when they happen, they usually have to have the left lung (closest to the heart). Fortunately, my right lung was the most severly damaged - and so the one they wanted to tx, so it all worked out.

Jackie - you're right that I was in good shape. I had been an athlete in my younger years, and was able to maintain a pretty normal life right up to my transplant. I did all my own housework, shopping, etc., and walked regularly. The only problem I had was getting up from a chair - I had to strengthen those thigh muscles. My transplant center has very specific physical requirements for their candidates and I think that makes a huge difference in the recovery speed. Of course, everyone thinks their center is the BEST ;D After all, they saved my life....

[mary57]

Merry, thank you for shareing that with us. It helps to have insisde knowledge so to speak.

[susanny]

Thanks for explaining, Merry.

[Suzanne (Suz)]

That is quite the story Shelley - and it makes you look at situations twice. I like how you said you embraced your oxygen as a new challenge where as others may see it as darkness. I too have antibodies in my body, not sure of the percentage but I carry what they call antibodies D. I used to be a big blood donor but for the last 15 yrs I have stopped because of it, wonder if I should inform myself about giving blood to some other people in the same situation as me? Hummmm.... something to think about!.

Good luck to all those going through decision makings on their lungs and which way to go. Sending positive vibes to all of you.

Cheers,
Suzanne