It is tough going through your pre-transplant time. If you're on the double-lung transplant waiting list, you already know how precious each breath is. During this time, you or your caregiver(s) might notice you are depressed. You become sullen and don't want to really do much of anything because it takes so much effort. You spend many times during the day just trying to recover from scary poor-breathing situations. During this stage you might start taking things OUT of your bucket list. Don't be too fast. Many of the things you were aiming to do before you couldn't breathe well can still become a reality.
For example, prior to my double-lung transplant, I wanted to climb Machu Picchu, be a participant in the Amazing Race with another successful transplant patient, and go scuba diving at some point in my life. It was bad enough I suffered through two comas before being transplanted. Things actually looked quite bleak. Then, I removed things from my bucket list. It was just getting too hard to breathe and the prospect of getting donor lungs was not looking very good. My days were numbered.
But the transplant happened and I got my new lungs.
And, something amazing else has amazingly happened. I'm actually feeling a bit better these days. My new lungs are working and doing what they are supposed to do. My doctor is actually "okaying" me to try out and see if I can handle scuba diving. So, back into the bucket list it goes! I may not get to Machu Picchu because it's probably too far removed in so many respects: high altitude, lots of walking, and no Life Flight or trauma center nearby. The thing is, attitude truly makes a difference.
Here are your orders:
1. Go to bed early enough so you're not so tired getting up in the morning. This means actually shutting the TV off so your mind can rest. When the TV is on, though we might want to doze off, we have a tendency to have one ear listening and the other just trying to shut things down. Make it easy on yourself-just shut it off. If you need sleep meds, talk to your doctor.
2. When you wake up, don't attempt to get out of bed without a little bit of a positive attitude. The more positive your attitude, the better you will feel. This really will make things so much easier for you as you get on with your day.
3. Do what you have to do to get dressed and eat breakfast. Then, amble around. This is at least some form of exercise. If you are supposed to go to rehab, then GO! You have got to be as strong as you can be to endure the double-lung transplant surgery. The more fit you are, the better surgery will go, and your recovery will be much smoother. You won't be tentative about getting out of bed after the transplant because you will be prepared to take those first steps down the hallway.
4. Watch what you eat. This is not the time to be gaining weight. Your size is important because the fit of the donor lungs is important. You are more sedentary, so that means if you eat too much you will rapidly gain weight and you will begin to lose muscle mass from laying around. The added weight makes it harder to breathe. It never hurts to start envisioning yourself getting up from the hospital bed post-transplant and walking down the hallway. I did a lot of this. I'm convinced that if you can imagine it, it can happen. You have to mentally see yourself unattached to oxygen and ambulating down the hallway and out the hospital door and walking into your house-without your wheelchair.
Now, all this positive attitude material may find some people a bit unconvinced that looking forward to each morning will make a difference. Well, I'm pretty convinced it does.
So, the story here is not to give up on your dreams when you're on the double-lung transplant list. Don't be too quick to take things out of the bucket. In fact, keep some of them (or all of them) in the bucket and aim realistically to accomplish what you've dreamt about.
I am a happy double-lung transplant recipient. You can be, too, with the right attitude and a vision for a successful transplant.
My story is on www.2lungs2live.com. Here's hoping your story is happy, too.
Dr. Rosalie Lopez is an example of what good things can happen from a successful transplant. She stands ready to support those that need her inspiration and help pre-and post transplant.