Update on my lung transplant. 1-17-14
I'm sorry for the lack of posts. I haven't been able to get through my e-mail since last Sunday. Managing the details comes first, but hope to have more posts as I go on. this week, I spent Thursday and half of the other four days at the VA, for rehab, blood tests, X-rays, EKGs, and clinic appointments, including a bronchoscopy on Thursday. hey took the staples out Tuesday, and the surgeon, Dr. Jim Maloney, is pleased with my progress.
The short news: Everything is going well, the issues are normal and manageable. My friend John Payne, who got his lung 5 days before me is also doing well.
Those who are bored reading about an old guy's health issues--which should be a majority, may stop reading now.
If you missed the update when I came home from the hospital, it's here: http://tartanmarine.blogspot.com/2014/01/im-home-with-new-lung.html
- I have a lot of "slough" in my new lung. (say: "sluff") This happens in many, but not all cases, as the inner layer of cells in the new lung died at transplant, are sloughing off, and form mucus. Once it's gone, i should be fine. I'm having more frequent bronchoscopies to get it out, and my spirometer reading go up after one.
- I have steroid-induced diabetes, so am on a low-sugar diet. This happens a lot--my friend John is has it as well.
- I have edema (swelling in the legs), not bad, but for it I'm on a low-sodium diet, which is hard to figure out. Sodium also reacts with some of the meds.
I'm also on the safe-food diet, for life, to prevent infections. Meat cooked through, no buffets or salad bars, no sushi, etc. Infection and rejection are the enemy that could keep me out of the 50% who live 5 years.
Frequent, thorough hand washing, so they are chapped!
Mornings I use an inhaler, nose spray, take and record my temp, blood pressure, 3 Spirometer readings (you blow into it 3 times, and use my Neti pot.
Evenings I use an inhaler, nose spray, nebulizer (boring 20 minutes), take a bad-tasting liquid medicine, take and record my temp, blood pressure, 3 Spirometer readings (you blow into it 3 times, and use my Neti pot.
I take and record my blood sugar once a day, at random times. They said three times a week, but I got careless and ate things that spiked it to 207 one day, so I got the message. It was 116 this morning.
I take pills at 800, 1200, 1700 & 2000 hours. I was telling people how many, but it changes. They keep changing the dose depending on my blood work--have increased one med three times so far. Three meds are PRN, and a couple I take only three days a week. So well over 30 pills a day, all meds except for about 8 vitamins and supplements.
Rehab at VA three days a week, plus they want me to exercise over an hour a day--walking is best. But we are in deep winter, so I climb the stairs, or walk around Walmart. I'm not up to that hour yet! I get breathless from exertion, but not from lack of oxygen.
So managing the transplant takes a
of time. If all
this sounds like a complaint, it is not. Just
a description of my new life style. Much of this will go away if things
continue to progress well, but some is for life.
I feel better than I have in years. I'm not coughing all the time for the first time since 12/31/05. I'm breathing without oxygen and they took the concentrator & tanks back. I've seen the basement & second floor for the first time in many months. Friday morning at rehab, I walked 20 minutes on the treadmill at 2.5 miles per hour, and my oxygen level stayed at 97%. Before the operation, I could walk 30 minutes at 1.5 MPH, but only with 100% oxygen flowing. And I get stronger. I can't say enough about the care I received at UW & the VA, & the professionals who provided it.
So getting a lung is a blessing that I thank God for, and ask for comfort for the donor family. Feeling this well, less than 4 weeks out, makes all the life style changes very well worth it. I'm trying to be 100% compliant, to make this work if I can.
As always thanks for your good wishes, prayers and thoughts.
Semper Fidelis. ~Bob