Kitty Hawk Nov. 2010. The pictured hill and memorial behind us is discussed in post. Cold this day..50's with a 35mph wind.
It has been awhile since my last post. In the lung transplant blog world, that means one of two things. Either A) something bad has happened and no one has thought about posting, or B) Things have been so good, blogging seems tedious and takes up time for living. Well for me the answer has been B!
Today marks my 4 month anniversary of these stellar new lungs! My breathing improves everyday. My body is still adjusting to the new lungs, in a way. As I am sure they were not the same size as my old lungs and my new old lungs (I never know how to refer to my first transplants lungs). So, when I do some exercise and do some seriously heavy breathing I get sore in my lower frontal rib cage area. Like a muscle soreness akin to working out your arms or legs. This is a good thing I believe. I have no terrible gaping hole feelings or rattling ghostly sounds at all when I breath(like my first transplant). It has been this way from day one. However, I do feel that perhaps the lungs, when I breathe deep, put pressure on my lower airway diaphragm and intercostal muscles and they get sore. Mostly because I haven't used these muscles in ten plus years. I habitually still breathe from my upper chest muscles and accessory breathing muscles. I have to relax and reteach my body that it is OK to use my stomach and diagphram to work, that I won't launch into a major coughing fit when I do this.
So, in a nut shell, my breathing has been perfect. In fact, I have coughed maybe 10 times in 3 months. And that may be an over estimate. I have had no congestion except maybe one time when I had a sinus infection. I have to take the time and remind myself how bad the coughing was before my first transplant. The waking up and coughing constantly for 3 hours. Finally, the chronic consistent cough would subside at the desk in my office at around 10am. At this time, I would feel brave enough to go see customers or make phone calls without people thinking I had the plague when they heard me cough. Although, with the smallest amount of exertion or movement I would trigger a coughing fit at all times of the day. So, explaining to people I was not dying was always the norm. That has been the most amazing thing about both transplants. The lack of coughing. What a relief.
I have had some musculoskelatal problems and a few issues with blood levels related to potassium and my tacrolimus level (This is the major drug for immunosuppression). But nothing that has really slowed me down. The cortisone injections in my hips worked. No more hip pain. However, my feet which have always bothered my but took a back seat to the hips for awhile, flared up with great intensity. They are numb, tingle, are atrophying, look frail, and sometimes hurt intensely. Why?? No one seems to know. There are 3 theories. 1) an MRI showed I actually have 2 herniated discs in my lower lumbar5 area. This is putting pressure on the nerve roots. How I have this now is beyond me. I am seeing a spinal surgeon tomorrow and he can better review the MRI and my symptoms and see what might be related. 2) Diabetes. The last year I have been a diabetic with poor glucose control. I tend to run high. And also spike up and down rapidly. I admit I am not the best at controlling glucose. I take the insulin, but there are times when I need a coke and snickers and just cant find that insulin needle. So, perhaps I have developed a diabetic neuropathy. This makes the most sense with the symptoms I have, however it is unusual to develop this in about a year. It usually takes 15 years of poor control. However, no one really understand CF related diabetes to know for sure. and finally 3) it could be the Prograf (major anti-rejection med), it lists peripheral neuropathies as a side effect, and many people complain about heat in their feet when walking and on prograf. But the doctors never want to acknowledge this theory and think it is virtually impossible. I think they are right, however it bugs me that they lend it no credence whatsoever. I think it is because they want me to stay on this med at all costs. And I do too. They believe it is superior to Cyclosporin, the other drug for immunospression that was used before prograf.
So, I am left in limbo. The pain and discomfort I can get by with. However, my feet are wasting away and have such poor sensation. Sometimes I can't tell what position my toes are in, they get stuck in my pants and I can't move them when dressing. The pain will act up at night and force me to stay up to 3am watching pathetic shows. This week I see the spinal surgeon and the Endocrine specialists.
So, focusing on the positive. My breathing and what I have been doing. Here is a sampling of what I have done since my last post.
-trick or treated with the boys and friends, walking around for miles with not so much of a hint of tiredness
-Playing basketball every Tuesday afternoon with Matias. He looks like a natural, like his Dad. Come on, all my real friends out there know I had crazy skills. For a kid with CF, I made you all look stupid on the court.
-Wrestling Simon and throwing his 52 lb. body into bed. That's right, you heard it, I can lift 52lbs of giggling, struggling, and delightful child now!
-kayaking in Kitty Hawk, NC.
-Hiking up the huge hill at Kitty Hawk to see the Wright Brothers memorial. Serious incline. Not one problem with breathing. Running with the boys down the exact path the Wright Brothers did their first flight.
-Riding my bike all through the neighborhood, and keeping up with anyone (except Lance Armstrong). Riding back from school with the boys.
-And subtle things that are taken for granted. Getting right out of bed, going to the store, walking the dog, cleaning the house (ok, I'm bullshitting, my lungs can not handle this yet. So, I tell Rebecca). And just being! Being a Dad, husband, friend, partner, and member of the community without feeling like I had a giant SICK sticker stuck to my forehead.
I saw my surgeon, Dr. Haithcock on Friday. I didn't get a chance to talk to him, but I felt such gratitude, finally. I was thankful when I last saw him before discharge, but I was still so apprehensive and scared from what happened. I was going home, but holding my breath. But seeing him made me realize how this man stood up for me a second time and gave me a chance to live again. The second set is always better. No matter what happens, these last 3 months out of the hospital have been incredible and I have appreciated life like never before! I've finally let that symbolic breath out. No more holding it any longer.....