The No Diagnosis, DiagnosisIn 1985 I kept getting sick. After several chest x-rays I was told I had Pneumonia. 6 months later I had it again, and then again and for good measure one more time after that. Every time I was told the same thing and given the same medications. Finally after 5 or 6 weeks on one antibiotic or another I was more or less myself again. In the next 10 years I had at least one recurrence of pneumonia every year. Every time I was told the same thing and shown x-rays that were all similar, showing shadows and scarring, etc.
In 1993 I started hemorrhaging blood through my right lung and was coughing it up. That was actually one of the more unpleasant experiences of my life! After a week in the hospital and much consultation it was decided to do a embolectomy (I may have this exact name wrong). What they did was actually pretty cool. While under light anesthetics a tube ws inserted through my arteries at my thigh, was wound through my heart and into the area above the upper lobe in my right lung. Once there the artery that was leaking into my lung was plugged with glass pellets. All very cool and very science fiction-ish, and, it worked! I went home the next day convinced that forever cured of lung problems.
Boy, was I wrong. Shortly after this procedure I was once again diagnosed with pneumonia. Again, this became a recurring problem until 1999 when I got REALLY sick. Towards the end of 1999 I got so sick I could only get out of bed for an hour or so at a time. I couldn’t breathe and always felt like I never had enough air.
The Real Diagnosis
Now, in addition to x-rays and cat scans I was subjected to a procedure called a broncoscophy (affectionately called a “bronc” by those in the medical field). Now, this is a fun test! This is where they go through your nose and into your lungs with a tube. Through the tube they can look at everything and take samples, cultures, etc. The bronc is only pleasant if you like hard foreign objects shoved up your nose and then gagging as the tubing goes into your throat and through the air passages into the lungs. I must have really enjoyed this because I had to have three of them.
After three broncs, we still had no idea what was really going on and the first serious talk of exploratory surgery was broached. The interesting thing about exploratory surgery is that there are no guarantees. Once in the doctors feel like its carte blanche at the smorgasbourg. Before you let anyone inside, you better REALLY trust them and be so sick it’s your only choice. Well, after another week in bed I decided I had to do it.
General surgery has really changed since I had knee surgery in college and chest surgery 26 years later. You now get to arrive at the hospital about 45 minutes before your scheduled time, not the night before like it used to be. I have to admit it, I felt like I was in a science fiction movie. THE FUTURE: Stand in line, get a shot, lose the gall bladder, move on. Not quite that bad, but definitely a sped up version of what it used to be like . . . . . at least before they cut me open! I’m not complaining, modern medicine is the only reason I’m still alive, but doctors don’t really make you feel warm and fuzzy, its not their job. So I slide onto the operating table get the IV put in and am told to count backwards from 100. Then I hear the anesthesiologist, wake up, can you hear me . . . . .
Yes, I’m Awake Yes, I can hear him, but OH MY GOD, I wish I didn’t. We are talking some serious pain here. Tubes running in and out of me, respirator, it’s even dark outside, and I had 6:00 AM surgery. Now I know what pain is. Every heartbeat and every breath hurt. Thankfully, once he knows I’m awake and coherent he knocks me out with some morphine.
My Lost DayActually the beginning of many, but recovery takes time. I woke up again about 1:00 PM the next day. The surgeon came in, the pulmanologist , etc, and I got the updated about what happened in surgery. It seems the top two lobes of my right lung had degenerated through some sort of infection. The lung tissue had attached itself to and was infiltrating my rib cage. Instead of taking some tissue
(maybe a lobe) sewing me up and getting out, the surgeon had to remove 2 lobes, and had to strip the lung tissue from my rib cage. This actually turned into a job for 2 surgeons and took 6 hours. During this process they broke all my ribs on my right side. This proved to be somewhat traumatic and painful. All I can say is that no one can ever prepare you for that kind of pain. It feels like everything is connected to your torso. If you move a finger, it hurts. If you move an arm, it hurts. If you wiggle an ear, it hurts. You get the idea.
RecoveryI guess the first thing I remember is getting moved into isolation. After surgery, all of the tissue was taken to pathology for analysis and identification. No one new why or how my lung got into this condition. Some of the first tissue samples showed some traits of Avarian TB. I didn’t really care where I was because everything hurt. Before I forget, I have to tell you one thing about lung surgery. This is something that never gets mentioned. Breathing is painful, coughing hurts REALLY bad (and they always want you to cough), but yawning, which causes a sudden rush of air into your lungs, is excruciating and disabling. Absolutely the most pain I have ever experienced. And you will yawn. You simply can’t help it, when your body doesn’t feel like it’s getting enough air you will yawn! After the first few days recovery is like any other surgery. The staff wants to get you up and around , and you have no desire to move. Normal stuff like that. The other strange part for me was the continuing effort to diagnose what I had. With most of a diseased lung on hand you would think that they could figure it out, but not this time. They finally ruled out TB in various forms and all of the other really nasty lung diseases. After 11 days in isolation and the ICU, and 2 days in a standard room, they let me go home. Still no idea of what I had or how it got so bad.
One More TimeNow at home I had to fend for myself. Lots of friends came by to help and check on me, and Percodan kept the pain at bay. After some time I actually felt pretty good. As I regained strength I would do more and life was definitely getting better. Unfortunately it didn’t last. Breathing was once again getting difficult and the cat scans were showing more dots and shadows, now on both lungs. About 8 months after the first surgery we decided to go in again to the left side and try to get some active tissue to biopsy. Thankfully this was much easier than the first surgery. 3 days in the hospital, no nasty surprises and a correct diagnosis, Lymphocytic Interstitial Pneumonia (LIP). OK, a semi-nasty surprise, LIP. I was the typical patient; OK, give me some drugs to make it go away, thank you, see you later! No such luck. No cure, no research, only 1 or 2 treatments, that may or may not work. I owe you and explanation. LIP is an auto immune disease that attacks the lungs. It will turn a lung into the consistency of rubber and prevent the lung from absorbing oxygen. Being auto immune, the healthier a person is, the worse the lungs get. It comes in two varieties, T Cell and B Cell and is very rare in otherwise healthy individuals. It is most commonly seen in AIDS patients when they are near death (no I don’t have AIDS). What’s interesting in my case is that my B and T cell counts are very similar, I have been told that they are usually primarily one or the other (you will have to ask someone wiser than me to clarify that). The other wonderful trait of this disease is that in 99% of LIP cases it turns into a particularly nasty form of lymphoma.
TreatmentThe main treatment is prednisone or other steroid treatments. I was started on 5,000 mg per day. Prednisone is a wonderful drug and is probably why I’m still alive, but boy, what a great way to gain weight. Prednisone stimulates or helps produce insulin, I’m not really sure how it works, but I had one doctor who told me the best way to think about it was as a calorie. Multiply your dose by 100 and that’s how many calories you’re getting. It also drives your appetite, gives you the shakes, changes your appearance and much more, but it does keep you alive. If you take it for an extended period it will also greatly increase your risk of diabetes. Do I really have to say how much weight I gained? Let’s just say A LOT! And in a very short time period. All you want to do is eat!
Living With LIPI have been living with LIP for almost 8 years. Fatter than I used to be, still able to be a father to my kids, still living. I have come to terms with my doctors and have cut my prednisone dose down to an exist-able minimum. My breathing sounds horrible and I still wake up at night gasping for air, but I’m still here.
I guess the biggest physical difference is my energy level. I used to be the one who could do anything at any time. No one, and I mean no one could keep up with me. Not that I was fast, but I could just go and go and go. Today I can be active for about 5 hours a day. After that breathing is really difficult and I just have to stop and let the air supply catch up with everything else. It’s hard on my kids because they still remember how active I was.
Financially this has been a disaster. Underinsured for health insurance and no real disability insurance, unable to work for long periods of time, really made things difficult. I also have 2 kids in college. All of it adds up to a complete depletion of reserves and massive debt. That’s why I’m writing this.
I also have much to be thankful for. I have great kids, friends and neighbors. I’ve lived a great life and have been able to share it with many wonderful and incredible people. I have some great doctors who have worked with me to formulate treatment strategies where very few existed. My mother is almost 90 years old and still active. I get to see her interact with her grandchildren and see them learning from each other.
Thank YouI hope this finds all who read it healthy and happy. If I have somehow positively touched you and your life and wish to leave a gift, I thank you. If you don’t wish to leave a gift, I thank you for taking the time to read this. I wish all of you healthy and happy lives.
