Three years

I made it three years.

It was almost three years ago I woke up. I had to relearn how to walk and how to swallow.  I have a reminder--a six and a half inch scar from a sternotomy--a cut made down the middle of my chest, from the top of the sternum to the bottom. My heart was stopped and I was put on life support while surgeons removed my diseased lungs and replaced them with donor lungs.

I live each day with the statistics of lung transplantation hanging over my head. Many people tell me to ignore the statistics, but I will be honest with you. It's difficult when I deal with the physical and emotional pain of transplant. I have, since transplant lost friends waiting for transplant and I have lost friends who have received their transplant. How quickly one and two years go by and how many friends have died, either of rejection or infection or some other transplant related complication. Lungs are fragile and they don't last forever. Lungs are exposed to the outside air, pollen, pollution, germs, spores, and can suck up whatever is floating around. By one year doctors expect about twenty percent of us transplantees to die off. By five years, about forty to fifty, and by the tenth year, only about twenty-five percent will be going strong. And, all too often we deal with other health problems because of the effects from the medications we take.

Year three has been full of wonderful memories. I've been able to do much more than the second year, even with my limitations. This past year I've logged several health issues, a couple more surgeries, Gamma Knife radiation, several trips to Cleveland for follow-ups, many blood draws, and more. I keep photos of my donor on my shelves at home and can tell you that I sense that I am a whole lot happier than most people I meet on a daily basis, even on my toughest days.

One year!

Happy one year to me! I am officially past my one year anniversary of my lung transplant. In the transplant world this is a huge milestone. In a more recent article of the Journal of Heart and Lung Transplantation it states that "patients who live past the first year... have a sixty-three percent likelihood of being alive ten years post... and a twenty-seven percent chance of being alive twenty years post." I like that statistic more than the one I normally see with the median extended life of  6.5 years.

I got emotional. Mostly because I was thinking of my donor's family and his death. I know some people will say to not let this bother me, but that is easier said than done. His life is important to me. The anniversary of his death, such a tragedy, brought hope into our lives. The end of his life brought continuation to mine. (And perhaps to several others.) I will always honor his memory as part of him is now part of me for the rest of my life.

I will be going back to Cleveland in a few days for my one-year check up, complete with biopsies of the lungs to check for rejection. We are hoping for good results.

I'm still struggling with the usual side effects. I guess it's no longer news and I feel as though I should stop reporting them here with risk of boring you. I've been in the ER at least once a month and that is getting really old. The Botox injections in my head and neck have helped decrease the frequency of the migraines somewhat, but when I get them, they are still bad. The nausea and vomiting have not decreased. 

I was also caught off guard last month by a bout of food poisoning. It reminded me how fragile I am and how careful I need to be. Generally I feel less anxious about my limitations and transplant life, but still have my moments when I am reminded of how much I miss how things used to be before I was sick. I can't dwell on those things. I've had to make changes, and I continue to move ahead or else grief consumes me.

Onward. A new year awaits...

July is not over.

I keep thinking it's August. Mostly because July has been a whirlwind, not unlike most of this year. I woke up early this morning because of the storms. And, then... the electricity went out. The hum of the oxygen compressor stopped and it beeped out an alarm. I hooked up to a portable tank but I could not sleep because I was too scared I'd run out of oxygen and not realize it. I felt so vulnerable. I need the oxygen compressor (that uses electricity) or a tank of oxygen and I'm on an IV med that must stay cold. I thought about the medicine in the refrigerator and the ice packs I use in my IV pouch and I hoped First Energy's website was correct about their estimated repair time.

It's the same vulnerability I felt when I was caught in a storm last Wednesday on the way back home from the Cleveland Clinic. I had had a right heart cath late morning and my friend was driving me home. After a stop to eat lunch, we headed west on the turnpike. What we didn't realize was that we were heading towards a very dangerous storm. A little past the Sandusky and Norwalk exits we encountered lots of wind, rain, lightning, and hail. And, I could hear the tornado sirens. We turned on the radio and heard the weather service announcing tornado activity and to seek shelter right away. Cars were pulling off on the side of the road, including under the overpasses, which is dangerous in tornado weather. The drainage ditches on the side of the road were completely full of water. My friend put on the hazard lights and followed a semi and we slowly inched ahead. We agreed we really had little choice and that we'd gauge our decision on the reactions of the semi driver since he or she would have communication with those up ahead on the road. We felt it was just as dangerous to park on the side of the road as inching ahead at snail speed.

We reached the Commodore Perry Service Plaza and found what was perhaps the last parking spot left in the whole place. But, we were stuck in the car with the wind whipping and the lightning zapping all around. We knew if we stepped out, we'd become instant lightning rods. (And remember how I calculated my chances of getting hit with lightning was greater than getting some rare, random, lung disease?) So, we sat. Again, I felt vulnerable. I was hooked to an O2 tank I desperately needed. I couldn't leave it in the car and run. Actually, I would be unable to run with or without it.

Once the lightning calmed, we decided to make it into the service plaza. We walked in and everything seemed very quiet. There were a few people standing and looking around, looking just as confused as we were. The restaurants and the gift shop were closed up and dark and the place seemed relatively empty. That was just a brief moment before a lady in a blue uniform came out and announced that people could now leave at their own will, as the tornadoes had passed. Then the place filled with people (and their pets) who had waited out the storm in the plaza's storm shelter.

I told my friend she deserves the best driver award for driving us past a tornado. It's probably a good thing she was with me that day as she is the most cautious and calm driver I know. As for the storms this morning, First Energy had the electricity running again before the estimated repair time. I was able to hook back up to the oxygen compressor and its hum lulled me back to sleep.

What's this PVOD thing again?

A lot of people have been asking specific questions about PVOD, or Pulmonary Veno Occlusive Disease. So, I'm going to do my best at explaining my version of what happens with PVOD.

PVOD is a rare condition that causes Pulmonary Hypertension and symptoms can include dyspnea, dizziness (and fainting), fatigue, edema, and a dry cough. In PVOD the small pulmonary veins in the lungs are affected. Pulmonary Hypertension should not to be confused with Hypertension, or High Blood Pressure. They are two different monsters and are very different.

In PVOD, I imagine the lungs as a tree with big branches and small branches coming off the big branch... and even smaller ones coming out from the small branches. Then I imagine someone snapping off those smaller branches until there is nothing left but the bigger branches. Basically, that has happened to my lungs. PVOD has destroyed all those small branches. And unfortunately, those branches are not expected to regenerate.

No one knows why a person gets PVOD. There are so few of us with PVOD they cannot make any connections. Researchers have a general idea of what we've been exposed to and there are suggestions as to what it could be linked to, but the statistics are just not there. In fact, if I've done my math correctly, a total of 32-63 people are diagnosed with PVOD in the United States each year. Compare that to over 232,000 cases of breast cancer diagnosed each year in the United States. Chances of being diagnosed with PVOD any given year is approximately 1 in six-million. I have a greater risk of being struck by lightning: 1 in 700,000, in any given year, in the United States.

I wonder if I should I buy a lottery ticket.

Anyway, there is no cure for PVOD. It is somewhat similar to stage 4 cancer. I know it's going to take me down, but I just don't know exactly when. And, at this point, treatment options are extremely limited.

A double-lung transplant is an option for some. But, it's not a cure. Double-lung transplants are risky and the recipient has about a 50% chance of surviving into the 5th year on the new lungs. As doctors explain, when a person has a double-lung transplant, they give up one problem for another.

The current treatment for PVOD is to use a variety of medications that dilate the blood vessels and target the symptoms of the PVOD. Other medications are prescribed to help counter pain and side effects of the drugs. It's a vicious cycle. This treatment can include the use of oxygen and additional heart medications when the heart is exhibiting signs of failure. None of these medications cure PVOD. Medication may keep a patient stable or make them a little stronger. But, medications can also do nothing, and in some cases, make things worse.

There is mention of stem cell research eventually providing treatment for Pulmonary Hypertension. Researchers are hoping to find something that will regress the disease. And, perhaps they will find something eventually but it may take many years to research and test, and then gain approval for such treatment. More than likely it won't happen in my lifetime.

I'm thinking a lottery ticket is sounding pretty promising after all. Perhaps it would increase the odds of being able to pay off my medical bills...