Earlier this week, I received notice for my next appointment at the Cleveland Clinic…

By Christopher Green

But before I get into all that I need to explain why I have not posted as frequently as I have been. It turns out that Air Conditioning is absolutely crucial to my well being, especially in the middle of August in hot, muggy and humid Cleveland.

Who knew? I do know now since our Central AC unit went on the fritz two weeks ago.

It’s almost impossible, at least from my years of personal experience, for someone in my situation to get enough O2 from air that is that hot and humid. I’m not a scientist, but it seems to me that the if air is hot then the O2 molecules move faster, expand, if you will and so there is less O2 in each gulp of air. 

I say gulp because it seems as if I am fish-like as I gulp for air saturated with 85-90% water vapor. Even with the window units that our handy guy, Toby, and his HVAC whiz father, Ken, lent us while the obscure parts for our obsolete AC unit were traveling from god knows where to our house, it was difficult to breath.

Never fear. Our AC unit was fixed, the air was cool and treated and I was once again able to breathe inside my home by the middle of last week.

Doesn’t it figure that the AC would go on the fritz right now when I needed it most?  

I guess that really is the story of my life. But it is not the narrative of this blog, so let’s say we get back to the really important stuff; the next appointment at the Cleveland Clinic.

Now this is the big one, this appointment, this is the one that will determine the foreseeable timetable for the transplant process.

As you may remember, the last time I did, what I liken to a 6-minute perp walk, I showed a significant increase in lung function. Or rather a recapturing of lung capacity.

Honestly, what was really happening was the start of the recovery process from that awful bout with the Mercer bug I had back in the fall of 2009 that landed me in the hospital for 18 days stretching from the middle of October well into November.

And my regular Pulmonary Doctor, Premier Physician Dr. Haddad, explained that there was so much damage in my lungs from the infection that it might take me up to a year, if ever, to get back to where I was before I came down with the virulent infection.

You see there were these, for lack of a better word, stones inside of my lungs that had most everyone miffed. They were actually blocking air passages in my lungs. Here is a picture from one of my brochoscopies, or as the kids call it, the Bronc. This is one of the stones that was lodged in my lung.

There were upwards of thirty or so that Dr. Haddad removed from my lung.

Here is a link to a virtual Bronchoscopy. It’s animated so it isn’t all that gross.

http://www.youtube.com/watch?v=XTC3AKmtrcs&feature=related

He guessed that the mercer infection was exacerbated by the inflammation surrounding these stones. The inflammation in several areas of my lungs was so bad that they were actually blocking air passages, which is why, Dr. Haddad surmised, I was losing lung capacity.

Since I already have diminished functionality, it was a big problem.

Dr. Haddad believed that removing the stones would reduce the inflamed areas so that parts of my lungs shut off from a steady flow of Oxygen would come back on line and could actually increase my lung capacity.

The jury is still out but I can tell you this; before that last spell of humidity hit, I was experiencing a jolt in my well-being.

When they tested me in March, I was huffing and puffing so hard that by the end of the 6-minute walk, I couldn’t talk. I was on six liters of O2 and hitting less than 85% oxygen saturation at the end of the line. In contrast, a normal person would be at about 97% O2 saturation after a 6-minute stroll.

I was unable to do anything more than getting through the day. I was tired and this last tax year proved to be more difficult than any tax season since I broke my hip back in 1992.

Sometime around the end of May, I started to feel better. Nothing tangible to report, but I was suddenly not as tired as I had been all winter.

In June, I was significantly better. So much so that Dr. Budev, the transplant coordinator, was asking me if I was happy with my “condition” and that if I was, we could push the lung transplant down the road a bit. Of course, this is old news to followers to the blog, but if some posts were missed, this will bring us all up to date.

About a month ago, toward the middle of July, I was able to ride the stationary bike for 15 minutes. Up until that time, I had not been able to do more than six to eight minutes. Remember I talked about this in an earlier post. I focused on the fact that my arms did not ache as they did when I hit the four-minute mark before July.

Well, since the second of August, I have been able to exercise every day. I have been swimming, not just moving around in the pool like I was earlier in the summer. I was now doing laps.

Of course, because I have to wear Oxygen while in the pool I have to make certain allowances. For instance, I have to use a small float in order to make sure I stay above water. I also have to do the sidestroke so that the 20 ft hose I have attached to my portable tank is not all tangled up.

In any event, I have been able to ride the bike for fifteen minutes, except, of course, for the two day when the AC was down and could only make it to twelve, done yoga or swam every day since the second of August.

This is the longest stretch of continual exercise I have been able to manage to string together since the summer of 2007.

The turmoil of the past three weeks, the AC problem and Toby finishing the long delayed remodel of our home, was bearable because of this string of exertion I have been able to cobble together. For the first time in many months, I feel I have stabilized and am cautiously thinking about a future that isn’t totally dominated by thought of a pending lung transplant.

In my situation, I will have to have a double transplant and as of now, the protocol for a person in my situation dictates that the upper age limit for a double lung transplant is 60. Since I am now 52, I have an eight-year window. If I can push the transplant back further, perhaps, because of ever expanding technology, the procedure will be less dangerous when it is my turn to go under the knife.

That is why this upcoming six-minute walk means so much to me.

On September 15, I will take that walk knowing that I am in a much better place than I was back in March or even June.

Dr. Budev told me that I am still in a very precarious situation, that another bout of ARDS like I had in 2004 or a bad infection like I came down with last fall could kill me. But that would be the situation even if I had a lung transplant.

I need to take any time that I can get and to focus on strengthening my overall health. As of now, I have lost 7 pounds and have dropped by my BMI since the beginning of August. I can now fit into the clothes I was wearing back in 2007.

My fat clothes have been shoved back to the end of the closet. And, best of all, my man boobs are no longer screaming out for a Playtex Living Bra.

As of now, I am at least aiming in the right direction.

All I can do is try to maintain the momentum I have going as the last days of the summer of 2010 slip slowly away.

Six minutes. It sure doesn’t sound like much. But, those crucial six minutes smack in the middle of September could very well determine what will happen to me for the rest of my life.

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4 Responses to Earlier this week, I received notice for my next appointment at the Cleveland Clinic…

  1. Larry Durstin says:

    we all love those playtex living bras

  2. kim says:

    Came across you’re blog while I was trying to research lung transplant poilicies for recovering addicts. I’ve got CF, 26 years old and I am a recovering addict. About to be evaluated at Duke University for a double lung transplant. Just wanted to say hi and that I enjoyed your blog

  3. Julie (Narancic) Drengler says:

    Chris,

    I’m so glad you put me on your list. I was overwhelmed and inspired by your words and your attitude. I’ll have to go back to the beginning and know that you are in my prayers.

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