Something good, something bad and something that may just turn out wonderfully…

By Christopher Green

This past Wednesday, Brenda, my self-appointed and much appreciated caregiver, and I packed up for another long day over at the Cleveland Clinic. More tests, more meetings with doctors and a promised frank discussion with the head honcho of the Lung Transplant program was the agenda for the day.

I learned a long time ago that it is important to bring someone with you to these marathon days at the Clinic. I know that they schedule these medical endurance tests trips mostly because a hefty number of the patients wandering around the 20 or so buildings that make up the campus come from far beyond the borders of Cleveland.

She insisted in pushing me in a wheelchair. Having Brenda do all of this makes it a lot easier on Laurie so that she doesn’t have to take off work.

It is rare to meet someone who actually lives in the area. We didn’t really get a chance to talk with anyone on Wednesday because we were careening about from one building to another barely getting done with one appointment before we had to scurry across the campus to the next scheduled event located literally blocks away.

How long was the day?

Long enough that the ever-effervescent Brenda decided to kill time by braiding my hair. See the picture below. I had made the mistake of sitting still just long enough for Brenda to get antsy.

Truth be told, I love the look. Makes me look like a Viking warrior, well in my mind, at least.

We were zig zagging all across the Cleveland Clinic Campus first starting out in “A”, better known as the Crile building, to have, this time, only ten vials of blood drawn. A sharp drop off from the 38 or so vials that flowed from my veins back in early March. We also stopped off for a quick Chest X-ray.

Next, we slogged over to the W. O. Walker Center, better known as the “C” building. This particular building is one of the few outliers that have yet to be connected to the conglomeration of building connected by skywalks, covered passageways and underground linked basements.

We went to the “W.O.W. Center” because I was scheduled to be checked out for allergies.  Or so it said on the appointment itinerary. What it really was was battery testing for antigens. What they do is inject a tiny bit of an antigen between the layers of the skin to see if you have been exposed and your body remembers the antigens injected.

I had three injected. One to test for TB, one for Tetanus and another for a yeast infection called Thrush.

After that, we were headed over to the “G” building, which is two and a half blocks away. We had 20 minutes to get there and so Brenda kicked it up a notch and pushed me so fast my hair was starting to blow back because of the wind she was generating.

Over at the “G” building. I was given my second shot in a battery of three vaccine shots for hepatitis. They do this to all potential transplant patients because of the immune system suppression that is put in place to keep your body from attacking the new organ.

To give you an idea about the size, here is a map of the Clinic Campus.

Here is the link to see a more detailed map. http://my.clevelandclinic.org/locations_directions/main-campus/campus-map/default.aspx

After that, back to the “A” building for the rest of the afternoon. This is where I was to have two Pulmonary Function Tests to see how much I have changed since the last round of tests back in March.

Now one thing I have to talk about here for a few minutes was how efficient the Cleveland Clinic has become.  Most of their system is computer connected so that I do not have to keep repeating the same stuff at each and every shop. It also sends the results along the lines as soon as they are entered.

The only component they have yet to be fully incorporated is the X-Rays. I am sure this is because it is easy to carry them around with you, but also it could be because the older X-Ray Machines are not yet depreciated and so they are waiting before they integrate that part of the radiology department with the rest of the system.

I do know that the Cat Scans are already linked in.

Remember when I posted those X-Ray from the dentist a few months back. They had a machine that generated the results to a computer. Well, I am sure these machines are really expensive and perhaps the Cleveland Clinic is really just waiting to make sure the technology reaches a point where it will plateau for a while.

The first of the two tests was a Spirometry Test that is designed to measure the peak flow of the Oxygen in and out of my lungs. Here are two picture of the machine; one is what I call the Cone of Silence that is an isolation booth where you do the test. The second picture is the intake part of the machine. This can be administrated inside or outside of the isolation booth.

This is what the cone of silence edition of the Spirometer Device looks like.

On Wednesday, all the activity was conducted out in a room air environment.

Next comes the walk. This is why it was so important for Brenda to be there pushing me around on the wheelchair. If I had been alone, walking between all of those buildings, I would have been compromised by the time it was for me to do the lung function labs version of a “perp-walk”.

They are looking for two things, how far you can walk and how much Oxygen you need to complete the walk. You start off at room Oxygen level. Using a pulse Ox, they monitor you to see how fast you dip down into the danger zone for O2, usually when you dip below 90% saturation.

For this Perp Walk, I started out at a 93 O2 level at room air. At the 2.3 minutes into the 6-minute walk, I had hit 440 feet. My O2 level was down to 87. They cranked it to 2 liters per minute and then four and finally at six for the last minute of the walk. By that time, I was at a 94 O2 Level.

Compared to my last test in early March, I showed significantly higher. That test I ended up at 88 O2 saturation at the end of six minutes.

I was okay with the results, but Dr. Budev was enthusiastic. So much so that in our discussion, we talked about quality of life and the how to measure this against the risk of having the lung transplant. We talked for over an hour.

I quite frankly told her I am, “Okay” with my level of activity and that I can deal with the pain and tiredness if I could kick the operation down the road a little bit. Remember, the survival rate is not good for lung transplants. In fact, it is the worst of all the transplants.

Here is a picture of Brenda resting for a moment after pushing me back and forth across the Clinic Campus.

So let me get back to the good news, bad news potentially really good news.

First, the bad. Turns out my heart is worse than I thought. Well, not my heart but the particular artery that is blocked. Turns out there are lesions in my artery that could explode and that would be all she wrote. They didn’t want to put a stint in if I was going to get a lung transplant because they could just do a bypass while they had my hood open.

I am going to see the Clinic’s cardiologist who is connected to the Transplant Team next Thursday. If they do the stint, it could very well result in an increase of lung function. I should see less tightness in my chest and I could also see my O2 level raise up a notch or two.

Next comes the good news. That should he pretty evident. There is slight improvement from the condition I was in back in March. That 18-day stay at Fairview Hospital back in October and November really set me back. My doctor told me it could take over a year to get back to normal.

I am on the road to recapturing my condition as it was back in 2009.

The big plus is I do not have to have a colonoscopy now.

Now for the wonderful news. They will perform a double lung transplant up until you are 60. I am now 52. Think of all the strides they can make over the next five years. They could very well find a way to control the rejection. They could also get to the point where they are ready to grow lung tissue in the lab. It is not as far off as people think. They are working hard on this as we speak and they have seen real success in laboratory rats.

The best part of this is the relationship that has developed between Dr. Budev and myself. She knows I have left all my wicked ways far behind me and that I am serious about my health. Each time I get sick I have altered my behavior to account for the stuff I was doing that got me into the hospital.

For instance, last October I was actively participating in the extensive renovations we were doing at our house. It was a big mistake and I will not repeat that behavior again. Besides that, I am not Mr. Handyman. I once was but that takes practice and I am way out of practice.

My long-term goals for my life are centered on writing and music. Two things that I can do now.

I can wait to travel to those places I wanted to go until I get my transplanted lungs some time down the road. The rest of me is in pretty good shape so that could be one, two or even five years down the road.

I am still at grave risk and I have to watch what I am doing.

I will know better in two and half months when I go back for another round of tests.

If it was heart in questionable condition, I would have been on the table right away. But since it is my lungs that are compromised, I want to wait as long as I can before the replacement parts are put in.

I know a lot of healthy people out there might not understand why I am happy about this development. I have already accomplished much of what I wanted to do with my life. But there are still goals that I have yet to reach. These are mostly about writing.

My goals for the rest of my life require time. And I think getting more time is far more important to me than being able to climb a mountain or run in a marathon. I can see why people would want to do those things if they had been doing them all their lives.

Me, well, give me a computer, a guitar and a keyboard and I am a happy man.

 I was going to post a continuation of my 38-day ordeal from back in 2004. In fact, it is six-year release anniversary this July fourth. I will get to that later. I am spending my fourth with family and friends in a pool on this fourth. It is a milestone for me but one I would rather celebrate being with people I love and doing things I really want to do.

Suffice it to say that when I was released on July 4, 2004, I could not even get out of the car over at my sister and her husband’s house. This year I plan to try a cannon ball into their pool.

Advertisements

4 Responses to Something good, something bad and something that may just turn out wonderfully…

  1. Something good, something bad and something that may just turn out wonderfully?…

    I found your entry interesting do I’ve added a Trackback to it on my weblog :)…

  2. Margaret G says:

    Speaking of thrush, I had it about 5 years ago. It looked like white splotches in my mouth and throat. It was quite uncomfortable, like having numerous open sores in your mouth. Supposedly it was caused from using too much mouthwash (I was using it every day), and the doctor said I also had a “weak constitution” which only confused me at the time.

  3. Margaret G says:

    Also, NICE CANNON BALL!!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: