Last night, as I was drifting in and out of a fitful sleep, I suddenly felt a strong tug on my air hose…

By Christopher Green

I keep the Oxygen concentrator in the middle of the house so I can access every room in the house without any real restrictions. I closed the door last night because I just didn’t want the cats barging in and disrupting what I thought would be a deep sleep.

I took an Ambien and a Flexoral about an hour earlier, so that the ache in my back would not interrupt my sleep. Nevertheless, I was tossing, turning and gyrating as the big day weighed heavy on my mind.

The tugging started in at around 4:30 AM. I knew it had to be the cats, but they had never done this before. They have lived with the hose trailing behind me with the disdain that only a cat can display.

You would think that a hose bopping around the floor would be just too much for cats to take.

Well, after more than 6 years, the hose finally drew their undivided attention. Well, at least two of them.

Now I have heard stories about cats sensing when things were amiss, when people were sick. And after all these years, our cats, Floyd, Fenny, Gretchy and Sylvia, never once let on that they were anything but ordinary lay about cats, content to be petted and fed and showing little more than a passing notice of the humans around them.

But last night, when I was all wound up in knots about today’s tests over at the Cleveland Clinic, I think the cats knew something was up with me.

When I went out to scatter them from my air hose, hoping they would get the message and leave me alone, I found the three siblings, Floyd, Sylvia and Gretchy, gathered in front of the bedroom door. They started doing that dance, mewing loudly enough that I thought they might wake up Laurie.

I stooped over to pet them and they all kind of ganged up on me, rubbing across my legs, dancing around like I was a silver disco ball at some cat dance hall. They seemed a little agitated. It was more than just the pet me NOW that I have come to expect from the cats.

I know they would keep at it and that for all intents and purposes, I was not going to get any sleep if I did not let them in the room with us.

They carefully got into bed with me, quietly gathering around me as I climbed back under the covers. They then draped themselves over me and all three started in with the purring.

It was like the magic fingers on the bed at one of them old no tell motels.

I was soon fast asleep and was able to get just enough sleep to feel somewhat refreshed and ready to face my day of reckoning on the ninth floor of the Crile Building over at the Cleveland Clinic.

I don’t know if they knew I was apprehensive  or if it was just the change in weather that made them want to climb all over me. All I know is they set me in a good mood to face the day.

Brenda arrived on time, right at 7:25 and of course, I was still rushing around trying to get everything in order and hoping I didn’t forget anything. Remember, she worked all night, stopped at home to gussy herself up and then rushed over to get me to the Clinic on time.

I wanted to be on the road by 7:30 so that I could make my first stop, the drawing of the blood, by 8:15. Forty-five minutes is normally enough time. But today, after an all night rain that was continuing unabated well into the day, traffic was not quite snarled, but close enough to ruin our schedule.

Good thing I had a cell phone because we got there almost an hour after we were scheduled.  Then the van Brenda was driving would not fit through the gate at the main parking garage, so we had to back out, and drive around looking for a surface lot. I had forgotten the handicapped placard, so the close parking spot was fortuitous.

Of course, I was starting to lose my cool, so I called the front desk again to ask if they knew where a surface lot was. Turns out, we had driven by it not once, but twice and never considered that a lot right in front of the Crile Building was almost empty.

Suffice it to say, the blood was taken, the Chest X Ray was shot and we finally made it up to the ninth floor for my 6-minute perp walk. This test is designed to see how your Oxygen levels hold up under normal circumstances.

Now as anyone who is following this blog knows, this was large. The results of this test would determine if I was going to be slotted for the transplant program or if I had recaptured enough lung function from ravages of the cocktail of infections that laid me to waste last fall to delay my inevitable place in the transplant line.

So that is why I was getting a little apprehensive over the past week or so.

They were going to do the six-minute walk after taking a measure of my lung capacity.

José, who tested me way back in 2005, was my tech guy today. We talked like we were old Army buddies meeting by chance. It was fun. But it also underscored just how long I have been at all of this.

What you do is wrap your mouth around this nipple that is attached to a device that measures flow strength and capacity. You take a deep breath, blow out as fast as you can, and then slowly work out all the air in your lungs.

There are four basic measurements to see how well the lungs are functioning. I was doing two.

The first measure they take is Forced Vital Capacity (FVC). This measures volume of your lungs and is measured in liters. Back in March, I blew out 2.53 liters. Today I jumped to 3.17 liters. A normal man of my age should have about 4.75 liters. 

They also measure capacity with this test.  This is shown as a percentage. I measured 52.23% back in March and 64.10% today. A normal man my age should measure about 75-85%.

I am still diminished enough to be a candidate for the transplant program, but I am not at the level where they would list me as of yet.

Dr. Budev has been my doctor at the Cleveland Clinic since 2004. We have been down this road before. When I originally came in after my ARDS episode back in June of ‘04, I was a mess. But I was able to claw back to a place where I was a concern, but not in dire straits.

The same thing happened after my bacterial episode from last fall.

The six-minute walk measures how much activity you can handle. For instance, a normal person with healthy lungs should be able to walk 2024 feet in six minutes. I was able to walk 1220 feet today. That means I performed at a level 40% below the result for a healthy 52-year-old man.

Last March, I was able to walk only 1080 feet.

But here is the kicker; the item that stands out for me.  I was able to do that 1220 without any Oxygen. Back in March, I started at zero liters and quickly jumped to 6.0 liters per minute.

Today, my Oxygen saturation was 88%. Remember, this is at the end and with no Oxygen. Back in March, I was also at 88%, but sucking down 6.0 liters.

Big improvement.

In June, I was able to walk 1075 feet, but I was also sucking down 6.0 liters. My saturation was at 94%, but that was because I had quickly dropped below 90% and my O2 had to be increased almost from the get go.

So what does all this medical mumbo jumbo mean?

Simple: I have been working my butt off, literally, by eating healthier, exercising and cutting out all stuff that is bad. Well, what I consider bad. I try not to eat any calories that have no nutritional value.

The good thing is that since I have a relationship with Dr. Budev, she trusts me to keep her in the loop if I should suddenly falter.

That’s why it is so important to have a solid relationship with your doctors. Dr. Sharma, my GP, Dr. Haddad, my regular pulmonary doc and Dr. Budev all exchange information. Since they all work through the network of Cleveland Clinic hospitals, it makes it easy for them to share my medical information.

They have been doing this for years.

It is a key part of the Health Care Reform Act that was passed back in the fall of ’09. There are provisions to help hospitals and other centers share information easily while assuring identity protection for both patients and doctors.

Please think about this before you judge the true efficacy of Health Care Reform. It is just another aspect of the overall reform that is hard to describe in a sound bite or put on a placard at a rally.

Dr. Budev also knows I am totally aware of how compromised I am. She is confident that I will make the right choices.

It also means that since, for instance, the Federal Court in Boston today paved the way for the resumption of Stem Cell research. This is good news because every day brings new technology that can help people in my situation survive something as traumatic as a double lung transplant.

Since they will perform a double lung transplant up until I am 60, I potentially have years before I go under the knife, and who knows what those years will usher in with regards to transplant technology in general and lung viability in the specific.

So what does all this mean for the Blog?

I will continue to post, but since the urgency seems to have passed for the moment, chronicling the mundane is not my style, even though it may seem to some readers that that is exactly what I have been doing.

Postings will be cut back.

I will still revisit health issues as far as my respiratory situation warrants, but I also will continue to discuss my life and the choices I have made that put me in this predicament.

Keep stopping by.  I will make it as interesting as I can.

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13 Responses to Last night, as I was drifting in and out of a fitful sleep, I suddenly felt a strong tug on my air hose…

  1. Linda Hilton says:

    Hi. I see you have had lung problems for 6 years or so? Me too. I was wondering if you went to the protest in Crawford with Cindy Sheehan or to the sept 24, 2005 protest in DC where 6 of the sensors detected tuleremia (rabbit fever) as a biological attack? I did and have been sick ever since then. Lungs. Almost made it to the lung transplant stage but came back. Lung failure twice 6wks in ICU, etc. Just curious if there is a connection. Were you diagnosed with boop? (a rare pneumonia)
    Thanks for any info.

    Linda

    • No where near DC at the time. My situtation was cused by misdiagnosis all the way back, my primary Doc thinks, to when I was a kid. Sorry to hear about your problems. Hang in there…

      • Linda Hilton says:

        thank you. I am doing much better now. It’s been 3 years since my last hospitalization and I no longer need O2 assistance. I remember when they were screaning me for a lung transplant, which I was against, I did hear a lot of cases where people were very very happy with the results and their new lives with their new lungs. I hope to hear that you have the same result.

  2. Joe says:

    Chris, Glad all is going well, and yes, You always keep it interesting

  3. Liz Schulte says:

    Hi Chris!

    I’m so happy to hear of your good news. Hope you continue to improve and stay as healthy as you can.

    You’re so right about the teamwork between doctors and quality of care. As a former cancer patient, I also saw the excellent work of CCF docs working together with patients to deliver the best possible care. I also love how they’re so patient and caring, there. It becomes like a second home.

    Thanks also for mentioning the health care reform act and its important impact in helping create the same level of quality health care everywhere that we get at the Clinic. There have been thousands of docs, researchers, government agencies and patients who worked hard behind the scenes for at least a decade. They developed a great plan with systems to drastically improve our national system of health care delivery. Much of this part of the plan has passed under the public radar (with the exception of the death panel demagoguery), but people will be pleased when they begin seeing the benefits.

    Please keep posting when you can and let us know how things are going. You’re still in my prayers.

    • It is so important to stream line the process. I can attest to the time when different doctors asked the same questions over and over again. Just since I first went over to the Clinic in 2004 there has been a huge step forward in information technology as well in medical measuring so that treatment can be directed exactly where it is needed.

      I know how much you have gone through. I know my mother would probably be alive if she had been born a decade later. This is one of the reasons I have been trying to push back the process as far as I can.

      Thank you for your support Liz, it’s been a long strange trip now hasn’t it….

  4. Larry Durstin says:

    Nice entry. Good news. I like the perp walk and Health Care Reform reference.

  5. Chrys Pfahl says:

    So glad to hear good news from your front! I am working with a great medical team at Metro to get control of my diabetes. Diet and new meds seem to be working, I really want to stay off of insulin and these Drs. are very positive and caring. Keep up the good work you are in my prayers.

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