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Archive for January, 2011

They say that every trip begins with one small step. My road to heart transplant began last week. A brief visit to the pulmonologist. Aside from the medical drama I discussed in the last blog, there was one high point to the visit. Remember when I told you that the pulmonary nodules were stable? That also means that my pulmonologist cleared my lungs for a heart transplant. The first of many hurdles to overcome. This is a major victory or sorts. In 2007, it was the state of my lungs that ultimately disqualified me for a heart transplant. Not this time.

The next step in the process happens next Wednesday afternoon. I have been scheduled for a test. It is called an “MVo2”. The test is rather complicated. I am including a link to a site that explains it wonderfully. Basically, the patient rides a stationary bike, while hooked up to a breathing machine. The breathing machine is hooked up to a computer, and before you know it, it gives you a value. http://www.chfpatients.com/tests/vo2.htm

While each transplant facility has its own guidance for transplant, the guidance at most places is similar. If you score higher than 16, you probably don’t need a transplant yet. Please notice I said probably. In medicine, and especially in heart transplants you must leave room for variation. Nothing is exact. At the transplant hospital I will go to, the number to beat is 16. I have had three of these tests in the past. In 2006 and 2007 I was under the care of Dr Kwan at the Methodist Specialty and Transplant Hospital. My test results back then were 8, 8, and 9. I was only able to produce half of the value most doctors want to see before they will do a transplant. That is very poor heart function.

By all measure, my heart was failing fast. Well, as avid readers of my blog, you know the rest of that story. So let the journey begin. Again. The first step was a success. The second step next week will be a mixed bag for me. If I score low, as before I will again clear a hurdle toward heart transplant. But what if I score too good? Will it be back to a life in limbo? Not healthy enough to enjoy all that life offers, yet not sick enough to get the transplant. To tell you the truth, I am hoping for a low number. I want to get a transplant, and get on with the business of living.

Yes, every trip begins with one small step, and every heart transplant begins with three small letters and a number. MVo2. I’ll keep you posted.

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I went to see my Pulmonologist yesterday. The results of the CAT scan is in. In times past, I would get a call from him and go over the results. Not any more. Obama care says that he needed to increase his patient count. So, I went in to see him and get the results. The pulmonary nodules are still there. In times past, the prudent course of action was to have a cat scan every six months; just to keep an eye on them and make sure they don’t start growing again. Not any more! Obama care says that if the nodules have been stable for 2 years…forgetaboutit. No more cat scans, oh that is unless it turns to cancer later on, and then only if I am clued in by the fact that I am coughing up blood.

As long as I am seeing the pulmonologist, I may as well ask him a few questions. Oh, I have a good one for him. Doctor, how come I feel out of breath and tired despite the fact that the reading from the machine on the tip of my finger registers very good? You know the machine. They have a clip that they put over the end of your finger. A moment later it reads a number. He said it was my hearts’ fault. That although my lungs were fried from years of smoking and living in smog, it was your heart that was causing all the trouble. Funny, I am pretty sure the cardiologist told me it was my lungs that were the culprit. Last year the cardiologist did a right heart cath. That is where they check the stuff on the right side of your heart. They also check lung pressures with right heart caths. Right sided heart pressures were good. While I don’t remember exactly, I am leaning toward the memory that is telling me that the lung pressures were not so good.

I think we should put the cardiologist and pulmonolgist in a boxing ring. Let them slug it out until one of them admits that the organ they are responsible for is causing all the problems. Wouldn’t that be great? Well it would have been years ago. Obama care says that is they can only fight if they agree to use each other as a patient count.

Sorry I digressed so quickly. It kind of snow balled. Thank you for your indulgence. I really did have news about my heart, lungs and what it means for a heart transplant. Stay tuned. I’ll get you that in the next entry!

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Two weeks in a row. It appears my worst fears may be closing in on me. I have been working out for the last two months. In the last two weeks my work-outs had to be stopped twice. Exercise was causing too much chest pain. I needed nitro’s to control the pain. Once taken, the balance of the work out session was futile. For the last two months, I have diligently worked out according to the instruction given me by the cardiac rehab nurses. I go to the sessions. I work my ass off. I push myself as hard as I can. All in the name of “de-conditioning”. We talked about this before, didn’t we. I walk a wall between getting conditioned and falling off the wall and into a hospital bed. It is, a precarious perch I sit.

I had a long talk with the lead cardiac rehab nurse this morning. We will make adjustments in the work-out regime. Their normal course assumes a patient who is recovering from a heart attack, by-pass or some other insult. It assumes that the worst is over, and the goal is to regain strength and good health. For me, a different tac is required. You see, unlike the others, the worst is not yet upon me. The goal for my work-out is to be conditioned enough to survive a heart transplant. Period. I don’t need to jog a 5K. Nor do I need to lift a hundred pounds a hundred times. I just need to be strong enough to survive surgery.

With the new goal in mind, the new format was developed. I will slow down on the tread mill. Longer is better than speed. I will do other exercises too with smaller weights, and build endurance through repetition. Let’s try that for a while and see if we can keep the nitro’s in my pocket and out of my face!

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Love. Family. Friends. Peace on earth. Ok, I get it. I believe that most people would put love, family and friends on or near the top of any list whose title has in it best things ever… But putting those things aside for just a minute, a word that needs no introduction: HOPE. Hope is among the best things one can keep. For most of the first decade of the 21st century I never considered hope. Hope never crossed my mind.

In fact, I lived most of the past decade in despair, with the realization that there was no hope, and I would not live to see my next birthday. Even after Denise threw away all the drugs, and got me out of hospice, I felt no hope. My visits with the heart transplant doctor derived the similar result. Despair and sadness. The hope in my life was gone.

A year went by since leaving hospice, and I saw another birthday. So what! Another year goes by. I still can’t take the garbage out, or walk around in a store. And yet another year comes and goes. What’s the deal? I was supposed to be dead years ago, and I am still here skulking about. Hmm. There still is no hope in my life because I have been told for years, by many doctors that I am dying. Sooner than later. Yet I am still here. Last month I started a cardiac rehabilitation program. For those of you who follow the blog, you’ve read that I have been getting better, nearly every week. Today, I had the tread mill set for 3.0 and walked for ten minutes. Then, if that wasn’t good enough, I did all my weight exercises with five-pound weights. A truly Herculean accomplishment. A couple of hours later I joined Denise at the track by the park in our neighborhood. It is a .35 mile track. I did one lap while Denise was doing here laps.

My legs are shaking, even now. My arms too, but I got through it. After more than twenty years of sickness, twenty years of despair, and twenty years of hearing from the doctors that I am going to die, hope re-emerged into my life. For more than two decades without it, hope is back and I must say, it feels invigorating. I may be the last person in the world to offer advise for living, but I do know this: hope is the catalyst for life. Without hope, there is no future, and there is no life. Oh you may exist, but you won’t live. Yes, I am sure – hope is something you need to hang on to: tightly. If somewhere along the road life has misplaced your hope, I hope you can find it, because it really does make life feel so much better.

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