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Archive for June, 2011

I met with my cardiologist this morning. You might not have been aware, but I was hospitalized last week with chest pain. Turned out to be no big deal, but sometimes you just can not take the chance. Oh I have though. Many times before. Sit at home….popping nitro’s like they were candy. Riding out the chest pain because for me, the chest pain is always the same old thing. I know myself well enough to tell the difference between a nuisance chest pain and real problems. The pain I was experiencing last week was different from normal. I was concerned, so I went to the emergency room.

ALL OF YOU:  LISTEN UP! ALWAYS GO TO THE EMERGENCY ROOM IF YOU ARE EVER IN DOUBT ABOUT YOUR HEALTH.

Anyhow, the doctor and I talked, yada, yada, yada…and I asked him if it was reasonable to take another run at a heart transplant.  He said yes. He will make the necessary arrangements. But…he cautioned.  “You do know that transplants are not a cure. Heart transplants exchange one set of problems for another”. Sure, I will have a good ejection fraction. Yes, yes, I won’t have coronary artery disease. By the way, I will have a more active life. Sounds good, doesn’t it? It is, but it comes at a high price.

For starters, they dial down your immune system. I mean way down. You become susceptible to all manner of infections. They do this to control rejection.  Your body may not appreciate the fact that a foreign heart is now in your chest.  Teeth not in pristine condition?  Out they come.  Regular medicines like steroids and other goodies must be taken. Side effects may not always be pleasant. Oh, did I tell you about the heart biopsies done through your neck periodically? One last thing. Death. Death is usually considered more of a problem than being sick. I have found some interesting survival statistics, courtesy of MedicineNet.com.

In the new study, published online Aug. 24 in the journal Circulation: Heart Failure, U.S. researchers analyzed data from 26,706 adult heart transplant patients included in the United Network of Organ Sharing Registry. HCM patients account for about 1% of all heart transplants performed nationwide.

One year after transplant, the survival rate was 85% for patients in the hypertrophic cardiomyopathy group and 82% for those with other heart diseases. The survival rates were 75% and 70%, respectively, after five years, and 61% and 49%, respectively, after 10 years.

I have, among other things, “Dialated Cardiomyopathy”, “Coronary Artery Disease”, “Cardiomegaly” and Emphysema”. That means that Eighteen per cent of the group I am in die in the first year. Thirty per cent are dead within five years. More than half are dead within ten years. A huge risk considering the outcome I am hoping for is a chance to take steroids for the rest of my life, and periodically have heart biopsies.

The one question transplant cardiologists weigh is this: will my patient have a better chance of survival with the heart transplant?  Secondary concerns include quality of life issues. Considering doctors have been attempting to brand an expiration date to my but for years now, I am thinking (hoping really) that the transplant doctor will agree to transplant me.  By the way. For those of you who read my book: yes! The transplant doctor this time is the same one from the book. Dr Kwan. I told you I trusted him with my life once. I am going to do so again. I’ll keep you posted.

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That is the way it feels for me today. After three long years sorting out an indescribably unfair insurance and Medicare issue, all pieces of the puzzle are in place. It is time to make my run for a heart transplant.  Let’s review the list again.  MVo2 test FAILED… Check. Cardiomegaly (enlarged heart)…Check.  Poor ejection fraction…Check. Severe Global Hypo-kinesis…Check. Oh, I am sorry. I threw a new term at you.  Hypo Kinesis is a term used to describe movement. In this case “Global” means entire heart. “Hypo”  the opposite of hyper, meaning very slow or non-existent. “Kenesis” means movement.  Severe global hypo-kenisis means my heart doesn’t move like it should. My heart won’t pump blood as intended.  Ok. Lets get back to the checklist, shall we?…Medicare in order. Check…Supplemental insurance in order…check.  Set up the consult for my first visit to the transplant team…pending.

My cardiologist must first send a consult to the transplant guy and ask him to determine whether a transplant is warranted.  I have been through this process once before. I am confident that the transplant will be warranted. The question remaining is, of course, will the transplant cardiologist accept me into the transplant program. We talked about that a couple of months ago. I won’t bore you and go over my anxiety issues once again.

This time is a mixed bag of emotions. For my wife as well as for me. Getting the transplant…finally getting the transplant after all this time gives me cause to take a deep, replenishing breath. Seldom is a person confronted with a situation which is both frightening and inspirational.  I am there. So excited, yet scarred with trepidation left from the previous run for the transplant. My spirits are all positive. I am working hard to keep all of my thoughts and energy positive. Let there be no negativity in my life. Not now. Not for a while.  My plan is to record all  that is happening to me and my family during this process. When it is over, whatever the outcome, there should be the sequel to “Death:Living To Talk About It” .  I think I will call the next book, “Road To Transplant”  What do you think?  Post your suggestions on the blog.

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You may remember me telling you about cardiac rehab. I have been working to get myself in shape to take a run at a heart transplant this summer. While I am always deconditioned, I am working diligently to become as un-deconditioned as possible. I don’t know if that is really a word, but do you get my drift? So for the last few months I go to BAMC every Tuesday and Thursday mornings…early and participate in the cardiac rehab program. Over the last few months I have been in the hospital twice. Both times for heart failure. Once we threw in COPD exacerbation…just for the fun of it all.  Hmmm… Is there a correlation between exercise and heart failure? Generally the answer would be no. For me, however, maybe. So shortly after the last time I was discharged from the hospital, I decided to take a break from cardiac rehab. Maybe all that exercise was making me sick. Maybe all that exercise was tiring my heart too much. Maybe. Just maybe.

The past month was uneventful. No runs to the emergency room. No extra trips to the doctor’s office. No phone calls to my heart failure nurse. Could it really be true?? Could the exercise I was doing cause a sick heart to be sicker? Maybe. But I cannot use that as an excuse for becoming even more deconditioned. Deconditioning is one of the primary culprits I must fight in my run for a heart transplant. So after a three-week break in the exercise program, I am back at it. I began this past Tuesday. I am here Saturday morning, and my legs feel like jelly. I can barely walk. My weight is up three pounds from a week ago. My hands feel thicker.

WAIT A MINUTE!! What is the big deal with a three-pound weight gain? Why shouldn’t I feel sore? I just started my exercise program. Most people feel sore. I know… I know. My dilemma is sorting out the normal aches, pains and fluid retention, from those issues that are directly related to heart failure. Admittedly, the line between normal and sick is a blurry line for me sometimes. A three-pound increase in weight over a week’s time is no big deal for most people. For me too, except that three pounds can quickly escalate to five pounds, then ten pounds. Before I realize what has happened, I could be in the hospital again; the doctors working to remove said excess fluid with drugs.

So what is a guy to do? I can’t stop my exercise. With less than a month until I can take my shot at a heart transplant, I cannot stop the exercise program.  I am going to do the only thing I can do at this point. I need to be extra careful about what I eat.  I must be careful to limit the processed food that comes my way. Far too much salt in those foods. We all know that salt, while tasty, is the enemy. I have to limit my fluid intake. This is particularly difficult, as the temperature in South Texas has been edging around 100 degrees for the last couple of weeks and there is no end in site. I have to remember to take ALL of my pills. I think if I do all those things I can avert another trip to the hospital while simultaneously exercising.

Maybe I can stay out of the hospital…Just maybe.

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Isn’t it curious that the medical profession is the last stronghold of a language long since extinct. Yes, I am referring to Latin. But wait… You say that is not the only thing that is still creeping around within the walls of the medical profession. What else could there be? Lets see…??? Well, we know the medical language is saturated with Greek, French and English. Add to that the ancient art of speaking Latin, and what do you have? Well, I don’t know either.

I do know what you don’t have. Communication between doctor and patient. How often have you gone to the doctor for a problem, maybe asked the doctor some pointed questions; then left the doctor’s office more confused than when you walked in?  Well, you are not talking to me now, so I will surmise the response. You said, “a lot”. It happens a lot. I have the opportunity to speak with many people at the hospital. Some are patients, some are waiting for patients and some work there.  At some point, the notion of not understanding what the doctor said will almost always come up.

The thing is, you can’t always blame the doctor. Successful communication always requires at least two people. We as patients must do our part in the communication process. You need to learn to say these words: “Stop please. I don’t understand what you are saying. Please explain this in simple, plain English”.  I know that some of you are out there proud of your ability to understand the things around you. Proud of the education you may have received. You are savvy in the world around you. I have some advise for you.  SUCK IT UP BUCKO. If you want to know, I mean really understand what the doctor is telling you, then you must admit that you don’t understand a thing they are saying. Oh I caught the thing they were saying about putting something up somewhere. I will find out for sure what he means when I arrive for my next appointment.

It appears that in this society of fast paced electronic communication, only the discussions between the doctor and their patient remains as evidence of  personal communication. And that last refuge for communication is clouded with words and phrases so complicated that only one of the two parties communicating can understand. Be part of the communication process. Ask questions. Ask lots of question. As many as required until you feel comfortable knowing everything that is going on. Don’t allow your visit to be as empty as the alimentary canal of prisoners after a 30 day hunger strike. Ask Questions.  We’ll discuss the superfluous redundant pleonastic tautologies of politicians another time.

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Next week I will be talking to a group of people within a business who smoke. For some odd reason, a person in this company thought I might be the person with the life experiences necessary to get these people to stop smoking.  I want to try some material out on you. Tell me if this will work.

Cigarettes make you stink!

Cigarettes make you cough!

Cigarettes make you dead!

Do you think I will hurt their feelings? I don’t care.

For those who don’t know me, let me say this; that I smoked for nearly 50 years. I smoked until the cigarettes literally killed me. I smoked even when the doctors said not to. I smoked despite the fact that if I smoked, I would be denied a heart transplant. I smoked, and smoked, and smoked, until my lungs could smoke no more. Until my heart said enough. Until my son, so angered at my self-destructive behavior, began to despise me.

So you say that you can’t stop smoking?  So you think you are young and indestructible? I know. I felt that way too. Right up to the day the oxygen service brought my first delivery of bottles. You want those little tubes up your nose for the rest of your life? You want to feel like you can’t catch your breath – all day long? Do you want your breath to be offensive to every one with whom you speak? Do you want heart disease so debilitating that you can no longer play with you kids or grandkids? Do you want the last half of your life to be a series of doctors appointments and hospital stays? Well, if you really want that, then light up. If, however you are a smart as I think you are, welcome to Brians’ smoke – free society. There is lots of good help out there. Get help!

George Carlin once said  (paraphrasing) “Cigarettes are the only product, that if used as directed will kill you”.  What a smart guy. Be smart too. Stop smoking.

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