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Archive for May, 2011

I wrote about my hospice experience in my book, but only just at a glance. As I gather my thoughts together for the next book, I thought I would share with you the thoughts and feelings of my three-week stay in hospice. It was September 2007.  Our bed was dismantled to make room for the hospital bed. An air bed was added for Denise to sleep on. She could have used a different room, but she wanted to be with me. The doctor and nurse went over the instructions with Denise, gave her the medicine and left.

How am I supposed to behave in hospice? Am I allowed to go to the living room and watch TV?  Can I take my meals with Denise at the dining room table? The only thing I knew for sure: my job was to die, and that the hospice doctor left a lot of drugs. Oxycontin for starters. Xanax and some sleeping pills were also left. For those stubborn days I had morphine in both tablet and liquid forms.

Everyone thinks that when they are confronted with the reality of dying that they would put on their stoic face. I don’t know that I was conscious enough to make a conscience decision. From the first day in hospice, the doctor gave me my first home dose of morphine.  That was it. My brain was put to sleep. Oh I had moments of clarity I suppose. I just don’t remember them.

My only memory of being in hospice was lying in the bed, and listening to classical music on the radio. I have no memory of any other part of hospice. I was told that my children visited, but I cannot recall a single visit. Apparently my grandchildren came by too. That was why we chose home hospice, right? It makes it easy for people to visit you and, with luck will give the patient a comfortable surrounding by which to die. I do not remember any visits from anybody! I can’t remember eating, washing ( or being washed), going to the bathroom…ANYTHING!!

At some point, Denise had decided this hospice thing was not for us. She packed up all of the drugs, packed me up and we went to the doctor’s office. She gave back all the drugs and told the doctor that we had had enough of hospice and their drugs. We’ll go through whatever lies ahead without that type of help. Over the next several weeks, I didn’t die. Imagine my surprise when Christmas 2007 came and I was still alive.

Over the next several months I finally came out of the cloud of drugs I had been on.  I commented to Denise that this hospice thing was the biggest waste of  three days we’d ever experienced. She corrected me: Brian, it was three weeks, not three days. Hmm. Time does fly when your drugged up and dying.

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May 30th is Memorial Day. This is the day when we as a country set aside some time to remember those who laid down their lives in the service of their country. As I am retired military, and have people in my memory who are no longer with us, this day is very special to me.

Far too often, I get caught up in all the things that I do, writing about my health issues, getting the word out about my new book that talks about my health issues and all the other peripheral activities that go with it. This Memorial Day, we need to stop what we are doing and take a moment to remember those who made the ultimate sacrifice in the service of their country.

Enjoy your pool parties, bbq’s and pic nics. Enjoy the company of your brothers, sisters, aunts, uncles, cousins, mothers and fathers and friends. Do all the things you usually do on Memorial Day.  I have just one request: while you are doing all of the things you do, take a moment to remember all of those brothers, sisters, aunts, uncles, cousins, mothers and fathers and friends that are no longer with us. ALSO…pray for the safe and swift return of all our loved ones currently serving around the world.

Have a safe and peaceful Memorial Day.

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Getting a heart transplant is going to be busy. Last time we went through this, we spent time nearly every week day at the hospital. Test this, check that. Busy, busy,busy…  But what does a guy do before the heart transplant process begins in earnest. Well, I just hang around. Usually at the cardiac rehab office. Only twice a week. Oh, and then there is the inevitable visit to the emergency room. I am on a record-breaking pace this year. Two times in as many months. But mostly, I have time to think. Too much time to think, I think. Let me shared with you the thoughts of someone waiting to take a shot at getting a new heart.

One of the thoughts that crosses my mind a lot is ,”what if the transplant guys don’t think I am sick enough?” That runs through my mind nearly every day, and while I do not wish bad health on me, being turned away because the doctor thinks I am too healthy scares me. Imagine living a life where most normal activity is forbidden to you. You cannot do the things that you used to do. Now, the doctor tells you that you are not sick enough for a new heart. We’ll watch you, and perhaps sometime in the future we can help you. This is the one thought that haunts me. Terrifies me even. Too sick to live life, but not sick enough to get help. Is it too crazy to hope I am just sick enough? I  pray to be healthy. I pray to be sick enough for a new heart.

The second thought, far less sinister is the notion that I would qualify in every way for a new heart, except my liver or my lungs disqualifies me. This is still a real potential deal breaker. Last year, I was evaluated for liver failure. Doctors pretty much dropped the ball on it. The answer is still unknown.  I have heard the doctor mention cirrhosis. Do I have it? If so, is it reversible?  And those pesky lungs. The military doctor told me the nodules are no longer an impediment to transplant. I still have days I can barely breathe. I still spend more than 12 hours a day hooked up to oxygen.

With all these thoughts rolling around in my head, I wonder; do others in my situation think the same way I do? Maybe that is why they insist on the patient seeing a shrink during the process. I am excited at the prospect of getting a heart transplant. I am keeping a positive mind-set and I am doing all I can to prepare myself for the trials that lie ahead. But I wonder…

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For those of you hanging on pins and needles after the episode about going to the movies or the emergency room, let me just say, I went to the emergency room. It was just too much trouble to breathe, and you know how fond I am of breathing.  The doctors call it a CHF exasperation.  My bad. Must have been a Freudian slip. The word is exacerbation. The thing is…it make you complETELY EXASPERATED!!!!! I spent the better part of four days hanging out in the ICU with a bi-pap machine on my face, and having diuretics pushed in my veins. For those of you who are unfamiliar with a bi-pap machine, perhaps you’ve heard of the c-pap? It is used to help with sleep apnea at home. Bi-pap is kind of like a c-pap on steroids.

While they worked on getting the fluids out of me, the cardiologists decided I should be on Plavix. Sounds reasonable. Except I am allergic to Plavix. I break out in a rash all over my body and itch like crazy. Now I had a doctor a couple of years ago tell me that I needed to be on Plavix. He insisted.  That is when I found out I was allergicc to the stuff. So after an all day session at the allergy/immunology department getting desensitized to Plavix, I was on it. And it worked good too. For nearly a year I took this medicine with no problems. Then, about 6 months ago during one of my stays in the hospital, one of the doctors took issue to me being on this drug. I was already on coumadin and aspirin. I didn’t need the Plavix.  Over kill he said. So he took me off of it.

The thing about the desensitization is that if you miss a single dose, the magic is over. Just like that. I was done with Plavix.  That is until last week when someone decided I needed to be on it again.  Can you guess what I had to endure to get back on it? Yep. Another desensitization regime. Right there in the hospital. Mind you now it doesn’t hurt, and it shouldn’t cause a reaction. It just tastes terrible. So now, a daily Plavix is part of my routine. I just better make sure I don’t cut myself, or bump into anything, or get into a little fender bender. From now on, what may be considered a minor injury by most, could become a life threatening situation for me. Cumadin at high levels, aspirin at low levels and Plavix at normal levels is a blend that will make it difficult to stop bleeding. From now on, “careful” is the word of the day.

Four days out of the hospital and I am just now getting my strength back. I don’t do much. Denise and I sit in the back yard, admire our garden. It’s a great garden. I will get some pictures and put them on Facebook in the next couple of days.. It is still difficult for me to breathe. That will take some time. I go to the front door to get the mail and by the time I make it back to my seat, I am winded. 

I think I am seeing a trend in my health. Two trips to the emergency room in two months!!  I may be seeing a lot more f these trips while I bide my time toward a new heart. I’ll keep you posted.

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We’ve covered lots of information so far. There is still a long way to go.  In previous blogs, we briefly touched on the concept of rejection. “PROVISO ALERT” . There may be medical professionals out there reading this blog. You may be saying to yourself that I am wrong. Well, if I am, it’s your fault. I am explaining the things that were explained to me. If it isn’t exactly accurate, I am sorry. It is, however the way I understand the truth to be. If you want to chime in and correct something, PLEASE DO.  I welcome all constructive comments.

Rejection –  According to the University of Maryland Medical Center:

Definition of Transplant rejection:

Transplant rejection is when a transplant recipient’s immune system attacks a transplanted organ or tissue.

Causes, incidence, and risk factors:

Your body’s immune system protects you from potentially harmful substances, such as microorganisms, toxins, and cancer cells. These harmful substances have proteins called antigens on their surfaces. If your immune system identifies antigens that are foreign (not part of your body), it will attack them.

That’s simple. The hard part is figuring out a way to get your body to accept the new organ.  They do this by turning off your immune system.  Of course they don’t actually turn it off, but they come close. They make it nearly impossible for your body to attack the foreign material that is now in your body. On a regular basis, biopsies are done on the new organ to help identify potential rejection.

This is perhaps one of the most dangerous periods in a transplant recipient’s life. As your immune system is “off”, many opportunistic diseases may make their presence known.  Things that your body might normally shrug off, now turn into pneumonia, or other infections.

In time, the doctor will begin strengthening your immune system (turn it back on). Eventually you will be just shy of normal.  There are medicines that must be taken for the rest of your life. Medicines that will help you cope with a “less than optimal” immune system.

But wait. What if your body has some other ailment that requires an immune system to keep it at bay? Well, I am not a doctor, but it seems that two options may be in play here. First, if the condition is chronic,and cannot be cured, that might be a deal breaker. You can’t get a transplant if they can’t control your immune system. ( I am making an educated guess).  The second tack may be to resolve the problem. Once the problem is solved, you should be able to move forward. That is one important reason they screen transplant candidates so carefully.

Ok, my goal for this series of three blogs was to give you a little insight going on the road to a heart transplant. Hmmmm. That sounds like a good title for the next book. “Road To a Transplant”  Maybe.  As always, please make your presence known and comment.

 I hope you’ve enjoyed the blog. Look for the continuing escapades of me, a really sick guy. I will keep you posted.

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As we’re sitting at the table having lunch today, my wife Denise and I were discussing a wide range of topics. My grandson’s kindergarten play this evening, the Lady Gaga Monster Ball on TV,  and of course how we are feeling. When it was my turn I told her: the medicine hasn’t seemed to be working the last couple of days. I have increases episodes of chest pain, my weight is up more than 12 pounds in the last week, and I can’t really breathe because my abdomen is full of fluid. A brief silence…then casually after chewing and swallowing her food she replies, “So which will it be this afternoon? Tthe movies, or the emergency room”?  I began to laugh. Then she broke out laughing too.

Living with chronic health problems often times forces you to make decisions like that. The decisions are hard sometimes. Remember, the moment I walk into an emergency room I get two catheters (ouch!!) and will probably be given some medicine that will make me sick and give me a huge head ache.  Then, when I get admitted to the hospital. (I always get admitted) I will be restricted on how much fluid I can have, be given IV meds that will make me lose fluids, and my electrolytes will most likely get out of balance, causing great pain, muscle cramps, and potentially the big daddy of pain…potassium through the veins.

So what will I do? I don’t know yet. I am waiting to here from the cardiology nurse. If I can pump up the home meds, I will try that. If not, I guess I will go to the emergency room.  Synchronise your watches.  It is 12:24 pm cdt. If I don’t hear from the nurse by 2 pm, I will go to the hospital.  In the mean time, I promise you part 3 of the transplant stuff. It’s almost complete, so I will publish it before I go to the hospital.

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As I said in part 1,  getting a heart transplant is complicated. We discussed two tests, either of which will continue the process should your body fail them.  If your body passes either of those tests, the chance of transplant diminishes significantly. There are more criteria though. Much more. Lets continue looking at what it takes.

As you might imagine, all of the major organs are examined. Liver, kidneys, pancreas, stomach, intestines, eyes, brains…stop please. Lets talk about the brain for a moment. When evaluating the brain, doctors not only consider its general health, but its mental capacity. In other words, doctors want to know cognitive skills. Why would a person need to understand what is going on? I’m getting a new heart. That should be enough, right?  WRONG. Actually, when you get a new heart, the doctors will tell you that you are not becoming healthy. You are simply exchanging one set of problems for another. Sure, you will be able to do more than you used to. Yes, yes, you will certainly live longer ( usually), so what is the big deal? You need to know that the set of problems you are asking for may be life threatening at times. We’ll go into rejection in another blog , but for now, rejection can kill you. You must understand the process and symptoms so you may seek help quickly. You need to know that the moment you have a heart transplant, you set in motion a “life clock”. One that begins to tick the moment the doctors get the new heart beating in your chest. Getting a new heart is a life saving procedure, but it is full of surprises and intracacies that one must understand. Bottom line: If you can’t understand all the issues of getting a new heart, you probably won’t get one.

That is one aspect of brain functionality. You must also prove you can manage a sometimes complicated medicine regime. No sense in giving a heart to someone who doesn’t understand how to take their medicine.

Most other major organs are self-explanatory. Why would you give a new heart to someone with liver disease, pancreatic cancer, or other significant problem. I am not saying you can’t get a heart transplant.  What I am saying is that those issues will need to be resolved before you can get a new heart. Take my case.  I was removed from the transplant list in 2007 because I developed bi-lateral pulmonary nodules.  Multiple small masses in both lungs. Biopsies were inconclusive, therefore the transplant guys said no transplant. Now however, the nodules have either disappeared, or have been stable for at least three years. My pulmonologist believes that my lungs are ok for a transplant. I still don’t know if the transplant people will share his enthusiasm. We’ll see.

Something I don’t think many people think about when considering heart transplants is teeth. Oral hygiene and generally good healthy teeth are very important. That was a lesson I learned in 2006 when I was first being evaluated for a heart transplant. My teeth were in average condition. Not bright white, but not rotting out of my mouth either. Not good enough says the doctors. All my top teeth had to go. My bottom teeth got a reprieve. You see, when you get your new heart, doctors “turn off” your immune system for a while. Not actually turn off, but for our conversation, lets use that phrase. They need to do that in order to give your new heart a chance to beat rejection. Slowly and methodically the doctors crank up your immune system. During those first six months, the new heart recipient is vulnerable to infection. Very vulnerable. Doctors look at all the angles where germs (bacteria) may hide. Your teeth is the perfect place. Your gums and teeth must be in excellent condition, or they just have got to go.

In 2007, once I was removed from the transplant list, I gave up on life. I was certain I was dying. Not just me, hell, I was put in hospice. Everyone thought I was dying. Consequently, I suspended dental hygiene practices for my remaining lower teeth., Slowly though I realized I was not dying and by the summer of 2008 I was weaned off of the drugs, and getting my footing for life again. unfortunately it was too late for my bottom teeth. I regret to say that they will have to go once I get back into the transplant system. That is ok though. I plan on getting implants as soon after the transplant as possible.

I thought I could tackle this topic of transplants in just a couple of blogs. I cannot. There is still much to discuss. Stay tuned for part three next week, and as always, chime in if you have something to say.

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