Birth Of A Book – “Am I Dying Yet?”

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Greetings. I needed a break. Posting these blogs every week is not the problem. Reliving these events is mentally exhausting and emotionally draining.  I am increasing the size of the posts.  Making these posts bigger will help us get through them faster. Many of you have shown an interest in my process, and we still have a long way to travel. This is still the first book.

There is a theme you may catch as you read through these memories of mine. “Death”.  Once I left hospice, it took a few years to adjust to the notion that I am not necessarily dying. That shows up more times than I remembered. I say remembered because these posts were drawn from my memory. Soon, these posts will reflect what has happened on the day it actually happened. We’ve nearly caught up with real time. (Real as it was back then.)

Are you sick again!!??

May 15, 2010 by brha99 |

The thing about heart failure is that it is so individual. The symptoms you might exhibit for heart failure may not be the symptoms I would present for basically the same thing. For many people, heart failure shows up as swelling in their legs, particularly low in the ankles. After all, we are talking about gravity. Everything should settle to the lowest point. Right? In addition to swollen legs, some people get fluid built up in their lungs. Backed up actually. That causes the crackling sound. It also makes it harder to breathe. Again, let me emphasize: I AM NOT A DOCTOR. Nor am I a nurse or any other health care professional. I offer this information based on my understanding from the experiences I have had, and the research I have done to understand what’s been going on with me. Research that has been going on for 20 years. Let me also say this: while I am not a health care professional, I have a better than average understanding of medicine. During my time in the Air Force I worked in public and environmental health and taught an assortment of medical and scientific topics to doctors, nurses veterinarians, medical/veterinary technicians at the Air Forces’ School of Aerospace Medicine.

Ok, lets get back to it. My symptoms of heart failure are these: my stomach begins to grow. I build up fluid in my abdomen. Sometimes over a gallon of fluid. I also get fluid in my lungs and swollen lower legs, although the lower leg swelling occurs less frequently. When my gut distends, it becomes difficult to breathe. The fluid pushes up on my diaphragm so breathing becomes a task. That makes me tired. I get weak, tired, out of breath, uncomfortable and my skin turns this nice shade of grey. Denise can tell immediately if I am in heart failure. As 2009 rolled on, these symptoms began occurring more frequently. At first I simply went to my CHF nurse (congestive heart failure). She made some medicine adjustments and sent me home. By the end of the year 2009, my life would once again take the wrong turn, and a new era of problems would arise.

Is this the beginning of the end?

May 16, 2010 by brha99

The new year was here. 2009 was behind us and 2010 smiled brightly ahead. As I always do, I take a moment to that God that I am still alive. That I was lucky enough to spend one more year with my family and friends. My heart failure is getting worse though. I am not sure how much longer I can hold off going to the emergency room. I call my chf nurse. We talk for a minute. I’m told to get to her office so she can better assess me. Denise and I walk in. My gut distended to the point I cannot buckle my pants. I am 20 pounds over my dry weight. Dry weight is the weight determined to be normal for me. It is the number we compare all weights against to determine if I am retaining fluid. My legs too. I cannot breathe easily either. The fluid pushing up against my diaphragm making the motion of breathing a struggle. I am very tired, and of course my skin is a light shade of grey. All of the symptoms. She made a call. A few minutes later my cardiologist came by and examined me. The decision. Lets hospitalize me and get some fluid off. I went in that very afternoon. Medicines began pouring into my veins. I was on a very restricted diet. Only one liter fluid to drink per 24 hour period. That is equivalent to about 1 quart. That is hard. That includes the water I need to drink to take my pills. They track what goes in, and they track what goes out. The difference is the progress we’re making. The first 48 hours showed excellent results. 4 1/2 liters net after deducting for what I drank. By the time I left the hospital; 12 hours later I was 15 pounds lighter. I was discharged, but I was very weak. Taking that much fluid out messes with heart pressures, lung and liver pressures. I was exhausted. I would take a week of rest at home to get my footing back. Over time I felt a bit stronger, but that lasted about a week. By mid February my weight had returned and I was sick as hell. I asked myself as Denise drives me to the emergency room: will this be the year the doctors have all predicted? Is this finally the last chapter?

Can’t the lungs just get along

May 16, 2010 by brha99 

This year is not turning out the way I had wanted it to. I mean look; it’s only February and I am making my second trip to the emergency room. You may be asking yourself at this point, “why do you need to go to the emergency room?” The fact is, I know (pretty much) what’s wrong. Why can’t I manage it from home. Perhaps throw in some support from the chf nurse by phone. And I would tell you that I do. Some weeks I am on the phone with Jennifer (ok, I put a name to my chf nurse…Jennifer) 2 or 3 times a week. Sometimes 2 or 3 times a day. Most of the time that works. The fact is, my health is really on a balance beam. I little too much water…bam. I go into heart failure. The wrong processed food: too much salt and I add 3 pounds of fluid. Too little electrolytes (sodium and potassium) and my heart starts jumping around. That also makes my blood pumping even more inefficient. Any one of a hundred combination of things can swing my health left, or right. It doesn’t matter which way. I am still going to fall of that balance beam. Staying out of the hospital is a full-time job for both me and Denise. We watch everything and we do all we can to avoid it. Sometimes, like today, as Denise drives me to the emergency room, I fell off the beam. Sometimes I need help getting back on. Does that make sense?

So, we get to the emergency room. I get checked in, again. The usual players in the saga are there. They all come up to me, as they discover I am there to say hello. Bob is here today. You remember? My personal emergency room nurse. Not really, but he is very helpful to Denise. As they begin the assessment process a discovery is made. This time my lungs seem to be the primary culprit here. Your heart and lungs work closely together. If one doesn’t work right, the other organ may be affected. The pressures in my lungs are not right. That is causing a back up of blood in my heart, and further backing up fluid in the rest of me. This hospitalization is going to hurt.

Sometimes, hospitals hurt

May 17, 2010 by brha99 

I was right about this hospitalization hurting. They began by giving me a diuretic to pull some fluid off my lungs. Well, it was working, but while taking fluid, it also put my electrolytes off-balance. That made me have many more arrhythmias than I normally have. While we are on that subject, how many skipped beats or pvc’s would be considered high numbers. Ten a day? Perhaps 10 an hour? How about 10 a minute. That sounds like a lot. I average about 15 pvc’s every minute. That’s over 1,000,000 pvc’s in the last 4 years. The defibrillator/bi-v pace maker keeps track of such things. That is one of the reasons I am in the predicament I am in. When I throw a pvc, my pace maker stops working. I don’t understand the details, except to say that because of the many pvc’s I only get therapy from the pacemaker 70 to 80 % of the time. I also risk an increase chance of v-tac, as pvc’s running simultaneously could convert to v-tac. So, back to our present hospital course. When you electrolytes are low, they add them. In my condition they add them intravenously. That’s the pain. Potassium is very caustic. It burns as it hits your veins. You can feel the burning and stinging through each cell as it enters your body. So painful. They stop it. Flush the IV line and begin again. Still too much pain. They try diluting it. A bit better, but now it’s taking too long to get into my body. Finally, a doctor told the nurse to find a large vein. That apparently makes it tolerable. They used one of the veins in my neck. At last, the potassium is going in, with no bad side effects. Once in, my heart began to relax, and I could continue to get fluid out of my body. As soon as the doctors felt my lungs were dry, they began giving me inhaled steroids. That, in conjunction with the continued fluid extraction got me feeling better again. You might imagine, that after an ordeal like this I would be tired. I was discharged from the hospital after 4 days. I lay at home, weak and fragile from the therapy. It would take a week to regain my strength. As lay there my mind wanders. Will this ever get better? Is this how I will die?

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