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Archive for May, 2010

The final word

I told my friends this, but inadvertently left out my other blog friends. I am concluding my blog. A literary agency has agreed to work with me: the goal being to turn this blog into a book, and sell it. Thank you all for your interest in my journey. I am looking forward to the day you can go to your favorite book store and buy my book.

God Bless

Brian

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For the next couple of weeks, I seem to be settling in. A little weight on, then a little weight off. My weight is like a roller coaster. I feel sometimes that I will never be able to gain control of me again. And as I say that…I am on the phone will Jennifer, my chf nurse again. We made some adjustments in my medicines., but the next day I find myself back in the hospital. It is the same routine I go through each and every time. Honestly, I think the folks on the ward are getting tired of seeing me. I know I am getting tired of being in the hospital. Luckily, this stay was only two nights. The got 4 liters off of me very quickly. I went home to rest.

As we round the corner from winter to spring of 2010, I look ahead just a bit. My 56th birthday is just there at the horizon. Now who would have ever thought I would make it to my 56th birthday. Not me. Not the odds makers in Vegas either. ( I’m guessing) I just know that I am so happy to be here. If I could just find a way to stay out of the hospital. Well, that won’t happen in April. Denise and I were driving around, and I began getting chest pain, again. This is nothing unusual. I get chest pain all the time, but this time was different. I did have some of the same pain in my chest, but instead of the pain radiating up my neck to my jaw (the usual route), it was moving up the side of my neck. Well, what the hell? I am back in the emergency room. After cat scans. ultra sound exams and the like, I found myself back in the hospital. Big surprise. They ruled out a blood clot or other artery related problem. The doctor did think, however that at least some of my fluid problem was because of my liver. It may be failing, or it may be early in developing cirrhosis. He didn’t know, but he wanted me to see the liver guy. The referral was made.

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Over the past couple of months we’ve been talking about my health, or lack thereof. As my family and I were confronting all of these trials, one question kept popping up. What should we do if you become incapacitated? What are your wishes? You know, that if something comes up, and you are unable to speak for yourself, your family will have to make those decisions for you. I have seen this first hand. When my father in law was in the hospital after his illness, the doctors told my family that he would never recover. He was unconscious. His brain was, for all purposes, not functioning. He was hooked up to a machine that breathes for him. The doctors are suggesting that they disconnect him. Pull the plug, so to speak. The family, my wife’s brothers and sisters were all very upset. Do this, don’t do this. It was hard. Unless you’ve had to confront this situation, you can’t know how hard. Eventually a decision was made, and my father in law had the machines turned off. Shortly after that, he passed. Why do we put our loved ones in such a precarious position. To have to make a decision to keep you alive or not, all the while, grieving over the impending death of a loved one. It’s not fair, and there is something we can all do. It’s called a DNR. Do not resuscitate order. Actually, it spells out for the reader when to pull the plug, and when to keep you alive. It’s up to the patient. It’s up to you. You decide. You take that agonizing responsibility off the shoulders of your loved ones. In addition to the DNR, you need to have a frank and honest discussion with your family. Tell them how you feel about life and death issues. Let them know verbally what you would like to have done in various situations. It is the most precious gift you can give your loved ones. Perhaps the last gift you give your loved ones. Don’t force them to make decisions about your life. Write a DNR. Do it now before it is too late.

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This new year is really not looking good. Two months past, two stays in the hospital. I wonder if we can make it three for three? It is taking me much longer to recover from that last episode than I thought. I am still having trouble with stomach distention. My doctor decides to do another heart cath procedure. They will be measuring the pressures in my heart and lungs.. Particularly the right side of my heart. Distended stomachs are most commonly symptoms of right-sided heart failure. For me, this would be devastating. The left side of my heart is already very sick. If the right side were to fail…well, let’s just say we don’t want that. I went into the cath lab as I had many times before. Everything was going as planned, except one thing. I get no sedation whatsoever. That’s right. Apparently sedation may have influence over the pressures, so we’ll need to do this completely drug free. Man, I am already hating this. I get prepped, and rolled into the room. It is very cold. I knew that from the other times, except all the other times I was given drugs that made me not care if it was cold. Well, it was cold, and I cared. To help put this pressure thing into perspective, let’s walk through how the blood is handled between the heart and lungs.

The blood comes from the body, to the right side of the heart. The top chamber, the right atrium catches the oxygen deprived blood. The atrium then pushes the blood to the right ventricle. It is at this next interface that the problem may be occurring. The right ventricle gathers the blood and sends it to the lungs for more oxygen. It must push it hard enough to get through the lungs and back to the left atrium of the heart. The left atrium sends it to the left ventricle Then with a mighty 15% ejection fraction of my sick left ventricle..whoosh, the blood, full of oxygen goes out into my body. Each body part along the way has pressure. If the pressures are not in sync, or one is too high or too low, a blood flow problem may ensue. Does that make sense? Well, as it turns out, the right side of my heart has good pressures. My lungs on the other hand..not so much.

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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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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.

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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?

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