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I keep talking about getting out of just one week without drama. It is eight P.M., Wednesday evening and . . . well, all I can say is that this is not the week that escapes the drama. I am so tired of dealing with this. I cannot express clearly enough or with sufficient strength for you to understand how I am feeling at this moment in time. Earlier tonight I felt a couple of sharp pains running through my left thigh. Each only lasted a very brief moment. Maybe a second or two each. Later, it happened again, so I went to my bedroom, got in front of a mirror and dropped my drawers. Yes, I am talking about my pants.

Now it is at this point that I feel compelled to clarify what I am doing. It was not too many years ago that I would do this for fun, however the past decade was difficult, so I try to avoid mirrors nowadays. No. . . no, I was looking at my thighs, comparing them for size. I was figuring out if one leg was larger than the other. So I dropped my drawers and took a peek. I immediately had my answer. (sigh)

So you are wondering what the heck I am talking about? If you are a regular reader of the blog, or had read my first book, you would know that I get “Deep Vein Thrombosis” DVT periodically in my left thigh, and now it seems that I have that again. While a definitive diagnosis requires an untrasound machine or a CAT scan, I know from experience that the symptoms I am experiencing is most probably DVT. And to me, concluding that I have a DVT makes perfect sense.

DVT is a blood clot. I have had a sustained blood clot in more than one vein in my left leg for nearly ten years. The doctors call it a “chronic DVT”. Not to worry. They have treatments for this sort of stuff. Treatment that control or allow the body to reabsorb the blood clot. That is important to know because DVT’s may be life threatening. Blood clots or pieces of blood clots have been known to loosen up and travel. Travel to you brain and cause stroke, or travel to your heart and cause a heart attack, or travel to you lungs and cause a pulmonary embolism. By the way. That has happened to me, and I can tell you with confidence that it is no fun.  Any of those ailments can kill you. But like I said before, they have treatments for that sort of stuff and they have things you can do to prevent them. Well that certainly is good news.

For one thing, you can take medicine to prevent clotting. Things like “Plavix” or “Coumarin” help prevent the blood from clotting. Oh, did I tell you that I was on both, just a few months ago? The doctors agreed that I should be off of them in preparation for the transplant. That move , for me was completely understandable. And, they say you may reduce the likelihood of getting a DVT if you are not sedentary. That is good to know except…THAT IS ALL I CAN DO!!

Let me recap. I have a history of DVT, the doctors removed the medicines that help prevent it, and I am less active now that in any segment of my life. Adding to that, I measured the circumference of both legs for comparison. I used a spot three inches above my knees, then half way between that mark and my groin. In each instance, my left leg was two full inches bigger than the right side. What do you think? A DVT? Maybe. If I’ve learned anything on this journey, it is that there is no certainty in medicine. My home health nurse will be here in the morning. If she thinks it is a problem, I will probably be in the hospital by noon on Thursday.

Ok. I am back and decided NOT to tell my home health nurse. At least not yet. I measured my legs, and they were stable from yesterday’s readings, AND, I have a long history of DVT in that area, and it is not close to being as bad as it has been.

Please Note:  Do not do as I do. If you have or suspect you have a DVT seek medical help immediately. DVT is nothing to mess around with.

That being said, I know that as soon as I mention this, I will be sent to the emergency room, where they will begin an anti-coagulant such as Heparin and do an ultrasound. Then they will compare the readings to earlier images. That for me is a 50 – 50 shot of landing me in the hospital. My son, his three children and his dog are coming over today for a visit and dinner. We will dog sit for him for a week. I will not risk losing one of those moments with my son and grand son’s for this. I have a DVT. So what. I’ve had one for years. I will keep an eye on it and if it begins hurting me more, or my leg  increases in size, I will take myself to the hospital.  Just not now. Not today.

Every week, please join me in saying a prayer for the donors and their families. If you do not believe in prayer, perhaps you could send good thoughts and vibes their way. 

Watch for the new book coming to you in October 2012! Also, look for my Anthology of short stories and poems. A totally fictional, sometimes irreverent look at the world. My target release date  for this book is September 10, 2012. Oh, one last bit of news.  A new book; “Memoirs of the Cold War” is progressing nicely and should be released in the fall of 2013 and a management book dealing with strategic and tactical planning for small businesses is scheduled to be released in the summer of 2013.

If you find yourself not really knowing what the heck is going on, you can catch up. Pick up a copy of “Death:Living To Talk About It” here.    http://www.brianhayden.com/  My book is available in Paper back, Kindle and Nook.

Take some time to go back in the blog..one month…six months…a year or more. My life is spilled all over the last 190 blog entries. I invite you in and check it out.

This memoir is the story of a man struggling with heart failure, and the trials he and his family endured for many years. It is the story which proves that no matter what you do not give up. There IS hope.

               

Last Tuesday I went to go see Dr Kwan, my transplant doctor. As you know, my energy and strength are disappearing – and fast. We began in the usual way. Check in with the money lady, making sure all insurance is still in tact. Then a moment later I was called to the back. A quick step on the scale and off to the exam room. There, the nurse did the requisite blood pressure, temperature, ekg and a lengthy history of the past month, to include a verification of all of the drugs. Once all of that is done, the nurse leaves with my six inch thick chart. A few moments later, the nurse comes back. Dr. Kwan ordered the pace maker interrogated, as well as several blood tests. Luckily, I have this picc line with the extra port. No worries about needles this trip. Or so I thought.

The nurse prepared to draw blood. Getting the syringe and the vacuum bottles aligned, she connects the syringe to the port and connects the vacuum tube. Nothing. She tries again, and again: All with the same results – namely, nothing. She pushed stuff in and it worked well. I could taste the metallic bitterness of the medicine as it enters my blood stream. She pulls the plunger on the syringe. Nothing. Apparently, I am only getting one way flow. I need to have flow both ways: In, and Out. Soon after, Dr. Kwan came in the room.

We talked for a while. He asked the usual questions, and I told him about getting tired and weak quicker lately. I told him of the restrictions to my life I am now facing. After a brief and deliberate pause, he told me that the symptoms I am experiencing are side effects of the Milrinone (the stuff going into the picc line), and the Amiodorone, the stuff I have been avoiding for years. He talked some more and went over the numbers coming from my heart. He told us that, while my heart is very sick, the numbers are now stable, and the other organs are still doing fine. Then he discussed my options.

Dr Kwan said that treating advanced heart failure is a bit of a balancing act. Not enough drug, and my heart gets worse. Too much medicine and I get unfavorable symptoms. Nearly all of the symptoms I have are unfixable, except if I opt for the VAD – Ventricular Assist Device. I have declined this option before. It is called a “Heart-Mate II”. (check it out on-line) Dick Chaney used one before his transplant. It is a last resort measure to stay alive while waiting for a new heart. It is extreme surgery, very dangerous and I do not want it. Dr Kwan then asked which side effect is worse: dizzy from low blood pressure, or arrhythmia’s?  He could adjust one or the other. Not both. That was easy. I can accept the symptoms of low blood pressure happily if that meant avoiding arrhythmia’s. Having chosen my own poison (so to speak, he increased my Toprolol to 100 mg’s). If you will recall, I was at that dose a month ago, but the symptoms of low blood pressure were troubling, so he lowered the dose. I will suck it up and accept the symptoms. In addition, he ordered some medicine called “Cath-flow”. I do not know what it is, but it should help the “in and out” flow problem I am experiencing. The home health nurse will administer that next week.

Oh, that was the good news. Of course a visit with Dr Kwan would not be a visit with Dr Kwan unless there was some of the other. I have been on the Milrinone for more than seven months. That is the medicine being pumped in me 24/7 through the picc line. The cautionary tale that came with the medicine was this: (paraphrasing) – This medicine should not be used more than a year. Longer use may be harmful to other organs. In other words, the longer I use this stuff, the worse it will become for my liver, kidneys and other parts. On that time line, I have only four and a half months to find a heart and get off of the Milrinone.

Now for the not-so-good part. There is an increase in the number of people needing hearts this year, while the number of donors is decreasing. What does that mean? Dr Kwan would not speculate, except to say that the average wait time is six months. Could be longer – could be less. There really is no way to know or predict. He added, that the number of transplants nation-wide is less this year. There are just not enough donors. I do not know what the solution is for that problem. I was listed the week of Valentines day. That puts me at just over four months, but just under eight months on the Milrinone clock.

Last evening I took my blood pressure. 82/52. I knew there was a reason for the way that I felt. Then I stopped for a moment and smiled. I like this symptom much more than the threat of being shocked. Oh yea. No complaints here. Just smiles.

Every week, please join me in saying a prayer for the donors and their families. If you do not believe in prayer, perhaps you could send good thoughts and vibes their way. 

Watch for the new book coming to you in October 2012! Also, look for my Anthology of short stories and poems. A totally fictional, sometimes irreverent look at the world. My target release date  for this book is also October 2012. Oh, one last bit of news.  A new book; “Memoirs of the Cold War” is progressing nicely and should be released in the fall of 2013.

If you find yourself not really knowing what the heck is going on, you can catch up. Pick up a copy of “Death:Living To Talk About It” here.    http://www.brianhayden.com/  My book is available in Paper back, Kindle and Nook.

Take some time to go back in the blog..one month…six months…a year or more. My life is spilled all over the last 190 blog entries. I invite you in and check it out.

This memoir is the story of a man struggling with heart failure, and the trials he and his family endured for many years. It is the story which proves that no matter what you do not give up. There IS hope.

Please do not be upset, but I must say, that more and more I believe my time here with you is quickly drawing to a conclusion. Though it is only three months since being listed, with each passing day I feel more and more that the heart transplant will not come in time.  Adding to the list of things I can no longer do: washing my hair. It is just too difficult now to keep my arms over my heads for more than just a moment. Walking, even the shortest distance within my home is sometimes a struggle, and I fear before long that walking too will be added to the list of things I cannot do.

Adding to the problem, my arrythmias are back, and more frequent than in years. Almost daily, I find myself sitting; my hand over my chest; my head back, trying to calm myself and ease the heart beats. I am scared as hell of being shocked again. Oh, I know that getting shocked saves my life, but it hurts like hell and I would rather not be shocked. For those of you not familiar with my history, since having a defibrillator implanted in 1990, I have been shocked 16 times. Too many times by any measure.

In last week”s blog , I mentioned that the home health nurse said that I might be close to having to go to the hospital while I wait for the transplant. She will be here in the morning, and I am anxious to hear what she says. I am measurable weaker than I was a weak ago.

Well, she was here this morning and she re-stated what she had said last weak, adding, “you have a really sick heart dude.”

On the bright side, the blood work done last week showed that I am not retaining too much fluid, my liver function tests were perfect, and my kidney’s are functioning well. She said that if someone looked at these test results, and did not know anything else about me, they would conclude I were healthy. That is when she followed with that you are sick dude comment.

NOTICE: I am not in imminent danger of dying. I said since starting the blog that I would share with you how I felt and what was going on in my mind. For the last couple of weeks I did feel like this. I fell that way still, this morning as I prepare to publish the blog.

This is going to be short this week. I will finish by telling you that I have pulled out my walker. It is a metallic dark blue, with a seat and two-wheel brakes! Try not to be too jealous. The nurse also suggested that I increase the use of oxygen from once in a while and when I sleep to, well, pretty much all of the time. I have an appointment with Dr Kwan on the 19th. With luck, I will find out more about being put in the hospital until the heart comes, or any other tid bit of information I can grab a hold of.

Every week, please join me in saying a prayer for the donors and their families. If you do not believe in prayer, perhaps you could send good thoughts and vibes their way. If you would, say a special prayer for the friends of mine who tonight are grieving deeply. That family really deserves some peace.

Watch for the new book coming to you in October 2012! Also, look for my Anthology of short stories and poems. A totally fictional, sometimes irreverent look at the world. My target release date  for this book is also October 2012. Oh, one last bit of news.  A new book; “Memoirs of the Cold War” is progressing nicely and should be released in the fall of 2013.

If you find yourself not really knowing what the heck is going on, you can catch up. Pick up a copy of “Death:Living To Talk About It” here.    http://www.brianhayden.com/  My book is available in Paper back, Kindle and Nook.

Take some time to go back in the blog..one month…six months…a year or more. My life is spilled all over the last 190 blog entries. I invite you in and check it out.

This memoir is the story of a man struggling with heart failure, and the trials he and his family endured for many years. It is the story which proves that no matter what you do not give up. There IS hope.

Waiting for a new heart took on a whole new meaning this week. We recently got word that one of the members of the heart transplant support group had passed. He was post transplant. I do not have the details, except to say that the people running the group were surprised to here that news. It is a stern reminder that heart transplants are no walk in the park. Sure people hear about them all of the time. And certainly they are safer than ever, even being characterized by some as “Routine.” Let me reiterate for you this: Survival rates the first year after transplant is 89 %. That is average, nation wide. That means that for every 100 people that get a new heart, 11 people will die. Heart transplants are anything BUT routine.

For me, the choice was simple. Either I get a new heart, or die. All other options were off of the table. SO, despite the odds (which are only a little scary) I chose transplant. I surrounded myself with a great medical team, and put my life in their capable hands. Still, after all of these years fighting heart disease and being sick, when a fellow patient dies from doing something you will be doing, it gives you reason to pause. May he and his family find the peace they so richly deserve.

As for me, my week has been mostly uneventful. After last week’s increase in Lasix, my weight began dropping. I was stable at 218 for several days. Then, two days ago my weight began to rise again. At first, just 1.2 pounds. No big deal, right. Well, maybe. But today I was an additional 2 pounds up. Combine that with loss of appetite, nausea and general weakness and now I have a problem. And I came so close to getting through the week with no drama. Oh well. Add to all of this the ongoing problem of getting weaker and weaker along with an increase in my shaking and well…I do not know. Last evening Denise and I went to dinner at one of our favorite Chinese restaurants. I like the won ton soup. When I got the soup, I could not eat it. When I held the spoon, my hand would shake so violently, I could not get the spoon to my mouth. I was not able to use the spoon to cut the won ton. With help, I just picked up the cup with both hands, brought it to my face and drank.

As far as the weakness goes, I can no longer do the simplest tasks. I always wanted to help by doing the dishes. Stand in front of the sink and do the dishes. That sounds easy. I cannot stand in one place for that long. My legs begin to shake and they are tired. I can take a shower by sitting on the stool, but I am too tired to get out, dry myself and shave. Denise helps me from the shower to the bed, where I hook up with my oxygen and rest before dressing. I HATE THIS! I am getting weaker and weaker, and I am helpless to do anything about it.

My home health nurse came this morning. As usual, we talk about how I am doing. I shared with her my frustrations and problems. While she was sympathetic, she knows that this is the road I must travel. At least for a while longer. She said that it seemed like I may end up waiting for a new heart in the hospital. She will report to Dr Kwan, and I have a regular appointment with him on June 19th. I fear that the next few weeks will redefine the nature of my existence.  Both Denise and I are afraid. We keep a positive attitude and we do as much a normal schedule as we can. We will keep hope close and we will keep the faith in both the doctors and God. Oh we will be scared, but I like to keep things in perspective.  I’m still here!

Every week, please join me in saying a prayer for the donors and their families. If you do not believe in prayer, perhaps you could send good thoughts and vibes their way. If you would, say a special prayer for the friends of mine who tonight are grieving deeply. That family really deserves some peace.

Watch for the new book coming to you in October 2012! Also, look for my Anthology of short stories and poems. A totally fictional, sometimes irreverent look at the world. My target release date  for this book is also October 2012. Oh, one last bit of news.  A new book; “Memoirs of the Cold War” is progressing nicely and should be released in the fall of 2013.

If you find yourself not really knowing what the heck is going on, you can catch up. Pick up a copy of “Death:Living To Talk About It” here.    http://www.brianhayden.com/  My book is available in Paper back, Kindle and Nook.

Take some time to go back in the blog..one month…six months…a year or more. My life is spilled all over the last 190 blog entries. I invite you in and check it out.

This memoir is the story of a man struggling with heart failure, and the trials he and his family endured for many years. It is the story which proves that no matter what you do not give up. There IS hope.

Living on the heart transplant list is becoming more challenging every day. This past week showed me that my life rides on the balance of the smallest mistakes or problems. As you know, I had been dealing with blood pressure problems. Just a week ago, the doctors made yet another adjustment to my medicines. And, finally, by last Friday my blood pressure returned to normal. 100/60. All was well with the world, and I was actually beginning to feel better.

When Friday night arrived, Denise performed the maintenance on the picc line and changed out the bag of Milrinone. Not a problem. We had done this every other day for nearly seven months. The process went smoothly. The pouch was closed and we went on with the business of living.

Saturday was fine. I had gained a pound and a half over night, but I thought nothing of it. When dusk came, I went out back to water the herbs and the roses. We have a beautiful rose garden and herb garden. The process requires the watering person to move less than 50 steps for the entire procedure. You walk five or so steps, point the hose and water. Then, you move another five feet to the next spot and water again. You get the picture. It is simple and there is virtually no physical activity required, with the exception of walking, and pulling a garden hose around a bit.

I had spent about thirty minutes watering, and when I was done, I noticed the strangest thing. My legs would not carry me back to the house. I was completely unable to move my legs and had no strength to do any thing about it. I called for Denise. She came out and helped me back in the house. I was out of breath, and weak. My voice was disappearing too – a sure sign I was in heart failure. I rested on the couch, hooked up to my oxygen  and in a couple of hours, regained some of my strength. As soon as I could move, Denise brought me to the bedroom, and I fell quickly to sleep.

Sunday morning arrived and I was feeling tired. I was weak and had zero stamina. My weight was up two pounds.  Later that morning,  Denise and I received an invitation to my daughter’s house for dinner and watch the first game of the NBA Western Conference Finals, in which the San Antonio Spurs are playing. That sounded great to us. The only issue that we needed to deal with was packing the IV medicines, along with all of the accompanying stuff.  Batteries, alcohol swabs, latex gloves,  sleeve covers, IV flushes, Milrinone and heparin. You see, that day was the day to change out the bag. When we change out the bag of Milrinone, an assortment of maintenance procedures are also required.

We arrived at my daughters home, had dinner with her lovely family and hung around talking for a while. Then the pre-game show began. Well, that was my signal to change the bag. We wanted to do it then, so we would not have to interrupt watching the game. Denise grabbed the bag with all of the stuff and began spreading it out on the table. I too had my chores to do in preparation for the procedure. Once everything was set, Denise grabbed my bag and unzipped it.

That is when we new that I was in trouble.  Immediately, we noticed that there was an error message on the pump. All that told me was the pump was not in the off position. When we went a step further, Denise pulled the flap that held the bag of medicine, and to our surprise, the bag was still full. We took a double-take on the situation. Pump was on, but there was an error message on the screen, and I had not received any Milrinone since Friday.Just to refresh your memory, the Milrinone is an “inotropic” drug. That means that it helps my heart pump blood. I need that because without it, my cardiac output number is 2.5 liters. That means I pump 2.5 liters of blood from my heart every minute. That sounds like a good number, but it is less than half of what a person needs. Based on the evidence: IV medicine still in the bag, increased weight, reduced activity level and generally feeling weak and tired, I feel confident in believing that my cardiac output level is back to poor.

First things first, I called the infusion pharmacy. I told them my problem. A nurse walked me through some steps to get the pump working again. It worked, but because it is no longer reliable, it will need to be changed out. Next, I call Dr Kwan’s office. Of course that time of night and on a three day week end, I got the answering service. I explained my problem and they patched me through to the on call nurse. I knew this person and felt confident in what she will tell me. She agreed that I was in serious heart failure. The course of action was a choice. One option: Go to the hospital. I am not in favor of that option. The next is to change the dose of Lasix in the morning with a goal of drawing more fluids off.  If I cannot get the fluid to start coming off by the next afternoon, I should call her again. Also, if all is ok, I need to see the doctor on Tuesday morning. That is the option I chose.

The next morning I was up an additional two pounds. That is five pounds plus in just a few days. I took the meds as directed and the flood gates broke open. I was darting back and forth to the bathroom like I was in a relay race. The weight and the fluid had begun to come off. By Monday afternoon, I began feeling better. On Tuesday morning I continued to lose weight, but was still up a couple of pounds. We went to the doctors. Dr. CK was there. We went through the usual routine to check in and finally the doctor comes in. We discussed what had happened over the past several days. He said that we dodged a bullet again. Not having the Milrinone;  stopping that medicine abruptly was very dangerous. He discussed my weight. He told us that at my weight, heart donors are less common. I am completely sedentary now. How can I lose weight without moving around. While he did not have a good answer to that, he did say I should do what I could to drop as much weight as possible. He told me that he and Dr Kwan had ruled out getting a donation from a female. They did not feel that a female heart would be able to adequately support me.

Before we left the doctor, Denise asked him if I would need to be hospitalized while waiting for a heart. He said not yet, but that he is seeing me every few weeks, and as soon as I show certain signs (do not know specifically what), he will hospitalize me. There is some advantage to going to the hospital, namely you are bumped up to a category 1A, the highest priority for a transplant. This, however is reserved for the sickest of the sick. Those who are in imminent danger of dying. I will be thankful that I am not quite there yet, although this past week-end, I came pretty close.

A few days ago, a family friend, a woman in her early fifties had a heart attack. They did some stuff, and, well the short story is that she bled out in her brain because of some of the medicines that were used in the course of treating the heart attack. Now, I do not all of the details, but we were told that the family would probably pull the plug this evening.

When will my turn come up? Or your turn? Who knows? Be nice to each other, enjoy the sunshine, your children, grand children and friends.  Do not miss the opportunity to enjoy your life. Do it now, because I do know this much:  tomorrow is promised to know body.

Every week, please join me in saying a prayer for the donors and their families. If you do not believe in prayer, perhaps you could send good thoughts and vibes their way. If you would, say a special prayer for the friends of mine who tonight are grieving deeply. That family really deserves some peace.

Watch for the new book coming to you in October 2012! Also, look for my Anthology of short stories and poems. A totally fictional, sometimes irreverent look at the world. My target release date  for this book is also October 2012. Oh, one last bit of news.  A new book; “Memoirs of the Cold War” is progressing nicely and should be released in the fall of 2013.

If you find yourself not really knowing what the heck is going on, you can catch up. Pick up a copy of “Death:Living To Talk About It” here.    http://www.brianhayden.com/  My book is available in Paper back, Kindle and Nook.

Take some time to go back in the blog..one month…six months…a year or more. My life is spilled all over the last 190 blog entries. I invite you in and check it out.

This memoir is the story of a man struggling with heart failure, and the trials he and his family endured for many years. It is the story which proves that no matter what you do not give up. There IS hope.

Waiting for a new heart is complicated. You might think it is just sitting around waiting for the phone call telling you “we have a new heart, Mr. Hayden.” And you would be wrong. Week after week I am confronted with situations that require doctor or nurse intervention. This past week was no different.

Remember me telling you about low blood pressure issues? Well, my blood pressure hit an all time low this past week: 77/52. Now you may know someone whose blood pressure is very low, and that person may handle it perfectly. I, on the other hand cannot tolerate my blood pressure at such levels, so once again, I call Dr. Kwan’s office. I tell the  receptionist that I want to leave a message for a nurse.   He says fine, and asks about my message.I tell the receptionist my problem and he immediately puts me on hold. A moment later the nurse gets on the phone and I tell her what is going on. She says that Dr. Kwan is in the cath lab, but will reach him as soon as he is out.

All through the day, my blood pressure stayed around 80/50, give or take a couple of points. I was completely useless the entire day. I sat on the couch, my mouth half-open, as if pretending to be a recently caught trout. When I do stand, Denise must be near by, as I get light headed and dizzy standing up.I wait there patiently until I can take my nap. Later that afternoon, the doctor’s office calls back with instructions. The nurse said that the doctor wants to cut back more of the drugs. Last week he cut my dose of Lisinopril in half. From 20 mg/day to 10 mg/day. A couple of weeks before that they cut my Topolol from 150 mg/day to 100 mg/day. Today they would reduce my Topolol once again. They cut the dose in half, to 50 mg/day. The nurse said it would take a couple of days, but I should see improvement. In addition, she moved up my appointment with Dr Kwan to next Tuesday.

Staying alive waiting for a heart is tricky business. It is a fine balance of medications that keep me alive. Too little beta blocker and my heart’s arrhythmia problem may re-surface. Too much and my blood pressure crashes. Too little Lisinopril and my kidneys are not protected from the consequences of poor perfusion. Take my Amiodarone too close to taking my Digoxin and there is more trouble. Not enough of the stuff and I don’t get benefit from the drug. And on and on with the other drugs and combinations of drugs. It is truly a miracle that someone can figure all this stuff out.

So when the doctor tells me he is reducing my Topolol by 66% of what is was a month ago – 150 mg to 50 mg, I get nervous. When they cut the lisinopril dose in half, I worry. I am afraid..actually afraid that the change in medicine is going to tip the balance that keeps me going. Tip it from alive to the opposite. I cannot even say it. These are dangerous times for me now, and I trust the doctors know what they are doing. I do trust them, but it is still scary.

On top of all that craziness, my skin is beginning to tear. No, not a cut. You heard correctly. My skin is beginning to tear.  The area around my picc line is covered with a clear adhesive bandage. About nine square inches. Each week, the nurse comes to my house, changes the bandage and cleans the area. Well, when she went to remove the adhesive today, my skin began to tear. She explained it is a side effect of having the adhesive covering for prolong periods of time. There is no fix, except there is different bandaging material that can be ordered. She cleaned me up today, and put the same adhesive on the area. How badly will my skin tear next week? Who knows, but maybe if it tears again she will order the new bandaging material.

On a lighter note, I saw my Endocrinologist this week. That is the doctor that manages my Diabetes.  My A1C, a number that gives a good picture on control of sugars in blood was 6.5. When I first came there it was 6.9. My total cholesterol was 151. He was very pleased at our control.  As each passing week brings us closer to a heart transplant, we needed a plan for dealing with the side effects of the various anti-rejection medicines and steroids. All the doctors on my medical team expect my blood sugars to jump quickly to over 500. Yesterday, we devised a plan for managing the spike in blood sugars, and to help hold the line and keep in control. It is another thing that will be a bit tricky, but I feel good about the plan, and expect our success.

Every week, please join me in saying a prayer for the donors and their families. If you do not believe in prayer, perhaps you could send good thoughts and vibes their way.

Watch for the new book coming to you in October 2012! Also, look for my Anthology of short stories and poems. A totally fictional, sometimes irreverent look at the world. My target release date  for this book is also October 2012. Oh, one last bit of news.  A new book; “Memoirs of the Cold War” is progressing nicely and should be released in the fall of 2013.

If you find yourself not really knowing what the heck is going on, you can catch up. Pick up a copy of “Death:Living To Talk About It” here.    http://www.brianhayden.com/  My book is available in Paper back, Kindle and Nook.

Take some time to go back in the blog..one month…six months…a year or more. My life is spilled all over the last 190 blog entries. I invite you in and check it out.

This memoir is the story of a man struggling with heart failure, and the trials he and his family endured for many years. It is the story which proves that no matter what you do not give up. There IS hope.

I don’t know. The longer I spend with the picc line in my arm, the less confidence I have about surviving this journey. The longer I stay dorment on the heart transplant list, the greater my fear of dying – just a day or two too soon. Imagine, an hour after I take my last breath, the doctor gets the call announcing they have a new heart for Brian Hayden. The doctor’s nurses call my house only to find a stranger answering the phone. They ask for me…

“Sorry,” is spoken from a strange man with a deep voice.  He continues, “Brian died during the last commercial. Apparently the Spurs were killing him , or something. Anyway, that’s what I heard.”

Earlier this week I think I may have passed out in my sleep. Can you imagine that?  Wake up…out you go. I was sleeping, when I was awakened by a strong buzzing feeling rushing through my head and down my body. I t was, I think like the feeling one gets just before pasing out. I cannot know for sure though. Afterall, I was sleeping. I took my blood pressure. The machine read 82/52. Not generally dangerous levels, but low by any standard. I had been getting similar results the previous day. If you will recall, I had a blood pressure problem a couple of weeks ago. The doctor made some medication adjustments and I was fine. Now, my blood pressure is once again dropping. It is a curious thing though. If I walk, say from the couch to the kitchen to get some water; immediately returning to the couch, I may walk 40 steps – round trip. When I take my blood pressure directly after sitting, it will read 107/70. Completely normal. But if I stay seated and rest for just a couple of minutes, my blood pressure begins to drop.  100/62. A couple of minutes after that…92/57…and a few more minutes of rest brings me back to my problem – 85/58, give or take a bit.

The day after the passing out incident, I rested more than usual. My blood pressure stayed low, and I experienced light-headedness everytime I had to stand, or bend over to pick something up. That evening I decided to call the heart hospital and talk with the on call nurse. After explaining my problem to him, I was told that what I am experiencing is normal. Expect it from now until the transplant. He continued by telling me that low blood pressure is what the doctor wants, so I will need to get used to it. If it really is becoming an issue, call them back.

Even today – this very moment I continue to have periods of light headedness. I will learn to cope, but I do hope that my new heart comes sooner, than later.

On a lighter note, I have decided to declare the new book “FINISHED”. It’s title is officially, “Road To Transplant.” While it is true that I have not received my transplant yet, I fear that adding the mundane repeated problems I share week after week to be too redundant for the book. It is ok here because it is a journal, following me along. It does not translate when put into book format. So, it is complete. I did, however write in a Epilog at the back of the book, with two endings. The publisher will know which one to use. One ending will talk of my transplant, and have pictures of me in ICU, the step-down unit walking, leaving the hospital and end with a picture of Denise and I standing in front of my home when I finally arrive home from the hospital. The other ending…is my Epitaph/Eulogy. It is a rare opportunity for the dead guy to write his own. Anyway, depending on the outcome, that is the ending which the publisher will insert. You know which one I am rooting for. Right?

I will continue to write the blog, and keep you posted.  The only potential obstacle in continuing the blog after transplant is the increase in shaking I am likely to experience. I will type through it, I think. And, I will not correct the way the print looks. That way you may get a real look at tremors through print. What do you think? At the rate I am going, the blog may last for a while.  I may try leaving the tremors in for practice,  as I have them now. TThey wwil kindd of look like thiss.  Sometimes worse, rarely better.

I intend to write in it for a year past the transplant. We’ll see how it goes. As always, please join me in praying for the donor and their families in the hope they find some peace in giving the greatest gift they can give. God Bless You.

Watch for the new book coming to you in October 2012! Also, look for my Anthology of short stories and poems. A totally fictional, sometimes irreverent look at the world. My target release date  for this book is also October 2012. Oh, one last bit of news.  A new book; “Memoirs of the Cold War” is progressing nicely and should be released in the fall of 2013.

If you find yourself not really knowing what the heck is going on, you can catch up. Pick up a copy of “Death:Living To Talk About It” here.    http://www.brianhayden.com/  My book is available in Paper back, Kindle and Nook.

Take some time to go back in the blog..one month…six months…a year or more. My life is spilled all over the last 190 blog entries. I invite you in and check it out.

This memoir is the story of a man struggling with heart failure, and the trials he and his family endured for many years. It is the story which proves that no matter what you do not give up. There IS hope.