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Archive for May, 2012

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.

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

A week ago, Denise and I attended our first heart transplant support group. It was definitely an eye opener and both Denise and I learned tons about what is in store for us. I say us because getting a heart transplant requires help. The patient cannot do it alone. Denise is the rock upon which all of my support is built. So let me begin by telling you who attends the group. There were about 20 participants. Of these two were nurses that worked for the transplant doctor,  sixteen were recipients of hearts and two of us were waiting for hearts. A wealth of knowledge in that room and I was determined to get every bit of info.

First, let me say that the recipients post-transplant life time ranged from two months to twenty-one years. That was good news right from the start. Perhaps there is life after transplant. The person just two months after transplant talked. She was having a tough time. She couldn’t keep anything down. Her pancreas was sick (not sure what); the casualty a of suppressed immune system.  As she tries to feed herself, she talks about shaking.  Her hands shake so hard that her husband must feed her. That comment brought a lot of others chiming in.  Do you remember a few months ago when we talked about shaking as a potential side effect, and that is not good news for me because my hands already shake. Apparently it happens to most people. At least most of the people in this group. SO while I cannot predict the future for me, I can summize that Denise will probably have to feed me for a while after the transplant.

I asked about how careful I must be about getting infections after the transplant. Again, many people voiced their thoughts. First, let me say that protecting the patient from infection is as important as watching for rejection. They are in a way, linked.  Part of controlling rejection is dialing the bodies immune system way back. That controls rejection, but opens the body up to all sorts of havoc. As that woman above found out, and I do not know specifically her details, but what was clear is that bugs (bacteria and viruses) may lie in check for years – the bodies immune system working perfectly to control them. All of a sudden the immune system is gone, and opportunistic diseases may emerge seemingly out of know where. Therefore, extraordinary measures to prevent the patient from contracting stray “bugs” are implemented.

One of the measures is extreme. I cannot go to places where strangers may get together. That means I cannot go to the store. I cannot go to restaurants or theaters. Nor may I attend a church or a public park. I cannot have a dog in the house, or if I decide to keep Bear in the house, I may have no direct contact with him. I cannot have pre-school aged visitors.  My youngest grandchildren are 6 and 7 years. I will just have to be careful, because I will not be told not to see them. I asked about those masks. They told me the intent. When people see a person with a mask, they avoid them. Job done!

Basically, cooking must be accomplished with great care. Cleanliness of my living space must go from good, to hospital-like, in that special sanitizing agents are used on counter tops, bathroom fixtures, bedroom furniture and everywhere. That anti-bacterial hand lotion will be placed at the front door, and in every room.

After about two or three months, if all goes well, they will begin to crank up my immune system. Slowly over the first year until at the end of the year, if everything falls into place and all is ok, I will be nearly back to normal. The life of the transplant patient will always be tenuous as our immune systems will never recover to full strength. Then some good news, I asked about the incidence of Diabetes in patients. It is a concern because for many, high steroid doses may influence blood sugars. While it is true, most of the transplant patients there experienced only a transient raise in blood sugar  which disappeared as the drugs were dialed back.

A full 11 per cent of all transplant surgeries conclude with the patient being dead within a year. Nearly 25 percent will be dead after five years. Isolation from the world for weeks after the surgery. Rejection and infection problems are looming at every corner. A week in surgical ICU and another several days in a step-down ICU after surgery followed by weeks and weeks of physical therapy and re-conditioning after years of de-conditioning. That is what lies ahead of me.

Every day I do not get that call from the transplant team brings me a day closer to getting the transplant. Am I scared? Hell yes. The entire process scares me to death. (bad choice) I am, however prepared to go on that road: to navigate all of the bends, dips and turns in the road and to put my life in the hands of a handful of people.  Recently, someone asked my why I would go through all of this. They said that it was too terrifying and too dangerous, and way to painful and inconvenient. Quietly, I listened to him talk about it. When it was my turn to answer the question, the response was quick, and simple.

I do not want to die. I love life.

Thank you to the donor’s  and their families. I do appreciate what you did. It was very brave, and selfless. May God and time grant you the peace you deserve.

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 189 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.

Read Full Post »

This week has been particularly troubling for me. Waiting to see which will arrive first, my new heart, or death; at this point nobody knows for certain.  On April 28th, I turned 58 years old, and on that morning when I woke, I felt like a hundred. I lay in bed, weak and tired and unable to muster the strength to rise.  About 10 am, Denise came into the bedroom. She asked  how I was and I told her. Then, the phrase that is about to become her call sign: can you guess it?

“Hon, do you want your birthday party today, or should we go to the emergency room? Was spoken as if asking me if I would prefer pancakes or waffles. Of course I chose the birthday party. I would not miss the opportunity to visit with my children and my grandchildren. My son took over the grilling duties. I sat in the shade visiting with him. The party (more like a family dinner) was wonderful. I got the chance to play with my grandchildren and I ate a great meal AND, if that were not good enough, as Denise was bringing out the cake, all decorated, with candles blazing, I recalled how miraculous it is for me to see yet another birthday. Passing landmark days, like my birthday are always a thrill to me, as I never expected to see forty years.  The day could not have been better, and I rested comfortably the whole night.

Nevertheless, I am still having issues with light-headedness, weakness and general fatigue. I had an appointment to see the transplant doctors on May 1st, so I will try not to let anything bother me and bide my time until then.

When Tuesday came, Denise and I went to the cardiologist at the transplant hospital. It was the usual check-in. Arrange for payment of the bill. Then off to get weighed, measured…Oh, I may not have told you; they measure my waist, the circumference of my arm where the picc line is and the length of tubing sticking out of my arm every time I go in. Then I lay down and get an EKG. Once all of that is done, the RN comes in, draws several viles of blood out of my picc line and reviews my medicines. Then we have a discussion about how I have been doing. At first I say that I am fine. Denise gives me this look… Trust me, you do not want that look. So I told him about everything. The fatigue, being light-headed, the tiredness. Everything. The nurse wrote everything down.

A few moments later my doctor came in. It was Dr K.,  Dr Kwan’s partner. I cannot spell his name, nor can I pronounce it. I am in a large group of people who cannot pronounce his name, so he is nick named. Dr K. He is an excellent doctor, with a calming bed-side manner. He begins by completing an examination Then he moves to the EKG, followed by all of the rest of the data.

Afterwards, we begin our discussion. First, he comments on my EKG, noting that all of the pvc’s that had been plaguing me are absent, and that the pace maker is providing my heart with 100% pacing. The doctor told me that the Amiodarone is working beautifully and is allowing my pace maker to do its job.  He continues, he sees no signs of fluid retention. Everything seems to be ok. Now it is my turn.

I ask the doctor why, if everything looks good am I continuing to feel worse. That my fatigue, dizziness and tiredness are worse now than it was two weeks ago. The doctor gets serious now.

“Brian.  Denise… despite all of the changes we have made, your heart is continuing to get sicker. In spite of the fact that I am 100% paced, my heart is growing weaker. We cannot change the drugs. At this point we must go with what we have now.” I told him of my fear that I might die before I get a new heart. He confirmed my fears, but said that he felt confident I would get my new heart soon. They have recently turned away two more hearts. He said they were marginal. I asked him what that means. He explained that one of the heart offered was from a young woman. Unfortunately, she was too small. Her heart was not large enough to service my size body. The other offer came from an older gentleman. He did not say how old. Just that he was older than he would want for transplant.

So I wait. Patiently. Intently. Waiting for the home call that will offer me another shot at life. The only question on the table now is: will I survive long enough to get the phone call. Only God can answer that one.

Thank you to the donor’s families of the hearts my doctors turned down.. I do appreciate what you did. It was very brave, and selfless. May God and time grant you the peace you deserve.

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 189 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.

Read Full Post »