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Posts Tagged ‘Living with heart disease’

Author pic #2 for siteI am so profoundly touched at the continued support,  and the number of visits that this blog has, and is enjoying. You …amaze me!  And although i will no longer be posting in this blog, I will keep it running for future readers to glance at the life and trials heart disease.

Please consider this a personal invitation to join me at my new website and blog.   Follow this link to my website.   http://brianhayden.net/  The blog is easy to find. Come over and subscribe to the blog through the NetworkedBlogs button, located on the bottom right side of the blog. Do this and I will send you a free e-book.  Five Short Stories and Twelve Poems is receiving wonderful reviews. If you have a Computer Kindle reader, I will send you a Kindle file of that book. If not, you may download a reader on Amazon. Or, I will send you a PDF of the book.  Leave a message under the “contact me” page and tell which version you want, along with an e-mail address.

Thank you again. and I hope I see you at my new website and blog.

Road at Sunset     book cover    short stories final

 

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I left the hospital after 10 days. It was great getting back home. I thought I would be more active, but it only took a moment to realize I would have many more days of healing before normal activity would return.

For one thing, I still required my chest pillow. A chest pillow is used as a brace – of sorts. When a person has any open chest surgery, the sternum is broken. Now if it were an arm or a leg, the broken bone is stabilized with a cast. Obviously, with the sternum that is not possible. Instead, patients use a chest pillow. Not all the time, but I use it if I must cough or sneeze. I pull the pillow tightly against my chest, as if I were giving it a hug, with my arms wrapped tightly around it. The pillow is my constant companion for the next three weeks.  Even turning from side to side in bed is painful.  In the first days home I went through lots of pain medicine. Probably 10 to 12 tablets of Hydro-Codone each day.

Aside from my chest healing, I came home from the hospital with a lymph leak adjacent to my groin. You may recall me mentioning that during the surgery, they had to use an alternate site to hook up the bypass machine. Instead of going through my chest, they needed to go through my groin. While that was a life saving alternative, the procedure badly damaged the Lymphatics in the region. Leaking at a regular rate of about 25 cc’s an hour, you can imagine the mess it caused. Denise was a trooper though. She got in there and changed the lymph fluid soaked bandages five or six times a day.

As the days and weeks went by, the leaking continued. You might imagine that with all the tape from the bandages having been put on and taken off repeatedly, the skin in the area began to tear. The entire area was bruised and torn up. After about a month of regular bandaging, the doctor decided to use an “ostomy bag” to capture the fluid. It hung from my thigh from a fresh drainage hole the doctor created.  Truly it was a blessing. No mess and easy to empty. We thought though, that the leak would never stop. Finally, just a couple of weeks ago, after nearly ten weeks of leaking, it stopped. Sunday night I drained it. By Monday morning the bag was still empty. What a night mare.  I am so glad that is behind us.

Now for the hard part. If you are regular readers of this blog, you will remember me discussing “de-conditioning” the months leading up to being listed. In those six months preceding the transplant I was very sick, and unable to do the slightest of exercise. By the time I was called for the transplant, I had spent a full three months almost completely sedentary. To say that I was de-conditioned would be a gross understatement. My muscles have atrophied.  I cannot easily walk anymore. The solution.  A program called “cardiac rehab”. The only issue I have: The program is at a very large Army hospital, SAMMC, (San An Tonio Military Medical Center). By the time I walked from the parking lot to their office I would be too tired to exercise.  Consequently, Denise and I needed to adjust our plan. We arranged for a physical therapist to come by my home twice a week. Between his visits, I would do the exercises he is teaching me.

Last week I had another heart biopsy. The doctor said I have zero signs of rejection. I asked him about going to the gym and he gave me his approval. This is going to go a long way towards getting back to “normal”, whatever that means.   I am being removed from the steroids, slowly, but surely. I am down from 20 mg per day to 5 mg per day. Valcyte is gone (that was a $3,000 per month drug), as well as a few other drugs. As for the anti-rejection meds…well, I will use them for the rest of my life, but for now, the blood levels are stable, so I only need blood test monthly now. Before last week, I was getting weekly tests.

The first year after a heart transplant is the scariest, but I trudged through the first three months like a champ, and my recovery is on or ahead of schedule. I am continuing to exercise regularly, and though I am still severely de-conditioned, I am improving.

As always, please say a prayer for all the donors in our world, and their families.

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 200 + 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.

The sequel to this story is “Road To Transplant”. Some of what you read in this blog is in the new book. Road To Transplant is scheduled to be released in Mid November 2012.

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July 9th: Woke up this morning . That seemed to be the good news for the day. My energy level is, at this point non-existent. And as I sit slouched on the sofa, Denise asks, “are you ok?” In place of regular conversation, the dialog is filled with questions of my health status. When noon rolled around, we decided to step out and get a bite to eat. Now normally, we would pick a restaurant that offered healthy options,, and the burger joint we chose did serve salads. But I was not feeling well. On top of which I was feeling depressed. Six months had come and gone since being listed for a  new heart and nothing. Just a couple of hopeful offers that turned out to be of no consequence. Every day we wait., Every day…nothing.

“Give me a double cheeseburger and a chocolate milk shake” came from my mouth without a stutter. Denise being…well, Denise ordered a grilled chicken sandwich and a salad. We sat and ate our meal and taking. Actually questioning my choice of food for lunch I retorted something to the effect that it will be fine. They haven’t called us in six months. They won’t call today. So we stay, relaxed and talking about all manner of topics. Finally it was time for us to leave. Denise cleared the table and refilled her diet Coke. Then, she came back to the table to help me get up. I was holding onto the bag which held the pump and the Milrinone. As I held that, Denise held my arm and pulled me up. I adjusted myself, regained my balance and started toward the exit.

I had not yet reached the door when I heard the cell phone ring. It was buried deep in Denise’s purse. She stepped outside and answered the phone. Quiet at first, she handed me the phone saying it was the hospital calling. NO BIG DEAL. They always call. Appointment this, lab result that. There was no reason to get excited. That is until I heard the nurse tell me –

“Brian. I have some good news. We have a heart for you.” Just as I listened to the last syllable fall off of her tongue,, time stood still. My stomach immediately turned into a knot and I could not speak. I motioned to Denise that they have a heart for me. She froze in her tracks. I have…no we have been waiting for more than six months for this call, and now that it is in my hands I am speech less.

With tremendous shaking in my voice I manage to ask her to repeat what she said.

She did, adding “ The staff on the 7th floor cardiac ICU are waiting for you. They will get you prepped and briefed.”

“Do I have time to go home and shower” I asked?.

“ Yes, but be at the hospital by 2 pm. I will let them know”. And with that I hung up the phone, turned to Denise in shock and began tearing up. I cannot say if they were tears of happiness or sheer fright. Quickly though, we got into the car and made our way home. As we did, I called my daughter. I told her what was going on. She would make all the subsequent notifications.

As soon as I got home I jumped into the shower. By now, the phone calls started to pour in. Denise handled them. By 1:30pm we were out the door and en route to the hospital.

As we begin our walk into the hospital, the reality of the situation comes full circle and I begin to shake with nervousness, Denise clutches my hand tightly. I could tell that she is as scared as I am. Maybe more. As we make it to the 7th floor and walk into the cardiac ICU we are greeted with a nurse asking if she could help. I introduced myself and Denise and the nurse immediately came over  and gave each of us a big hug, an very happy confident smile and some kind words. She showed us to my room. The room I would only have residence in until the transplant. After the surgery she pointed down the hall and said I would be at the surgical ICU for about a week. Moments later, a team of two nurses came by. They were from the surgical ICU. They told Denise and I that they would be my nurses when I arrive at the surgical ICU later on. They wanted to stop by and introduce themselves to us.

Moments after the introductions, someone came by to get Denise. She would have to stay in a lounge area until I was prepped. Then she and others could come in. Now normally only two visitors at a time are allowed in the cardiac ICU. Pre transplant patients are allowed as many as you can fit into the room.  The rules are different for patients that have a 10% chance of dying in surgery.

With Denise comfortably in the lounge, the staff began prepping me. First… all of my clothes must be removed followed by all of the hair on my body below my chin. Yes, Everywhere. Chest, back, arms, legs, groin…everywhere. Then a special scrub to clean me up proper.

Finally after what seems like a full day, at 3 pm,  I was fully ready to go and Denise was allowed back in.

As we wait, we were joined by my son and daughter, and other friends and family. All nervously waiting for some word. I remember, it was about 5 pm and Dr Kwan came in to my room. He told us that I was offered a heart and it looked promising. The heart is not yet at the hospital. It is still keeping the donor alive. Medical teams from all over harvest what they require. It is only after everything is donated that the heart retrieval team may extract the heart and give it a thorough examination. He told us not to get too excited. This may just be a dry run. He cautioned that dry runs happen frequently.

A short while later, the surgeon came in. He is a white haired old man, seemingly over 70 years. He has the reputation for being meticulous with everything in his life, including his work. His clothes are freshly pressed, despite the fact he has worked all day. He tells us to relax. If it happens tonight, it will be a while. His soft, old voice is full of confidence and somehow beckons you to listen and trust him. A moment later he was gone.

So as I lie in the bed, surrounded by the people I love and the people that love me, we reminisce about earlier days  before the heart attack. Days which regrettably put me in the situation I find myself now. So many years of waiting. Such a hard, long road to get here. The moment is surreal for us all. At 6:30 pm, Dr Kwan again came to see how we were doing. He is hopeful now that the transplant will happen, but he cautioned still not to get my hopes too high.  My friends and family took advantage of having his attention and asked lots of questions. It was during this period that the nurse entered the room.

It was nearing 7 pm. She told Dr Kwan, and the rest of us that the surgical suite has just been reserved for us. Reservations for one at 8 pm. Dr Kwan said that I would get my transplant tonight, although he still is not certain what time.  I asked him if he knew anything about the donor. All he could tell me was that the donor was a 37 year old male. He would give no additional information.

Now it was at this point that you could begin to feel the tension in the air. It was palpable. Everyone was scared. I could tell that Denise is really frightened. The welled up tears in her eyes told the tale, and like a chain reaction, everyone began to tear up.  To break the tension, almost on que, a nurse from the surgical ICU returned. She spoke kindly and said that they are ready for me when they complete the transplant. She let me know not to be frightened when I awake.  My hands will be restrained. I will be awakened with the breathing tube still in use. They do not want me to pull it out. Moments later It was 8pm.

As I lie there, my visitors began to come to my bedside for a final, and very teary good bye. It did not matter that the odds were in my favor to survive, this is some scary stuff and I was hugged like it was the last time they would see me. During the “good-bye procession”, yet another nurse arrived. She introduced herself and told us she was with the surgical team. The nurse followed up by saying that the new heart is nearly here and I would be going to surgery very soon. Then talking to Denise, the nurse assured her that she would be updated every hour. More often if needed. They expected for me to return to the surgical ICU about 6 hours after I leave here.

8:30pm arrived very fast, and before I could finish saying my good-byes, two gentlemen came in to get me. With one final kiss good bye and “I love You’s” to everyone and with tears now flowing out of every eye, I was quietly rolled out off the room, and out of sight to my guests.

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.

 The sequel to this story is “Road To Transplant”. Some of what you read in this blog is in the new book. Road To Transplant is scheduled to be released in Mid November 2012.

AND!!! My latest book, a light fiction, called   “Five Short Stories and Twelve Poems” is an entertaining read that is sure to keep you smiling.

NOW AVAILABLE THROUGH AMAZON  http://www.amazon.com/Short-Stories-Twelve-Poems-ebook/dp/B0090A4LKQ/ref=tmm_kin_title_0?ie=UTF8&qid=1347556262&sr=1-1

 

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I used to think that having one week without drama was a realistic goal. I am now ready to concede to the reality that a guy waiting for a new heart will never have a week without drama. And this week just proves my point. Lets start from the beginning. Beginning of my blog week that is.

June 29th : As you may remember, I have been watching for swelling in my left leg – a symptom of DVT.  This issue continues to come and go, and come and go. I truly do not know what is going on. I am putting this issue into the boring pile. It will no more trigger a “drama” event.

July 2nd: My blood pressure continues to hinder my daily activity level. It hovers around 80/50. The doctor said not to worry about it as long as it does not drop below 80. I knew the side effects would be part of the bargain, so. .  .   . low blood pressure will no longer trigger a “drama” event.

July 4th: Happy fourth of July. Let me start this day by asking you a question. How hard do you think it might be to get a home health nurse all riled up? The answer: Not hard at all.  Wednesday, my nurse came to change the bandage for the picc line. She does this every week and today was no different, except about half way through, I became unresponsive.

According to Vocabulary.com: 

If someone can’t or won’t respond, we call them unresponsive. Depending on the context, a person’s unresponsiveness can be just a bummer or a life-threatening condition.

Take this word piece by piece. Un- means “not,” as usual. A response is a reaction to something. And -ive is a suffix that means “state of being.” Taken together, these parts add up to “the state of being not responsive.” When your boyfriend just sits and stares rather than talking about what’s bothering him, he’s being unresponsive. Medically speaking, when a person is called unresponsive, it means they’re at least unconscious, and possibly dead or dying.

So you can see, when my nurse considered me “unresponsive”, her heart started to race. This is similar to the problem I described to you a few weeks back. My heart went into an arrhythmia, and apparently this time I became unconscious, if only for a few seconds. My nurse got all serious. I told her that this happens to some degree nearly everyday. Most of the time there is know body around when it happens. Is that like the falling tree analogy? If there is know body to see the tree fall, or to hear the tree fall, does it make noise when it falls? The analogy in this case: if there is know body to respond to, can I really be “unresponsive”?

I even talked this over with Dr Kwan on my last visit. He interrogated my defibrillator and saw no arrhythmias. Although the machine only records events over 150 beats per minute. Dr Kwan felt comfortable in his understanding of the problem, and sent me on my way.  My nurse is not so sure. She is calling Dr Kwan today, July 4th to tell him what happened. That will almost certainly trigger a call later this afternoon with instructions to come by his office tomorrow.

The episodes continue though, and when there is someone to witness the event it can be a little dramatic. I think. I cannot tell you for sure because I was kind of “out”. The judgement: I will continue to consider “unresponsive” episodes drama.

So for now, at least for this week I have by definition side steeped most of the drama this past week. While drama is fun on television, let’s hope for you and me that the television is where drama will stay!

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.

               

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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.

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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.

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The week continued on as usual. Not too much to talk about really. I am continuing to have chest pains. Not every minute of every day -BUT – often enough to remind me that the status of my health is, at best tenuous. The pain is, however manageable and tolerable so I do what I can to ignore it and live my days out the best I can. At least part of the problem stems from the fact that my bi-ventricular pace maker has essentially been made obsolete by the huge numbers of PVC’s I am having. PVC’s if you will recall are “pre-mature ventricular contractions”. The pace maker cannot keep up with them. My heart rate is staying between 48 and 60. The pace maker is supposed to keep me beating at 80.

I believe that the low pulse may be, a least in part responsible for my increased weakness over the last couple of weeks. I was reminded just yesterday, while at lunch with Denise and a friend of just how weak I have become.  You know how sometimes a person will hold the fork off of the table between bites. My arm was not resting on the table. It was merely hovering above it, waiting patiently while my mouth was doing its job. In seconds,I began feeling the burn. You know. It is the feeling one gets when you are exercising vigorously and for a prolonged period of time. That is how my arm felt as I was holding my fork above the table. It took longer to chew as well. I was munching on some greens from a salad. Those take more chews, and well…you guessed it. My jaw was burning. I needed to rest briefly between bites in order to finish with my masticating endeavors.  Yes, I am becoming weaker. My mind is filled increasingly with thoughts like, “am I going to be able to stay alive long enough to receive my new heart”. You know. Thoughts like that.  Sometimes those thoughts overwhelm my nights. Sometimes I lie awake, in the darkness thinking of a hundred scenarios of how my life will play out. Sometimes…

Earlier this week, Denise began the ritual of changing the bag of medicine. The Milrinone. It requires changing out every other day. One of the “house keeping” steps she must perform is the “flush”. She takes a pre-loaded syringe, aseptically connects it to my picc line, and slowly flushes the line. Part way through this process, she is supposed to draw up on the plunger. The purpose of which is to pull a small bit of blood into the line. Doing so confirms that the line is still viable. Well, the other night as she was doing all of this, when she got to the point where she is supposed to draw the blood, it did not work. The blood would not draw. Oh, the solution went in alright. I confirm that by the cold feeling I get in my arm as the flush enters my body and the metallic taste I get on my tongue. We just couldn’t get it to pull blood. I figured that as long as the medicine was going in, the issue could wait until tomorrow. My nurse would be here in the morning.

The nurse came and I explained the problem. She seemed concerned. She mentioned using things like TPA and heparin to break up a clot that might be starting to form. After all, I am at my lowest sustained level of blood thinners in many years. The idea of having a blood clot was a real possibility. After playing with the line, and flushing it a couple of times with heparin and flush stuff, the line worked fine. Another bullet dodged.

This paragraph is a very last minute addition to the blog. So last minute in fact, that I am watching the 6 am local news Thursday morning while writing this.  Denise and I went to lunch with my brother yesterday. Everything was fine. It was a nice lunch. Then I began to stand up from the table. A searing, sharp pain shot through my right upper arm. A moment later the pain was gone. Then, I went to go adjust my pants and the pain returned. Every time I would move my right arm, I would be stabbed with this intense pain. Oh, and did I tell you: the pain is in the area where the pick line is. When we arrived home, Denise looked at my arm and it looked swollen. I called the transplant office and explained the situation. “Please come in right away Mr. Hayden”, were my instructions. I did.

After a few moments with the nurse, answering some questions and being poked a bit, the nurse decided to bring Dr Kwan in on this. But, to see Dr Kwan, this quick visit will turn into a full blown appointment. EKG, vitals, devise interrogation, the works. The nurse couldn’t get my blood pressure. That was a problem I have had for the last two days. The reason: too many pvc’s. Like we discussed earlier. The ekg confirms. My heart’s rhythm is all over the place. But we knew all of this. That is not why I came in. Dr Kwan believes there may be an infection in there, OR perhaps an inflammation of the vessel holding the picc line. The solution. Pull the picc line and send it to the lab for cultures. Pull lots of blood – also for cultures and get me started on a broad spectrum antibiotic until the culture results are in. WAIT!! Pull the picc line? How will I get the Milrinone? Dr Kwan ordered peripheral catheters placed. Those are regular I.V’s you get in your fore arm. It will need to be changed out every three days. Once the cultures come back – if they are negative a new picc line will be established. I asked why I could not get the picc line in my left arm. My pace maker/defibrillator use those vessels. They cannot use the left side. (sigh). How fun. More catheters. If all goes well, the new picc line will be placed Monday morning.

Not long ago, life reminded me of a little rule it has. It is a rule that most of us do not consider. It is a rule that I think we need to talk about once in a while, because this rule had fallen squarely on my head over the last week or so. That rule is” No matter how badly off you think you are, there is someone out there worse off”.

We have a family friend who is in the intensive care unit tonight. One of his lungs was removed late last year. His remaining lung has some sort of resistant infection which we heard has now spread to his brain. Our thoughts and prayers are with him daily as he and his family struggle through these times. Sad as it is to hear about something like that, it does our spirit good. It is necessary from time to time to hear such stories. It allows us to put our own lives into perspective. I know that as bad as I feel sometimes, there is always someone out there who is struggling more. I think hearing stories like that keeps us grounded. Keeps me grounded.

As always, please keep organ donors and their families in your prayers. While you are at it, if you could throw a little good karma toward our friend, I would appreciate it.

Thank you, as always for taking an interest in my journey, and for the support that many of you have given me since the start of this blog. If ever you feel like you have something to contribute, please leave a comment.

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.

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 know matter what -you do not give up. There IS hope.

Read Full Post »

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