Join Me At My New Site

I 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.

         

 

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Epilouge

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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Heart Transplant – The Recovery

According to my daughter, I was brought back to the Surgical ICU around 2:30 am. Six hours after being brought into surgery, and twenty three years after my heart attack, the transplant was completed and I was resting comfortably in ICU with Stanley. It seemed too impersonal to call my gift “the new heart”, so I named him “Stanley”. I was listed in critical, but stable condition. Attached to some twenty bags of fluid, through about eight pumps, I lie there, not yet conscience. The transplant was called a success in that the doctor changed out the old heart for a new heart. The surgery did however have moments of peril. Later, when I talked with the surgeon, he explained that he usually begins cutting the sternum (chest plate) from the bottom up. Then, once opened, the heart bypass machine lines are connected from the top of the heart to the machine. Well, as the doctor began cutting into my chest large amounts of blood began squirting out. Apparently, my heart was so enlarged that it was pressing against the sternum. When he began cutting my chest, he cut into my heart. Here is the cross roads for the doctor. Continue cutting and try to get the lines attached before I bleed out and die, or stop and use an alternate site to hook up to the bypass machine. Quickly, the doctor chose the latter, and with a scalpel cut my upper thigh near my groin exposing the large Femoral artery and vein. It was at this location that the bypass was connected. Once that part of the surgery was under control, the balance of the procedure went without a hitch.               The intubation tube remained in my throat I think about 8 hours or so. Once removed, the nurses immediately began getting me up. At least that is what they called it.

The first five days were the hardest. Moving was painful. Hell, just lying silently was painful, but two or three times a day, they would help me out of bed and put me in that big chair. You may be wondering why I have a pillow on my chest. Well, my chest is essentially broken. Taking a deep breath hurts, so I pull the pillow tight against my chest for support. Sneezing and coughing are worse, and I must hold onto that pillow very tightly. Like most things, the pain begins to subside.  I am only hooked up to a few pumps now and a half-dozen bags of medicine. The rest I take orally now. Once again strength begins to appear. Then on day five in the surgical ICU they moved me to the step down unit.

It is here that I will be weaned off of oxygen and other IV drugs. The physical therapy team now comes by twice a day to get me up and moving. At first I walk around the room. Soon, I take my first steps out of the room and walk 100 feet. I will have to walk 200 yards before they are satisfied. That is walker assisted.  

Amazingly, after ten days in the hospital, they decided I was well enough to go home. I left with a bag of more than twenty drugs. Some anti-rejection drugs, some steroids, a host of vitamin and minerals to help support a depressed immune system and other stuff.  And if you think the trip is over, YAHOO! I am home, you would be so wrong. Lots of challenges ahead. Watch for future posts.

Join me as I say a prayer for the donor and his family.  Words of appreciation and gratitude hardly seem fitting. When I find the right words I will share them with you.

And a fond farewell and thank you to little Brian, my old heart. Though he was sick a very long time, he never stopped trying and kept me alive long enough to receive my new heart.

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.

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 in Kindle format and paperback.  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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Transplant Day

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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This Week’s Journal – June 29th through July 5th

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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This Week’s Journal – June 22nd through June 28th

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.

               

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This Week’s Journal – June 15th through June 21st

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.

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