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.

         

 

New Blog – New Place

As you know, this blog is complete. I had my transplant, and I am on the road to recovery. Now, I am concentrating on living. I  have a new blog coming out after the new year. It will have commentary, the occasional book reviews and author interviews.  I reserve the right to complain about stuff too. I hope you will join me there.  My new blog , a wordpress blog is part of my new web site, and may be accessed here:  http://brianhayden.net/ .

I have been very busy these past few weeks. I published two books since November 15th. Whew! Please take a moment to look at my new books, and some not-so-new books. They will make a great gift for yourself, a friend or loved one.

Happy Holidays!  Thank you all for the support you have shown me these past couple of years. Your support and encouragement has meant the world to both Denise and I.

My newest book, “Road To Transplant” is available on Kindle and paper back. I will donate $1.00 to The American Heart Association, for every copy of this book sold.

Please accept a 15% discount for “Road To Transplant” when you buy it through Createspace.

https://www.createspace.com/4002050  paper back edition.  Discount Code: HD7RBAL8 Good through December 31, 2012

http://www.amazon.com/Road-To-Transplant-ebook/dp/B00A8N59H8/ref=la_B00520BT8U_1_2?ie=UTF8&qid=1353587358&sr=1-2  Kindle version

All of my books and the reviews may be found here: http://www.amazon.com/Brian-M.-Hayden/e/B00520BT8U/ref=ntt_athr_dp_pel_pop_1 

Excerpts for all of my books are available in my new web site.

(excuse the building of my new site. While most of it is up and running, reviews for all the books are not there yet.) Go to the Amazon site to read the reviews.

Merry Christmas, Happy holidays and have a blessed new year.   THANK YOU.

 

Brian M. Hayden

 

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.

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

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

 

It’s Time!!!

If you are reading this post, I have been called by the hospital. They said to come get my new heart. So that is exactly what I am doing.

Denise and I are on our way to the hospital to get my new heart. I want to thank all of you for the support you’ve given me AND Denise over these past years. More than twenty years ago the Air Force doctor told me that I would not survive without a heart transplant. Another doctor tried to tell us a similar story in 1995. Again in 1998, a doctor cautioned that without a transplant, I would die. Then, in 2002, the scenario played out yet again. The doctors were nearly right in 2006. I was on the transplant program, and then not. Left in hospice to die…well, as you can see, I did not. Now, here in 2012, I am on my way to finally have the heart transplant surgery. Wouldn’t it be funny (in a sick sort of way) if I made it all the way to the hospital only to be run over by a bus at the hospital’s entrance. Makes me chuckle just thinking about it.

This is both the end of the journey – and the beginning of a journey. It is the end of the journey to have a new heart. A journey I have traveled for over twenty years is finally over.  (Take a deep breath) The beginning of a new journey is on the horizon. I have the rare opportunity to continue to live my life, despite the fact that nature is telling me I should die. It will be a tough year ahead of us. I say us because both Denise and I will tackle the trials that lie ahead. For me…I want to stay alive and get stronger with each day my eyes are open. I want to honor the gift I am getting this day by living the best I can. As for Denise…my personal guardian angel.  She will be nursing me, driving me around, waiting in rooms as I get biopsy after biopsy and the nearly inevitable hospital stay. Tons of doctors appointments. Many trips to pharmacies and – well, I will fill you in right here as we move forward after surgery.

As we drive to the hospital, my mind once again turns to the family of someone who has just passed away. Through their grief, they have seen clear to let me have their loved one’s heart. Thank you so much. From all of my family, please find peace knowing your loved one’s heart is keeping a pretty nice guy alive. Alive to share your parted loved one’s story of my donor’s kindness, and the courage of his or her family.

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.

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.

               

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.

               

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.

This Week’s Journal – June 8th through June 14th

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

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

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

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

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

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

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

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

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

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

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

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

This Week’s Journal – June 1st through June 7th

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.

This Week’s Journal – May 25th through May 31st

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.

This Week’s Journal – May 18th through May 24th

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.

This Week’s Journal – May 11th through May 17th

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.

This Week’s Journal – May 4th through May 10th

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.