Brian M. Hayden's Blog

You do remember I’ve named my new heart “Stanley”. Calling my new heart, “the new heart” seemed too impersonal. Yes – Stanley is great, and his check up a couple of weeks ago showed ZERO rejection and that he was in perfect health.

Let me begin by thanking the 300,000 +  people from all over the world who have followed my journey and sent me well wishes, good vibes, kept me in their thoughts and sent prayers of all types.  The power of all that you have done has brought me through a most hazardous  journey and found me alive and well three years later.

It is hard to believe that three years have come and gone since that fateful day in 2012, yet here I am.  And although I am here, it did not come without a battle or two.  Among my trials were blood clots, lymph edema, pneumonia, skin disorders, lung disorders, myriad immune -suppression related issues, enlarged right atrium and fatigue to name a few.

Piece of cake. I had far more victories.  I rode a stationary bike 5 miles averaging 10 miles per hour! I can drive where I want – when I want. I can swim with my grandchildren and  do battle in the water and race with inner tubes. Denise and I had the opportunity to be in New York City this past March; during all the snow storms. That didn’t slow us one step. We walked for miles upon miles in the snow – in the storms and we had a blast – and I didn’t drop dead! With minimal assistance, I built a wonderful garden and landscaped our back yard.  Oh, and did I tell you…I am alive to enjoy the company of my family, my friends and my wife Denise.

I have so much more to tell you. Before I do, I would like to share excerpts from the last two chapters of “Road To Transplant” with you. The first chapter,“The Last Five Weeks” will give you context. Its not a long read and it is mostly excerpts. In the second chapter, “Transplant Day” I will take you with me from the time I get up in the morning to the moment we receive the call – to all of the chaos and emotion that ensues. Enjoy these two chapters and I will continue our discussion on the other side. “Transplant Day” took place precisely three years ago today – July 9, 2012.

“The Last Five Weeks”

Waiting for a new heart took on a completely new meaning this week. We recently received word that one of the post-transplant members of the heart transplant support group had passed. I don’t have the details, except to say that the people running the group were surprised to hear the news. It is a stern reminder that heart transplants are no walk in the park. Sure, people hear about them all the time. Certainly, they are safer than ever, even characterized by some as ‘routine.’ Let me reiterate this for you: Survival rates the first year after transplant is 89%. This is the nationwide average, which means for every one-hundred people who get a new heart, eleven of them will die during the first year. Heart transplants are anything but routine.

For me, the choice was simple; either I get a new heart, or I die. All other options were off 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 into their capable hands. Still, after all these years of 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 to drop. I was stable at 218 for several days, and then, two days ago my weight began to rise again; 1.2 pounds to start. No big deal, right? Well, maybe. Today I was up an additional 2 pounds. Combine that with loss of appetite, nausea, and general weakness…now I have a problem. And I came so close to getting through the week with no drama. Oh, well. Add all this to the ongoing problem of getting weaker and weaker, along with an increase in my shaking, and well…I don’t know.

As far as the weakness goes, I can no longer do the simplest of tasks. I always wanted to help by doing the dishes; just stand in front of the sink and do the dishes. It sounds easy, but I can’t stand in one place for that long. My legs begin to shake and they become tired. I can take a shower by sitting on a stool, but then I’m too tired to get out, dry myself off, 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, and as usual, we talk about how I am doing. I shared with her my frustrations and problems. While she was sympathetic, she knows this is the road I must travel, at least for a while longer. She said it seemed like I may end up waiting for a new heart in the hospital, she’ll report to Dr. Kwan, and that I have a regular appointment with him on June 19. I fear that the next few weeks will redefine the nature of my existence. Both Denise and I are afraid, but we keep a positive attitude and follow as much of a normal schedule as we can. We will keep hope close, and we will keep the faith in both the doctors and in God. Oh, we will be scared, but I like to keep things in perspective. I am still here!

A couple days later, I become obsessed with thoughts of my demise. It’s only three months since being listed, yet 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 is, washing my hair. It is too difficult now to keep my arms over my heads for more than a moment. Walking even the shortest distance within my home, is sometimes a struggle, and I fear that before long, walking at all will be added to the list of things I can’t do.

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

Well, my home-health nurse was here this morning, and she restated what she said last week; namely, that I may have to spend my time waiting for a new heart in the hospital, and added, “You have a really sick heart, dude.”

Last Tuesday I went to go see Dr. Kwan, my transplant doctor.  Dr. Kwan ordered the pacemaker 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.

In preparation for the draw blood, she aligned the syringe and vacuum bottles, connects the syringe to the port, and then connects the vacuum tube. Nothing. She tries again and again, all with the same results…nothing. She pushed stuff in and that worked well; I could taste the metallic bitterness of the medicine as it enters my blood stream. When she pulls the plunger on the syringe, again…nothing. Apparently, I’m only getting one-way flow, but I need to have two-way blood flow, both in and out. Soon after, Dr. Kwan came in the room.

We talked for a while and he asked the usual questions, I told him about the increase of becoming tired and weak lately. I also told him of the restrictions I’m now facing in my life. After a brief and deliberate pause, he told me the symptoms I’m experiencing are side effects of the milrinone—the stuff going into the PICC line, and the amiodarone—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 sick, the numbers are now stable and my other organs are still doing fine. Then he discussed my options.

Dr. Kwan said treating advanced heart failure is a bit of a balancing act. Not enough drugs, and my heart gets worse. Too much medicine, and I develop unfavorable symptoms. Nearly all the symptoms I have are unfixable, unless I opt for the VAD—Ventricular Assist Device—an option I have declined before. It’s called a Heart Mate II, check it out online; Dick Chaney used one before his transplant. It is a last resort measure to stay alive while waiting for a new heart, it’s also extreme surgery that I do not want. Dr. Kwan then asked which side effect is worse; dizziness from low blood pressure, or arrhythmias? He could adjust one or the other, but not both. That was easy; I can gladly accept the symptoms of low blood pressure if it meant avoiding arrhythmias. Having chosen my own poison—so to speak—he increased my Toprol to 100 mg. 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 a medication called Cath-flow. I don’t know what it is, but it should help the ‘in and out’ flow problem I’ve been 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, which is the medicine being pumped into me twenty-four-seven through the PICC line. The cautionary tale that came with this medication—paraphrasing—was that this medicine should not be used for more than a year as 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 timeline, I only have four and a half months to find a heart and get off the milrinone.

Now for the not-so-good part. There is an increase in the number of people needing hearts this year, but the number of donors is decreasing. What does that mean? Dr. Kwan would not speculate, except to say the average wait time is six months—could be longer, could be less—but there’s no way to know or predict. He added that the number of nationwide transplants is less this year because there aren’t enough donors. I don’t the solution for this problem. I was listed the week of Valentine’s Day, which puts me at just over four months, but 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 I felt, but then I stopped for a moment and smiled. I like this symptom much more than the threat of being shocked. Oh, yeah. No complaints here, just smiles.

June 29: As you may remember, I have been watching the swelling in my left leg—a symptom of DVT—an issue which continues to come and go, and come and go. I truly don’t know what is going on, so I am putting this issue into the boring pile; it will no longer trigger a ‘drama’ event.

July 2: My blood pressure continues to hinder my daily activity level as it hovers around 80/50. The doctor said not to worry about it, as long as it doesn’t 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 4: Happy 4th 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 like does every week, and today was no different, except about halfway through, I became unresponsive.

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.”

Therefore, you can see when my nurse considered me ‘unresponsive,’ why 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 I became unconscious this time. Even if it was only for a few seconds, my nurse still got all serious. I told her it happens nearly every day, to some degree, but most of the time when it happens there’s nobody around. Is that like the falling tree analogy? If there is no one to see the tree fall, or to hear the tree fall, does it make noise when it falls? The analogy in this case is, if there is no one to respond to, can I, in fact, be ‘unresponsive’?

I talked this over with Dr. Kwan on my last visit, so 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, and is calling Dr. Kwan today, July 4, to tell him what happened. That will almost certainly trigger a call later this afternoon, instructing me to come by his office tomorrow. The episodes continue, though, and when there is someone here to witness the event, it can be a little dramatic, I think, Yet I can’t be sure because I was kind of ‘out.’ The judgment: I will continue to consider ‘unresponsive’ episodes as ‘drama’ events.

For now, at least for this week, I have sidestepped most of the drama from last week. While drama is fun on television, let’s hope for you and me, that television is where the drama will stay!

“Transplant Day”

July 9: Woke up this morning, which seems to be the good news for the day. My energy level at this point is nonexistent, and as I slouch on the sofa, Denise asks, “Are you okay?” In place of normal conversation, our dialogue is filled with questions of my health status. When noon rolled around, we decided to step out and get a bite to eat. We would usually pick a restaurant that offers healthy options, and the burger joint we chose did serve salads. 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. A couple hopeful offers that turned out to be of no consequence. Every day we wait, and every day…nothing.

“Give me a double cheeseburger and a chocolate milk shake,” came from my mouth without a stutter. Denise being, well…ordered a grilled chicken sandwich and a salad. As we sat and ate our meal, we talked about—or rather, questioned—my choice of lunch. I retorted something along the lines that it will be fine. They haven’t called us in six months, and they probably won’t call today. Therefore, we stay, relax, and talk about all manner of topics until it was finally time for us to leave. Denise cleared the table and refilled her diet Coke, then she returned to the table and helped me get up. I was holding onto the bag with the pump and the milrinone, so Denise supported me by the arm and pulled me up.

I adjusted myself, regained my balance, and started toward the exit. I hadn’t yet reached the door when I heard the cell phone ring. It was buried deep inside Denise’s purse, and she stepped outside and answered the call. Quietly, she handed me the phone and said 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.” As I listened to the last syllable fall off 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 and she froze in her tracks. I have…no, we have been waiting more than six months for this call. Correction; we have waited more than twenty years for this call, and now that the moment is upon us, I am speechless.

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

She did, and then added, “The staff on the seventh floor in 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 2:00 p.m., and I will let them know,” she said. With that, I hung up the phone, turned to Denise in shock, and began to tear up. I can’t 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 and told her what was going on. She would make all the subsequent notifications and meet us at the hospital.

We arrived home and I jumped into the shower. By now, the phone calls started to pour in; Denise handled them. By 1:30 p.m., we were out the door and en route to the hospital.

The reality of the situation comes full circle as we begin to enter the hospital, and I begin to shake with nervousness. Denise tightly clutches my hand, and I can tell she is as scared as me. Maybe more so. As we make it to the seventh floor and walk into the cardiac ICU, we are greeted by a nurse who asks if she can help us. After I introduce Denise and myself, the nurse immediately came over and gave us each a big hug, a happy, confident smile, and some kind words. She showed us to my room, in which I would only reside until the transplant. Then she pointed down the hall and said I would be at the surgical ICU for about a week after the surgery. Moments later, a team of two nurses from the surgical ICU came by to tell Denise and me that they would be my nurses when I arrive at the surgical ICU later on. They just wanted to stop by and introduce themselves.

Directly after the introductions, someone came by to get Denise and take her to the lounge area where she’d have to wait until I was prepped. She and others could then come in and see me; normally, only two visitors at a time are allowed in the cardiac ICU. Pre-transplant patients, however, are allowed as many as you can fit into the room. The rules are different for patients who have an 11% chance of dying in surgery.

With Denise comfortably ensconced in the lounge, the staff began to prep me. First, all my clothes must be removed, followed by all the hair on my body below my chin. Yes, everywhere; chest, back, arms, legs, groin…everywhere. Then a special scrub is used to clean me up.

Finally, after what seems like a full day, at 3:00 p.m., I was fully ready to go, and Denise was allowed back in.

As we wait, we’re joined by my son and daughter, and other friends and family, all of whom nervously await some word. I remembered it was about 5:00 p.m., and Dr. Kwan had come in to my room to tell us I was offered a heart, and it looked promising. The heart isn’t yet at the hospital, however, as it’s still keeping the donor alive. Medical teams from all over, are harvesting what they require. It is only after everything is donated, that the heart retrieval team may extract the heart and conduct a thorough examination. He told us not to get too excited yet, because this may 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 seventy years. He has the reputation for being meticulous with everything in his life, including his work. His clothes are freshly pressed, despite the fact that he has worked all day. He tells us to relax, and that if it happens tonight, it will still 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 who love me back. We reminisce about earlier days before the heart attack; days that, 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 p.m., Dr. Kwan again comes to see how we’re doing. He is hopeful now that the transplant will happen, but still cautions us not to become too optimistic. My friends and family took advantage of having his attention and asked many questions. It was during this period that the nurse entered the room.

It was nearing 7:00 p.m., and she told Dr. Kwan and the rest of us that the surgical suite has been reserved for us, Reservations for one at 8:00 p.m. for Dr. Kwan said I would get my transplant tonight, although, he’s not yet certain at what time. I asked if he knew anything about the donor, but all he could tell me was that the donor was a thirty-seven year old male. He would give me no additional information.

Now, it was at this point you could begin to feel the tension in the air. It was palpable; everyone was scared. I could tell Denise was 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 cue, a nurse from the surgical ICU returned. She spoke kindly and said they were ready for me once the transplant was completed. She comforted me and urged me not to be frightened when I awoke; my hands will be restrained and. I will wake with the breathing tube still in use, which they do not want pulled out. Moments later, it was 8:00 p.m., time for my reservation.

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

Swiftly, 8:30 p.m. arrived, and before I could finish saying my good-byes, two gentlemen came in to get me. With one final kiss good bye, an ‘I love You,’ to everyone, and tears now flowing from every eye in the room, I was quietly rolled out of the sight of my guests.

 

 

 

 

 

 

Today, I am enjoying my retirement with my wife Denise, my children, grandchildren , extended family and friends. We live in a small community in Texas where we volunteer in community events and I get vocal at city council meetings if required. I don’t do much writing anymore though.  I wanted to document what I was going through so if I did die before my time,  my grandchildren  might get to know me just a little. As it turns out, my books are giving hope to many people all over the world.  The concept: if I can still be standing after all that I have endured – that they too might one day overcome their trials, hit a chord for people from many cultures and countries

If my story interests you, search through the rest of this web site. Check out the reviews: The other excerpts too. If you want to pick up a copy, follow the link to the Amazon outlet that services your country.

My story is igniting hope in people with all types of diseases, and while I cannot say that hope will cure all of them, I can say for certain that the road traveled without hope is a dark road indeed.

Thank you, to the family that gave me their loved ones heart. Your family is in my prayers often and I think about my donor everyday. You gave me my life back and that is a present I will never forget.

Community Charity Book to Fund New Library/Literacy Programs

Charity, they say, begins at home, and sometimes that ‘home’ is much more than four walls with a roof. A home is also a community. In the city of Universal City, Texas, that community has come together in a big way! Residents have applied pen to paper to create fantastic stories and amazing poetry which have all been compiled into a book, ‘Tales and Poems from Universal City, Texas’, to benefit this community home. How? Simple. All sales from this warm and wonderful book will go towards a new library and projects that support literacy in all its forms for UC’s citizens.

Resident author and organizer Brian M. Hayden (author of ‘Death: Living to Talk About It’ , ‘Road to Transplant’ and ‘Five Short Stories and Twelve Poems’) with the help of author/journalist Michele E. Gwynn(author of ‘Exposed: The Education of Sarah Brown’ and ‘Harvest’), have worked together to market Tales and Poems from Universal City, Texas which has launched on CreateSpace (an Amazon affiliate), and is now available to the public for sale. Friends of the Universal City Library, a 501(c)3 non-profit organization is the custodian of all the proceeds.

Tales and Poems from Universal City, Texas  

As the outspoken Mr. Hayden shares, “”In 2014, politicians at all levels consider the arts an elective that children do not require. There is war to pay for…and big businesses to bail out!” Indeed, with funds being cut from education in Texas ($4 Billion in 2011) due to budget shortfalls, and only $3.2 Billion added back in for the 2014-2015 budget which does not adequately make up for the loss nor does it keep at pace with per-student funding, failing even to hit at pre-recession levels, communities have to look within to correct what our elected officials fail at accomplishing. Providing for an educational hub that meets the needs of its community. While Texas felt it was necessary to make sure businesses received more than $1Billion in tax cuts in the latest budget, it either refused to see or failed to see how those tax revenues could benefit school programs and libraries for every single child and resident of the great state of Texas.

With that in mind, forward-thinking and compassionate individuals in the town of Universal City, Texas (a population of about 19,000, largely military families) decided that the old building currently housing books and hosting a slew of helpful programs needed a massive upgrade. After all, the old building used to be, according to Kim Turner, Assistant City Manager, “a town hall, a fire department, and a police department, before someone decided to turn it into a library.” The age of the building is showing in every crack, creak of the floor boards, and problem that pops up requiring repairs. In a city that is growing every day, it simply does not meet the needs of the community.

In 2014, the city council approved $3.2 million to build a new library. Yay! Okay, now that everyone has done a happy dance, let’s break that figure down. It costs $200 per square foot for a new one. Worse, costs for moving and storage of the old library and more miscellaneous expenses weren’t even considered when these moneys were approved. So citizens stepped up with an idea to fill in the gap.

Full of stories and poetry written by UC’s mayor, John Williams, Mayor Pro-Tem, Richard Neville, City Councilmen, residents and their children, and even published authors Brian M. Hayden, Michele E. Gwynn, and Crystal Faldalen appear in this epic book along with full-color images from around the community. It’s definitely a book filled with heart from cover to cover.

This book is for those who support libraries, support community literacy programs, and have a love of reading. It’s family-friendly, fun, and inspirational.

From our home to yours, we, the citizens of Universal City, Texas invite you to learn more about us, and encourage you to support our library and programs such as senior day, community classes, children’s reading time, and more by purchasing Tales and Poems from Universal City, Texas.

This book is what communities are all about!

Visit CreateSpace here to purchase your copy today! We extend our heartfelt thanks and eternal gratitude for all your support.  Receive a 20% discount through Createspace using this discount code. 8ASS6GCM   Discount good through September 21, 2014.

Join us for the internet release party too! I will post another blog post right here Saturday, September 20th. Ask questions, comment, answer trivia questions about our small community and win prizes. Also, join us on Facebook:  https://www.facebook.com/events/68869...

 

Finally,  with these posts,  signs of writing to an audience emerge. My work up to now was written as if I was talking to myself. This skill presents at a good time. This blog is nearly complete and there is a book that must arise from these notes.

Did you sense anxiety in my words? I was accustomed to dealing with my heart problems. Now, the doctor was telling me I may have liver problems: specifically “Cirrhosis”.  It was easy for me to believe. Afterall, I spent a lifetime drinking. I remember thinking; “I can handle one or the other, but two organs failing…” It was too much.  Reading these posts after a few years, I can see the frustration in my words – the anxiety.

A final note:  I talked about a D.N.R. in today’s post. Having been on both sides of the DNR dilemma,  I can tell you with certainty that executing a DNR is the best gift you can give your family. Understand, the DNR can state “keep me alive at all costs”. It is not just for “pull the plug” instructions.

Pressure, who needs it? ME!

May 18, 2010 by brha99 

This new year is really not looking good. Two months past, two stays in the hospital. I wonder if we can make it three for three? It is taking me much longer to recover from that last episode than I thought. I am still having trouble with stomach distention. My doctor decides to do another heart cath procedure. They will be measuring the pressures in my heart and lungs.. Particularly the right side of my heart. Distended stomachs are most commonly symptoms of right-sided heart failure. For me, this would be devastating. The left side of my heart is already very sick. If the right side were to fail…well, let’s just say we don’t want that. I went into the cath lab as I had many times before. Everything was going as planned, except one thing. I get no sedation whatsoever. That’s right. Apparently sedation may have influence over the pressures, so we’ll need to do this completely drug free. Man, I am already hating this. I get prepped, and rolled into the room. It is very cold. I knew that from the other times, except all the other times I was given drugs that made me not care if it was cold. Well, it was cold, and I cared. To help put this pressure thing into perspective, let’s walk through how the blood is handled between the heart and lungs.

The blood comes from the body, to the right side of the heart. The top chamber, the right atrium catches the oxygen deprived blood. The atrium then pushes the blood to the right ventricle. It is at this next interface that the problem may be occurring. The right ventricle gathers the blood and sends it to the lungs for more oxygen. It must push it hard enough to get through the lungs and back to the left atrium of the heart. The left atrium sends it to the left ventricle Then with a mighty 15% ejection fraction of my sick left ventricle..whoosh, the blood, full of oxygen goes out into my body. Each body part along the way has pressure. If the pressures are not in sync, or one is too high or too low, a blood flow problem may ensue. Does that make sense? Well, as it turns out, the right side of my heart has good pressures. My lungs on the other hand..not so much.

DNR

May 18, 2010 by brha99

Over the past couple of months we’ve been talking about my health, or lack thereof. As my family and I were confronting all of these trials, one question kept popping up. What should we do if you become incapacitated? What are your wishes? You know, that if something comes up, and you are unable to speak for yourself, your family will have to make those decisions for you. I have seen this first hand. When my father in law was in the hospital after his illness, the doctors told my family that he would never recover. He was unconscious. His brain was, for all purposes, not functioning. He was hooked up to a machine that breathes for him. The doctors are suggesting that they disconnect him. Pull the plug, so to speak. The family, my wife’s brothers and sisters were all very upset. Do this, don’t do this. It was hard. Unless you’ve had to confront this situation, you can’t know how hard. Eventually a decision was made, and my father in law had the machines turned off. Shortly after that, he passed. Why do we put our loved ones in such a precarious position. To have to make a decision to keep you alive or not, all the while, grieving over the impending death of a loved one. It’s not fair, and there is something we can all do. It’s called a DNR. Do not resuscitate order. Actually, it spells out for the reader when to pull the plug, and when to keep you alive. It’s up to the patient. It’s up to you. You decide. You take that agonizing responsibility off the shoulders of your loved ones. In addition to the DNR, you need to have a frank and honest discussion with your family. Tell them how you feel about life and death issues. Let them know verbally what you would like to have done in various situations. It is the most precious gift you can give your loved ones. Perhaps the last gift you give your loved ones. Don’t force them to make decisions about your life. Write a DNR. Do it now before it is too late.

Oye, I gotta go see a liver guy

May 19, 2010 by brha99

For the next couple of weeks, I seem to be settling in. A little weight on, then a little weight off. My weight is like a roller coaster. I feel sometimes that I will never be able to gain control of me again. And as I say that…I am on the phone will Jennifer, my chf nurse again. We made some adjustments in my medicines., but the next day I find myself back in the hospital. It is the same routine I go through each and every time. Honestly, I think the folks on the ward are getting tired of seeing me. I know I am getting tired of being in the hospital. Luckily, this stay was only two nights. The got 4 liters off of me very quickly. I went home to rest.

As we round the corner from winter to spring of 2010, I look ahead just a bit. My 56th birthday is just there at the horizon. Now who would have ever thought I would make it to my 56th birthday. Not me. Not the odds makers in Vegas either. ( I’m guessing) I just know that I am so happy to be here. If I could just find a way to stay out of the hospital. Well, that won’t happen in April. Denise and I were driving around, and I began getting chest pain, again. This is nothing unusual. I get chest pain all the time, but this time was different. I did have some of the same pain in my chest, but instead of the pain radiating up my neck to my jaw (the usual route), it was moving up the side of my neck. Well, what the hell? I am back in the emergency room. After cat scans. ultra sound exams and the like, I found myself back in the hospital. Big surprise. They ruled out a blood clot or other artery related problem. The doctor did think, however that at least some of my fluid problem was because of my liver. It may be failing, or it may be early in developing cirrhosis. He didn’t know, but he wanted me to see the liver guy. The referral was made.

_____________________________///___________________________________

Get the complete story. Check out my bestselling books.

http://www.amazon.com/Brian-M.-Hayden/e/B00520BT8U/ref=ntt_athr_dp_pel_pop_1

                                                                               

Greetings. I needed a break. Posting these blogs every week is not the problem. Reliving these events is mentally exhausting and emotionally draining.  I am increasing the size of the posts.  Making these posts bigger will help us get through them faster. Many of you have shown an interest in my process, and we still have a long way to travel. This is still the first book.

There is a theme you may catch as you read through these memories of mine. “Death”.  Once I left hospice, it took a few years to adjust to the notion that I am not necessarily dying. That shows up more times than I remembered. I say remembered because these posts were drawn from my memory. Soon, these posts will reflect what has happened on the day it actually happened. We’ve nearly caught up with real time. (Real as it was back then.)

Are you sick again!!??

May 15, 2010 by brha99 |

The thing about heart failure is that it is so individual. The symptoms you might exhibit for heart failure may not be the symptoms I would present for basically the same thing. For many people, heart failure shows up as swelling in their legs, particularly low in the ankles. After all, we are talking about gravity. Everything should settle to the lowest point. Right? In addition to swollen legs, some people get fluid built up in their lungs. Backed up actually. That causes the crackling sound. It also makes it harder to breathe. Again, let me emphasize: I AM NOT A DOCTOR. Nor am I a nurse or any other health care professional. I offer this information based on my understanding from the experiences I have had, and the research I have done to understand what’s been going on with me. Research that has been going on for 20 years. Let me also say this: while I am not a health care professional, I have a better than average understanding of medicine. During my time in the Air Force I worked in public and environmental health and taught an assortment of medical and scientific topics to doctors, nurses veterinarians, medical/veterinary technicians at the Air Forces’ School of Aerospace Medicine.

Ok, lets get back to it. My symptoms of heart failure are these: my stomach begins to grow. I build up fluid in my abdomen. Sometimes over a gallon of fluid. I also get fluid in my lungs and swollen lower legs, although the lower leg swelling occurs less frequently. When my gut distends, it becomes difficult to breathe. The fluid pushes up on my diaphragm so breathing becomes a task. That makes me tired. I get weak, tired, out of breath, uncomfortable and my skin turns this nice shade of grey. Denise can tell immediately if I am in heart failure. As 2009 rolled on, these symptoms began occurring more frequently. At first I simply went to my CHF nurse (congestive heart failure). She made some medicine adjustments and sent me home. By the end of the year 2009, my life would once again take the wrong turn, and a new era of problems would arise.

Is this the beginning of the end?

May 16, 2010 by brha99

The new year was here. 2009 was behind us and 2010 smiled brightly ahead. As I always do, I take a moment to that God that I am still alive. That I was lucky enough to spend one more year with my family and friends. My heart failure is getting worse though. I am not sure how much longer I can hold off going to the emergency room. I call my chf nurse. We talk for a minute. I’m told to get to her office so she can better assess me. Denise and I walk in. My gut distended to the point I cannot buckle my pants. I am 20 pounds over my dry weight. Dry weight is the weight determined to be normal for me. It is the number we compare all weights against to determine if I am retaining fluid. My legs too. I cannot breathe easily either. The fluid pushing up against my diaphragm making the motion of breathing a struggle. I am very tired, and of course my skin is a light shade of grey. All of the symptoms. She made a call. A few minutes later my cardiologist came by and examined me. The decision. Lets hospitalize me and get some fluid off. I went in that very afternoon. Medicines began pouring into my veins. I was on a very restricted diet. Only one liter fluid to drink per 24 hour period. That is equivalent to about 1 quart. That is hard. That includes the water I need to drink to take my pills. They track what goes in, and they track what goes out. The difference is the progress we’re making. The first 48 hours showed excellent results. 4 1/2 liters net after deducting for what I drank. By the time I left the hospital; 12 hours later I was 15 pounds lighter. I was discharged, but I was very weak. Taking that much fluid out messes with heart pressures, lung and liver pressures. I was exhausted. I would take a week of rest at home to get my footing back. Over time I felt a bit stronger, but that lasted about a week. By mid February my weight had returned and I was sick as hell. I asked myself as Denise drives me to the emergency room: will this be the year the doctors have all predicted? Is this finally the last chapter?

Can’t the lungs just get along

May 16, 2010 by brha99 

This year is not turning out the way I had wanted it to. I mean look; it’s only February and I am making my second trip to the emergency room. You may be asking yourself at this point, “why do you need to go to the emergency room?” The fact is, I know (pretty much) what’s wrong. Why can’t I manage it from home. Perhaps throw in some support from the chf nurse by phone. And I would tell you that I do. Some weeks I am on the phone with Jennifer (ok, I put a name to my chf nurse…Jennifer) 2 or 3 times a week. Sometimes 2 or 3 times a day. Most of the time that works. The fact is, my health is really on a balance beam. I little too much water…bam. I go into heart failure. The wrong processed food: too much salt and I add 3 pounds of fluid. Too little electrolytes (sodium and potassium) and my heart starts jumping around. That also makes my blood pumping even more inefficient. Any one of a hundred combination of things can swing my health left, or right. It doesn’t matter which way. I am still going to fall of that balance beam. Staying out of the hospital is a full-time job for both me and Denise. We watch everything and we do all we can to avoid it. Sometimes, like today, as Denise drives me to the emergency room, I fell off the beam. Sometimes I need help getting back on. Does that make sense?

So, we get to the emergency room. I get checked in, again. The usual players in the saga are there. They all come up to me, as they discover I am there to say hello. Bob is here today. You remember? My personal emergency room nurse. Not really, but he is very helpful to Denise. As they begin the assessment process a discovery is made. This time my lungs seem to be the primary culprit here. Your heart and lungs work closely together. If one doesn’t work right, the other organ may be affected. The pressures in my lungs are not right. That is causing a back up of blood in my heart, and further backing up fluid in the rest of me. This hospitalization is going to hurt.

Sometimes, hospitals hurt

May 17, 2010 by brha99 

I was right about this hospitalization hurting. They began by giving me a diuretic to pull some fluid off my lungs. Well, it was working, but while taking fluid, it also put my electrolytes off-balance. That made me have many more arrhythmias than I normally have. While we are on that subject, how many skipped beats or pvc’s would be considered high numbers. Ten a day? Perhaps 10 an hour? How about 10 a minute. That sounds like a lot. I average about 15 pvc’s every minute. That’s over 1,000,000 pvc’s in the last 4 years. The defibrillator/bi-v pace maker keeps track of such things. That is one of the reasons I am in the predicament I am in. When I throw a pvc, my pace maker stops working. I don’t understand the details, except to say that because of the many pvc’s I only get therapy from the pacemaker 70 to 80 % of the time. I also risk an increase chance of v-tac, as pvc’s running simultaneously could convert to v-tac. So, back to our present hospital course. When you electrolytes are low, they add them. In my condition they add them intravenously. That’s the pain. Potassium is very caustic. It burns as it hits your veins. You can feel the burning and stinging through each cell as it enters your body. So painful. They stop it. Flush the IV line and begin again. Still too much pain. They try diluting it. A bit better, but now it’s taking too long to get into my body. Finally, a doctor told the nurse to find a large vein. That apparently makes it tolerable. They used one of the veins in my neck. At last, the potassium is going in, with no bad side effects. Once in, my heart began to relax, and I could continue to get fluid out of my body. As soon as the doctors felt my lungs were dry, they began giving me inhaled steroids. That, in conjunction with the continued fluid extraction got me feeling better again. You might imagine, that after an ordeal like this I would be tired. I was discharged from the hospital after 4 days. I lay at home, weak and fragile from the therapy. It would take a week to regain my strength. As lay there my mind wanders. Will this ever get better? Is this how I will die?

___________________________________///_____________________________________

Get the complete story. Check out my bestselling books.

http://www.amazon.com/Brian-M.-Hayden/e/B00520BT8U/ref=ntt_athr_dp_pel_pop_1

                                                                               

Greetings. Merry Christmas. For my Jewish friends and family, I hope you had a wonderful Hanukkah.  Wonderful days for my friends who do not celebrate either.

I have a few things on my mind.  As this doesn’t happen often, I thought I would share those thoughts with you.

My grandchildren are growing too fast.

My children have turned into adults! I am very proud of them.

I do not like the direction our country is going. The government is the worst in my memory, and I am nearly 60 years. Congress is useless, our president is likewise rolling through the motions of his job…seemingly with impunity. They should all be fired. It is their retirements which should come under scrutiny and cuts, not the military.

I recently moved to Universal City, Texas. A small town of roughly 19,000. I thought that I would get involved in the community. Actually, both Denise and I are happy to get involved, supporting fundraisers, volunteering at various community functions…that sort of thing. I am getting involved with the local library as well. Our librarian is full of energy and ideas.  She is doing wonderful things. The problem is, the library is in a very small, very old building. Literacy programs are next to impossible, as are other programs that would promote reading, writing and books in general. New libraries are expensive. More than 5 million dollars. I applied for an opening at the city’s library commission. Even small towns work slowly.  I  am going to take on this small bureaucracy and work to get us a new library.

One year and five months ago, a 37 year old man had a horrible car crash. One year and five months ago that man’s family offered his heart to a total stranger – me. I pray for your loved one, whose heart beats strongly within my chest. I pray for you, his family and hope you have found peace.

Peace, Love, Life, Family and Friends – my prayer is for each and every one to find peace, love, life, family and friends and have a wondrous new year.

 – Call for guest bloggers –

Last year I published guests nearly every week of the year. I cannot do that this year. I would, however like to continue my guest blogger segment. I will only publish about 20 guests in the coming year. My guests write about the world of books and writers. Whether it is advice on query letters, writing styles,, descriptive writing or genre writing, my guests enjoy having their work shown to thousands. Over the past ten months, my blog has received more than 175,000 visitors. I expect 2014 to exceed 200,000.

If you are interested becoming a guest, let me know. I will send you the information. Check out the guests that I’ve published this year. Read their posts. You’ll quickly get the picture. It is a great way to get you and your work in front of an international audience. Drop me a note at brha99@brianhayden.com

______________________________________///__________________________________

HOLIDAY SPECIALS

Take advantage of these special prices. My books make a great gift.

for Christmas.

My books on Kindle – Huge discounts. A perfect gift. Amazon prices will slowly rise over the next 6 days. Get them now!

http://www.amazon.com/Brian-MHayden/e/B00520BT8U/ref=la_B00520BT8U_rf_p_n_feature_browse-b_1?rh=n%3A283155%2Cp_82%3AB00520BT8U%2Cp_n_feature_browse-bin%3A618073011&bbn=283155&ie=UTF8&qid=1387397240&rnid=618072011

 

40% OFF Paperback copies of “Road To Transplant” and “Five Short Stories and Twelve Poems”              

                               Purchase directly through Createspace. 

Road To Transplant – discount code: KQ9U9RFW http://lnkd.in/bBZrCUd

5 Short Stories and 12 Poems – discount code: GNPWPEJ5 http://lnkd.in/baej43s

 – All discount programs expire on December 24th –

http://www.amazon.com/Brian-M.-Hayden/e/B00520BT8U/ref=ntt_athr_dp_pel_pop_1

 

I do not have control of the prices for “Death:Living To Talk About It”. That would be the publisher. Discounts do not apply to that book.

Greetings. Merry Christmas. For my Jewish friends and family, I hope you had a wonderful Hanukkah.  Wonderful days for my friends who do not celebrate either.

I have a few things on my mind.  As this doesn’t happen often, I thought I would share those thoughts with you.

My grandchildren are growing too fast.

My children have turned into adults! I am very proud of them.

I do not like the direction our country is going. The government is the worst in my memory, and I am nearly 60 years. Congress is useless, our president is likewise rolling through the motions of his job…seemingly with impunity. They should all be fired. It is their retirements which should come under scrutiny and cuts, not the military.

I recently moved to Universal City, Texas. A small town of roughly 19,000. I thought that I would get involved in the community. Actually, both Denise and I are happy to get involved, supporting fundraisers, volunteering at various community functions…that sort of thing. I am getting involved with the local library as well. Our librarian is full of energy and ideas.  She is doing wonderful things. The problem is, the library is in a very small, very old building. Literacy programs are next to impossible, as are other programs that would promote reading, writing and books in general. New libraries are expensive. More than 5 million dollars. I applied for an opening at the city’s library commission. Even small towns work slowly.  I  am going to take on this small bureaucracy and work to get us a new library.

One year and five months ago, a 37 year old man had a horrible car crash. One year and five months ago that man’s family offered his heart to a total stranger – me. I pray for your loved one, whose heart beats strongly within my chest. I pray for you, his family and hope you have found peace.

Peace, Love, Life, Family and Friends – my prayer is for each and every one to find peace, love, life, family and friends and have a wondrous new year.

 - Call for guest bloggers -

Last year I published guests nearly every week of the year. I cannot do that this year. I would, however like to continue my guest blogger segment. I will only publish about 20 guests in the coming year. My guests write about the world of books and writers. Whether it is advice on query letters, writing styles,, descriptive writing or genre writing, my guests enjoy having their work shown to thousands. Over the past ten months, my blog has received more than 175,000 visitors. I expect 2014 to exceed 200,000.

If you are interested becoming a guest, let me know. I will send you the information. Check out the guests that I’ve published this year. Read their posts. You’ll quickly get the picture. It is a great way to get you and your work in front of an international audience. Drop me a note at brha99@brianhayden.com

______________________________________///__________________________________

HOLIDAY SPECIALS

Take advantage of these special prices. My books make a great gift.

for Christmas.

My books on Kindle – Huge discounts. A perfect gift. Amazon prices will slowly rise over the next 6 days. Get them now!

http://www.amazon.com/Brian-MHayden/e/B00520BT8U/ref=la_B00520BT8U_rf_p_n_feature_browse-b_1?rh=n%3A283155%2Cp_82%3AB00520BT8U%2Cp_n_feature_browse-bin%3A618073011&bbn=283155&ie=UTF8&qid=1387397240&rnid=618072011

 

40% OFF Paperback copies of “Road To Transplant” and “Five Short Stories and Twelve Poems”              

                               Purchase directly through Createspace. 

Road To Transplant – discount code: KQ9U9RFW http://lnkd.in/bBZrCUd

5 Short Stories and 12 Poems – discount code: GNPWPEJ5 http://lnkd.in/baej43s

 - All discount programs expire on December 24th -

http://www.amazon.com/Brian-M.-Hayden/e/B00520BT8U/ref=ntt_athr_dp_pel_pop_1

 

I do not have control of the prices for “Death:Living To Talk About It”. That would be the publisher. Discounts do not apply to that book.

This blog, “Birth of a Book” was my way of showing you how I organized my thoughts to write my first memoir, “Death:Living To Talk About It”. I say this to remind you why I am going through these old blogs.

The whole thing was a learning process for me. If you have followed along, you could see that I grew as a writer.  I started using paragraphs, I added additional information about the medical stuff, and then in today’s blog – a picture was used.

It will not be long before the first memoir is ready to be written. I am glad that I took the time to write down my thoughts. Doing so accomplished two things.

First, writing this blog helped me get my thoughts together. Although it was difficult at times to remember some of the events, it was a cleansing of the soul for me. For those who have written memoir or are contemplating writing one, this soul cleansing feeling is an unexpected, but gratifying sequelae of the process.

Secondly, writing the blog was practice. You’ve heard the adage, “practice makes perfect”. Well practice made me a better writer.

I seemed off balance during this period of my life. Having survived hospice was great, but I was still spending far too much time in hospitals. It is like one foot on my grave, while the other foot is on a banana peel. A precarious perch to stand upon.

Peace comes in small pieces

May 13, 2010 by brha99

You may not have figured it out yet, but I don’t like to rush into things. Especially when it comes to my health. Denise and I had many discussions with various doctors about which option to choose. Filter or lots of Coumadin. The final choice: Coumadin. All the doctors, Denise and I agreed. That is the best approach for now. So how do we move forward? Start popping pills! We’ll start with 10 mg per day and check blood in a week. About 2 days into the increased dose I noticed something. My dog had jumped up on me when I walked in the door. I now have a steady stream of blood trickling down my arm. Maybe we are where we need to be. Maybe we over shot? I went to the lab to get checked. That afternoon, I received a call from the nurse that manages my coumadin levels. She told me the INR was 3.1. Let’s keep you on 10 mg a day and re check your blood in a week. So that’s how it would be. Every scratch, every bump became a bleeder or a bruise. I really need to start being more careful. We went back and forth with the lab for a few months. By the end of 2008 I was stable at 3.2 or 3.3. For now, at least this particular problem can be moved to the back burner.

Did I tell you. August 2008 brought with it another anniversary. Our 34th. November let me share another Thanksgiving, and December allowed me to participate in another Christmas with my family and friends. A year after I was told I would die, I am here. A year after that horrible home hospice, I am still here.For now all was peaceful. For now, all was well in the world. Well, that can’t last too long.

I don’t know

May 14, 2010 by brha99

Well look at this. 2009 is here, and so am I. I guess for all the tests doctors have done on me, and all the knowledge doctors have, there really is no expiration date on people. Before we move on, I would like to take this opportunity to figure out just why I am still alive. Still alive, despite all evidence to the contrary. As I look back on the past 20 years, I tried to count how many days I was in the hospital. Impossible, for it was many times more than one year. How many “should have died” episodes: well there were nearly 200 episodes of V-tac. Episodes which required some form of therapy be administrated by my defibrillator. About 20 shocks, and the rest I was paced out of the arrhythmia. Why am I alive? My heart barely pumps blood and my lungs only work at about 40%. I don’t know. There were lots of people praying for me on a lot of different occasions. I am grateful to those that prayed for me. They took the time to think about my welfare. Did it help? I don’t know. My wife stood by me through countless trips to the emergency room, and endless stays in the hospital. With lots of love and lots of care giving, did that keep me alive? I don’t know….. I am blessed to have 2 great kids who helped support their mother and I through all of this, while simultaneously trying to build their own lives. Perhaps their love and support kept me alive. I don’t know. Lastly, all the friends and family both here in Texas and scattered around the country called and came by to support my family and care for me. I guess that could have helped keep me alive. I don’t know. What I do know is this: I am blessed with a wonderful family, great friends and a loving wife. If I knew nothing else in this world, that would be enough for me.

A new beginning….for now

May 14, 2010 by brha99

                                      

As I was saying, here we are in 2009, and guess what? I’ll tell you what. I have a cold. Not such a big deal you say. Well you’re right. I deal with it a couple of days and it doesn’t get any better. After about a week, it seems to be moving into my chest……that’s it. This stupid simple little cold has now blossomed into pneumonia, pleurisy and a nice COPD exacerbation. And of course I was back in the emergency room. Having been a frequent flyer in the emergency room, I was handled quickly and with ease directly to the back. I felt like a V.I.P. Then I looked at the chart. My spo2 was not at 80%. Remember the little discussion we had about spo2? Well, I hope so. As it turns out, Bob, our favorite E.R. nurse was not there. I settled for someone else. It’s like going to a favorite restaurant. The one with the famous chef. You get there only to discover he is on vacation, so you settle for the number 2 guy. In any case, this hospitalization was the first, and as it turns out the last time I was hospitalized for a long while. Let’s settle back, and try to enjoy the summer. I am packing my bags, my oxygen and all my strength and taking a road trip. Denise, her sister and brother in law and I will be traveling around the country. It should be fun. I hope I can survive it. This picture is of me trying to walk up the sub way tunnel in NYC.

Sorry I missed your funeral mom

May 14, 2010 by brha99

The road trip lasted about 3 weeks. It was great. I hadn’t been out of the house since I went to Tucson when my mother was dying. I know I didn’t tell you about that. In retrospect, I think it’s an important story to tell. It all happened in February 2007. As you will remember, I was very sick, and under the care of the infamous Dr Kwan (sounds like a James Bond movie). My mother was dying. Complications of diabetes, loneliness, and other things. You see a year or so earlier we lost my father. My mom and dad we married nearly 60 years. She was never the same after my dad died. I went to see her shortly after I arrived. Pushing my walker, oxygen strapped on securely. Going through the hospital, the nurses must have thought I was a patient. I looked like one. That hint of grey in my skin tone, wobbling along the hall way. When I saw my mother I knew she wasn’t going to make it. Everything about her care seemed to be wrong. It really wasn’t working. So, after careful deliberation with my brother, sister, mother and doctors, we all decided hospice was best for her. They could control her pain and keep her comfortable. A few days later, my mother died. When it came time for the funeral, my sister came into my room (I was staying at her place) to wake me. Didn’t work. As hard as she tried, I wasn unresponsive. She called the ambulance, got me to the hospital, then went to the funeral home, took care of my mother, then came back to the hospital to take care of me. Talk about your bad day. She called Denise. hopefully she could shed some light on what’s happening to the doctors. She did . A day later Denise was out there and we both found our way home. On Amtrak. You see I couldn’t fly.

I mention this story because untill the 2009 road trip, that was the last time I went anywhere. I don’t count going to doctors offices and hospitals going somewhere. I hope you can see that when you put this 2009 road trip into perspective, it was very special, and truly a breath of fresh air.

___________________________________///_____________________________________

Get the complete story. Check out my bestselling books.

http://www.amazon.com/Brian-M.-Hayden/e/B00520BT8U/ref=ntt_athr_dp_pel_pop_1

                                                                               

HOLIDAY SPECIAL*HOLIDAY SPECIAL*HOLIDAY SPECIAL*HOLIDAY SPECIAL*HOLIDAY SPECIAL

40% OFF Paperback copies of “Road To Transplant” and “Five Short Stories and Twelve Poems”

Purchase directly through Createspace.

Road To Transplant – discount code: KQ9U9RFW        https://www.createspace.com/4002050

5 Short Stories and 12 Poems – discount code:  GNPWPEJ5   https://www.createspace.com/4057479

 

Half a year went by and I was still alive. It seemed I may not die afterall. At least not yet. This period of time was littered with health events that should have landed me in the emergency room. I was determined to avoid that outcome at all cost. (and I do mean at all cost)

However, after a bit of back-peddling with the cardiologist, I was back on track working to control my heart failure.

But heart failure has left its mark, and myrid other problems begun surfacing. One battle after the other. That had become our way of life.

You may or may not have noticed – my spelling and grammar had improved. The book has still not been conceived, but I grew closer and closer to realizing the book with each blog post I wrote.

Life does spring eternal

May 10, 2010 by brha99

By the spring of 2008, I was still alive. Imagine that. A doctor mistakenly thinking I would be dead by now. I guess the expiration date tattooed to my ass was incorrect. I am not saying that I am well. On the contrary. I am still very sick. But I am alive, and here we are, in the spring. It occurs to me that there is something poetic about that. Spring is renewal. It brings forth new crops, new animals, and apparently renewed hope for continued life for me. Denise and I talked. If I am getting better, maybe I should start taking some of the medicines again. Oh, and the defibrillator. What should we do about that? We went to see our cardiologist. He is so great. A few months ago I had ask him to turn off my defibrillator and take his drugs back. Now, I am asking for the reverse. He explained: my heart was able to rest while the pace maker was doing its thing. Now after some months, my heart is better able to take advantage of the therapy. My ejection fraction is once again readable. It stands now at 15%. Not good by any measure, but better than zero. He happily agreed to turn the defibrillator back on. We went through all the drugs he wanted for me. We talked about it, and went back and forth for a while. Finally, I had a list of drugs I would take. Drugs that would support my heart and not make me feel drugged up. So, once again, with a hopeful heart, we press on to greet the world.

DVT by any other name is still a blood clot

May 10, 2010 by brha99

Greeting the world is a lot tougher than it looks. Nothing about my ailments is under control. I do, however use a self-hypnosis exercise to help me deal with the stress, the anxiety and of course the pain. And it works good most of the time. Never the less, there are certain things that self hypnosis cannot control. Blood clots come to mind. Summer 2008 was upon us and my left leg is swollen, red, and painful. Very painful. Having had a few DVT’s ( if you will remember, Deep Vein Thrombosis – blood clot in my leg ) in the past, I immediately knew what it was, and what was going to happen. At least I thought I knew what would happen. Denise took me to the cardiologist. He looked at it, and ordered an ultrasound. That is one of the ways to identify a DVT. Sure enough. It’s another blood clot in my leg. But something was different this time. Something had the doctors whispering. The day before I was at the lab, getting my blood test that measures if the coumadin is working. It was. I was at theraputic levels of Coumadin and still developed a blood clot. Well, this is a problem. One which required the skills of a Hematologist. (blood doctor). They put me back on the Lovonox (shots in the stomach) and I awaited the appointment.

Hemotology/Oncology..Geeze just pick one

May 12, 2010 by brha99

I had been to the Hemotology office before. At the Air Force’s Wilford Hall Medical Center Hemotology was with Oncology (cancer). They call the office “Hemotology/Oncology”. Well, I don’t know about you, but that is a pretty scary place to go. Consequently, I was a little nervous. The waiting room was full of people. Most looked sickly. In my mind, I worked the room. Secretly scrutinizing each face, and guessing if the are here for Hemotology, or Oncology. About half way through the room, my name was called. With my portable oxygen strapped to my back, and cane firmly held by my hand, I can only think that the sick people I was scrutinizing were doing that right back at me. I sensed them staring as I was shaking  rising from the chair. Yea, they were checking me out. Then I thought: maybe it was my remarkably nice ass they were all looking at…No. I looked like crap. The nurse brought me to an exam room. A few minutes later the doctor walked in. REALLY?? The doctor looked like a kid. If you are over 50 years old, aren’t the doctors getting younger? I am sure they are. Somehow he was able to confirm that my blood clot was there, despite having a therapeutic dose of coumadin in me. So, he came up with this plan. He would increase my Lovenox ( I hate that). He took an ultrasound of the blood clot that day. In two weeks, he would do another ultrasound of the blood clot. Plenty of time for the Lovenox to work. The clot might not be gone, but it should definitely shrink. Off I went. It was a hard two weeks. My stomach had puffs of black and blue marks all over it. It was sore too. The belt line on my pants rode on the strip of belly I needed for the shots. All in all, it was a very uncomfortable 2 weeks. I went back to the Hemotologist and he took the new ultrasound. Well, the results were completely unexpected. The clot had not changed at all. I felt a sinking feeling in my gut. Now what?

To bleed or not to bleed…What a choice!

May 13, 2010 by brha99

To clarify the situation; I had a blood clot in my left femoral vein (DVT) AND I had enough anti coagulant (blood thinner) in me to prevent clots. Hmmm. What do we make of the situation. The doctor says that “probably” (they never commit) the blood vessel was damaged over the years. Afterall I did have more that 5 blood clots in that same area. Each time I get a blood clot, damage is left behind. There were a couple of options. One option is to use a “Green Field Filter”. It’s definition comes to us today from “The free Dictionary” by Farlex.

An inferior vena cava filter, also IVC filter a type of vascular filter, is a medical device that is implanted into the inferior vena cava to prevent pulmonary emboli (PEs). Most filters are placed for the following reasons. Failure of anticoagulation; eg development of deep vein thrombosis (DVT) or pulmonary emboli (PE) despite adequate anticoagulation. Contraindications to anticoagulation; eg a patient at risk of PE who has another condition that puts them at risk of bleeding, such as a recent bleed into the brain, or a patient about to undergo major surgery Large clots in the vena cava or iliac veins Patients at high risk of having a PE

Now the problem with option 1, the filter, was this: my heart function sucks. I have a terrible time circulating blood when there are no obstructions. If I threw a clot, and the filter caught it, It would be devastating to me. It would dramatically slow circulation in a body that cannot afford to have the circulation slowed. The other option was to increase my INR. INR is an abbreviation used in a blood test. The INR measures the level of anti coagulation. Let me put it in perspective. A normal person, not on any medicines has an INR of around 1.0. People who have had heart attacks will usually be placed on blood thinners (Coumadin) to get their INR to around 2.0 The doctors want my INR to 3.0 to 3.5. Do you know what that means? When I graze against a wall and scratch myself, I bleed. A normal person may just get that white skinned scratch. I bleed. A lot. I get bruises with a whisper. If I get into a fender bender. A minor one where all parties would expect to walk away, I may die of internal bleeding. Having to live with an INR over 3.0 is restricting, and dangerous. Oh what choices we have.

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Thank you for the support all of you are giving me everyday.

 

This period in my life was akward.  The doctors still say that I am dying. The doctors still say that there is nothing they can do to alter that outcome.

Yet – I kept breathing. Despite the doctors best efforts to declare me dead: I lived. My family was pensive. Me too. When the year 2007 came to an end, I was still alive. By the grace of God, I still  held a place on this earth.

I can never be certain, but I believe it was after I had had an opportunity to reflect on what I had written that the notion of writing a book took hold.  There was a theme emerging from the ashes of my memory – and the name for that theme was “Hope”. It would become the centerpoint of all future memoir writings.

The idea: there are people out there struggling to survive. People who have lost hope, or are on the verge of losing hope.  Maybe, if these people read what I went through – if I can survive all that I had gone through: all that I am going through, then maybe they can regain some hope for themselves.

 

Thank God for Denise

May 7, 2010 by brha99

Time is truly a curious phenomenon. Instances in your life when time seems to move so fast. I am sure you’ve said, or heard somebody say that they didn’t know where the time went…Time just flew by. Other circumstances dictate time to move at a snail’s pace. Sitting in a waiting room, hoping your name will be the next one called. It’s really quite individual. For me, I had no sense of time at all. Not of day. Not of night. I didn’t know when, or for that matter if people were visiting me, so the notion of them visiting for a long time was, …..inconsequential. I really thought that this period of hospice lasted 2 or 3 days. Two weeks had passed. Indeed, the drugs have done their job, all too well. I couldn’t visit with my wife. I couldn’t visit with my children, or grandchildren, or any friends that might happen by. Oh they were there. I just have no recollection of their visit. No, for all intent and purposes, I was already dead. The Xanax, the Oxycontin and the Morphine had put my brain to sleep. Well, Denise would have no more of this. She was fed up with this whole set up. Home hospice IS TOO HARD for the people left to care for the terminally ill. It is simply too hard. She gathered all the medicine. I mean everything. Then she got me into the truck and over to BAMC. (Brooke Army Medical Center) We were sitting in the office of my CHF Nurse. Denise poured all the pills on her desk and we had a frank discussion about hospice. Denise and I decided hospice was not for us. A basic tenant of hospice is to be alert and pain free. Well I was pain free, but the alert…not so much. At that visit, the cardiologist was brought in. We had him turn off the defibrillator. He and the CHF nurse agreed. If I am going to die, let me at least be coherent enough to enjoy my family during the last days. NO MORE PILLS! Well almost no more pills. The doctor talked me into keeping a couple of the heart meds. We didn’t know it then, but Denise had just saved my life.

Me a narcissist? Ask me again tomorrow

May 8, 2010 by brha99

The next several days were unremarkable. I was still stoned. I am pretty sure we are in October 2007. Apparently I had taken a lot of drugs. More even that I should have and it would take several days to regain a clear thought. Hey, but what the hell. I was dying! That gave me the right to behave pretty much any way I wanted to. Didn’t it? Well, DIDN”T IT? ….Wait a minute. When did I become such a narcissist? Me, me, me, me… It’s always about me. You know what I discovered? What I realized? What’s still true two years later? Right this very second even. I learned that you don’t die alone. I learned that perhaps the last gift you can give your family, the last gesture of love and kindness is that of an unselfish death. My wife Denise, our children, friends and other family have been riding this roller coaster right along with me. I am not the only one struggling. In fact, I am not doing much of anything except taking pills and lying around. Meanwhile, Denise is taking care of the house. Cooking, cleaning, paying the bills and taking care of me. On top of which, I’ve stressed everybody out. And not for just a moment. I’ve been stressing out the people I love and who love me for nearly 20 years. While at this point I am apparently still dying, I promised myself I will suck it up. When it’s painful I will meditate.  When I am tired I’ll rest. Staying out of emergency rooms and avoiding drugs will be my new mantra. Hey, I am feeling better already. I think I am going to like this clear head stuff.

Mantras aren’t promises…. are they??

May 9, 2010 by brha99

Three weeks have passed since I left the hospice program. It was then, that a grim reminder of why I was in the program announced itself. Lying in the emergency room, I remembered my mantra. “No emergency rooms, no hospitalizations”.  Mantras aren’t promises, right? I lie there thinking about that, and realizing how helpless I am to prevent these trips. “I was in end stage heart failure” the doctor proclaimed. He continued: “Looking at your medical history, there is really nothing we can do for you. You do know that you are dying”. For now, they admitted me into the hospital to pull some fluid off of me. This procedure is simple. They give me intra venous medicines, and I pee my brains out. Two days later, I was discharged. I was 20 pounds lighter. Over the next month or so, I would make several more trips like this. Each with the same result. When Christmas 2007 got here we were all surprised that I was still around to celebrate it. This Christmas was very special to me. I was alive to watch my family and friends enjoy the season. I was alive, at home for our traditional Christmas Eve celebration. I never expected to to be alive for Christmas.  I was very happy. Each day I could be with my wife, family and friends would be a cherished and sacred day for me. Though I was still dying, I loved life, and will honor each day I am blessed to see.

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Get the complete story. Check out my bestselling books.

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Road To Transplant – discount code: KQ9U9RFW        https://www.createspace.com/4002050

5 Short Stories and 12 Poems – discount code:  GNPWPEJ5   https://www.createspace.com/4057479

Thank you for the support all of you are giving me everyday.

This particular post is a bit longer than usual.  In the posts, I was tackling the subject of hospice. For continuity’s sake, I thought these  posts needed to be shown together. While I am all in favor of a little suspense from time to time, in this instance I felt that separating the last two posts would disconnect the reader from the story.

Four posts – two days. I sat at my desk, reminiscing the events in my mind as I remembered them. Then, once I thought I had the memory clear, I would fact check the story with Denise, or one of my children.

Even today, reading those events stir strong emotions. But that is looking backwards. Stan does not like to look back.

 

Awe, come on. Have a heart

May 5, 2010 by brha99 

Once again we did the drill. Wilford Hall Medical Center for the biopsies and cat scan, the waiting anxiously at home, the response. This time in world record speed. Only a week. As we sat in the pulmonary doctor’s office…again, my mind drifts quickly from one topic to another. Is it cancer? What will I do? What will Denise do? Will I need surgery? What about chemo? Will the chocolate bar I left in the car melt while I am in here? You know, lots of things. The doctor finally comes in. Once again the results are inconclusive. I am confused, and by the look in Denise’s eyes, she shares my confused state. “What does “”inconclusive”” mean”? Is it cancer. “NO”, says the doctor. I am sure it is not. We will set you up on a schedule of a cat scans twice a year to keep an eye out on it. After the calamities of the past couple of weeks, combined with the roller coaster of anxiety we went through, I slipped….that is to say I had a couple of puffs of a cigarette. Oh that will be ok, I said to myself. Dr Kwan need never to find out. A day or two later we went to see Dr Kwan on a routine visit. As usual, we stopped by the lab for blood tests. As fate would have it, one of the tests was for nicotine. The visit went off without a hitch. I even got my pager today. I was as happy as a person could be. Holding the pager and being listed for a new heart meant there is hope for renewed life. I was listed as category 2. A person can get a category 1A, 1B or 2. I wasn’t in urgent need of the heart, so I got listed as category 2. Denise and I were hopeful for the first time in years. Now, we can dare to think of life after sixty . Now we can believe in our future together. That wonderful feeling lasted about 6 hours. We got the call From Dr Kwan, “Brian, you smoked. I am inactivating your listing”.

‘and you’re out!

May 5, 2010 by brha99 

Ever get that sinking feeling in your gut? And then drink a cup of acid? And then get repeatedly punched in the stomach by a heavy weight boxer? And then eat some poisoned food? Well, I felt worse than that in the moments following the phone call from Dr Kwan. I thought to myself, it was over . I blew it. Mind you now, I am not off the transplant list,. I am just on hold until I can get my smoking under control. A small reprieve. A few days later I received a letter from the transplant hospital. It said I was too sick to get a heart transplant and that they were removing me from the list. What did they mean? How can you be too sick to get a heart transplant? I called Dr Kwan. Apparently, they get all the biopsy results, cat scans and every thing else that happens to me. They weren’t happy with the results of the biopsies. “Inconclusive” two times….No, they think that it is lung cancer, or at least pre-lung cancer. So, no transplant. I was devastated. Completely devastated. Did I ever tell you that part of getting a transplant was seeing a shrink? I had to visit with this guy regularly. Denise reminded me of this today as we were discussing the blog. After I was removed from the list, I visited the shrink one last time. He told me to go ahead and start smoking again. It didn’t matter. I was going to die anyway. So that was it. No more chances. No more life boats. I needed to begin the process of dying. There was no longer anything anybody could do. I was dying, and according to my doctors it would be sooner, rather than later. Denise called the children (adult children). I guess it’s time for them to know their father was dying.

Hospice, sweet hospice

May 6, 2010 by brha99 

The kids came over that evening. We all sat at the dining room table. That “deer caught in the headlight look” was in their faces. What does a person say at a time like this? “It’ll be ok”.?? No. Even now, over 2 years later I can’t figure out the right thing to say. We hugged. We cried. I hoped they had grown into the type of adults that would help their mother handle the coming weeks. A few days later I found myself in the emergency room..Again. The folks there had gotten to know me quite well. The doctor comes by and tells us there really is very little he can do to help. He would provide medicine to control the pain, and bring me into the hospital overnight to stabilize me. The next morning I woke in the hospital bed. I had accepted completely the idea of dying. I will no longer fight to stay alive. The doctors came in. Denise and I had discussed hospice. The American Cancer Society defines hospice like this:

Hospice is a philosophy of care. The hospice philosophy or viewpoint accepts death as the final stage of life. The goal of hospice is to enable patients to continue an alert, pain-free life and to manage other symptoms so that their last days may be spent with dignity and quality, surrounded by their loved ones. Hospice affirms life and does not hasten or postpone death. Hospice care treats the person rather than the disease; it focuses on quality rather than length of life. Hospice care is family-centered care — it involves the patient and the family in making decisions. Care is provided for the patient and family 24 hours a day, 7 days a week. Hospice care can be given in the patient’s home, a hospital, nursing home, or private hospice facility. Most hospice care in the United States is given in the home, with a family member or members serving as the main hands-on caregiver.

The doctors agreed. Home hospice would be the way to go.

Hospice…………..Hmmmm

May 6, 2010 by brha99 

September, 2007. I am 53 years old. I have been married for 33 years and have a 32-year-old son. He has a wife and three perfectly wonderful boys. I have a 31-year-old daughter who is married to a lovely girl. They too have three great boys. Is this the sum total of my life? At 53 years old, is my life really over? These thoughts I remember clearly filling my mind. I think about them as I watch my son and others dismantle my bed, and move it out of the bedroom. I think about those things as the movers bring in the hospital bed, and set up an inflatable bed for my wife to sleep on. Wheew! This is it. The hospice doctor and nurse team were in the house. They were explaining to my wife how the program works. With home hospice, there is no 24 hour care. Just your family. Your family feeds you, cleans you, medicate you and keeps you company, all the while watching their loved one die. Home hospice sounds better than it is. Home hospice is not fair to the family charged with providing the care. Oh sure, help is a phone call away. It isn’t fair to them. It isn’t fair to my family. It’s TOO hard. I got settled in to my new surroundings. The pills that the hospice doctor left would make an L.A. drug dealer jealous. Xanax, of course. Percocet and Oxycontin too. And for those crabby days, morphine, in both pill and dropper form. I was set. I was given some medication and drifted off to sleep. Yes. I am 53 years old, and it is, as they say…over.

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Get the complete story. Check out my bestselling books.

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