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Last Tuesday I went to go see Dr Kwan, my transplant doctor. As you know, my energy and strength are disappearing – and fast. We began in the usual way. Check in with the money lady, making sure all insurance is still in tact. Then a moment later I was called to the back. A quick step on the scale and off to the exam room. There, the nurse did the requisite blood pressure, temperature, ekg and a lengthy history of the past month, to include a verification of all of the drugs. Once all of that is done, the nurse leaves with my six inch thick chart. A few moments later, the nurse comes back. Dr. Kwan ordered the pace maker interrogated, as well as several blood tests. Luckily, I have this picc line with the extra port. No worries about needles this trip. Or so I thought.

The nurse prepared to draw blood. Getting the syringe and the vacuum bottles aligned, she connects the syringe to the port and connects the vacuum tube. Nothing. She tries again, and again: All with the same results – namely, nothing. She pushed stuff in and it worked well. I could taste the metallic bitterness of the medicine as it enters my blood stream. She pulls the plunger on the syringe. Nothing. Apparently, I am only getting one way flow. I need to have flow both ways: In, and Out. Soon after, Dr. Kwan came in the room.

We talked for a while. He asked the usual questions, and I told him about getting tired and weak quicker lately. I told him of the restrictions to my life I am now facing. After a brief and deliberate pause, he told me that the symptoms I am experiencing are side effects of the Milrinone (the stuff going into the picc line), and the Amiodorone, the stuff I have been avoiding for years. He talked some more and went over the numbers coming from my heart. He told us that, while my heart is very sick, the numbers are now stable, and the other organs are still doing fine. Then he discussed my options.

Dr Kwan said that treating advanced heart failure is a bit of a balancing act. Not enough drug, and my heart gets worse. Too much medicine and I get unfavorable symptoms. Nearly all of the symptoms I have are unfixable, except if I opt for the VAD – Ventricular Assist Device. I have declined this option before. It is called a “Heart-Mate II”. (check it out on-line) Dick Chaney used one before his transplant. It is a last resort measure to stay alive while waiting for a new heart. It is extreme surgery, very dangerous and I do not want it. Dr Kwan then asked which side effect is worse: dizzy from low blood pressure, or arrhythmia’s?  He could adjust one or the other. Not both. That was easy. I can accept the symptoms of low blood pressure happily if that meant avoiding arrhythmia’s. Having chosen my own poison (so to speak, he increased my Toprolol to 100 mg’s). If you will recall, I was at that dose a month ago, but the symptoms of low blood pressure were troubling, so he lowered the dose. I will suck it up and accept the symptoms. In addition, he ordered some medicine called “Cath-flow”. I do not know what it is, but it should help the “in and out” flow problem I am experiencing. The home health nurse will administer that next week.

Oh, that was the good news. Of course a visit with Dr Kwan would not be a visit with Dr Kwan unless there was some of the other. I have been on the Milrinone for more than seven months. That is the medicine being pumped in me 24/7 through the picc line. The cautionary tale that came with the medicine was this: (paraphrasing) – This medicine should not be used more than a year. Longer use may be harmful to other organs. In other words, the longer I use this stuff, the worse it will become for my liver, kidneys and other parts. On that time line, I have only four and a half months to find a heart and get off of the Milrinone.

Now for the not-so-good part. There is an increase in the number of people needing hearts this year, while the number of donors is decreasing. What does that mean? Dr Kwan would not speculate, except to say that the average wait time is six months. Could be longer – could be less. There really is no way to know or predict. He added, that the number of transplants nation-wide is less this year. There are just not enough donors. I do not know what the solution is for that problem. I was listed the week of Valentines day. That puts me at just over four months, but just under eight months on the Milrinone clock.

Last evening I took my blood pressure. 82/52. I knew there was a reason for the way that I felt. Then I stopped for a moment and smiled. I like this symptom much more than the threat of being shocked. Oh yea. No complaints here. Just smiles.

Every week, please join me in saying a prayer for the donors and their families. If you do not believe in prayer, perhaps you could send good thoughts and vibes their way. 

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

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

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

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

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Waiting for a new heart took on a whole new meaning this week. We recently got word that one of the members of the heart transplant support group had passed. He was post transplant. I do not have the details, except to say that the people running the group were surprised to here that news. It is a stern reminder that heart transplants are no walk in the park. Sure people hear about them all of the time. And certainly they are safer than ever, even being characterized by some as “Routine.” Let me reiterate for you this: Survival rates the first year after transplant is 89 %. That is average, nation wide. That means that for every 100 people that get a new heart, 11 people will die. Heart transplants are anything BUT routine.

For me, the choice was simple. Either I get a new heart, or die. All other options were off of the table. SO, despite the odds (which are only a little scary) I chose transplant. I surrounded myself with a great medical team, and put my life in their capable hands. Still, after all of these years fighting heart disease and being sick, when a fellow patient dies from doing something you will be doing, it gives you reason to pause. May he and his family find the peace they so richly deserve.

As for me, my week has been mostly uneventful. After last week’s increase in Lasix, my weight began dropping. I was stable at 218 for several days. Then, two days ago my weight began to rise again. At first, just 1.2 pounds. No big deal, right. Well, maybe. But today I was an additional 2 pounds up. Combine that with loss of appetite, nausea and general weakness and now I have a problem. And I came so close to getting through the week with no drama. Oh well. Add to all of this the ongoing problem of getting weaker and weaker along with an increase in my shaking and well…I do not know. Last evening Denise and I went to dinner at one of our favorite Chinese restaurants. I like the won ton soup. When I got the soup, I could not eat it. When I held the spoon, my hand would shake so violently, I could not get the spoon to my mouth. I was not able to use the spoon to cut the won ton. With help, I just picked up the cup with both hands, brought it to my face and drank.

As far as the weakness goes, I can no longer do the simplest tasks. I always wanted to help by doing the dishes. Stand in front of the sink and do the dishes. That sounds easy. I cannot stand in one place for that long. My legs begin to shake and they are tired. I can take a shower by sitting on the stool, but I am too tired to get out, dry myself and shave. Denise helps me from the shower to the bed, where I hook up with my oxygen and rest before dressing. I HATE THIS! I am getting weaker and weaker, and I am helpless to do anything about it.

My home health nurse came this morning. As usual, we talk about how I am doing. I shared with her my frustrations and problems. While she was sympathetic, she knows that this is the road I must travel. At least for a while longer. She said that it seemed like I may end up waiting for a new heart in the hospital. She will report to Dr Kwan, and I have a regular appointment with him on June 19th. I fear that the next few weeks will redefine the nature of my existence.  Both Denise and I are afraid. We keep a positive attitude and we do as much a normal schedule as we can. We will keep hope close and we will keep the faith in both the doctors and God. Oh we will be scared, but I like to keep things in perspective.  I’m still here!

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

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

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

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

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

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Living on the heart transplant list is becoming more challenging every day. This past week showed me that my life rides on the balance of the smallest mistakes or problems. As you know, I had been dealing with blood pressure problems. Just a week ago, the doctors made yet another adjustment to my medicines. And, finally, by last Friday my blood pressure returned to normal. 100/60. All was well with the world, and I was actually beginning to feel better.

When Friday night arrived, Denise performed the maintenance on the picc line and changed out the bag of Milrinone. Not a problem. We had done this every other day for nearly seven months. The process went smoothly. The pouch was closed and we went on with the business of living.

Saturday was fine. I had gained a pound and a half over night, but I thought nothing of it. When dusk came, I went out back to water the herbs and the roses. We have a beautiful rose garden and herb garden. The process requires the watering person to move less than 50 steps for the entire procedure. You walk five or so steps, point the hose and water. Then, you move another five feet to the next spot and water again. You get the picture. It is simple and there is virtually no physical activity required, with the exception of walking, and pulling a garden hose around a bit.

I had spent about thirty minutes watering, and when I was done, I noticed the strangest thing. My legs would not carry me back to the house. I was completely unable to move my legs and had no strength to do any thing about it. I called for Denise. She came out and helped me back in the house. I was out of breath, and weak. My voice was disappearing too – a sure sign I was in heart failure. I rested on the couch, hooked up to my oxygen  and in a couple of hours, regained some of my strength. As soon as I could move, Denise brought me to the bedroom, and I fell quickly to sleep.

Sunday morning arrived and I was feeling tired. I was weak and had zero stamina. My weight was up two pounds.  Later that morning,  Denise and I received an invitation to my daughter’s house for dinner and watch the first game of the NBA Western Conference Finals, in which the San Antonio Spurs are playing. That sounded great to us. The only issue that we needed to deal with was packing the IV medicines, along with all of the accompanying stuff.  Batteries, alcohol swabs, latex gloves,  sleeve covers, IV flushes, Milrinone and heparin. You see, that day was the day to change out the bag. When we change out the bag of Milrinone, an assortment of maintenance procedures are also required.

We arrived at my daughters home, had dinner with her lovely family and hung around talking for a while. Then the pre-game show began. Well, that was my signal to change the bag. We wanted to do it then, so we would not have to interrupt watching the game. Denise grabbed the bag with all of the stuff and began spreading it out on the table. I too had my chores to do in preparation for the procedure. Once everything was set, Denise grabbed my bag and unzipped it.

That is when we new that I was in trouble.  Immediately, we noticed that there was an error message on the pump. All that told me was the pump was not in the off position. When we went a step further, Denise pulled the flap that held the bag of medicine, and to our surprise, the bag was still full. We took a double-take on the situation. Pump was on, but there was an error message on the screen, and I had not received any Milrinone since Friday.Just to refresh your memory, the Milrinone is an “inotropic” drug. That means that it helps my heart pump blood. I need that because without it, my cardiac output number is 2.5 liters. That means I pump 2.5 liters of blood from my heart every minute. That sounds like a good number, but it is less than half of what a person needs. Based on the evidence: IV medicine still in the bag, increased weight, reduced activity level and generally feeling weak and tired, I feel confident in believing that my cardiac output level is back to poor.

First things first, I called the infusion pharmacy. I told them my problem. A nurse walked me through some steps to get the pump working again. It worked, but because it is no longer reliable, it will need to be changed out. Next, I call Dr Kwan’s office. Of course that time of night and on a three day week end, I got the answering service. I explained my problem and they patched me through to the on call nurse. I knew this person and felt confident in what she will tell me. She agreed that I was in serious heart failure. The course of action was a choice. One option: Go to the hospital. I am not in favor of that option. The next is to change the dose of Lasix in the morning with a goal of drawing more fluids off.  If I cannot get the fluid to start coming off by the next afternoon, I should call her again. Also, if all is ok, I need to see the doctor on Tuesday morning. That is the option I chose.

The next morning I was up an additional two pounds. That is five pounds plus in just a few days. I took the meds as directed and the flood gates broke open. I was darting back and forth to the bathroom like I was in a relay race. The weight and the fluid had begun to come off. By Monday afternoon, I began feeling better. On Tuesday morning I continued to lose weight, but was still up a couple of pounds. We went to the doctors. Dr. CK was there. We went through the usual routine to check in and finally the doctor comes in. We discussed what had happened over the past several days. He said that we dodged a bullet again. Not having the Milrinone;  stopping that medicine abruptly was very dangerous. He discussed my weight. He told us that at my weight, heart donors are less common. I am completely sedentary now. How can I lose weight without moving around. While he did not have a good answer to that, he did say I should do what I could to drop as much weight as possible. He told me that he and Dr Kwan had ruled out getting a donation from a female. They did not feel that a female heart would be able to adequately support me.

Before we left the doctor, Denise asked him if I would need to be hospitalized while waiting for a heart. He said not yet, but that he is seeing me every few weeks, and as soon as I show certain signs (do not know specifically what), he will hospitalize me. There is some advantage to going to the hospital, namely you are bumped up to a category 1A, the highest priority for a transplant. This, however is reserved for the sickest of the sick. Those who are in imminent danger of dying. I will be thankful that I am not quite there yet, although this past week-end, I came pretty close.

A few days ago, a family friend, a woman in her early fifties had a heart attack. They did some stuff, and, well the short story is that she bled out in her brain because of some of the medicines that were used in the course of treating the heart attack. Now, I do not all of the details, but we were told that the family would probably pull the plug this evening.

When will my turn come up? Or your turn? Who knows? Be nice to each other, enjoy the sunshine, your children, grand children and friends.  Do not miss the opportunity to enjoy your life. Do it now, because I do know this much:  tomorrow is promised to know body.

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

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

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

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

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

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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.

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What would I give to be able to ride a roller coaster again? How much would I endure to be able to wrestle with my grandsons before they get too big and don’t want to play with their grandpa any more? How much pain am I prepared to tolerate to have a chance to live again? Well, we are getting ahead of ourselves. Let me begin earlier in the week.

Remember me telling you about my low blood pressure? Apparently having such low blood pressure with symptoms like I had a couple of weeks ago, AND waiting a week before telling someone was the wrong thing to do. I was chastised today, a little bit for waiting so long to tell someone that I was walking around dizzy and tired all of the time. The rule of thumb from this point on is; if it is causing me symptoms, let some one no, regardless of what it is or what the symptoms are! I had a fart that only caused my left cheek to vibrate! Help me. I do not know what to do. I have chest pain every day. Sometimes light…mostly light but occasionally not.  I have various aches, pains and “stuff” happening all the fricken time. Last week I had a pain in my left chest, down by the 6th rib. I figured it was probably a muscle pull. In all of these instances I did not call anyone. They say if I do not call that I am not participating in my health care. Granted, the light-headedness and weak feeling that accompanied my low blood pressure should have been reported before the week which actually passed, but I figured that I would adjust to the new medicine. OK. Lesson learned. Oh doctor!! Would you come here and fix my ass. I think it’s cracked!

My rant for the day is behind me. Now we can talk about other stuff. The doctors were able to get my blood pressure under control. The simple solution was to eliminate the 50 mg of Topolol XL that was added to the existing 100 mg of Topolol XL a couple of weeks ago. Also, It appears that the Amiodarone is doing what the doctors wanted – namely relax my heart to allow the pace maker to pace. My pvc’s seem to be mostly in check now. I drew that conclusion by the fact that my bi-ventricular pace maker is actually keeping my pulse up over 80 beats per minute. In fact, my pulse is at or above the pacing setting nearly all of the time. I wonder though: based on the previous paragraph, should I let the doctor know that from time to time my resting pulse is around 100? That doesn’t seem like a big deal, but they want my heart to work less while pumping more. I do not know if 100 beats per minute at rest is the right thing. I guess I will CALL THE DOCTOR tomorrow and ask him. See…I can learn!

On a more serious note: I had the most amazing discussion the other day. The transplant nurse runs a face book site that is kind of an extension of the transplant support group. I had joined the group a few weeks ago, but mostly stayed quiet. The truth is, there is not much action going on in this area…that is until a few days ago. One of the heart transplant patients: a woman who is more than one year post-transplant made a note about going on a roller coaster and how much fun it was and that she loved the feeling life gave her now. Uncharacteristically, I chimed in and introduced myself. I told her I was listed and longing for the day I can begin living again. About that time a gentleman who is probably about my age based on his picture chimed in. He is two and a half years post transplant and is loving every minute of his life, and even talks to his new heart as if the donor could here him. I was quite moved and talked with him as well.

Turns out both had second thoughts about the heart transplant; like the thoughts that occasionally run through my mind and despite the trials and hardship associated with transplant surgery and the year that follows, neither of these people held any regret about going through the process. Facing the mortality odds, the pain of surgery, the hassles of a low immune system, the diabetes from steroids, the increase hand shaking, the weekly heart biopsies and the myriad of  obstacles all recipients endure, both agreed that having a second chance at life is worth any price that must be paid.

What would I give to be able to ride a roller coaster again? How much would I endure to be able to wrestle with my grandsons before they get too big and don’t want to play with their grandpa any more? How much pain am I prepared to tolerate to have a chance to live again? Back at the beginning of this blog I posed those questions.  They were  questions I never really asked myself before. I had gone through a lot of mental gymnastics trying to figure stuff out, but never actually asked myself what would I give for another chance at life.. The answer is the question. What wouldn’t I give for another chance at life?

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 188 blog entries. I invite you in and check it out.

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

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Ever notice anything unusual on your body while washing yourself? Well, a couple of weeks ago I noticed a hard knot, or lump if you will on the back of my neck. It is located to the left of center about half way up my neck. The lump is about the size of a walnut. I didn’t think anything of it at first.  Actually I forgot about it.

Then about a week ago I noticed that I had this head ache. It was persistent and would never seem to go away. It was there when I woke, through the day and when I went to sleep. If I awoke in the middle of the night…yep. The head ache was still there. The last piece of the puzzle presented itself about a week ago. A low pitch humming sound. Some may categorize it as a ringing in the ears. Tinitis. I am not so sure though. It is more of a low pitch hum which, like the head ache is always there.

Yesterday afternoon Denise and I were at lunch. Lots of small talk.  Mostly about the impending holidays. I apparently looked tired and Denise asked me if every thing is ok. I mentioned the head aches. They are really bothersome. She said, “is that it”? I replied “no. I have this humming in my ears too. It is driving me a bit nuts. Like the head ache it never seems to go away”. Again Denise asks if there is anything else. “YES!”, I exclaim. I tell her about the lump on the back of my neck. She gets up from her chair and feels the lump. Then, in a moment of clarity, Denise asks when all these things started. Turns out, everything began shortly after the lump appeared.

So today Denise and I visited with my primary care doctor. I shared the story to her. She touched the lump, walked out of the office and returned again. She said it was one of two things. Either a harmless fatty tumor or a not so harmless sarcoma. 50/50. She could not guess because there was not enough evidence to suggest either. You see, if it is just a harmless fatty tumor, it is usually soft and mushy. It may also easily move. Sarcoma, on the other hand are hard, immovable masses. This lump is hard, and cant really move. It does, the doctor said have a little softness.  She couldn’t call it one way or the other. The size is roughly 2 centimeters. Just shy of one inch.

Before I left the doctor’s office I had an appointment for a cat scan. A cervical-spinal Ct. It is tomorrow. Also for good measure, she is lining up a biopsy with a surgical group. You guessed it. Tomorrow! I said wait…Can they do a biopsy on a guy with an INR as high as mine? You may recall my INR is more than three times a normal INR. That means I bleed. A lot. Bleeding is hard to stop. She checked. It is ok.

So let’s take stock on what is going on right now. I have a suspicious V/Q lung scan which might prevent the heart transplant. I have a right heart catheterization scheduled for Monday. I have some new lump which requires analysis tomorrow. Biopsy time is not yet set. My Ct is in the afternoon. And lets not forget I am being worked up for a heart transplant because of heart failure. AND adding to the fun, I am presently on the edge of another CHF exacerbation. I am up 5 pounds in the last three days. I think before we go any further, is there any more crap that we could put on this plate…………………………………Hum?…………………………………….. Anything else we can add to my medical chart?…………………………………No. Alright then.

I have a mantra that I say to myself when I begin to feel overwhelmed with stuff. I will share it with you. Now, repeat after me:

I will always keep a positive attitude.  I will always keep smiling. I will do my best not to kick the neighbor dog, (just kidding) and I will tone down my road rage.  I will hang on tight to my loved ones and let’s see what tomorrow brings.

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As we enter the office of Dr Kwan, the heart transplant guy, I cannot stop my mind from wandering to the last time I was there. It was not a pleasant visit. His office had called and asked me to return that all-important pager. The one that would signal the beginning. The one that would alert me for my heart transplant. I am refused that privilege. I must give back the pager and go home to die. No, that visit was not a pleasant one. I wondered if this visit would  begin where the other had left off. I was nervous. I was pensive. Hell, let’s face it. I was scared.

We approached the clinic. I noticed the new sign. The door to the clinic read “Advanced Heart Failure and Transplant Clinic”. We walked through the door and immediately knew this was no ordinary doctors office. Everyone there  looked sick. Oh, they were.  Nobody goes there unless the option for death is on the table.  Denise signed me in and we sat down. In just a few moments I heard my name called.  Denise and I walk toward the exam rooms. Just as we got to the corner,  Dr Kwan rounded the corner. He knew me immediately. He even said in a surprising tome that I looked good. I shook his hand, said hello and began the check -in process. First up; ekg and blood draws. Then, a detailed history of everything that happened to me since leaving their care four years earlier. The nurse was thorough. She was kind and  soft-spoken. You know, the way you talk to people who are dying. Next stop; the first cardiologist. This guy is a cardiologist who has a practice elsewhere. Many cardiologists rotate through Dr Kwan’s clinic for the experience of managing some really sick people.

The door to the exam room opens. Surprise! It is someone Denise and I know. One of the Air Force cardiologists walked in. It was his turn to rotate through Dr Kwan’s office. He had seen us earlier in the year in the emergency room. We had brushes with him over the last couple of years on the ward. I felt more at ease. We began talking. His interview with us extracted all of the pertinent data Dr Kwan would need. We talked about a wide array of things. So far, the appointment has lasted more than one hour. Not wait time. Doing stuff time. And, it wasn’t over yet.  After his initial exam and interview he left the room. A moment later Dr Kwan came in. He wants an Echo cardiogram and a bubble test. That morning. As quickly as he came in, he was gone.

Another very professional nurse came in, introduced herself and lead me to another room for the tests. Almost immediately, the nurse doing the test commented that I must be on the cusp of getting a transplant. “Why do you say that”, I asked. While she caught herself – almost talking when she shouldn’t have, her demeanor was unmistakable. She saw a heart with “Severe Global Hypokenisis”. Severe Hypokenesis of the septum. Significant dilation of the left ventricle.  significant enlarging of my heart. Significantly diminished ejection fraction. She wouldn’t give me the number. Not her place to say, she says. That’s ok. I saw the number on the screen.  17%. To complete  today’s tests, the other nurse came back in and told me she needed to put in a catheter. Ok. It was a simple test where they push bubbles into my heart and see where they go. It checks for septal defects. Not to worry. My septum is intact.

Two hours after the exam began, Dr Kwan, and the Air Force doctor come back into the exam room. They look at the echo. Then, Dr Kwan begins. You look good Brian. I know though that you are not. We have enough objective information to tell us you are very sick. Objective means hard data. I asked about a heart transplant. He shook his head. Transplants are very dangerous. Only an 87% survival rate after one year. It goes down from there. Plus he said the medicines I would be on will push me into diabetes. I have the shakes. Did I ever tell you that? My hand, arms and sometimes other parts shake. He said that the medicines will make them worse. I will probably get osteoporosis, and a myriad of other problems ensue. “Are there other options”, I ask? He talked to me about a VAD. Ventricular Assist Device. It requires that my chest get opened, a hose is sewn to two parts of my heart. A control tube comes out of my abdomen and attaches to a computer, and I have to be plugged  in or on battery packs. Sound good, so far?  Go on the computer and search for “Heart Mate II”. The surgery comes with high risk. Testimonials suggest the users get used to it.  We’ll discuss this more later. So for now, Dr Kwan wants me to get some kind of lung scan (VQ scan) and a right heart cath. After that, he said that he will make his recommendations. He wants to get all of the information in front of him before he makes his recommendations. Well, even I could not find fault in that logic. nearly three hours after my appointment began, it was finally over.

We begin the journey on unsure footing. The outcome too blurry to predict. The first meeting was promising though. Every journey must begin with one step. We took that step today, and am more terrified now of my prospects than ever. Head up, chin out. Take a breath and take another step… I’ll keep you posted.

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