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Archive for March, 2012

It  is Wednesday morning and the dust stirred up from this week’s chaos is finally beginning to settle. Last week, when I saw Dr Kwan, I was very tired. I was having lots of PVC’s. So many in fact their presence was hindering the ability of my bi-ventricular pacemaker from providing the squeeze I so desperately need.  For the life of me (that is a saying, isn’t it?)  I couldn’t get blood to pump. That really brings new meaning to that phrase.  I am weak and tired. Often times my skin will turn grey. That is when Denise knows I am really sick.  The doctors ordered the right heart cath in hopes of bringing my Milrinone dose up a notch or two. As I already have a problem with PVC’s they also expected to have to add the all feared “Amiodarone” to the mix of medicines. It’s purpose is to calm down my heart so the other medicines can work. We’ll see.

Monday morning I checked in to the hospital – as planned for the right heart catheterization,  the purpose of which was to determine if the Milrinone  dose could be increased, and if it could then to figure out how to control the tsunami of PVC’s that were certain to follow. I do not know if there are other routes of entry, but my doctor prefers to go through the large blood vessels in my neck. As I lay in the bed, located one floor above the cath lab, I wonder about the outcome. Patiently Denise and I wait our turn for the procedure. We checked in at 7 a.m. It is now 10 a.m.  and we are still waiting for our turn.  We wait, holding hands and discussing the plethora of possible outcomes a scenario like this has to offer. Finally around 10:30 a.m.. the nurse comes to take me away.

Once in the cath lab I immediately notice the temperature. It is very cold there. With lots of computers and other high-tech gadgets, apparently it has to be kept cold. They move me over to a very thin, long, hard table for the examination.  While one nurse begins prepping the entry site, another is connecting the sticky things all over my chest and back and then connecting the wires to the sticky things. You see, I am not always using medical terminology, that is unless you consider “sticky things” as medical terminology. Once all of the preparatory work is completed, the doctor walks in. Touching my shoulder as a gesture of friendship and comfort, he begins to summarize the course of action he has planned. I nod in the affirmative. The sterile drapes get placed, so that there is only a slight crack where my eyes can see through. My head is turned hard to the left, exposing the right corridor of my neck. Then the doctor speaks those words which I dislike the most. “OK Brian, now you will feel a little pinch and some pressure”. I close my eyes and calm myself – and the sting begins. One spot, then two, followed by the feeling of someone leaning on my neck. They are in. I can feel a warm stream of blood sliding down the side of my neck to the back of my head. It is wet and warm.

The rest of the procedure is pain-free and not uncomfortable. I lay there, listening intently and trying to pick up info as the team talks to each other.  They use abbreviations. I am not sure if they do that for simplicity or to disguise what is going on; hiding their conversation in plain site of the patient.  Did not matter to me because I am skilled in their language. I taught medical terminology at the School of Aerospace Medicine while in the Air Force. If they are trying to be cryptic, it was not working. I understood perfectly as they said “RV”, “CO”, and other such abbreviations. The results: a mixed bag of both good news and bad news.

The good news first. The dose of Milrinone I am on is good. In does not need to be increased. My cardiac output (CO) is where they want it to be. Five liters per minute. Up from the initial reading of three liters per minute. The right ventricle (RV) is dong its job just fine.  There. The good was…good. Now for the bad news. Despite the good blood flow, I am still having too many PVC’s. Not all the time, but often enough so that when they do crop up, it disrupt my heart and make me very sick. The PVC’s must be controlled. The increase in the Topolol which began last week was unsuccessful at repressing the premature beats. The only weapon remaining in the doctors bag of tricks is…Amiodarone.

The hospital provided me with a some pages taken from Clinicalpharmacology.com which gave me detailed information about Amiodarone. As it is five pages long, I will only give you excerpts of the important stuff, that is to say “important stuff” as deemed important by me. Lets begin with side effects, as listed by this report.  Ready?  allergic reactions, blue-grey coloring of the skin, blurred vision, seeing blue-green halos, increased sensitivity of the eyes to light, breathing problems, chest pain, dark urine, fast irregular heart beats, feeling faint or light-headed, intolerance of heat or cold, nausea or vomiting, pain or swelling of the scrotum, pain – tingling and numbness of the feet and/or hands, redness – blistering and/or peeling of the skin including the inside of the mouth, spitting up blood, stomach pains, sweating, unusual or uncontrolled movements of the body, unusually weak or tired, weight gain or loss,yellowing of eyes or skin. Sounds like fun, right. On top of which there are drug interactions. Some of the drugs I take are affected by the Amiodarone. One in particular, Digoxin. The pharmacist spent some time explaining to us how the Amiodarone will nearly double the effects of the Digixin, so be very careful and monitor your blood pressure regularly. The untold story with all of this is the effects the drug has on organs. I am now taking 200 mg of Amiodarone  two times per day. If I wasn’t already on the transplant list, as before I would have turned down using this medicine. But, at this point I must do all that I can to keep me as healthy as possible, so if taking this stuff will help ensure a steady flow of blood to my organs to keep them healthy, I will bite the bullet for the team.

To be honest, Amiodarone is the drug of choice when no other drug will work for arrhythmias. It works beautifully to control them, and not all of the side effects happen. I like to rant, and this drug gives me some reason to. In the end, thank you makers of Amiodarone for helping to save my life.

On the lighter side, my doctor was not too concerned because he felt like a transplant is close at hand. Unlike Dick Chaney’s 20 months wait, I am in a different region, I am younger, and a different body type. There is no way to predict when a heart will come to me, but historically, our hopes are set at under six months wait time. Denise and I conclude this week pensive, but hopeful. As the days march on, surely the day of our transplant phone call comes closer. We wait patiently, continuing to keep the donors of this world and their families in our thoughts, and in our prayers.

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

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

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

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As you know, the past few weeks have been a bit stressful. Since the last bit of excitement, (having a new picc line placed) I have felt the stress. And it shows up in ways that  makes Denise nervous. Twice this past week my color changed to grey, my demeanor flat and my energy dipped to zero.  When I mean zero, I sat on the couch, slumped over, my mouth a gap, struggling to breathe and unable to answer Denise’s question – ” do you want to go to the emergency room?” I fear my heart is continuing to deteriorate, and no manner of machine, nor medicine is capable of stopping the march.

I was at Dr Kwan’s office on Tuesday. He concurs. The ectopy is increasing. According to the “Free Dictionary by Farlex, Ectopy is defined:

a condition in which an organ or substance is not in its natural or proper place, such as an ectopic pregnancy that develops outside the uterus or an ectopic heartbeat.

No. I am not pregnant. Thanks for thinking that. No… many of my heart beats are occuring  in other than their proper place. Premature ventricular Contractions (PVC’s).  And they happen a lot. Nearly 20 % of all of my heart beats are PVC’s. They are not allowing my heart to pump blood.

Dr Kwan has a plan. I am to report to the cath lab next Monday morning at 7 a.m. He needs to do another right sided heart cath. You remember. That was the procedure they did just last November. The one where they kept all of those lines coming out of my neck.  Dr Kwan wants to adjust the Milrinone dose. That is the inotropic drug used to help my heart pump blood. Remember, that drug heals nothing. It fixes nothing. It merely causes my heart to pump enough blood for me to live. It is a bridge to transplant. But…yes there is always a “but”. BUT, there is one small issue they need to deal with.  Increased dose of Milrinone may very likely cause more ectopy. That won’t do. No, that won’t do at all. If he is going to increase the dose, there must be a plan to control the PVC’s. 

There is. Right now, my dose of Topolol is increased from 100 mg day to 150 mg day. This might help. We will see when he begins testing the higher dose. If that will not control the PVC’s I will need to be started on “Amiodarone”.    http://en.wikipedia.org/wiki/Amiodarone

If you will recall in previous discussions and in my book, I have been avoiding this drug for many years. Oh, it does its job beautifully. It also comes with a ton of side effects. I left the link to provide you with details. I will skim over it for you now.  It causes lung disease, liver disease, eye disease, skin disease and more. There are good reasons I have avoided getting this medicine. It is a matter of  weighing risk and reward. Until now the risk has been too high. Dr Kwan does not think so anymore. For me to live to get my transplant, the doctors must increase the dose of Milrinone and if I am to survive that, there must be a plan in place that will control the arrhythmia.

Sounds overwhelming to me. It is. And frankly, just between you and I, I am a bit scared. Oh, I am not afraid to get tubes stuck down my neck. nor am I afraid to have them hanging out of my neck for a couple of days, nor am I afraid of the Amiodarone, although I have every right to be. No…No….I am afraid to get shocked.  My heart s very sensitive to change, and I have a “killer” (literally) 256 beat per minute ventricular tachacardia just lying in wait for the next opportunity to awaken. I have been shocked many times over the years, and I can tell you with conviction that I do not like it one little bit. No – 32 joules of electricity applied instantly to your chest hurts, and odds are I will be shocked as they play with the dose. Maybe.

As for the rest,  Dr Kwan says I am “wet”, meaning there is fluid building in my lungs and abdomen. He ordered my dose of Lasix doubled. I am also having trouble right now controlling my blood sugars. I guess I over-stepped when I ate that ice cream sundae. Maybe. I will do better. So wish me luck… I do not know if I will be out of the hospital in time to write next Thursday’s entry. I will publish that when I get home and fill you in on what happened.

One last thought. Never mind. Don’t forget to say a little prayer for the donors of this world and their families.

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

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

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

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Living with end-stage heart failure is never dull. As you may remember, my picc line was pulled last week. Some sort of infection or inflammation. But I needed my Milrinone. That is the stuff that keeps my heart pumping enough blood. That is my bridge that will keep me alive until I can get a heart transplant.  So, the doctors ordered regular I.V.’s. You know the type. If you have ever been in the hospital, or visited someone in the hospital, they may have had one on their arm or hand. I thought that once the temporary peripheral IV’s began, all would continue as planned. No drama. I was wrong. The drama of maintaining a patent intravenous line continues. The problem was finally resolved just this past Tuesday. Gather close and I will share with you this wild ride I have been on for the past week.

Actually, the plan was working perfectly. My first I.V. change came last Wednesday. The home health nurse came by, and without incident, the new IV was inserted. Once established, the old IV was removed. No muss. No fuss. I continued to do well through the week. Finally it as time for the IV to once again be changed. Saturday was warm and sunny. Almost no humidity. A perfect day for Denise and I to sit out in the garden. She, piddling with newly planted herbs, and me, reading. The nurse arrived about 4 p.m. We sat down in the usual spot. The corner of a long dining room table. Using the corner afforded the nurse the perfect angle to access the site. Once again, the new site was established. She was not able to thread the catheter in completely, but assured me it was securely in place. The Milrinone was transferred, and the old IV was pulled. Done! I was not really concerned at this point. I had received a call from the transplant hospital earlier that day. My labs were negative. The new picc line would be inserted on Monday.

When I woke Sunday morning, everything seemed fine. What I didn’t realize at that time was that the Milrinone was not going into the blood vessel. Instead, it was infiltrating the tissues of my forearm and hand. Do you see the problems? For one, the Milrinone is not getting to my heart, and two, my lower right extremity was swelling up and becoming quite painful. I called the transplant nurse. After explaining my problem, she insisted that I check in to the emergency room. I don’t argue with that type of advise. Denise packed me up and we went. Now here starts the fun!

The emergency room at the hospital I normally go to is great. I have such respect and confidence in all of the staff. The thing is…this night they were busy. I checked in with the triage nurse. I told her my problem. She took the information calmly, took my vitals and asked me to have a seat. 10 minutes passed…20 minutes passed…30 minutes passed…40 minutes passed. I am thinking that while I am waiting on my turn, my heart is still not receiving any Milrinone.  My arm continues to grow.  50 minutes pass…60 minutes pass. Now normally Denise keeps me calm, but even she began to worry. I went to the front desk this time. “Excuse me”, I begin. “Perhaps you guys misunderstood the nature of my problem. I am on a heart transplant list. This bag I am carrying around helps keep me alive. It stopped going to my heart and is filling up my arm instead. If you don’t want me to drop dead in your waiting room, you should probably get me to see a doctor now.” At first they just looked blankly at each other. A moment later one of them snapped awake,and asked me to follow him. Now I am at the place where help is at hand. Here is where the fun really starts.

The nurse assigned to me was there to greet me. Upon telling her my story, she had a new IV started in moments. The doctor then came in and I explained what was going on. His eyes opened wide like a child discovering their toys under the tree at Christmas.  He ordered an EKG and listened to my heart. Naturally, being away from the medicine has got my heart jumping. He continued to ask medical history questions. I answered them in a manner a visiting professor would respond to a students questions. I used big medical words and specific references to anatomical features that regular folks are not supposed to be able to do. He called in his boss. The attending internal medicine doctor.  Again a thousand questions and answers. Over the next hour, several more doctors and nurses came to see the guy with the really screwed up heart. I actually think I sold some books that night! I couldn’t resist. Another hour passed and everything was as it should be. It was a good night. The doctors and nurses at the Brooke Army Medical Center are, as always great.  FYI: they changed the hospital name last year. SAMMC  San Antonio Military Medical Center. Yea, I think that is what they call it now.  They are great.

I needed to wait until Tuesday to get the picc line installed.  7 am check in at the transplant hospital.  They treat it like a surgery. I was brought in to a prep area where I put on a gown. The nurse came by and told us how the whole thing would go down. A few minutes later they wheeled me to the back. I moved over to a flat-bed. There were television screens everywhere, and a florescope hovering above me. A florescope gives live x-ray images on the television. They will use it to check on the final placement of the picc line.They cleaned my arm, draped in sterile cloth and gathered all of their supplies. The process took about a half an hour. Then, the doctor enters the room. He told me that I will feel a little pinch. WOW! It was a big stick that lasted about 20 seconds. And just as I was preparing for my “ouch”…it was over. That was a lot of prep work for a 30 second procedure.  They finished bandaging it and sent me on my way.

They used a “double lumen 5 French picc line”. It is an I.R. Picc that was threaded toward my heart and is 40 cm long. This is a link to the company that provided the picc line. Perhaps you would like to see what they look like. http://www.bardaccess.com/index.php

Finally, we are back on track. Business as usual. Well almost usual. The double lumen added one maintenance task for Denise. She must now do a saline flush followed by a heparin flush every day. She figured it out. Denise is a trooper.

Lastly, I would like to report some good news. The friend of mine that was so gravely ill is now reported to be on the recovery.  That once again goes to show that there truly are no expiration dates tattooed on our asses. Keep hope close and you will always have the opportunity to live.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This memoir is the story of a man struggling with heart failure, and the trials he and his family endured for many years. It is the story which proves that know matter what -you do not give up. There IS hope.

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The tension im my home is raised from a calm buzz, to an earth shattering screech. Both Denise and I are on edge. Wondering if the next phone call we get will be “the one”. While I do not always say so, I see Denise looking at the telephone, as if waiting for it to ring. When it does ring, we both jump a bit, as if someone creepily walked  up behind us and yelled “BOO!”. There have been two occasions when the phone rang and we both noticed that the hospital’s name appeared on the TV (We have caller ID that shows up on the TV), and almost as if qued by the conductor in an orchestra, we both turn and look at each other with terror and anticipation in our eyes and I can tell by the look in her eyes that the knot that I am feeling in my stomach is similar the knot that Denise is feeling. . Time ceases for those few seconds, as our brains re-boot back to reality. Then I answer the telephone.  I sigh with disappointment and the comfort that knowing brings. They just need to pass along some lab work. Yippee.

On another occasion,   Me, Denise, my son and the grandsons went out for lunch. When we came home, I asked Denise where the cell phone was. She couldn’t find it. To add to the drama, when I looked at the regular phone, the transplant hospital had called us!  AAhhhh!!!  Did we struggle through all those years, to get listed and finally miss the call?!!!! We were frantic. I became nauseated. Denise and the boys scrambled to find the cell phone. Meanwhile, I called the hospital. Turns out they were simply confirming a pending appointment. (sigh with deep breath.)

Remarkably, as I am writing this blog, Denise comes running into the office. She had been on a call to her friend when another call came in.  The caller identified herself as a nurse at the transplant hospital. Denise freaked. As she handed me the phone, she asks, “Is this the phone call?  Is it?” Eager for the answer, I talk on the phone and hang up. “WELL”, she asks? I respond “No”. Turns out, it was the result of some blood test taken more than a week ago.

So while we are dealing with the telephone drama, I decide to find out more about this organization called “UNOS”.  United Network for Organ Sharing (UNOS).  In their words, they are the private, non-profit organization that manages the nation’s organ transplant system under contract with the federal government. Basically, they manage all of the organ transplant list for the country. For more information on this organization, go here.  http://www.unos.org/about/index.php

As I was poking around the site, I decided to call them.  A welcome letter I received from UNOS invited patients on the waiting list to call any time they had questions. I called. The lady on the telephone was very nice. She was more than ready to help me find out anything I wanted to know.  “How do I stack up on the list”, I ask.  “At the risk of being crass, who am I competing with for a new heart?” The lady was understanding. Apparently that is a common question among patients on the waiting list. The representative talked, asked questions, and walked me through some steps. When it was completed, I had a report in front of me. It showed the data in the region I am in. My region is Texas and Oklahoma. A very large area.

I began looking at the report.  We started by separating blood types.  B+. Check. The next category is status. We’ve discussed that before. I am a status 1B. Check. I look at the number of people who share all of those attributes. As of yesterday, there are “five”. Now the report does not take into account the size or weight of the patient. Just guessing, let us say that 2 people do not match up with my size. Then, we need to look at the “panel-reactive antibody test”. I briefly mentioned that last week. Again, this test measures a persons likely hood to accept a new heart. The lower the number, the better. My number was 0%. The least likely to have rejection problems. Maybe one of the three in my group has a higher number. That means I am in a group of two people. Me and one other person, vying for hearts.

Or maybe it doesn’t mean anything, and, like the rest of the patients, I must just wait without any pre-conceived notion of who is up first, and who is on second. That is ok with me.  We are on the list, and we thank God for that blessing.

The rest of my week was mostly unremarkable. I am down another two pounds. That is 12 pounds since the first of the year. Lose weight without exercise. Who would have thought? My blood sugar is still under control, and except for increasing frequency of chest pain, all is well. It does appear that what the doctors had suspected is, in fact happening. My O.M.2 coronary artery is closing .(Obtuse Marginal, a very small branch off of the left circumflex artery) I am probably experiencing a minor heart attack, and there is nothing the doctors can do about it. If the pain becomes too bad, I can go to the emergency room for some drugs to control the pain. … No thanks. I did that in 2004, 2005, 2006 and 2007. The drugs nearly killed me. No, I can sit this one out, knowing it will probably not kill me.

One last thought.  The last time I went to the cardiologist, I had to meet with the financial adviser. She reviewed all of the costs, and what my share would be.  Are you sitting down?  The cost for the hospital for the transplant is $500,000. That does not include any of the doctors, or staff, or medicines. Only use of the various rooms in the hospital.  Doctor costs…another $500,000. That covers all of the doctor and staff fees. There is a proviso to this though. These numbers only apply if EVERYTHING goes right. Any deviation from the norm, and all bets are off. AND, that only includes the 10 days or so during the transplant.

After that, I will require weekly heart biopsies for 3 to 4 months at $35,000 per week. Then more as the year progresses.  All told,  and if everything goes right, the first year from transplant will be roughly $1,500,000. But don’t fret! Medicare pays for 80%!! I am one of the lucky ones. I told you last year that I needed to get all of my insurance lined up before I did this. Well, I did. My medicare supplement should pick up the balance. At least according to the financial lady.

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

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

This memoir is the story of a man struggling with heart failure, and the trials he and his family endured for many years. It is the story which proves that know matter what -you do not give up. There IS hope.

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