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Archive for January, 2012

So, it has been a very busy week indeed. Let’s get right to it.  All of you who follow this blog know that a PICC line was inserted into my right upper arm a few months ago. And, you know that the medicine flowing through that line is “Milrinone”, an “Inotropic”drug.  The drug is used to support my heart until all of the preliminary work can be done to clear me for a heart transplant.  In the simplest of terms, it makes my heart pump blood.  The doctors say that this drug is critical to my survival and I cannot be without. There may be grave consequences to be paid if I suddenly stop using this medicine. Well, last Sunday, Denise began the ritual of changing the bag of medicine. An exercise that is performed every other day. Imagine our surprise when we opened the carrier that contained the bag of medicine and the infusion pump to discover that the bag of medicine was still full. That’s right. The pump stopped working shortly after the last bag change. Most of the medicine remain in the bag, instead of in my heart.

As soon as we realized the gravity of the situation, we rallied to action. “Denise, flush the line. Let’s see if it is still patent (working). ” She connected the flush to my PICC line and slowly began pushing the sodium chloride into my heart. I began to taste the metallic flavor of the drug. “good”, I said to her. “Now slowly pull back on the syringe’s plunger and draw up some blood”. She did. Yes, there is blood. At least the line remains fully functional.  Then, Denise went to the supply drawer (yes, we have a medical supply drawer. Three drawers in a portable cabinet actually) grabbed the spare pump (yes, we have a spare $2,000 pump)  hooked up a new bag of medicine and got the new meds flowing once again. . But what about my heart? What about the rest of me? I have been without this medicine for nearly 48 hours. I did experience more trouble breathing lately.  Could that have been the cause of the problem?  We need to call the home health nurse.

We did. Obviously at 9:30 P.M. the nurse was home. The answering service would get the message to the on call nurse. A few moments later the phone rang. It was the nurse.  After hearing what had happened, she immediately began drilling me with questions.  She determined that we had done the right thing, and that I was probably going to be alright for now. A late night trip to the emergency room should be avoidable. Then, she said that she would touch bases with the transplant doctor that evening. If there was anything new to offer, she would call back. The next day, I heard from my regular home health nurse. She was surprised to hear that I was not in the hospital.  As my luck would have it, I dodged a very harmful bullet that week end. A story that could have ended tragically, turned out to be good news. Good in that I will be fine, and won’t have to go to the hospital.

All of that is now well behind us. Yesterday, I had the appointments with the transplant social worker, the transplant shrink (I cannot spell psyciatrist) , the transplant coordinator and the transplant cardiologist. We arrived at the doctor’s office at 8:30 A.M. and left about 1 P.M. Suffice it to say that Wednesday was long, and as it turns out , very disappointing day.

The shrink visit went well. It was the same guy that saw me back in 2006 and 2007.  That is all I have to say about that. The social worker was good. She was helpful. Her purpose in all of this is to make sure I have enough money to have the procedure, that all insurance is in place and that I understand how all the money stuff works, to delve into my home life and help us formulate a support plan. Moral support and actual support. Transplants are very time and labor intensive once you leave the hospital. Support for the care giver as well as the patient must be in place. Then we moved on to  the transplant coordinator. The lady is an Registered Nurse. Her name is Jennifer. And so the teaching part of the process begins. We were given information on facility specific mortality rates, what to expect after I am listed, restrictions and procedures about travel, getting sick and a myriad of other things to know about once I am listed. And that is before the transplant. Then she gave us a three inch binder full of information about procedures to follow after the transplant. We will be going over them up to the time of transplant.

I had been studying this stuff for many years now, and I was surprised by some of the stuff in the books. It truly is exchanging one set of problems for another. We will get into that at a later date.

By now, you may be wondering if I left the doctor’s office listed for a new heart. Sadly, the answer is no. The doctor said, “there are a couple of more tests that they want to run again. These tests were run  more than five years ago and must be repeated”. Immediately I felt let-down and a bit sad.  My mind was racing a hundred miles an hour as he began telling us about the tests he requires.  “We want you to have a new set of lung CT’s. It has been a couple of years, and they just want to make sure that everything is alright”, the doctor says with a soft, reasuring voice. “Oh, and you haven’t had a follow-up colonoscopy, have you Mr. Hayden”. I barely heard the sentence when I muttered “no”. Here is where it gets goofy. Then the dr asks me if I want the follow- up procedure. Huh? “Do I have to get it”? I asked. the doctor assured me that I did.  The first procedure discovered several pre-cancerous pollups. They were removed, but he wants to check again. I got angry.  My inner dialog was asking  “why couldn’t this procedure have been requested two months ago?” Now there is another delay AND I have to get a colonoscopy. Yea, I was angry. Apparently, according to Denise I scared the doctor. More like startled I think. He’s ok. I calmed down fast. But really, I ask you, if someone comes up to you and asks if you want a big-ass tube stuck up your butt, would you just sit there and say “sure?” Well I could not. I got a bit defensive. I am ok now. The procedure will be scheduled for next week some time.

The doctor says that the committee that places people on the transplant list will meet on  February 6th. If these tests he is ordering are all negative, I will be listed then. This process is exhausting, both in physical terms and emotional terms. I will be alright as long as I can perceive that we are making some progress.

Lastly, I am please to announce that my blood glucose levels are under control and doing fine. It takes 13 units of the long-acting insulin to get me there, but – nevertheless, I am there. My weight to is dropping, albeit slower than molasses dripping from a cup in the dead of winter in Green Bay Wisconsin. I always wanted to write a sentence like that. Thank you for indulging me. This morning I am weighed in at 220.4. Happily, I have stayed below 223 for several days now. Slow but sure is the way I describe my weight loss.

Have a great week-end everyone. We are making headway on my road to transplant. Pleases continue to pray for those donors and their families.

For information on me, and my journey with heart disease, go to my web site.  http://www.brianhayden.com/

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Nervous is the word I would use to describe my Wednesday. Pensive and nervous – but not scared. No, I was pensive, nervous and yes; ok – scared. Wednesday is going to be the first day I would take my insulin shot. The soft-spoken nurse had shown Denise and I how to do it. The brochures had re-enforced the methods, and I memorized all of the symptoms of “low blood sugar” and side effects of bad reactions with the possibilities of other feelings and symptoms. I was prepared to do everything. I just hope it doesn’t hurt!

That evening, Denise and I began the ritual, which would become part of our lives for a long, long, long…..long time. We took out the pen. The device looks like a felt pen, with its removable cap. There is a wheel at the bottom of the pen used for measuring the amount of insulin that will be used. At the end of the pen – a button.  This is not any spring-loaded button. Rather, you must keep pressure on the button for the length of time it takes the medicine to be delivered.

Before we took the cap off we gathered the other materials required.  Alcohol wipes – check. Tear the package open, but let’s leave the wipes in the package until we actually need them.  Needle – check.   The needle is built into a cone-like gadget. There is a needle coming out of both sides. When you twist the cone onto the syringe, the needle which is hidden inside the cone pierces through the rubber membrane at the top of the syringe. We looked at each other  as if we had agreed to jump off of a cliff at the same time – we nodded, and turned our head towards the supplies.   I picked up the syringe and removed the top. Hand me an alcohol wipe please. Denise handed the wipe and I carefully cleaned the top of the syringe where the needle would soon be placed. Denise then picked up the cone where the needle is hidden. She removes the sterile covering and carefully hands it to me. Taking the needle-cone thingy from her, I screwed it on the syringe, and with a short simple pull of the cone, the needle was exposed. I felt like it was a Saturn 5 rocket, newly discovered by the earth’s population.  I am laughing. The needle is so small and so thin, that my eyes can barely see it.

The first thing we must do is ensure all of the air is out of the syringe.  I turn the little wheel at the bottom of the pen to the number “1”. Then, I push the button. Slowly, a single little drop emerges from the needle tip. Then another, and another, and another until five of the little drops had appeared – and disappeared.  Piece of cake. My initial dose of insulin is 5 units. I turn the wheel to “5”. I unbuckle my pants. This is something I really need to do. I will be injecting the spare tire – which is my belly. Sitting down, my pants are a bit tight.  I ask Denise for another alcohol wipe. Do you remember seeing the footage of the first Apollo moon landing? They appeared to be cruising around, just over the surface until they find the exact, right spot to touch down. Well, I am doing the same thing with the wipe. Moving slowing from left to right, and back the other way. Finally I settle on the perfect place and put the  alcohol wipe on my skin.  It feels cold to my skin. A couple of swipes and the location is set. Slowly I bring the syringe toward the spot. The needle is right there, only a fraction of a millimeter from my skin. I push the needle into the skin. Because the needle is so small, the slightest hand tremor will unlodge the needle. The needle comes out, and right back in again. Twice, and very quickly. Finally I am steadied and I push the button. I hold it for five seconds or so and pull the syringe from my belly. I took a deep breath and relaxed. “That wasn’t so bad” I commented to Denise.

Over the next several days, I got very good at giving myself the injection. Every three days I increase the dose by “2” units until my labs are where the doctor wants them.

Denise and I are on this diet, so I am eating better that I ever had, and I think I am finally feeling the effects of the medicine that is being pumped into me 24/7. And the insulin is really beginning to get my blood sugar levels under control. It sounds a little crazy, and I am not sure why, but this week has been great! I have felt better than I have in a long time. During the day, I feel like I can do things. Play with Bear, go for a walk, and not even wear my oxygen! I tried that. Reality slapped me in my face. Reality reared its ugly head and reminded me that I am still a man dying of heart failure. Bear has this little squeaky toy that looks like a chip monk. He likes to tease us with it. I tried to get it from him the other afternoon. Our play time lasted exactly 3.2 seconds. I found myself out of breath, and lying on the couch. Denise brought me my oxygen. The next day I spent three hours at the pharmacy. THREE HOURS!! I was livid. Needless to say I got myself all worked up. I was frustrated and angry. Then, when we finally got out of there we got caught up in some traffic.  EERRR!! By the time I got home, I needed my oxygen and a nitro, as I was having pain for the first time in more than two months.

From out of know where. When I least expected it, life slid a little revelation under my door. “You are sick Brian and you need to stop acting like your not”. I talked to my home health nurse about my week. She was sympathetic. She told me that she often sees people in my condition getting slapped back into reality.  You feel better and all of a sudden you feel like you do not need to use your oxygen, or you can chase the dog a bit, or stand in front of a sink and wash a few dishes, or sit on a seat while showering and not ask for help to get out of the shower , or taking the trash out, or any number of other things most people take for granted. So, as long as I don’t do anything, I will feel good. If I veer of those instructions – well, let’s just say I cannot. Still, it was a great week. My weight is now under 222 pounds. (221.4) I am looking forward to losing more weight and feeling better. Next week, on the 24th I see Dr Kwan, so with a little luck, and a whole lot of prayers I will leave his office being listed for a new heart.

Have a wonderful week-end and don’t forget to hug someone!

For information o me, and my journey with heart disease, go to my web site.  http://www.brianhayden.com/

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This week’s activities are considerably less dramatic than those last week. There are some interesting things going on, but I promise you; no melt-downs today.

Actually, I am in very good spirits this morning. My blood pressure is holding steady: staying around 110/70. My weight, which is usually an issue is, like the overflow of water from a tsunami,  finally receding back to its original position. I weighed in this morning at 223.4  For nearly a month I had been struggling with my weight.   For some of us, weight is a good indicator of heart failure. My “dry weight” is 222 ponds. When I move higher, they begin to get concerned.  The last few weeks has seen me battle. I had been hovering between 225 and 228 pounds. It feels good to finally be back close to my  target range. That is until I received the news about my new goal weight that the transplant doctors want for me.

Getting a heart transplant is complicated. Many things need to match up in order to give the patient (me) the best opportunity for success (life). Of course we all know the obvious match: blood type. Did you know height and weight play a big role in the decision as well? Imagine a small framed man. Five foot- five inches and about 140 pounds. His heart works perfectly. His heart can pump blood to supply that five foot- five inch, 140 pound body. Put it in a body nearly twice that size and what will happen? You can imagine: the nice , new heart won’t be big enough to pump the quantity of blood necessary for the new, bigger recipient. By that same logic, a large  healthy man would not be able to provide a heart to a petite woman. There just isn’t enough space to put the heart. It would be fighting the lungs for the limited real estate found in the chest.

My transplant doctors are concerned that I am to heavy to match up quickly to a donor. He told me that I would have a better change to get a heart  if my weight was closer to 200 pounds. That is only 23.4 pounds away, right? Shouldn’t be that  big of a problem, should it? In the summer of 2009, just before I stopped smoking, I weighted about 200 pounds. That was considered my “dry weight”.  When I stopped smoking, my weight went up into the 220’s. I have never actually made a head-strong effort to get those post-ex-cigarette pounds off. That shouldn’t be so hard. I can do it. “Good! the doctor proclaimed. Just one thing…you are not allowed to exercise”. Yea, yea. You read it right. I need to lose about 20 pounds without exercising!

My primary care doctor got right to work. She set me up with their dietitian. Through metabolic testing and some other stuff, the dietician will sculpt a meal plan specifically for me! Of course, she also has to do it for Denise too. I can’t be eating one thing, and Denise another. We need to be able to eat about the same stuff. They did the work-up on Denise last Monday. They are doing me in a couple of hours. The doctors say that I will lose weight without exercise. We’ll see.

In the mean time I saw the Endocrinologist yesterday. Guess what??? I AM ON INSULIN!!!!  aaAAHHH!!! oh, sorry. I promised no melt-downs today. He prescribed the long acting type of insulin, and provided me with those auto-inject pens. He will titrate me up to the proper level over time.  I begin with 5 units each evening. Taking my blood at key points throughout the day, every three days we look at the results and adjust the amount of insulin. It may go up, down or stay the same. Based on the first couple of tests so far, it will probably go up. 5 units is a very low dose. It will inch up by 2 units every three days until we get the blood sugars under control.

This may seem a trifle to many of you who have dealt with diabetes for years. And, on its own it is. But I really need to get this under control now. Quickly. When the time comes for my heart transplant they will shut down my immune system with tons of steroids and other medications. While that will have a good outcome from a rejection perspective, it will push me over the edge into diabetes and my blood sugar will rocket!

Dr Kwan told us many times that getting a heart transplant won’t make you healthy. We are simply exchanging one set of problems for another. Of course the one set of problems (heart failure) is no longer manageable; whereas diabetes is totally manageable. It won’t be easy. Again, for those of you with diabetes you know: it is no pic nic. But, it is manageable, and that is what I am looking for. The solution to staying alive doesn’t have to be easy. I am just looking for possible.

Don’t know what is going on? Get caught up at http://www.brianhayden.com/  Find links to your favorite retailer so that you may buy my book! 

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A couple of days ago, I reached the point of critical mass.  For those of you not familiar with that phrase, it was first coined as a physics term to describe the moment fusion begins. Later, the term was twisted to indicate any moment when enough is enough, and a strong reaction was not only warranted, but required.

For me, that moment came when my primary care doctor told me I was diabetic. And she added…you have sleep apnea and it is wearing down your heart. And she added…the sleep apnea is causing you to run short of red blood cells and is making you anemic. And she added… I need to get a new sleep study so we can get a new C-pap machine. And she added… I need to start sleeping on this foam wedge. And she added…She is sending me to yet another doctor(an endocrinologist) to manage my diabetes. All this on top of the heart stuff, the lung stuff, juggling all of those appointments, and the home health nurse, and arranging the delivery of the weekly picc line supplies – tracking and refilling over 20 prescription drugs (between Denise and I) and watching the supply of oxygen and making sure I don’t run out of that. Then add the holidays onto all of that and the fact that I feel like SHIT (sorry) most of the day…oh yea, I am at critical mass and I am about to explode!!!!

It all began a couple of weeks ago. The home health nurse ran some blood work. One of those tests called for a blood glucose level. When I went to see Dr Kwan a week ago, I was told that the test result was high (285) and I should follow-up with my primary care doctor. As a good patient I did just that. I called her and shared what had happened. She ordered a battery of tests and arranged to see me just this past Monday to go over the results.  In addition, she wanted me to track my blood sugar three times a day using Denise’s tester. ( Denise is Diabetic). The results have thrown me into a tail spin. All of the blood sugars I tested were between 200 and 300.  So I add Diabetes to the list of things to deal with?  THIS IS TOO MUCH. Of course if I suggest doing some of this stuff later. You know, kind of spread it out…well I am just being a bad patient. Do what your told, right?  I am not so sure right now. I am angry and I am frustrated. I really do feel like my head is going to explode. So, what am I going to do about all of this?

I am not sure. I put a call in to a Rabbi. He is not someone I know. Nor am I a practicing Jew. I am trying to find the answers without defining the questions. I am very confused and maybe a little scared. Not so much scared I guess. I have been dealing with this for a long time.  With the exception of the diabetes, there were no surprises at the doctor’s office. But, I asked her ( my primary care doctor) to tell me how I am doing. I needed for her to tell me that I am critically sick. Very sick.  That I am dying. Somehow, I had the need to validate all of the things I already know the answers to. Brian, you know you are very sick. What do you want me to say? She won’t really get into this discussion.

I guess I am searching for a philosophical answer that makes sense to me. It need not make sense to anyone else. Is getting a heart transplant really alright? If God deals you your hand, shouldn’t we do the best we can with it, and when we are out , we are out? Are you following me here? Is getting a heart transplant kind of like cheating? Think bigger. In the whole scheme of the universe, you are born. You live. You die. Do we have the cosmic right to change the time-table for that life? Is living with another’s heart in your chest defiling some word of God? And if so, should I really care?

I think the big question on my mind this week is this: should I stop all of this?  Should I have the picc line removed…and the defibrillator turned off.  Should I take myself out of the transplant program. Should I say to hell with the high blood sugar and the sleep apnea and the wedge to sleep on and everything else? I did just that in 2007. For those of you who read my book, or the blogs from early 2010 you know. I hit critical mass once before and wound up in hospice. God may not have been quite so anxious to receive me, as the doctors were to send me. I am still here, and find myself once again at a cross roads.

That is what I have been up to this week. I spent a lot of time thinking. Perhaps over-thinking. I still have my family don’t I. Denise, Angela, Joe and the boys. That is a lot to give up. Plus, I have some very great friends, a sister, a brother and their families, Aunts, cousins and all Denise’s family whom I make no distinction as to her family or mine.  Over the last 38 years, they are just as much my family as hers.  I will suck it up. I have a lot to live for. Break out the sugar-free candy! Call the funeral home and tell them to cool their heels. They’ll get me. Just not yet.

Don’t know what is going on? Get caught up at http://www.brianhayden.com/  Find links to your favorite retailer so that you may buy my book! 

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