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Archive for December, 2011

If you will recall, last week I was having problems controlling my weight. It is an unfortunate side effect of heart failure.My comfortable weight is 222.0.  I was bouncing around 225 and 226.  This week, the battle continues. Now I have raised the bar. My weight topped off at 227.8 on Monday morning. Well, as you might imagine, my home health nurse, Christine did not like that one little bit. So…this past Tuesday she called Dr Kwan’s office and scheduled an exam for me – on Wednesday. I was feeling uncomfortable. My belly distended, my fatigue was ramped way up. I couldn’t argue with Christine. So without a fight, I agreed to the appointment.

The next morning Denise and I headed out to the transplant doctor. We checked in. They took my vitals, did an ekg, asked me lots of questions, confirmed my medicines and took several bottles of blood. “The doctor will be with you shortly” were the last words the check-in nurse spoke.

There was a knock on the exam room door as it swung open. It was not Dr Kwan, but his partner. I regret that I do not remember his name. He is a young guy, probably not yet forty years.  He greeted us with a confident, but not arrogant manner. We immediately trusted him. He is reviewing the chart and asking us questions simultaneously. Then the physical exam. I lie down on the table and he begins by palpating my liver. Then the rest. He searches for evidence of excess fluid in my abdomen.

After the examination, he reached out his hand and helped me sit up. He begins by telling us that he doesn’t think the distention in my abdomen is fluid. He continues by explaining that people with really sick hearts sometimes get this condition because we don’t pump enough blood around our bodies. Specifically, I do not have the ability to profuse enough oxygenated blood to my guts. You know all the organs which apply. When intestines and other parts starve for oxygen, gas builds. On the surface it sounds funny. I am a walking “fart time bomb” right. Well, yea, except when you look at the big picture, you see that my other organs are begining to fail too. It is not just my heart that is failing. The doctor then asks the nurse where we are with the transplant. Not fast enough, according to the doctor. He gave her instructions. Part of his instructions included a statement like: “you need to do this right away – today. He needs to get on the list before it’s too late.”

Could we be hearing this correctly? Did the doctor actually say that I needed to get listed for a new heart before it’s too late? He did. The inotrtopic drug pumping into my pick line are working, but not at the dose they would like. Every time they increased the dose, my heart would begin to jump around. I have a lethal ventricular tachycardia inside me that is waiting for any excuse to show itself. The increase dose is too risky. I need to get on that transplant list and fast before other organs begin to fail. This road to transplant is fast becoming a race track. The only question is: will I ever make it to the finish line?

If you are new hear and don’t really know what is going on, check out the blogs from April and May of 2010. Then check out my book, “Death: Living To Talk About It” All the info you need, including links to purchase my book are on my web site.  www.brianhayden.com  .

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You may have noticed a conspicuous silence around my Facebook  page this week. I am fighting the best I can to stay active. Everyday, my heart failure pushes back and says “NO!” My level of fatigue is very high. So too is my level of frustration. I get up in the morning. I can not shave every day. Lifting my arm to the level of my face causes my arm muscles to burn, as if I had just completed a two hour work out in the gym.  Sometimes I go with Denise to the stores. Carrying my oxygen, infusion pump and bag of medicine, out the door I go. I will occasionally go into the stores with her. I have no stamina. After five minutes or so, I must return to the car and rest.

This week is a week of fighting off weight. They provided me with an electronic, digital scale. I must weigh myself every morning. On December 15th, I weighted in at 222 pounds. That is a good, comfortable weight for me. The very next day I weighed 226.4 pounds. Luckily my nurse was at the house. She immediately called Dr Kwan with the news. Any increase of more than three pounds, and we must notify the doctor. The best she can do is leave a message. She will call me when she hears something.

For the next few days I would hover at 225.0. Still too much for me. They finally agreed to let me double my dose of Lasix when I feel that I need to. Even with the increased dose, my weight didn’t budge. That is not until this morning. I got on the scale and I am now back to 226 4.  AAhhhhh!!!! It is Christmas Eve and I will be dam lucky if I can stay out of the hospital this week end.

One tradition that my family has this time of year is to gather on Christmas Eve. Denise cooks a traditional Italian supper.  Many types of fish, baked ravioli, antipasta, Italian wedding soup (from scratch), meat balls, sausages and much, much more. Plus a huge variety of desserts.  Our family and friends converge on our home. Lots of presents, wine and friendship. It is a wonderful evening. Normally this evening, I eat..and eat…and eat. I suppose that this evening I will have to watch what I eat. I really do not want to make a trip to the emergency room. I am right on the edge.

Merry Christmas to all!  Have a wonderful holiday. Please do me one small favor. Will you join me in a little prayer? I know we’ve talked about donors before, but as the days march on, thoughts of them fills my head. The gifts they and their family gives is truly remarkable. Please say a prayer of thanks to the donors and their families, that they may know peace and take solace in the knowledge that their gift lives on.

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And so you see, after more than three hours at Brook Army Medical Center, we finally got the answer we were looking for.

How was that? I thought I would begin this blog as if we have been having a discussion for the last year and a half. Do you like that? Alright, never mind.

Denise and I did spend the better part of the afternoon at BAMC though. I needed medicine ordered through the military pharmacy. You see, as long as it comes from the military pharmacy, there is no co-pays. That makes a big difference to me because I have so many medicines.  I also needed to have my pacemaker/defibrillator interrogated. Over the last several weeks, my home nurse noticed that my pulse is always around 50, give or take a bit. That is odd because my bi-ventricular pacemaker is supposed to provide me with 80 beats per minute. We discovered the problem.

My atrial beats are happening, but by the time the ventricle impulse hits I usually throw a pvc. Premature ventricular contraction. I have too many pvc’s and my fancy pace maker cannot keep up with them. The pvc’s have quite literally cancelled out any benefit the bi-ventricular pacemaker was providing. There are a couple of things to try. Problem was that each “something” they try is countered by an unexpected problem. It is kind of like playing chess with a grand master. He says check mate. You say WAIT! I think I see a way out. You study the board carefully. You try this or that. Despite your best efforts nothing can be done to get out of that check mate.

My heart is getting worse. Therapies which worked just a year ago are no longer effective. There really is only one way to beat the chess champion. You must cheat. I have lost the game of life. If I am to continue playing, I must cheat. I desperately need a new heart. That is now my only hope to cheat death and continue playing this game of life.

tic-toc… tic-toc…  time is running, and so is the clock

I fear for nothing, though night’s darkness is thick

I want a popsicle. The one on a stick.

Yea. I am still not a poet. Seemed like a good place to put a poem though. Don’t you think?

My journal came together like this.

Blood pressures: generally still too high. Every day the come in at about 137/88.  The doctors want to see my blood pressure below 100/60.

Pulses. Well we talked about that. They are staying between 40 and 60.  We can no longer do anything about getting that better. We will have to learn how to live with that.

Respirations are remarkably good. The nurses have encouraged me to use my oxygen more. That has had a positive impact on my stamina. I must say that I am so proud of my lungs. From a frazzled burned out hunk, they have re-grouped to be a very respectable organ. Great Job Lungs!!  yea, yea….

Even though my lungs are working much better, I continue to tire quickly. A ride in the car tires me. I asked the nurse why. She said that your core muscles are working to keep you balanced during the drive. Healthy people don’t even realize it. Those of us with heart failure know it all too well. Stay active but do not become fatigued is the advice I am getting. That is good advice, except I don’t know that I am fatigued until I am fatigued. Consequently, I am relegated to not doing much. I watch as Denise wraps the presents, finishes decorating the house and doing everything that is required to  keep a house hold going. I keep asking if I can help. She knows better and quietly declines. I get frustrated sometimes, but can do nothing to satisfy.  I need to stop now. It is nearly 6:30 pm. I must rest before bed time. Morning brings new challenges and the physical therapist.

Check out my book! Excepts,  links to Amazon and B & N, bios and more!  http://www.brianhayden.com/index.html

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Many of you know, at some point I re-shape the blog, add stories, write transitions and fix grammar until a new book is born. The sequel to my first book, “Death”Living To Talk About It” is coming to its natural conclusion. The working title of the new book is “Road To Transplant”. My journey on that road is nearly concluded.

This last mile on the journey is harder than I ever imagined. Frequent doctor visits to two different medical facilities, home visits by registered nurses four days a week, changing batteries and fluid packs every day, keeping a detailed journal, adding more medicines taken by mouth, and increased use of oxygen just to name a few things.

On top of the added work load, there is this unspoken fear that hovers between Denise and I. We have known that I am gravely ill. This is not a surprise. We don’t talk much about it though. I catch Denise crying in private from time to time. The pressure is sometimes overwhelming. Still, we focus on the positive. Instead of thinking about how near death I am, we talk about life after the heart transplant. Instead of complaining about the added work load, Denise finds ways to make fun of the “purse”I now have to carry everywhere I go.

My goal with this blog is shifting. First it was to get my thoughts together. Period. There was no alternative agenda. Then, after a while the blog shifted to become the paper by which I set an outline for coming projects. Now, once again it becomes necessary to change the purpose of the blog. Some of you have indicated an interest in how Denise and I deal with this every day. Well, I am now going to share my journal with you. unless something happens, I will publish the journal weekly. My journal lists my daily weight, blood pressure, pulse, waist size and a diary of what I do during the day and how I am feeling throughout the day. There are parameters that, when exceeded require the assistance of a registered nurse and ultimately, Dr Kwan. I will also share nurse interactions. This part is important because I deal with them nearly every day.

For example. Last Wednesday, I went to a fund-raiser. It was from 6:30 pm to 9:30 pm. My job was to sit. Well, Denise and I wandered a bit, looking at the silent auction stuff, and getting some food. I really didn’t do much walking. By 9 pm I was exhausted. My legs were shaking and I required help to get to the car. I was down for the count on Thursday. I didnt do anything. Couldnt do anything. Friday morning came around and I got the phone call from one of the nurses. She always confirms the visit before driving out. I told her I was too tired to work out, and told her why. Pleasantly, she acknowledged. A couple of hours later I received a call from the main RN. I was chastised for not taking better care. Paraphrasing: “You are going to be listed for a transplant any day now. You must manage your symptoms and be careful not to tire yourself out. What if you tired yourself out like that and got called for a transplant? ” You get the picture. I will share those conversations.

My hope is that you will get a glimpse into what it is like to live with end stage heart failure. My goal is two-fold.

First. If I survive this ordeal, it is but one more thing to give sick people everywhere hope. Hope to for their families and friends.

Second. For those out there who are still smoking: take a good close look at the trials my family and I are enduring. Ask yourself if this is a routine you want to emulate. Eating better, exercising, not smoking and generally taking better care of yourself should be a priority in your lives. Dont make it a new years resolution. Resolutions are too often forgotten. Make a committment to your family and your friends that you will take better care of yourself so that you may extend the amount of quality time you have on this earth. Commit to yourself that you will live a healthier life style. Do it for you! The rest will fall into place.

For information on the trials my family endured, check out my book! Excepts,  links to Amazon and B & N, bios and more!  http://www.brianhayden.com/index.html

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As the time for my heart transplant comes closer, I find myself thinking about the whole experience. Yes, the thought of getting a new heart is an exciting prospect. I have been sick for a very long time. And yes, it is a bit scary too. Imagine looking at your chest. Then imagine what it would look like with a big cut running right down the middle. Then, imagine the doctors putting this big metal contraption into the cut, and cranking on an lever to open your chest up. Ahhh.  Nice big hole. Lastly, consider your life. You are on the table. Your chest lies open and your heart is missing. YOUR HEART IS MISSING! Yes, the prospect of having a heart transplant is both exciting and scary.

But that is only part of the story, isn’t it. Where did my new heart come from? How much time must pass before I can call it my heart. Can we ever really change ownership of a heart?

What goes through my head these nights is the thought of a healthy man or woman. They have a family that loves them. It is December 2nd for them as well, and preparations for Christmas are full steam ahead. They checked the organ donor box when they renewed their driver’s licence, but never gave it much thought after that. What they don’t know. What they cannot possibly know is that in three or four months, someone from this family will get into a terrible accident. What they can not fathom today is that in three or four months the family will be kissing their loved one goodbye for the very last time. In the furthest creases of their mind, they cannot imagine that their loved one’s heart will be offered to me. Their liver will go to a little boy two towns over.  Our donors kidney’s save the life of a lady in Dallas. Our donors cornea’s give sight to an eighteen year old college student. During these procedures, blood donated by many make these procedures possible.

I cry for the donor and the donor’s family for their loss. I and many others appreciate the true charity of life you offer to each of us. The selflessness of your charity is impossible for me to express in words. But, I will try anyway.

Dear organ donor,

Thank you for offering your organs to  total strangers. Thank you for offering your heart to me. You cannot realize the value of your gift. You have given me a chance for life. You have given my wife and I a chance for life over sixty. We never thought that life after sixty was possible  for me. You have given my grandchildren an opportunity to know their grandfather and more importantly, for a grandfather to get to know his grandchildren. For all that you have done, for all that you are about to do,I thank you.

Donors family: you must be so proud of your loved one. Clearly they were wonderful people. In the moments of grief and profound sadness that you have endured, or will in the near future, thank you for allowing yourself a moment to think of others. You are all such gracious and kind people. I am saying prayers to all of you donors , past, present and future and your families. I assure you that you will be in my heart and mind every day. Your generosity overwhelms me.

God Bless you,

Brian M. Hayden

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