Living with heart failure

Muscle Atrophy

2012-01-13T05:23:00.000-08:00

My legs have been bothering me a great deal lately. Since I was diagnosed with Heart Failure, allof my muscles are weaker and have atrophied, and I understand that. It does seem that my legs have been muchworse than my upper body.

Before my diagnosis, I worked out all of my life. I ran 10K’s, I lifted weights, I did martialarts, etc., so I was pretty in touch with my body. Now my legs ache almost all of the time. Particularly my upper thighs.

For the past couple of months, when I try to stand up, mylegs sometimes don’t cooperate because of weakness and it feels like I mayfall. I am back on the cane because ofmy lack of balance. It is really quitedisconcerting if I try to walk without my cane. It seems like I may fall all of the time.

I wonder if anyone else has such an issue.

My best to all.

Grateful for the gift of existence

2011-12-31T06:53:00.001-08:00

December31, 2011

Sinceis is News Years Eve, I thought it appropriate to look back on theyear and look forward to 2012.

Thisyear started out bad physically, perhaps because of outside stresses. Funny how the doctors say to keep stress to a minimum. Hard to dothat with other persons behavior or events beyond our control.

Duringthe first months of 2011 I felt as bad as any time since I wasdiagnosed, and I regret to say It discouraged me. I feel better thanthat now, and I am grateful.

Ithink the first thing that comes to mind right now upon reflection isthat I still exist and I am grateful for that. Funny how fatalisticI was when I was first diagnosed in 2003/2004. Not anymore. I amway more conscious of existing and think about it often and each timeI am grateful.

Ilost my mother 4 years ago and my father last year, and we lost mysister Susan's husband in November to Pancreatic Cancer. He was only70 years old and my sister did well, but the funeral was hard.

Mysister Carol and I held my sister Susan by the arms and helped her tostay upright while she sobbed uncontrollably during parts of thefuneral.

OnDecember 23^rd of this year, we had to put my big orangetabby male down because of oral cancer. I held him and whispered inhis ear, “I love you Tarantino”, over and over while the doctordid what she must.

ThenI brought him home and buried him in my back yard. My sweet wifeLonni had dug the hole for me because I am so puny because of theHeart Failure.

Soupon reflection with my wife, in the five years we have known eachother, she has seen me bury my mother, my father, my brother in law,and two of my cats, my two favorite, by the way. I am sure this hasbeen tough on her as well.

Ihad my other hip replaced in the fall, and I am happy to report theexperience was far easier than the first hip replacement. It is nopicnic, mind you, but now I am walking almost normally and it seems amiracle. I have had this issue with arthritis since 2004.

Lookinginto 2012, I may be facing a pacemaker replacement, but we will crossthat bridge when we come to it.

Iam grateful right now to exist after dealing with this disease for solong, and I wish you all the the very best of health and a veryhappy life.

HappyNew Year to you all.

Results of my Echocardiagram

2011-11-21T06:19:00.001-08:00

Sorryabout not posting the results of my recent echocardiogram. Things got very busyas my sister’s husband passed after fighting pancreatic cancer for a year. He was only 70 years old and it was very hardon my sister.

Then Ihad to fly to San Francisco for a week for work. My organization is having financial issuesand it looks like I will have to cut my salary and others the first of theyear.

Anyway, myechocardiogram came back the same as last year, with an EF of 30 – 35 %. The technician noted that I have a great dealof arrhythmias and so I need to go to my other cardiac specialist to ask him ifit is anything new there.

They know Ihave PVC’s often, but they have so far decided to leave them alone.

My Medications as of November 1, 2011

2011-11-01T09:27:00.000-07:00

I had someone askme recently about my medications, so I thought I would publish them so otherscan compare to what they are taking. Please feel free to comment.

HeartConditions, etc.:

- ThirdDegree (Complete) Heart Block diagnosed Feb. 6, 2003 – Pacemaker dependant
- Non-ischemicCardiomyopathy - diagnosed July 16, 2004

- RestrictiveCardiomyopathy - diagnosed May, 2007
- 25 - 30%ejection fraction Feb. 2011

- BNPcurrent is 194 June 2009

- 3rdpacemaker implanted Jan. 29, 2008: Guidant bi-ventricular pacemaker/ICD -Contak Renewal 3 RF HE Model Number H217.

Medicinesas of August 31, 2011 – No NSAID's allowed

Coreg – Generic	25 mg	2/day	Morning/Evening
Lisinopril	10 mg	2/day	Morning/Evening
Ranexa	500 mg	2/day	Morning/Evening
Digoxin	0.125 mg	1/day	Morning
Enteric Coated Aspirin	81 mg	1/day	Morning
Furosemide	40mg Tab	As needed

Looking to my next doctor visit Thursday

2011-10-31T05:35:00.000-07:00

I have an appointment with my heart failure specialist Thursdayand he is planning to do an echocardiogram. The last tests in the spring showed my EF down to 25 - 30% from the 30 –35% I have been at the previous year.

Although that higher number is awful, it is still way betterthan the 25 – 30%.

It sort of explains why I almost never feel good. For the first few months of this year I felt awfulas my March post says, then it seems I improved a little bit but never reallyturned the corner. In April, mycardiologist was hopeful that the lower number was temporary and so he istesting me later this week to check his theory.

In the meantime, there is some good news that my wife got ajob last week after looking for nearly a year. It has been terrible for her and I have felt so bad for her. This is not something I could fix.

I hope I have done okay standing by her emotionally andfinancially. She has certainly stood byme in my health issues over the years. That is something I can never repay.

So we are in wait mode on my tests. I don’t know what my doctor can do beyondwhat he has done already to help my health. When we last spoke he said I was on optimum treatment. I hope he has something else up his sleeve.

Not going to quit

2011-03-01T04:49:00.000-08:00

I apologize if I gave the wrong impression with my last entry. I am not going to quit even though some days I feel like it.

Sorry.

Disappointed with myself

2011-02-08T05:50:00.000-08:00

When I was diagnosed with Heart Block in 2003, after facing a year of undiagnosed symptoms, and I faced the Grim Reaper for the first time, I told myself I would die making a point to my children, sort of like Cool Hand Luke, who although he lost, he did it with dignity.

Then came the Heart Failure, and then came the degenerative arthritis in my hips and back. I think it must be the time factor that has me worn down right now.

It seems that after nine years as of February 6, I seem to have lost my fight. I have not told my children, but my wife knows and that is bad enough. Also, I know.

I apologize for whining. Lately, I seem unwilling to fake it, even to myself.

Not doing very well

2011-02-07T06:51:00.001-08:00

It has been a while since I posted, I apologize. The past several months have been trying, as I am sure they have been to you.

I was hospitalized twice last year with stress that made me feel like I could not breathe. I lost my favorite pet in August, and the pain of it was physical. She was my baby white cat and the joy in my life.

We lost my father in late September, and although he was mean and abusive, he was still my father. He also left us a legacy of an unfair will, giving most everything to his favorite child and leaving very small amounts to the rest of us, thus forever splitting the family asunder.

Now, even though the doctors say their tests say I am not doing worse, I have never felt worse. I feel awful every moment of every day. The fatigue has never been worse, except when I was in the hospital. The pain from my arthritis is there constantly, and I can't take the better pain remedies because NSAIDs will kill someone with Heart Failure.

I apologize for this post, but I guess it is high time I was honest.

Stable again

2010-07-01T07:50:00.000-07:00

Since my last post, things have smoothed out a bit. I have had a couple of small incidents but nothing like the June 12 incident.

Now I am back trying to pretend this did not happen, because I still have to work for a living like everyone else.

I am grateful to still be here, though, and I do not take waking up every day for granted.

Hospital Visit Saturday

2010-06-14T06:56:00.000-07:00

My friends and family have heard me saying recently that I was trying to go a year without a hospital visit as it has been since 2002 when I have gone for 12 months without a visit.

I had a pretty good month in May and I was hopeful, but that hope went away on Saturday when my wife had to bring me to the emergency room because I could not catch my breath.

I had been getting shakier and shakier over the past two days for unknown reasons, and on Saturday, right after a nice lunch with my son and his wife I got into the car, and I started hyper-ventilating and just could not get my breath.

So we rushed to the emergency room and then put me on oxygen right away and started checking me out. They checked out my heart first and that checked out okay, they said, so they started doing all sorts of tests.

I was having heart attack symptoms with chest pains, and my left arm was going numb, my kidneys were not doing well and my BP was dangerously low.

Long story short, they could not find the cause, and after stabilizing me and running tests for 7 hours, they let me go home. We were impressed with the doctor, he showed us the tests and discussed the issues each step of the way.

Then the next day, the doctor actually called to see how I was doing. That has never happened before. I feel grateful that he was my attending doctor.

One last thing, this had a profound effect on my wife. She was fiercely attentive with me all weekend and would not let me do chores, etc. This seems to have had a big effect on our philosophical approach to life.

We have had a lot of side issues lately, but this was a wakeup call for us to appreciate our time together as we never know how much time we will have together. We talked about it several times.

On everyday Suffering

2010-04-06T06:17:00.000-07:00

If you ask most people with Heart Failure, they will downplay the daily suffering they are going through. I know I for one am not articulate enough to describe just how awful living with Heart Failure can be.

To be sure, some people are able to get somewhat better if they stick to their drugs and do what their heart failure specialist says to do.

Unfortunately, it seems that too many people I correspond with don't have a good doctor, and they are groping in the dark.

It breaks my heart to hear their stories, but also reassures me that I am not alone, and I guess most of us on the lists feel that way and are grateful for the community.

I know I am.

National Heart Failure Awareness Week February 14-20, 2010

2010-02-15T06:32:00.000-08:00

This week is Heart Failure awareness week. You can read the official notice here. Thanks to the Heart Failure Society of America for this. (HFSA)

According to the American Heart Association, over 5 million people in the US alone have Heart Failure. It is one of the most rapidly growing diagnosis in the world.

Many developed heart failure because of a cardiac event such as a myocardial infarction (heart attack), but some us contracted it for no know reason.

Doctors speculate this latter type was caused by a viral or other type of infection.

In my case they call it nonischemic cardiomyopathy. I also have restrictive cardiomyopathy (stiff heart), atrial fibrillation, pulmonary hypertension, and complete heart block.

I rely on my bi-ventricular pacemaker to any heart beat at all.

I also take Coreg, Digoxin, Lisinopril, and Ranexa. Although the Ranexa is indicated for Angina, I take it for my restrictive cardiomyopathy.

I am grateful for technology.

Atrial Fibrillation

2010-01-28T06:36:00.000-08:00

I went to my electrophysiologist for a routine check on my pacemaker, and they told me that I had been in atrial fibrillation 30% of the time.

I am also showing signs of pulmonary hypertension and right ventricular enlargement, and that is all new.

They seemed quite concerned, but I like this doctor because he doesn't just "watch it for now".

The doubled my dosage of Lisinopril, and programmed my pacemaker to suppress the Afib. They told me to come back in a month.

The good news is those steps seemed to work and I was down to 1% Afib, so we dodged another surgery for now.

I was grateful.

Back Online

2010-01-19T15:52:00.000-08:00

Sorry I have been absent for the last 7 months. Frankly, the hip replacement was way harder than I was led to believe by the doctors, nurses, and frankly everyone.

The procedure was a snap. The recovery was way beyond expectations. I don't know, maybe it was because I have heart failure. Maybe it was because I have been so through much stuff since February of 2003.

I am really not sure. Maybe I have become a wimp. A weak, worn out, wimp.

I do know that the recovery took away my dignity, and that after 7 months, I still feel the artificial hip every day. The docs told me it would take six months and then come back and do the other.

Since I have this disease, I plan to give it twelve months and see how it is doing then.

Hip Replacement Tuesday July 14th

2009-07-11T15:45:00.000-07:00

I am having hip replacement surgeryfor my right hip this coming Tuesday. I am told that it was caused by degenerative arthritis and that I have no cartilage remaining in either hip and they both need done.

A cardiologist researcher doctor I saw in Germany two years ago said that Heart Failure can affect the bones, becuase of lack of blood supply, so it seems this might be related as I am only 55.

After the last six years of surgeries to try to keep my heart from stopping, this seems a bit frivolous to me. In my mind, in is just pain, and that does not seem very important to me in the grand scheme of things.

I guess I will try this once and see what happens.

Post Tramatic Stress

2009-06-22T09:00:00.000-07:00

The Tuesday after my last entry on anxiety, I ended up in the emergency room with shortness of breath. I spent most of the day there and the good news is my tests all came back with good results.

Turns out it was my reaction to bringing my child to the hospital with her bi-polar upset and watching her suffer so much.

Watching her suffer is something I don't handle as well as before my Heart Failure. My body betrays me and it is irritating.

Dizziness and Anxiety

2009-06-15T16:54:00.000-07:00

Yesterday and today I have been feeling increasingly anxious. Yesterday I was just shaky. Today it came out in full fledged anxiety and I had to pull over when I was driving.

Perhaps the fact that I was on my way to check my daughter into the hospital for her fourth psychotic episode in five years was a factor. Hard to tell.

The thing is, I had a couple of weeks earlier in the year when I had the same symptoms. I have an appointment with my cardiologist on Friday and I plan to discuss this with him.

Defining yourself

2009-06-12T05:17:00.000-07:00

I realize we are not supposed to define ourselves by outside events, but I find it interesting that many of us with heart failure do this, often without consciously trying.

I know that I do. I can sometimes resist the temptation but many times I find myself doing so. It is just that this disease sort of takes hold of you and controls you 24 hours a day.

Trouble adjusting back to the world

2009-06-03T06:17:00.000-07:00

My sister had serious complications as a result of her pacemaker implant, and was hospitalized twice more as a result.

The complications required a thoracic surgeon to open her up and drain two liters of blood from her lungs. It was terrible.

I am relieved to say she is home now and seems to be out of danger, but when I spoke to her this weekend, she said that it was weird to come home.

This is a feeling I have had several times and still do on occasion. After being so near death, and in my case on several occasions over the past 6 years, it is sometimes difficult to adjust to life, or even the idea of normalcy.

Because of my experience, I have felt my sisters pain very acutely.

My sister has Heart Block

2009-05-14T06:46:00.001-07:00

My younger sister had surgery to implant a dual lead pacemaker two days ago. She was recently diagnosed with class 2 Heart Block. The surgery went well and I even spoke with her last night and she sounded bright and cheery.

I am so grateful, but this episode has brought back a lot of my own memories I thought I had put to rest. I was with her on the table in my mind during her surgery. It was very surreal.

My heart block was diagnosed 6 years ago and mine is class 3, or complete Heart Block. This preceeded my diagnosis of Heart Failure by approximately one year.

I hope that does not happen to my sister.

Decision

2009-05-12T05:53:00.000-07:00

I went to my heart failure specialst recently and he declared that I have been stable for one year now. This is sort of a big deal because in the last five years, I have not been stable very often.

Others with heart failure will tell you their story is the same.

I have decided as a result to try to get at least one hip replaced this year, or at least ry to do so before the end of the year. I probably need both, but I was told 15 months ago that the right one needed to be done.

Dilemma on Stem Cell Trial

2009-04-07T07:33:00.000-07:00

Many of the stem cell trials are in phase two now and opening up to more and more patients. There is even one that I know that takes non-ischemic patients.

My dilemma is that recently, my heart has been very stable and I am able to exercise like I have not been able to for the last two years, but my hips seem to be much worse and I am constant pain now even on "good" days.

It seems hip replacement seems the higher priority. I am still thinking on this.

Feeling Diminished

2009-03-05T15:06:00.000-08:00

I had the opportunity to see an old friend and colleague this week whom I have know for 14 years. I have watched him struggle with some life stuff, but he is now doing very well and seems to be truly a "man in full".

It reinforced my feelings and thoughts about how my world feels like it has shruken so much these past years. I still work full time and I am grateful to have a job that gives me flexibility.

I was lucky enough to get married to a wonderful woman in December last year and she is amazing.

Still, I can't seem to shake this feeling of diminishment. Too much water over the dam with this disease, it wears down all of us sometimes.

Numbness of Hands and Feet

2009-03-04T05:46:00.000-08:00

It seems I have more numbness in my hands and feet than ever before. It feels like they are asleep a good bit of the time.

Length of this trip

2009-02-17T14:11:00.000-08:00

I was recently asked by a friend of mine how long I have been on this journey, and I realize I have not written on that topic, short of anniversary posts. This story was originally too long and boring, so I have shortened it.

Part One

In February, 2002, I started getting some strange symptoms of an aching in my chest. My doctor has done a full physical and treadmill on me less that 9 months before and my heart was perfect then, so he told me I was working too hard and to take some aspirin.

The next marker I noticed was when I was on vacation in July of 2002. I went out to run on the beach and noticed that I had no wind, and my heart was beating abnormally hard after just a short while.

In February of 2003, I went back to my regular internist because I continued to feel lousy. This time my internist did an EKG and read the results. He came back into the room and said, “Mr. Connelly I have having my nurse drive you to the hospital right now, and I have scheduled emergency surgery for tomorrow morning for you to receive a pacemaker.” At that point, my life was changed forever.

That night, alone in bed in the hospital the night before my surgery, I made my peace with God and prepared myself in case of death. Ever since that moment, I have not been the same person. I had let go of my fear of death.

Muscle Atrophy

2009-02-04T07:26:00.000-08:00

So my last couple of posts have been related to muscle atrophy and I read something earlier today where someone mentioned their experience of muscle atrophy as a result of CHF.

I just sent a post to one of the mailing lists I belong to concerning this to see if others with CHF have experienced this. I am very curious to see what reaction this gets.

My guess right now is that this may not a well known issue because most persons with CHF are older instead of young and it is not so noticiable.

Slow Degeneration

2009-02-02T10:50:00.000-08:00

In reference to my last post, my legs are probably 25% of their original strength and my upper body, 50% of original. I tried to use the 30 days of no travel in Dec. and Jan. to build back up, but it seems to have been almost to no avail.

There are some stem cell studies supposed to start in Feb. near where I live and I hope to get into them when I return from this trip. Technology can be terrific. At least it provides hope.

Leg Pain

2009-01-15T07:28:00.000-08:00

When I was initially diagnosed with CHF, it seems that I lost a great deal of muscle mass all over my body, as if whatever attacked my heart, attacked the rest of my muscles.

I find that if I get the opportunity during the day to lie down and put up my feet, my leg muscles (what is left of them) ache. The more I do, the more they ache. It almost seems this is happening because of the process of replenishing them with blood causes at least some of this.

I don't seem to have this issue with my upper body. I think I will bring this issue up with my doctor next time I am there.

Hot Flashes

2009-01-14T08:53:00.000-08:00

When I was initially in the hospital in 2004 with heart failure, the nurses warned me I would be subject to hot flashes, as many CHF patients are.

I have have many during the last few years, but last night was the worst. For some reason, around 2 AM I got really hot. Just sticking my foot out of the covers was not enough this time. I ended up having to take all of the covers off me for a couple of hours.

It was very cold outside, so I am sure it was not because of hot weather. In any event, I was grateful when they went away.

Degenerative Arthritis

2009-01-13T14:21:00.000-08:00

My degenerative arthritis in my hips and back is becoming almost as much of an issue as my heart failure and my heart block.

I live with increasing pain every day. I take MSM, Glucoismine, Chondroitin, and fish oil, but I can't take any pain pills other than Tylenol, which is almost useless.

My wonderful wife is encouraging me to get hip replacement surgery, which I have been putting off because of the heart tramas from last year. It feels like the proverbial rock and a hard place.

Guess I will have to figure something out.

Stem Cell Hope

2009-01-06T06:55:00.000-08:00

Yesterday I spoke to a research institution that is recruiting patients for stem cell studies for heart failure patients. This is the first one in the USA that I know of that includes non-ischemic as well as ischemic cardiomyopathy. My wonderful wife also called another study that sounds hopeful as well.

I visited a doctor in Germany last year trying to get into the only non-ischemic study in the world but I did not qualify at that time. Now it appears that we may have choices.

It is ironic that after I wrote what I did yesterday morning that this would happen yesterday afternoon.

Feeling hopeful at the moment.

Life Expectancy

2009-01-05T05:15:00.000-08:00

There is a model on the web that helps those of us with Heart Failure to look at some of the metrics that drive our life expectancy. It is called the Seattle Heart Failure Model. It is a very cool software program one can run in a web browser. My last try had me at 9.8 years. It is right here.

http://depts.washington.edu/shfm/

What we hope is that stem cell studies and other new technologies will become available before this thing gets me and we can extend that. Technology can be a great thing!

Feeling Grumpy

2008-11-17T05:37:00.000-08:00

One of the email lists I subscribe to had a discussion recently that rang close to my case. Some people were discussing how they get grumpy sometimes because feeling awful all of the time sometimes wears them down.

This made me feel better to some degree, because the same thing occurs with me. If my heart failure is not making me feel awful, this arthitis I have keeps me in pain 90% of the time. And most often the both are active at the same time.

I know we are not supposed to complain, so we tend not to, except sometimes to each other. Anyway, I try to apologize to people and snap out of it as fast as possible.

I need to do better.

More trouble with travel than before

2008-09-07T19:36:00.000-07:00

Even though my last post said I was starting to work out again, the last two weeks have not been good. I have had an large increase in my old fatigue issues, and a new issue, nausea.

Because I have struggled so much in last two business trips I have been wondering how long I can continue to travel like this or even work. I guess I should still feel lucky, as I am now 4 years into my heart failure diagnosis.

Now a new research study has just been published stating that an ICD shock event foretells a much closer death possibility. Apparently the article was publiched in the Sept. 4, 2008 version of the New England Journal of Medicine. A news link is here: http://www.dotmed.com/news/story/6901/

I understand all the caveats that every case is different, but i must admit the way this year has gone for my case it is not a happy piece of news.

Sorry that this post is not very uplifting.

Working out again

2008-08-17T07:29:00.000-07:00

For the past two weeks I have been able to exercise again for the first time since before Christmas. It has frankly been terrific. Of course this current exercise does not approach what I used to be able to do, but any exercise at this point is a big win and I am grateful.

I feel that any time I can get to the gym is a win. Who knows how long this will last, but I am grateful for every workout.

Definition

2008-08-06T17:46:00.000-07:00

Sorry to post twice. But it is interesting how people with Congestive Heart Failure eventually start defining themselves by their Heart failure.

It is so awful living with this "thing" that we can't help ourselves. I apologize for telling a secret, because we all try to pretend it does not define us, but it does, in spite of ourselves.

My Heart

2008-08-06T17:39:00.000-07:00

So I went to the doctor yesterday. Dr. Dan explained that he discussed my "issues" with Dr. John Dicola from last week.

He made a few more adjustments, and then told me I could live with the bad feelings coming from the PVC's (pre-ventricular contractions), or take some more drugs. We are going to try what we have for now.

Sometimes I think about my poor heart muscle as a separate thing and feel sorry for it. it may sound wierd, and probably is, but what an ordeal it has gone through.

Visit number 13 coming up

2008-08-01T06:39:00.000-07:00

Visit number 12 yesterday went okay, except the doctor did not know how to optimize my pacemaker, even though it was not his fault.

Apparently my heart block is competing with my heart failure for control of my heart, and so my heart goes in and out of several behaviors on a semi regular basis. This of course makes it difficult to optimize for any one pattern.

The doctor did the best he could, and consulted with others, but he still wants to see how these changes work and have me come in next week.

He unilaterally offered that he was sure I was ready for this year's events to be over. But of course they are not.

Back to the Doctor

2008-07-31T06:23:00.000-07:00

Well, I go back to the doctor today. This will be my 12th visit so far this calendar year.

What's the point?

Head Rushes and Hot Flashes

2008-07-29T13:06:00.000-07:00

I have a new symptom this week. It started on Monday morning. I am getting head rushes many times a day (20 to 30) and hot flashes several times a day. The head rushes feel like mini-versions of when I went into Ventricular Tachycardia in May of this year.

I don't know if I have having atrial fibrillation or what. I am on a business trip now but hope it is okay until I get home and to the doctor on Thursday afternoon.

Knocking down one's spirit

2008-07-27T07:36:00.000-07:00

An interesting aspect of living with Heart Failure is the long-term struggle. Some days the fight is very important, and other days the spirit feels drained. I try to think of all of the others who suffer, many so much worse than those of us with Heart Failure, and then I feel small.

It is good for me to be humbled so. So many others never got a chance to grow up, let alone receive the blessings I have. Still, some days it gets hard, I will admit, and then I have to resolve to put this behind me, be grateful, and focus on others.

Best day in a while

2008-07-24T05:09:00.000-07:00

Yesterday was my best day in a while. The supplements I have started back taking seem to be starting to work, and my pain is subsiding some, although it is not gone.

My heart failure seems to be stable as well so it seems the broken left lead was the cause my my three episodes with Ventricular Tachycardia (see my posts from May, 2008). I am grateful that is over, at least for now.

I hope that the three surgeries I have had this year are the end of it for at least six months, but one never knows, so it is best if I am just grateful for a good day.

Pain again this morning

2008-07-20T07:10:00.000-07:00

I woke up in pain again this morning. I need to focus on being grateful for my heart failure doing better. Clearly I have some work do do here, because I am feeling some resentment from being in pain so long.

Side Issues

2008-07-19T14:47:00.000-07:00

Now that my heart failure has started to stabilize, I have become a bit more active, and I am genuinely grateful for that. Ironically, that has caused the degenerative arthritis in my hips to become more active and now I have not been pain free for over two weeks.

During the last two months, things got very dark, dealing with the near death experiences, the endless tests, the surgery, and the recovery issues. I stopped taking most of my supplements during that time because it seemed like, "what is the point?"

Well now I am paying that price because two of them were very important for staving off the everyday pain from my arthritic hips and my back.

I started back about 10 days ago and perhaps the supplements will kick in soon.

Good Days and Bad Days

2008-07-18T11:02:00.000-07:00

One of the things most all people with heart failure will tell you is that we have good days and bad days. Our good days don't begin to approach what good days were like before heart failure, (see the post entitled "Lead Blanket"), but everything is relative, of course.

Yesterday was a bad day. I felt extra weak all day long, I felt dizzy, my legs felt like they were draining when I stood up, and I had trouble concentrating. I could hardly wait for the day to end in hopes of a better day the next.

Turns out today is better than yesterday, and I am grateful.

Fourth Anniversay Today

2008-07-16T04:31:00.000-07:00

It has been right at two months since my last post so I thought it was high time to get back at it. This is the fourth anniversary of going into the hospital and being diagnosed with acute heart failure. Back then my lungs were filling with fluid, my kidneys were failing, and my ejection fraction was 12%.

Since then I have been to the doctor innumerable times, I have three cardiologists, and I have degenerative arthritis in both of my hips. I am feeling both lucky, because my children are mostly well, and I have a wonderful partner who is very supportive, but at another level, I sometimes feel resentful, I admit.

To pick up the story from my last post, since I got home from Paris, it has been a whirlwind of doctor's visits and tests, and then I had my 3rd surgery this year on June 4th to replace my broken left lead. They told me they were not sure this was causing me to go into Ventricular Fibrillation, but they needed to fix this and see what happens.

The surgery went okay, it lasted three hours and this one had more pain than the prior three pacemaker surgeries. I found out the probable cause a few days later that the doctor moved my pacemaker as well as replaced the lead. It seems to be implanted in the muscle now where before it was not.

After a few weeks, I seem to be stable and I am grateful for that. I have started exercising just a bit, as I want to try to build back up the best I can to prepare myself for the next time something happens.

I woke up feeling irritated today and I could not put my finger on it, but perhaps it was an unconscious reaction to my forth anniversary of dealing with CHF. Life goes on, so I need to go back to work now.

Made it home

2008-05-16T05:03:00.000-07:00

I got home last night, after a long day, but I am very grateful to be here. Lonni just decided she would get me home and willed it to occur.

Trying to get home

2008-05-14T03:27:00.000-07:00

So I wrote last week (Monday, April 28, 2008) of a close call I had when Ventricular Fibrillation kicked in and I passed out on the bed and then my ICD shocked me and brought me back.

Well I am in Paris on holiday this week and we were walking back from lunch the first day I arrived, and I started to feel that low blood pressure moment, and the next thing I know, I was face down in a shop we were walking by and people were looking over me with worried expressions. This time I have no memory of reaching out to hold myself up to the point I woke up on the ground.

I felt really bad about upsetting so many people who were around me but everyone was really nice. I am grateful Lonni was here to help me. We went back to the apartment where we are staying and she watched over me the rest of the day.

This one was worse than the first incident last week and the next day was my worst day ever since this began. I feel really sorry for Lonni as this is clearly diminishing her holiday, although she denies it adamantly. We are trying to do one thing a day, but this is a severe cutback in our itinerary.

Now it has gotten to the point where I am staying in bed all day our last day in Paris, because this has gotten to the point where I can no longer walk without help. I got shocked again this morning just lying in bed.

We are working on strategies to get taxis and wheelchairs prepared so we can try to get back to the US tomorrow so I can go see my doctor. He is planning surgery as soon as possible when I get back, but needs to see me first on Monday.

Suffering of Heart Failure Similar to Cancer

2008-05-04T06:41:00.000-07:00

I read a new article today in the US News and World Report magazine entitled "Suffering of Heart Failure Similar to Cancer". The article was based on a study that came out recently, where researchers interviewed advanced cancer patients and heart failure sufferers.

The study looked at 1) physical symptoms, depression, and spiritual well being. By all three measures, the heart failure patients ranked lower than advanced cancer patients.

The text of the article can be found online here: http://health.usnews.com/usnews/health/healthday/080502/suffering-of-heart-failure-similar-to-cancer.htm

A Close Call

2008-05-02T13:02:00.000-07:00

I was on a business trip this week in Washington DC. On Monday night I got back to my hotel room from dinner and I started to feel like a low blood pressure moment was coming on.

I sat down on the bed, and then I started to feel really awful like I would pass out. I remember sort of falling face down on the bed, and then wham! my defibrillator went off. My first thought was crap!

Then my body all of a sudden started to feel better, very relaxed, but very funky. Sort of like coming down from a major adrenalin rush.

I called my cardiologist's nurse but it was late at night so I left a message. Long story short, they got back to me and sure enough I was having the dreaded Ventricular Fibrillation (VF) (www.americanheart.org/presenter.jhtml?identifier=4784 ) but the good news is my ICD worked and I am grateful.

For the rest of the work week, I was sort of leery that this event could happen again at any time, but I am grateful it did not. Still kind of strange to walk around knowing there but for the grace of having my ICD, I would have most likely been dead that night.

Heart Failure at High Altitudes

2008-04-09T15:45:00.000-07:00

I am travelling this week in Mexico City, Mexico and the altitude of the city is 2240 meters (7,349 feet) above sea level.

I have not had too many problems dealing with this while sitting in meetings, but walking and climbing stairs cause the feeling that all heart failure patients know, the one where you feel a little tight in the chest because you are not getting enough oxygen.

Last night in bed, I experienced some breathlessness that I have not had for a good while and that was disturbing, of course.

All in all, it has not been too bad but I will be glad when I get home Friday night.

Heart Catheter Results

2008-03-31T15:00:00.000-07:00

I reported in my March 22, 2008 entry that I received results from my stress test that conflicted with all other tests for the past 4 1/2 years. The notion that I might have had a heart attack that went unreported all of that time was upsetting, I will admit.

On Thursday of last week, they followed up with a heart catheterization and the results did not match the stress test results. The Cath results this time were consistent with the last several years of test results, and they reported:

1) No myocardial infarction and no scar
2) No blockage
3) My EF was the same as my last echo, 30%

Amazing how these differences occurred. Granted the stress test results were read by a doctor who is not my regular physician, because my regular heart failure specialist was on holiday.

Unfortunately, this time around my heart failure specialist, who performed the catheterization, spoke to my family and not to me, so I have not had a chance to ask about the reason for the wide difference in results.

I could probably guess the answer, though, as something like, "It was a false positive", or "That is why we do follow up tests."

So now I am supposed to feel better about all of this, but right now I just feel whipsawed. Time will make that better, it always does.

My best to all.

A Lead Blanket Day

2008-03-23T15:25:00.000-07:00

For those of your who have ever been to the dentist, and had x-rays taken, remember how they put a lead blanket over you to protect the rest or you from the x-rays?

For those of you with heart failure, I am sure you know that feeling on a regular basis. You feel like you are covered in a lead blanket. Some days worse that others.

Today I had to go lie down for a while, and the lead blanket feeling was so great, I woke up and touched my throat, for it felt it was covered with something, but it was not.

I am grateful today is a Sunday and I don't have to try to work today.

Blessings to all of you.

News

2008-03-22T06:38:00.000-07:00

I finally got the results of my nuclear stress test yesterday and there is good news and bad news.

The good news is that my Ejection Fraction was confirmed to be at 45%. The last test in October 2007 it was 30%. This is the best it has been since this all started. 60% is normal.

They also found a scar on the heart that the nurse said looks like I did have a heart attack a few years ago. I will follow up with the doctor on this when I get a chance to talk to him, but this is a big surprise.

The not so good news is they found what they think is a blockage to the heart of 70-80%. They need to go back in and take a closer look so I am going to the hospital Thursday for an outpatient procedure called a heart catheterization. Link to description here: http://www.americanheart.org/presenter.jhtml?identifier=4491

They are not sure what they are going to find when they get in there, as I may need a stent to be put in, or I may need bypass surgery. If a stent is put in, I could end up spending the night at the hospital. Stent description: http://www.fda.gov/hearthealth/treatments/medicaldevices/stent.html

If they determine I need bypass surgery, they will schedule it at another time.

I must admit this has me shaken a bit. I am so grateful for my children and friends.

Still Waiting

2008-03-19T16:57:00.000-07:00

This is amazing. I have gotten a voice mail message from a nurse I have never met, but I still don't have final results. This is about a life.

I think I need to change doctors.

No Word Yet

2008-03-14T15:40:00.001-07:00

I was supposed to get word from my doctor today on the results of my stress tests, but nothing. I call and left a message hours ago, but no call back.

For some reason the potential results of this test have me on edge.

Waiting on test results

2008-03-13T05:51:00.000-07:00

I finally had my nuclear stress test yesterday. I need these results before my heart failure specialist will give permission for my hip replacement surgery.

I had the chemical version where they inject you with a medication that dilates the blood vessels and simulates what they would do by having you run on the treadmill. They did this because my Coreg had lowered my heart beat and my pacemaker regulates it and they said the treadmill would not have the effect they needed. It makes you feel really lousy but it only lasts 10 minutes or so.

I am supposed to get the results tomorrow. The last time I had this test done was August, 2004 in order to determine if I needed a heart transplant.

Who knows what the results will be? My EF has been up and down dangerously so for the last year or so.

I have been feeling worse than usual lately but I have found that this is not necessarily an indicator of my my health, I am finding.

No Hip Replacement Yet

2008-02-07T13:18:00.000-08:00

I went to my Heart Failure specialist three days after my Pacemaker/ICD replacement surgery and the good news is he was pleased with the result. I am grateful that I have two terrific cardiologists who are very good at what they do.

I asked him about permission to get a hip replacement (see post from Jan. 28, 2008). He told me that he wanted me to come back in 30 days for a stress test before he will give permission.

I don’t know if he suspects something, or he is just being conservative, but if that is the case, it seems to be a good thing, all things considered.

Que Sera Sera.

Back and all is well

2008-01-30T15:10:00.000-08:00

Things went well on Tuesday and I am feeling good, all things considered. I was told the procedure would take 20 minutes and it ended up at around 2 hours, but they were just being careful and I am grateful for that!

They did it under a local and I got to stay aware and fell them tugging and pushing.

I am not wearing a sling, but I am not supposed to raise my arm or drive for two days. Also they said don't lift anything over 5 pounds for two days.

I am a little sore and a little tired but doing better than I deserve!

New Pacemaker Tomorrow

2008-01-28T12:03:00.000-08:00

I went to my regularly scheduled visit with my electrophysiologist last week with a big routine mind set as that is one thing related to my Heart Failure that has been working.

In fact, I was really focused on asking permission to get a hip replacement operation as the day before I was diagnosed with degenerative arthritis in both hips by an orthopedic specialist at Emory.

Before we got to that conversation I was told by my doctor that I may be the only patient he has ever treated who has three separate recalls on their pacemaker. The first recall was in 2005, the second recall was in 2006 and I had to go in at that time to be re-programmed and turn a safety feature off.

This third notice came on January 4, 2008. This one says the pacemaker could quit working if certain factors occurred, and I meet several of those criteria.

For those interested, I have a Guidant Contak Renewal bi-ventricular pacemaker with an ICD. Model number H177.

The decision to replace came from my doctor because I am 100 per cent paced. I have something called Heart Block that preceded the Heart Failure and my Heart Block is what they call Third Degree Heart Block or Complete Heart Block.

Using this would be no big deal and it is still expected to be such. They don’t anticipate having to put in more leads, but will test them when they get in there.

The Tricky part is they have to undo the old pacemaker one lead at a time and then hook up to the new pacemaker and then repeat because I can’t be off the pacemaker at any time because with out it I don’t have a heartbeat.

Anyway, I thought it was time to break my silence.

Back From The Brink

2007-11-11T08:24:00.000-08:00

So this increase in my Ejection Fraction from 20% in August 2007 to 30% in November 2007 is an interesting exercise in my thought process. Good news to be sure, but the up, down, up thing is sometimes a challenge.

I understand it is not unique to chronic, dangerous diseases. We read every day about Cancer patients going into remission and then having the Cancer come back. Although this is not really the same, the never knowing if, is something all patients like us must learn to deal with.

So I am grateful to be sure. I had begun thinking about the heart transplant that seemed inevitable (if I was so lucky) in the near future, and was trying to take care of the rest of the body so I could hopefully still qualify. My doctor and I had discussed the timing and he had some parameters in mind to tell him when it was time to do it.

I had not told very many folks how bad I was, of course, that does no good and people just get freaked out anyway. I could see myself shrinking before my eyes at that time, though, and my doctor said he did not know what to do.

Turns out he figured something out, because almost immediately after he experimented on me with the Ranexa, I started to feel better. I am grateful for his innovation, because Ranexa is not indicated for CHF patients, but his research had led to conclude it might help one of my issues.

Now it is time to rebuild some of what was lost in the drop from October 2006 to August 2007, when I dropped from 35% EF to 20% EF.

Hospital Visit

2007-11-11T07:41:00.000-08:00

So I got home from a business trip to Germany a couple of weeks ago and I woke up the next day with a fever and flu like symptoms. It was the weekend so I decided to wait it out and on Monday I started to feel better.

On Tuesday I woke up feeling worse, with fever, aches, I could not keep anything down, and also stomach pain. Long story short, I ended up going to the emergency room at 5 AM because the pain was so bad and I was starting to get shortness of breath.

They put me on oxygen and IV’s to replace fluids and did a bunch of tests for the fever, stomach pain, and also my heart. I was too out of it most of the time, but it appears they were very thorough.

Good news is they said it was a virus, with a secondary infection for which they gave me antibiotics. It was a big scare, of course, but some really good news is they did an Echocardiogram on my heart and ran my BNP.

The echo showed my BNP had increased from 208 in August to 256, which is not a big deal, and my EF had improved to 30%. 30% is not great as you know, but I was dropping like a rock for several months there so any improvement is a win from that perspective.

My Cane

2007-10-29T17:08:00.001-07:00

When I first came home from the hospital with my CHF in July of 2004, I could not make it across the room without help. Taking a shower wore me out for the rest of the day.

After a few days it became clear that I needed something to help me stand up. To get across the room without help. I used to bench press 360 pounds. Run 6 miles in Georgia heat during the summertime. Play tennis at noon time with a good friend of me.

As a good friend of mine used to say, "Them's the berries." It was time to admit reality, so I bought a cane. My cane has become a good friend. I don't need it everyday anymore, thank you. But on rough days, it helps me deal.

I have also bought one that collapses that so I can bring it on trips. Very cool. I used to be very ashamed of my cane. I used to hide it and sometimes I still do. But it is what it is.

Deal is what it is all about. I am so proud to be associated with the others on the Heart Failure lists ans Cardiomyopathy lists I am a lucky member of.

If you are dealing with CHF, Cardiomyopathy, or what ever you call it, I encourage you to do whatever you need to do to deal.

My best to you and yours,

David

Hope

2007-10-09T16:33:00.000-07:00

So we buried my mother today. Sorry to bring this up because she had Alzheimer’s, not heart failure. But the whole process was about hope. Hope that one day no one will suffer from Alzheimer’s, or Parkinson’s, or cancer, or heart failure.

Without hope we have nothing. We project hope. We try to believe. Even if we fear our doubts will condemn us. We fear, and we have hope. Without it we have nothing.

I apologize for this post, but I am a mess tonight. Frankly, as I was sitting in the funeral mass today, I was thinking there is a good chance I am next. As you have read, I am not doing very well lately. I apologize, but that is what came to mind.

I know someone very well who recently lost a father and then a brother, back to back year over year. I can’t imagine the pain that family feels, although I imagine it better than I once did.

One of my brother in law’s did a eulogy today about my mom. It was amazing to hear a brother in law cry when talking about the fact that my mom was one of those persons who improved the world by her existence and her positive influence on others. I pray that one day I may be worthy of her.

I have hope for all those who suffer. I also pray for everyone who does.

Technology is our Friend

2007-10-07T09:32:00.000-07:00

My mother passed away yesterday after a difficult battle with Alzheimer’s. I know someone who recently lost her father after a nasty fight with Parkinson’s, and yet another who recently lost her father to Lung Cancer. I mention this for two reasons. One is that this is on my mind, and two, because I want to say that one day I hope that technology will put an end to this kind of suffering.

Every day I see people suffering with Heart Failure and the various side effects and even from some of the treatments they have to endure for the disease. I mentioned in my last entry that in some cases we know that Heart Failure is a more fatal diagnosis that Cancer, but we have hope that people in other times did not.

Technology is our friend. Technology is giving most of us with heart failure a better quality of life, and in some cases, life itself, that we would not otherwise have.

Speaking of my own case, I know that without the Carvedilol (Coreg), Digoxin, Lisinopril, and Spironolactone, I would have had a heart transplant or worse by now. In fact, I also have another heart condition called heart block. I was diagnosed with this the year before my Heart Failure was diagnosed. In my case I have something called three degree heart block, otherwise know as complete heart block.

Without my pacemaker I have no heart beat.

They call persons with this situation pacemaker dependant. My son told me this qualifies me to be an official cyborg. Pretty cool, huh? Since my heart failure, they upgraded my pacemaker to something called a bi-ventricular pacemaker with an ICD. When I received this device in September of 2004, it had been approved by the FDA for only a few months.

Recently my doctor prescribed another wonder medicine for me. Apparently my heart not only does not contract properly, it does not relax effectively either. He calls this a “stiff heart”. Perhaps it is one of the reasons my EF has dropped from 35% to 20% from October 2006 to August 2007. In any event the medicine is called Ranexa and ever since I started taking it I have started to feel better. Not better as in cured, but it seems to have stopped or at least slowed the precipitous free fall I as experiencing. It came none too soon, frankly.

Here is a medicine that is not yet widely approved for Heart Failure, but is usually prescribed for Angina. One of the effects of the drug caught the eye of my heart failure specialist and he asked if I wanted to try it on his recommendation and I said yes. What an amazing thing.

There are many more examples of breakthrough technology in the works for us, including promising results with stem cell therapy, and now some really amazing findings in the world of molecular biology, such as this study on calcium and CHF.

It seems that mankind is learning at a rate as never before in the history of the world. Every day I see new breakthroughs and news studies striving for breakthroughs. I have been using an amazing web tool called Google Alerts. These let you set up your own key words and then they automatically email you whenever they get a hit. I have several alerts set up, including “heart failure”, “cardiomyopathy”, and “stem cell nonischemic”. At times I have spoken to my doctor and I have known about events before they did.

My parting thought for this entry is hope. Hope for everyone who struggles with this disease, or any disease. Hope also for those who have loved ones suffering.

I am very grateful.

Fear

2007-09-09T14:01:00.000-07:00

So of course, this is one of the big ones. I will try to address the topic of fear in this entry in several dimensions without turning this in a book (grin). Everyone has fears. Any one of us could meet our end any day by many different ways. I accept that as a valid point. This entry, I hope, will describe some of the specific fears of patients with Heart Failure, and communicating the issues of those with Heart Failure is the point of this blog.

The first fear most of us face is, will this kill me and how long do I have? When health professionals are candid, that admit that this is a debilitating and degenerative disease with no known cure.

One of the first studies most of us read has this message; “Median survival after the onset of heart failure was 1.7 years in men and 3.2 years in women.” This comes directly from the Framingham Heart Study, the definitive study accepted in the medical world, although the data is starting to get old. A link to this reference is just below.

http://www.ncbi.nlm.nih.gov/sites/entrez?Db=PubMed&Cmd=ShowDetailView&TermToSearch=8319323&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus

Then there is also this accepted fact of science that comes from the May 15, 2003 issue of the New England Journal of Medicine: “Symptomatic heart failure continues to confer a worse prognosis than the majority of cancers in this country, with one-year mortality of approximately 45 percent”

So, we read this, and we get our first dose of reality therapy when it comes to dealing with what we have and understanding the seriousness. Cancer has an overall higher rate of survivability. So there you have it. Deal with it.

Another dimension of fear is the fear of the body giving out when you want to do some daily function. Like bathing. Or walking. Or being with someone you care about. Ask any Heart Failure patient and most will tell you they have good days and bad. Sometimes the bad days are predictable, when we over-exert ourselves.

Sometimes we start to feel okay and we tend to forget quickly that we pay a price and we do too much and then wham! You feel like you where run over by a truck. Sometimes this comes on without any real warning as well, and we never know when it will hit.

One last fear I want to express is the one that any patient faces when they have a chronic disease with a high mortality rate, and that is the fear is leaving your loved ones behind without knowing they will be watched over and cared for without you there. This fear can be exacerbated when one has small children, or has loved ones or friends that depend on you to be there for them.

In my personal case, I am lucky enough to have great friends who are on the list of persons to call “just in case” I am not able to be there for one of my children, who struggles with her own chronic disease.

I don’t want to close this post on a negative note, so let’s just say this fear thing is not something that controls most Heart Failure patients that I have met. Almost without exception, I have seen amazing bravery from old and young alike. I have heard that real bravery is not an absence of fear, but the ability to face and deal with fear. I am grateful to be associated with these people.

Some of my upcoming topics will be a bit more uplifting, they include Hope and “Technology is our Friend”

Thanks and my best wishes to you.

My BNP

2007-09-04T08:48:00.000-07:00

Sorry to all who may be waiting on the BNP answer. The doctor’s office originally sent me the wrong results, so this has been delayed in reporting.

The good news is that my BNP is only 206.6 as of August 3, 2007. This is up from 96.6 in May 2007, but it is way better than it could be given the fact that I have dropped in my EF from 35 % to 20% in 9 months. So I am very grateful for this test result.

I still plan to pursue the stem cell route, and will send my results off to the doctor in Germany that I visited in June of this year, and I will also purse the doctors my friends have recommended.

We shall see.

Something Good

2007-08-19T15:23:00.000-07:00

My Heart Failure Specialist game me a new medicine on my last visit to see if it would help with my coping skills with the Heart Failure. It is called Ranexa and it is not usually prescribed for patients with non-ischemic cardiomyopathy.

I have been taking this for two weeks now and I am happy to report that this medicine seems to be working for me. It is not meant to make me better, but to help me to not feel awful all the time.

One thing that Heart Failure patients report, and I am no exception, is that we all feel pretty awful most the time. We have good days and bad, good days are only tiring, bad days many of us feel like something has drained us of most of our life and we can have some or all symptoms below;

Mononucleosis-like fatigue,
Muscle soreness and weakness,
Arthritis like join pain in various locations, including back, hip, and knees
Sever muscle cramping in my legs, and sometimes my left hand
Fluid retention
Shortness of breath,
Dizziness,
Heart Palpitations,
Hot Flashes,
Cold Chills.

I plan to ask permission of some other to post portions of their posts on this blog, so a broader point of view can be expressed.

I also want to send kind thoughts to all those who suffer with Heart Failure, and humble thanks to those who have helped my family and me so much over the past few years.

My next post I plan to discuss fear.

Waiting on Test Results

2007-08-19T15:19:00.000-07:00

It has now been 16 days since my last cardiologist visit and I am waiting on the blood test results a bit anxiously. The number I am waiting for in particular in the BNP number, which is a measurement of the amount of stress the heart is in and a key indicator as to whether the researcher in Germany will take me into his trials for adult bone marrow stem cell treatments.

This phenomenon of my heart function dropping so quickly for no known cause is admittedly disconcerting.

I think this anxiousness is typical of any patient awaiting results, and for me it is not a stressful as some other test results, but it is still important to me.

I guess we will see what we will see.

News

2007-08-07T11:23:00.000-07:00

I went to my heart failure specialist on Friday, Aug. 3, 2007, for my usual testing and blood test, exam, etc. My Ejection Fraction continues to drop, this time to 20%, down from the 25% measurement in May 2007.

This is a continuing trend as my EF was 35% in the October 2006 measurement.

That gives us a 15 - 20 percentage point drop in 10 months.

This is baffling to my doctor, as he says I am "optimally treated" with the industry best practices for prescriptions as well as having a bi-ventricular pacemaker with an ICD.

We discussed the point at which transplant begins to be a factor, and he said we are not ready yet, and there is no real formula. It is really a factor of when they deem I have a better chance of survival as is, or with a transplant.

Action steps moving forward are to get my blood test results, and package up the echocardiogram and other results, and send them to the stem cell researcher I visited in Germany in June.

Then I had the conversation with my children, and we are working on a plan for contingencies while we can. We don't want to have certain conversations under acute situations.

I am grateful for my wonderful children and how they are working me. I am a lucky man.

Gaining Weight

2007-07-23T05:19:00.000-07:00

My body seems to be trying to gain weight lately, in spite of my increased exercise program. Sometimes it seems random, and my metabolism just seems to stop for a while, and then just as randomly, it comes back.

This could be some water weight, as I tend to retain water after a busy day or the days I exercise, and then it comes off naturally if I rest enough. It does get frustrating sometimes.

I plan to raise my focus on this even more, as I have focused on trying to get these extra pounds off recently and my efforts have not been effective enough.

Third Anniversary of Heart Failure

2007-07-16T16:54:00.000-07:00

July 16, 1007

I was not going to write again today, but I looked at my calendar, and today is the third year to the day when I went into the hospital dying of heart failure. It is ironic that I decided to start this blog today, and not on purpose.

When I was originally diagnosed in July of 2004, my Ejection Fraction was around 10% (normal is 60%), my BNP was over 2000 (normal is less than 100), my lungs were filling with fluid, my kidneys were failing, and I could not breathe without oxygen. They put me through the tests to qualify me for a heart transplant as they believed I would die without one.

I could not walk across a room without help.

I was 50 years old at the time with low cholesterol, low BP, and very fit just a few weeks before, able to go 45 minutes on an elliptical machine on high. I was not overweight but sort of on the thin side and I did not smoke.

They call my disease nonischemic cardiomyopathy. This means there is no apparent cause. They say they think a virus attached my heart. But they don't really know.

They put me on Coreg, Digoxin, Lasix, Spironolact, and Lisinopril. I also had to change doctors to find a heart failure specialist. Now I have two cardiologists, one for Heart Failure and one for my bi-ventricular pacemaker / defibrillator.

To make a long story short, three years later, some days I can function okay, and can tolerate working. I have some days where I actually feel pretty good.

There is new technology coming to help us, like the stem cell research being done in trials to help repair the heart muscle. Technology is our friend.

I plan to try to publish some others stories here eventually. Perhaps anonymously. They deserve their privacy, but I don't want this to be all about me, although some of that can’t be avoided. I do want it to be representative of all those who suffer with CHF.

My best to you and yours,

David

Monday Morning

2007-07-16T05:04:00.000-07:00

July 16, 2007

This is the first post of this blog. I hope to be able to communicate a bit what living with heart failure is like. There are many articles and publications on cancer, alzheimers, diabetes, and a number of other chronic diseases, but this is an attempt to communicate for those who suffer every day with heart failure.

The fact that my heart failure was not caused by a heart attack does put me in a minority category and there is not as much research on this version as others, so that makes this journey even more interesting.

Anyway, this is not meant to be morbid, I am a very lucky man. I have two wonderful children who and doing well, good friends, and a really wonderful and supportive lady friend.

Later this week, we will start with some daily experiences. My best to you and yours.