Feeling Grumpy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.