Going to a Neurophysiologist

My wife has finally convinced me to go to a Neurophysiologist for my legs.  

Since my heart failure diagnosis in the summer of 2004, my legs have bothered me a great deal.  Of course I lost lean mass all over, but my legs lost more than the rest of my body.

Then I started having issues when I lie down or put my feet up.  My top of my thighs ache and on bad days they ache so much they burn.  It seems to just be the top of my thighs.  

My wife went with me when I went to my heart failure specialist recently and she brought this up with him.  My doctor said he had not heard of this for heart failure so it must be something else.  We discussed that it could be a circulatory issue or a nerve issue.  

Since my oxygen runs at 98% when they check it, they concluded I should go to a Neurophysiologist.

So I have an appointment for December 4 for a consultation.  I don't expect to get the answer that day, but we will wait and see.

Back to my Heart Failure Doctor yesterday

I had an appointment with my heart failure specialist yesterday.  I moved up my planned December appointment because I have been doing badly and my wife was worried.  The last appointment was May 3 of this year when he told me that I was “optimally treated” and that this was as good as it gets.

That was a heart breaking thing to hear so I did not blog on it as most of my blogs are depressing, for which I apologize.   I will try to start blogging when I am doing well, moving forward. 

Anyway this time the echo I had earlier this week showed a slight improvement in my ejection fraction, up to 35% from the previous 30% it has been for a couple of years now.  So at the cognitive level, that of course is a good thing and perhaps because I have been more diligent in taking my evening meds.  I have an alarm on my phone, but as I get into the evening, it seems I am less diligent so I started taking them at 6 PM instead of 8 PM. 

The thing is, I feel terrible all the time.  My long standing leg pain has gotten worse, it seems, so I am having trouble understanding this.

It seems the people on the Yahoo Heart Failure list I am on are doing awful and I feel so badly for them.

So I have been thinking lately that it comes down to the fight is what is important, something I told myself when I got this disease when I vowed to fight this and die well so my children would see a good example for a change instead of all the bad ones I have set over the years.

Nest time I will try to blog hopeful stuff.

Going to my Heart Failure Doctor Today

I have an appointment with my heart failure specialist today and it is causing me to think back and look forward.  The last appointment was on August 4, 2011, which is the longest I have gone between appointments since I was diagnosed in July of 2004. 

I am very grateful to be alive for these past ten years since I flat-lined on the table getting my first pacemaker due to three degree heart block in February of 2003.  

I have seen my son graduate from high school, college, and get married.  I have also  been able to be there for my daughter through her many hospitalizations for bi-polar and to see her finally get stable these last two years.  I met and married my wife at my advanced age because I still had the gift of existence.

Nonetheless, since the terrible ordeal in 2008 when the surgeon broke my left ventricle pacemaker lead while replacing a recalled pacemaker, coping with life has been even worse.  The result of that mistake was a few weeks later the dyssynchrony  this caused in my heart beat resulted in  my heart going into ventricular tachycardia and causing my ICD to fire.  This actually occurred 4 times before I was schedule to get the lead replaced.

When I went into tachycardia, I fell down where I was, passed out, and then felt the ICD fire like a punch to the chest.  One of the times I was walking down the street and just passed out and fell into some poor shopkeeper’s door, frightening her and her customers.  I apologized profusely once the ICD fired and I came back to consciousness and my wife helped me walk the rest of the way back to the apartment we were staying in at the time.  It was mostly painless, as I just lost all consciousness immediately.

They eventually did replace the lead but it took me a year to recover, and even then, I have never been the same since.  That year caused long term damage manifested by even more muscle loss and a change in my body chemistry.  I could not work out nearly like I had been able to before that year and travelling for business became much more difficult.

So now I am wondering why there have been no real breakthroughs after nine years of this disease.  Stem cell research was occurring in 2004 when I was diagnosed and it still seems to have made very little progress after 9 years.

I guess another part of this is I am facing a pacemaker replacement the second half of this year because my battery is wearing down.  After my last experience in 2008, you might can imagine how I feel about it.

I communicate with many other heart failure patients and most of them are just miserable, so I know I am not alone, but it seems that medicine is letting us down and focusing on other, more high profile chronic diseases.

I am grateful for the gift of existence, but sometimes I just need to vent.  Sorry If I offend.

Muscle Atrophy

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

Before my diagnosis, I worked out all of my life.  I ran 10K’s, I lifted weights, I did martial arts, 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, my legs sometimes don’t cooperate because of weakness and it feels like I may fall.  I am back on the cane because of my lack of balance.  It is really quite disconcerting 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.