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.

Grateful for the gift of existence

December 31, 2011

Since is is News Years Eve, I thought it appropriate to look back on the year and look forward to 2012.

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

During the first months of 2011 I felt as bad as any time since I was diagnosed, and I regret to say It discouraged me. I feel better than that now, and I am grateful.

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

I lost my mother 4 years ago and my father last year, and we lost my sister Susan's husband in November to Pancreatic Cancer. He was only 70 years old and my sister did well, but the funeral was hard.

My sister Carol and I held my sister Susan by the arms and helped her to stay upright while she sobbed uncontrollably during parts of the funeral.

On December 23^rd of this year, we had to put my big orange tabby male down because of oral cancer. I held him and whispered in his ear, “I love you Tarantino”, over and over while the doctor did what she must.

Then I brought him home and buried him in my back yard. My sweet wife Lonni had dug the hole for me because I am so puny because of the Heart Failure.

So upon reflection with my wife, in the five years we have known each other, 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 has been tough on her as well.

I had my other hip replaced in the fall, and I am happy to report the experience was far easier than the first hip replacement. It is no picnic, mind you, but now I am walking almost normally and it seems a miracle. I have had this issue with arthritis since 2004.

Looking into 2012, I may be facing a pacemaker replacement, but we will cross that bridge when we come to it.

I am grateful right now to exist after dealing with this disease for so long, and I wish you all the the very best of health and a very happy life.

Happy New Year to you all.

Results of my Echocardiagram

Sorry about not posting the results of my recent echocardiogram. Things got very busy as my sister’s husband passed after fighting pancreatic cancer for a year.  He was only 70 years old and it was very hard on my sister.

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

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

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

My Medications as of November 1, 2011

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

Heart Conditions, etc.:

- Third Degree (Complete) Heart Block diagnosed Feb. 6, 2003 – Pacemaker dependant
- Non-ischemic Cardiomyopathy - diagnosed July 16, 2004

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

- BNP current is 194 June 2009

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

Medicines as 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