Hip Replacement Tuesday July 14th

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!