Friday, December 30, 2011

Medical Massage

My first massage was in a fancy spa as a treat for my daughter and I during her senior year of high school.  Then my best friend took me to a spa on my 50th birthday; that was my second massage.  I thoroughly enjoyed both of them.  Since they are expensive, those were two rare treats for me.  However, I now have a monthly appointment with a medical massage therapist. This is something that is covered by your health savings account if you are lucky enough to have one.  I highly recommend it !!  Shortly after my device was implanted, when I was still experiencing physical pain, I asked my cardiologist office if it was OK since I thought it might make me feel better.  As long as there is not a deep tissue massage, nothing magnetic, and the immediate area of your device is avoided, there is absolutely no danger.  On an emotional level, it is incredible to encounter someone not afraid that you will "break" if they touch you.  The first massage was so relaxing that now I am hooked.  My new therapist is a young single mother just starting out with no health insurance of her own.  I feel like I have made a friend for life and cannot wait until my next appointment!

Yesterday before my massage I had an appointment with the electrophysiologist (there's that fancy word again) and he said I am doing great.  My device is "pacing" about 40% of the time and the rest of the time it's just me naturally.  My next echocardiogram is in March and he is also hopeful that I will get some improved results.  That only occurs in about 25% of CRT patients, he said.  Also, I am walking more and just feeling better all the time.  I have a personal goal to lose 40# by mid-summer and am once again keeping track of calories, sodium, and fat grams.  Christmas wreaked havoc on me as I gave in to all of the goodies.  Now it's time to put away the past and head into 2012 with renewed passion!

Tuesday, December 20, 2011

Feeling Good and Tired

Obviously, my CRT/ICD is working really well because I have NO heart failure symptoms.  But (and there always is one, isn't there?) I could fall asleep at the drop of a hat.  I am certain it's the meds, but I don't walk around with a blood pressure cuff on so I can't prove that; maybe I could start a new fashion trend?  At any rate, I am taking just 1/2 of a 6.25 mg Carvedilol twice a day now.  And I'll admit that sometimes I "forget" all of my meds at least once a day (but never the whole day).  I think it's subliminal or something because I really don't want to take them at all.  The benefit of taking blood pressure lowering meds when you don't have high blood pressure is that you get plenty of rest.  The downside is that you really don't feel like exercising when you are sleepy.  More self discipline would definitely be a Christmas gift that I could give myself this year. 

Time to do a little more internet research and find out other ways to stay awake....I'm sure my family and my co-workers would appreciate that.

Thursday, December 15, 2011

Time really does heal some things...

It's now been 15 weeks since my CRT/ICD was installed.  Thanks to prayers for peace, I now sleep like a rock!  My cardiologist has cut one of my meds in half.  Tiredness still sets in occasionally, but that's what naps are for, right?  In two weeks I will see the electro....(fancy name doctor) for a check-up.  It will be interesting to see the stats from the little friend under my collarbone. 

My cardiologist is very excited (his word) to see if my ejection fraction is improving; he has scheduled another echo cardiogram for April.  In the meantime, I am trying to keep the sodium level in my food low and exercise more often.  Jazzercise has become fun again even though I am only going once a week.  I use very little weights (3#) compared to what I was using before this started (8#) but that is not a problem.  I also do low-impact but someday soon I hope to start jumping around again, clumsy nut that I am!

Thanksgiving and Christmas are extra special times this year due to the fact that I am keenly aware that I might not have been alive for them if not for the recent "God-incidences" in my life.  I plan to live the rest of my life with more passion than ever. 

If you have anyone close to you who is struggling with a recent diagnosis of heart failure, please direct them to this blog.  I would love to chat with them and encourage them.  I might even send them a picture of my healed scar so they will know it's not that scary...haha  Also, if anyone sews I would love for you to develop a pretty bra strap cover for us girls with pacemakers.  Any pressure on the scar is bothersome.  The only option right now is something really medical looking and well, let me just say it - ugly!  Something thinner, pretty, dainty, and feminine would be nice.  You get the idea..  So if any of you talented people have an idea, I would gladly link your product to this blog and perhaps you could make some $$ off your idea; wouldn't that be handy?  God bless you all and stay tuned for more updates.
Who would want to wear this?

Tuesday, December 13, 2011

A Labor Day Weekend to Remember

If I was going to have to do this, then there was no sense in putting it off. Labor Day Weekend was coming up and I scheduled the procedure (I don't call it surgery because it's really not) on a Friday and planned to go back to work on Tuesday.  In reality, though, I did not go back to work until Wednesday due to the soreness.  The electrophysiologist (another fancy word I learned this year) was kind and patient in spite of the fact that he was running about 4 hours late due to complications in an earlier procedure that morning.  I don't do well with anesthetics and learned later that I talked their heads off in the procedure room...haha.   Again, everyone at Christ Hospital was top rate and I even got to stay overnight.  Cutting the little flap that the device fits in was painless and the only real issue I had was when they had the drape a little close to my face; I am somewhat claustrophobic.  But when I asked to have it moved a little, they were quick to do so.  I have absolutely no complaints about the procedure nor the aftercare.  I also don't do well with pain medications; the only thing I can take is Tylenol 3 with codeine (oh yeah, that is some good stuff).  I was allowed to stay on that for only 5 days, though.  After that, the soreness of the incision was more apparent but nothing worse than the pain level of a normal headache really.  Sleeping was a real challenge because the device felt like a brick in my chest and so I used pillows to prop myself up on one side.

About a week later, still feeling pain, and not yet used to my little "friend" I started to wish that I had not had the procedure done.  This thing felt like an unwelcome house guest - someone you thought you wanted to spend a lot of time with but after a week they began to get on your nerves....sometimes it felt as if it was caught under my collarbone.  I was supposed to restrict lifting for 6 weeks and it was actually about 8 weeks before I could really use my left arm as normal. Frustration began to set in and I often forgot to be thankful.  All of my scoop neck and v-neck shirts were pushed to the back of the closet as I tried to hide my healing scar.  It seemed very long, red and ugly and I felt that I would never get used to seeing it in the mirror.  Some days I just wanted this thing out of me.  

Monday, December 12, 2011

Tests, tests, and more tests

After meeting with my family doctor, he sent me down the hall to Ohio Heart Health - these are the awesome folks who work in conjunction with Christ Hospital - the best hospital in Cincinnati, in my humble opinion.  Going through a battery of tests in January (yes, we met our family deductible very early this year....) it was determined that I did, indeed, have a somewhat serious problem.  Seems I have what is called "dilated cardiomyopathy".  This is the third most common cause of heart failure.  The symptoms I had been experiencing were all due to heart failure, and could potentially take my life.  As the cardiologist explained to my shocked husband and I, there would have been no "heart attack", just a complete "heart failure".  I should probably add here that I hadn't shared my symptoms with anyone else yet and my nurse friends were adamant that I do exactly what was prescribed once I told them. 

One of the tests done measured my "ejection fraction", how well your heart pumps with each beat.  A typical ejection fraction is 55-70%.  My ejection fraction was 10-15%.  Immediately I started taking a beta blocker, alpha inhibitor, and diuretic.  My enlarged heart needed the fluid around it released and my blood pressure, while not currently elevated, needed to remain low to eliminate any additional strain.  I went from taking no medication at all one day to 8 pills per day!  Within 48 hours, I felt incredibly better. 

Feeling fine and "fixed", I told my cardiologist (it sounds important when you have one you can call your "own", or maybe it just makes you sound like an old lady) that I didn't need all that medicine and I was now fine.  Hold on there, Missy, he said (not really, but I'm sure he thought it).  He gently explained to me that I would, perhaps, be on some of these medications, albeit at a lower dose than initially, for the rest of my life.  THE REST OF MY LIFE!?  ARE YOU SERIOUS!?  I DO NOT TAKE MEDICINE!!  (yes, I think I did perhaps shout a little at him; you'd have to ask my husband....)

Quite thankfully, a test called a "cardiac cath" did not show any blockages whatsoever.  So my only real problem was the cardiomyopathy.  As a side line, the day I went to Christ Hospital to have this procedure my nurse happened to be a good Christian friend - what a blessing!  Each step of the way of this ordeal God has provided just the right people to walk with me through it.  There have been humorous times too - when the original dosage of blood pressure medications was too effective, I passed out at my desk.  My coworkers came to my rescue and took care of me, all the while not 100% certain that I had not come to work drunk that day.  Actually, I was just on drugs.....prescribed at least. 

With an arsenal of drugs, my own personal blood pressure monitor, a renewed interest in walking for exercise, and prayers and support from friends and family, I felt certain this cardiomyopathy (idiopathic as it was) was outnumbered.  For those who don't know, idiopathic means there is no known reason for you to have the disease.  Alcoholics, cocaine users, and chemo patients are all susceptible to dilated cardiomyopathy and I was none of those.  Family history didn't seem likely either and so perhaps it was a virus at some time in my life that caused this.  My doctor said to focus on the treatment, not the cause.

Blood tests became a monthly event for me and I got familiar with the lab folks at my local hospital.  Two more times my ejection fraction was measured, only to find out that it had not improved.  In August I was given the unwelcome news that my best  hope was a pacemaker/defibrillator that would not only help my heart to pump efficiently, but also provide an emergency shock if my heart were to stop beating.  I was not convinced - perhaps I would think about getting this thingy when I'm older....

Heartfelt talks with my family and, of course, nurse friends, convinced me that I could not wait.  So on September 2, 2011 I had the device installed.  Cardiac resynchronization therapy is the fancy name for what my little "friend" does for me.  Next post I will share more about the procedure and recovery. 

Sunday, December 11, 2011

Symptoms that I didn't know were..

The way I have decided to blog is to begin at the beginning...
Subsequent posts will bring you up to date to my current situation.
I have never been good at anything athletic, but that has never stopped me from trying.  I love being active and prefer steps to elevators.  In the fall of 2010 I knew something was wrong with me.  Going up two flights of steps caused me pain, but not muscle pain.  I had a hard time catching my breath, but not really chest pain.  This bothered me but I attributed it to being overweight by about forty pounds and getting older.  I was also experiencing job stress and family stress and thought perhaps I was just internalizing things too much.  For the most part, I ignored the discomfort and only told my husband about it.  We didn't think it was anything to  worry about.
But things didn't go away.  By winter time, I was not only having trouble going up stairs, but I became winded just walking on flat ground.  Trying to sleep became a nuisance; I would need to prop up my head with two pillows due to the feeling of suffocation.  Still ignoring that this could actually be a physical problem, I came to the conclusion that I had a hiatal hernia; don't ask my why...  The weirdest "symptom" that I had was when I try to fall asleep and would hear what I can only describe as a "crackle" that seemed to start in my lungs and travel up my throat.  I stopped going to Jazzercise even though I had always enjoyed it because I began to come home feeling worse than before I went.  Totally exhausted and feeling old and fat, I even started feeling numbness in my left arm and hand while exercising.
You are probably asking yourself, "why didn't this woman realize the symptoms of heart failure!!???"  Well, I just didn't; OK?  I now realize how ridiculous it sounds but I truly thought I was just suffering from being overweight and getting close to 50 years old.  I was sad and depressed but didn't think there was anything I could do about it.  In early December I contemplated going to the emergency room more than once when I felt like I could not breathe.
Finally, in January I gave in and made an appointment with my general practitioner.  Describing all of my symptoms that I had written down made it seem too real - I really DID have a problem.  He immediately sent me down the hall to make an appointment with a cardiologist.

Thursday, December 8, 2011

Heart disease - seriously?

As a 49 year old mother of a young son, and a brand new grandmother, hearing the words "you are in heart failure" and "you have heart disease" and "you may eventually need a pacemaker" did not really sink in.  Surely this cardiologist was being overly cautious and pessimistic!  When he said, "idiopathic (no idea where it came from) dilated cardiomyopathy", I decided to do my own research.  Loving web searches anyway, this was my opportunity to do more with the internet than kill time.  But the more I learned, the more discouraged I became.  So many people with this disease seemed to give up on life; surely that was not the whole story.  And it isn't!  I decided then and there to start a blog as soon as I knew more about this diagnosis.  Using this media to encourage other relatively young women who hear those words, "dilated cardiomyopathy" is my main goal.  The name of the blog is a wordplay on Psalm 57:7 and Psalm 112:7.  My heart is fixed on God and God has fixed my heart.  It's been almost a year since I was diagnosed and I will tell you my story.  I hope to hear from other ladies who share this disease.  Stay tuned - I have a lot more to say!