Might as well just come out and say it plainly.  After two years and three months, I began having these symptoms.  Extreme fatigue, nausea, cough, shortness of breath, lightheaded….  Surely it couldn’t be my heart.  On May 7th, I had been to Dr. Aklog’s office and had like the best news ever; I had been discharged to yearly visits. No way was there a cardiac culprit to this mess.

My regular doc was on vacation, of course. So the PA looks at me and says “You know, you seem sort of stressed out. Stress and depression can cause neurotransmitter imbalances which can cause physical symptoms”.

[She meant depression and her intentions were good. I mean, you don't work in organ recovery without some level of stress which is why there's this thing called 'therapy'. But I like the shady backdoor description that healthcare professionals are using these days. It sure wraps it up in a nice little package.]

When I returned a week later, insisting that something was wrong, the physician reiterated the PA’s nice little speech re: depression. One would surmise anti-depressants are frequently prescribed there. I’m all in support of this…when the patient actually has depression.

So the MD performs the physical assessment with labs. Viral. No.  Gastrointestinal. No. Renal. No. Anemia. No. Labs all within normal limits.

WTH.

Hey doc, could this be cardiac? My blood pressure’s running  a bit borderline and I’m a bit tachycardic. I realize that I’m at 85 now, but my usual resting heart rate is 55 and I’m on two blood pressure meds and I’m running 138/85.  Surgery wants my systolic no greater than 110.

Nah, you’re fine, she says.

Famous last words.

When my blood pressure stayed its course and I started getting short of breath making my bed and suddenly gained about 7 pounds in a week, I called the surgeon’s office.

The visit went something like this:

Nurse: How you been?

Me: (describing symptoms)

Nurse: Any swelling in your feet?

Me: let me check (reaching down and grabbing left ankle), um, I don’t think so….

Nurse: I still see your thumbprint in your ankle

Me: crap

Nurse: Can you be back at 12:30 for an echo?

So I had the echo and my velocities are back up and with my symptoms, I’m in class II CHF. They’ve added Lasix, Potassium, and Norvasc in addition to Lisinopril and Propranolol to keep my systolic blood pressure between 100 & 110. The thought is that if it stays low, then maybe the gradient will remain steady at what it is for awhile.  If not, then I’m back in for an aortic valve replacement this time.

I’m back to blogging to share my experience with others who may be going through it also at a young age.  I hope to capture the experiences of juggling the medical management of CHF along with maintaining a social life and activism and a career.  It is possible to do it all….I think

Good night for now!

This week was Email Free Friday, the idea being to improve internal and external customer service by actually getting up and talking to people.  Because of my inability to sit still for any extended period of time, I thought I did a pretty good job of this already, but having a day where I am mandated to talk to people?  Awesome!

I needed to talk to Kirby about redesigning a sticker for a hospital.  Turns out it was helping staff to remember to call us, mostly because they are now peeling off the phones and sticking to people’s hair.  Though I found this moderately funny, this combined with the ink that is rubbing off, is leading to a re-design of these stickers.  So I traverse Cube Land and recount these experiences wtih him and provide assurance that a graphic designer won’t be needed if the printer will just stick to the template I will develop.

He says, “You’re smart, I know you can do it.”

Aww thanks.

Then says, “You’re smart, just have no common sense.”

Laughter comes from my director’s office as she says “Did you really just say that to her?”

And we’re supposed to be focusing on customer service….  See what happens when we’re forced to speak to one another?   I vote for Insult Free Friday next week. 

I’ll be out of town.

Clearly Dr. Seuss threw caution to the wind when he wrote “How the Grinch Stole Christmas”.

So in conversation, I queried about my condition (technically: subaortic stenosis with aortic regurgitation).  Apparently the condition in itself is somewhat unusual, and my presentation of this condition and when considering the extent of the repair needed…well, it would seem he doesn’t do them frequently.  The next one he is doing since April 11, 2007, is tomorrow.  Making me the only other patient who has been the recipient of said repair in the past 13 months.  It’s so infrequent he calls it “The Jennifer Procedure”.  Considering this guy does several operations a week, I find this factoid amusing.

It’s hard not to get emotional when I reflect upon what actually happened this time last year.  I mean, talk about God providing.  My surgeon has experience in pediatric heart transplant and also hates doing bypasses because “they’re boring” and prefers the challenge of fixing aortic valves versus replacing them.

However, there is such a time where success may not be celebrated.  After all, if my heart didn’t work properly, then I wouldn’t be hiking and the cities of Phoenix, Tempe and Chandler could have saved some tax dollars.

When I provided this correlation to my physician, he laughed and said “That’s twisted.  Really twisted, but I like it”.

Yeah, I do too.

Pete [Wentz, one of the greasy haired, emo girl jeans wearing 'guys' from Fall Out Boy] sings the praises of his future bride’s [Ashlee Simpson] organizational skills in People’s 100 Most Beautiful issue.

When Ashlee tells the mag how she’s become adept at packing both their bags while on the road, the Fall Out Boy boasts, “She’s kind of like a super-assistant that you can have sex with.”

Now why can’t I get a classy guy like that?!?!

Like any job, some days at work aren’t the most exciting.  But even on the most mundane of days, I hope someone’s reality was changed for the better.  I think we all long for that meaning in our lives.  At least, I hope.

So when the day is complete, I eventually realize that having any small part in this whole process is an honor and there’s not much else I’d rather do.

Here’s what kept me busy last weekend….

My friend’s a younger guy - an otherwise healthy runner, who developed what could have been a life-threatening infection in his lower extremity.  Though the hospital screwed up and it wasn’t explicitly diagnosed as such, the most reasonable theory names community acquired MRSA, a drug-resistant bacterium previously unseen outside of the hospital environment, as the culprit.

During his hospitalization, it was surreal being on the other side of a hospital bed.  The extent of my non-recreational hospital visits are usually limited to the nurse’s station.  Sometimes, things get a little crazy and I venture to a staff lounge (or two), and then there is the rare excursion to a patient’s room during the donation process.  So, sitting beside his bed, I felt overdressed and plain, considering my lack of hospital issue garments and plastic IV tubing.

Last weekend, I took him to the same emergency room where I was seen for my ankle fracture in Feb;  he even saw the same physician.  Later in the week, I shared with him that, despite the fact I am under the constant supervision of at least one specialist at any given time (most likely a cardiologist), my ankle fracture was the most challenging of it all. 

This revelation surprised him, and to be honest, I couldn’t pinpoint at the time why it was the most difficult.  Today in church it occurred to me – I had absolutely no control over that illness.

Sure, most people my age have never had a date with a sternal saw.  Heck, my 76-year-old grandmother doesn’t even see a cardiologist.  Planning that surgery last year was nerve wracking, but I was able to plan nonetheless.  I remember a late-evening conversation last year with Dr. Aklog (my heart surgeon), where he sorta scolded me saying “Jennifer, it’s never going to be a good time”.

Truth be told, congestive heart failure never comes at a convenient time, but I was fortunate to be able to set an out of office message prior to being out for six weeks.  My mom and dad were able to be here and helped me with some of the most personal of tasks.  That ankle fracture rendered me unable to do some of the simplest tasks without assistance, thus forcing me to relinquish control to, accept the help of, and reveal vulnerability to my closest friends.

Scary stuff.

Just over one year has passed from the open heart surgery and it has been just three months since the ankle incident.  The emotion and impact of these events always renders me speechless and without words adequate to describe my gratitude towards God, family, and friends for getting through that time (though my irritable mood for the past couple of days may not accurately reflect this…ha!). 

My wish is that each day presentes a new experience that previously would have gone unconquered because of physical constraints.  Even through complaints, I hope this gratitude is displayed daily in both word and deed.

Lately in the media, the topic of cellular memory (the article link is new age rubbish, but you get the point).  The ineffectual, yet far-from-ugly, Jessica Alba made both cellular memory and corneal blindness sexy when her character received the gift of sight in the movie The Eye.  The formerly blind violinist now sees dead people.  Original.

The exploitation of corneal transplant as a movie plot is frustrating, at best.  But I’m confident that undergoing such a procedure is less painful than 90 or so minutes spent watching that movie.

Today brings us this gem:  The story of a heart recipient who met and married the donor’s widow.  The plot thickens when the mechanism which creates this romance, subsequently ends it as the recipient offs himself in very much the same manner as the donor.  Insinuating, again, the concept of cellular memory. Withouth discounting the pain of the widow having lost two husbands, one should examine the constant variable in the whole tragic story.

To quote a co-worker, “I wouldn’t want to be husband #3″.

I shouldn’t criticize the media for attempts to sensationalize and, under some circumstances, romanticize organ donation through this theory. Why-oh-why can’t we simply accept it for what it is? A story with a happy ending.

But first, my employer requires the disclaimer that my inane ramblings are my beliefs and not necessarily shared by my company.  Well, except for the registration and donating part.  (I read this week in an SOP that we’re supposed to have that in our blogs.  I didn’t write it in black, indelible ink so it may get kicked back to me as noncompliant.  Details….)

Donation and transplantation is amazing, when you think about it.  Not only that, but it’s the right thing to do.

It’s interesting to broach the subject of donation with others and often people will cite religious objections, even though no major religion opposes donation (check for yourself). 

Some are fearful of not receiving proper medical care in emergent situations.  Illegal immigrants clearly don’t share this irrational fear (it’s true – visit any emergency room on a Friday or Saturday night). 

Few are concerned about open-casket funerals.  I’m, personally, confused by this one.  No one will be the wiser if you choose donation and save others.  I mean, It’s not Body Worlds.  Grieving family members aren’t taking inventory of your internal organs when you’re lying in that overpriced maple box at the wake.

If you haven’t had this conversation, suck it up and do it.  Newsflash:  You’re going to die.  I’m going to die.  We’re all going to die.  Except for Lucy Liu and Ted Williams. 

Over 98,000 people depend on your decision.   Join me in putting Morgan D’Organ out of a job;  make your decision to donate today!

Oh yeah…you know you want to!

“I am having a hard time seeing an educated, attractive man looking for an over-weight single mother (2 year old girl) who also has the joy of wearing a full face mask to bed,” one 27-year-old woman wrote.

Some things are better left unsaid.

Source:  Do you think I’m sexy? Apnea aid raises doubts