Changes are coming...Part 1

I’ll be honest…I’m not really sure where to start this blog.  Which is one of the reasons it’s taken me so long to update it.  I’m not really sure where to begin and it’s going to be lengthy.  So I think I’m going to break it down in to 2 or 3 segments.  The first one I’m updating tonight and I’ll update again tomorrow afternoon/evening, I promise. 

I would first like to give you a glimpse into what’s been occurring with my health since the first of the year really.  I’ve looked back over the last few blogs since December and I’ve filled you in on what has been happening with appointments (or not happening) etc.  But I’ve never shared what it’s been like for me on a week-to-week; day -to day basis.  And I think this is the starting point to see where I’m coming from.  

I’ve seen a few of you in person over the last 3 months so I know some of you could visually “see” the difference.  Some of you could only “hear” the difference on the phone in my scratchy to non-existent voice, or through personal texts,emails, messages in response to your questions of how I was doing.  “I’m a bit tired”, “My heart has been going crazy”, “I’m exhausted”, “I’m doing ok”, “I’ve lost my voice.”

 But those simple words really tell you nothing.  The “I’m a bit tired/exhausted” don’t tell you that I was out of breath pulling on a pair of jeans, tank top & shirt that morning.  They don’t tell you that once dressed, I sat on the bed for a few minutes to catch my breath before slowly walking out to the kitchen to get my morning coffee and then sat in my rocker for my morning bible study, hoping to be able to relax before the kids woke up, so I could catch my breath and try to calm my wild heart.  

Those words can’t describe the feeling of not having the energy to make the kids their breakfast, but grateful for the energy to sit at the table and eat my own breakfast with them that morning, and then gather up their school books/supplies and get them started on school for the day.  Because pretty much since early February, I was done by 10 a.m. and back in my bedroom until lunch time around 12:30-1:00pm.  Then after lunch I'd be in my bedroom until either it was time to prepare dinner, where I'd  guide the kids on making dinner. Or I would come out after Scott would call everyone to dinner after he'd made it.  Then I'd be back in our bedroom by 8:00-for the night.

I no longer could read more than 2 pages to the kids without becoming winded.  And if I wasn’t winded, my throat was hoarse from all the coughing I was doing day & night.  Or I would break out in hacking cough constantly interrupting the story.  The sipping of water no longer worked to control the cough, so I was sucking on throat lozenges throughout the day constantly and going through 4-5 lozenges during the night.  I was maybe getting 4 hours of sleep-5 on a good night.  Which of course was adding to my exhaustion.  Physical changes were apparent to those who saw me. 

Then there was the heart itself.  When I’d tell you it was going “crazy”, what I’d really meant is that it was so different from my “normal’ racing of 110-120 beats a minute.  It would race to 120, then slow down to 60-70, then jump to 80-90 then to 120 all in a matter of less than 20 seconds.  It would skip beats (or perhaps those were just the really slow ones for me?), it would feel tight like somebody was squeezing it and then it would be wrung out like a sponge. It was doing somersaults in my chest, I swear.  My heart was doing gymnastics in my chest.

These were not new symptoms.  I’d been feeling them off & on since August.  They had decreased in September when I was prescribed some new meds to help with those symptoms, but never completely went away.  But after time, the symptoms increased.  Then they picked up frequency after the New Year.  And then they picked up intensity in late February.  There were at least 3 maybe 4 times I almost had Scott take me to the ER-the squeezing wasn’t it’s normal “squeeze, hold, release” in the matter of less than a minute.  It was “squeeze, hold…….” for up to 30+ minutes during one episode.  It was still beating of course…just felt like it was so tight and heavy.  But whenever I’d decide, Ok…I’m getting Scott and we’re going in, it would subside.  Of course these concerning symptoms began the week AFTER my 14-day heart monitor that Stanford had ordered.  

I clearly remember one morning in mid-March, it was barely 9:00 a.m. and I’d gone into the bedroom to actually lay down.  I didn’t have the energy to even prepare the kids school lessons, I was so exhausted. Scott came in and the tears were streaming down my face and I told him I wasn’t ready for the days when I’d be sleeping in bed all day.  I knew it was coming…it happened last time before the first heart transplant, and it’s been 8 months in the making…yet I still was not ready.

Ok...I'm going to stop here and I promise to post the next update tomorrow afternoon/eve.  Good night friends!

-Jill