Jill’s Story

Site created on July 10, 2014

I know that many of you are aware of Jill's history with heart disease and all the struggles she's been through as a result of her illness, but on the off chance that some of you don't know the background, here it is.  This is the story as I remember it - Jill would likely recall things I've forgotten or correct some of the details I'm a little fuzzy on.  But I'm pretty sure we'd agree on the main points.

The story begins in the late fall of 2002 - almost 12 years ago.  Jill was a (relatively) young, energetic woman who was active with her kids, her church, and her friends.  She was always on the go.  Then one day she started feeling under the weather - a little weaker than usual.  As the days went by the symptoms didn't go away.  She was getting more and more fatigued, and short of breath.  And she was starting to put on a little weight.  She went to her primary care physician who ordered some tests.  When the results came back she was told that she had a thyroid disorder and she was prescribed medication.  She took the meds as directed, but they didn't seem to have any effect.  After a while she returned to the doctor and said that something wasn't right - she wasn't feeling any better.  More tests were ordered, but nothing came of them.  The doc just changed her thyroid prescription.  Jill's condition continued to deteriorate.  It got to the point where she couldn't even walk up the stairs at our home any more.  She was so weak she had to crawl up.  She called the doctor's office yet again and was told to go immediately to the emergency room.  It was just after Christmas, 2002.

Fortunately there happened to be a cardiologist on duty at Thompson Hospital in Canandaigua that day, and he immediately realized that Jill was suffering from congestive heart failure.  She was admitted to the intensive care unit and told that she needed a heart transplant.  This came as a horrible shock - we couldn't believe what we were hearing.  Jill was only 45, had no history of heart failure in her family, and nothing in her lifestyle that would contribute to an increased chance of heart failure.  But there she was, lying in a hospital bed, connected to multiple tubes, facing the prospect that this might be it.

Over the next two weeks Jill's medical team struggled to save her life.  The first issue was eliminating all of the fluid that her body had retained because her heart was too weak to process it out of her body.  They started her on a regimen of diuretics which caused her to eliminate about 30 pounds in a day.  Of course this caused her body chemistry to go into a tailspin so she was administered massive doses of electrolytes.  And then while making ultrasonic measurements of her heart the docs discovered that because her heart was pumping so weakly that a large clot had formed inside one of the ventricles.  So they ordered blood thinners to break it up.  Seemingly against all odds, Jill managed to pull through and was eventually discharged to return home.  But for Jill and the rest of the family, life would never be the same.

The first change she had to adapt to was the incredible amount of medication that she now had to consume.  I couldn't imagine how anybody could manage to keep the timing and dosages straight for all of those drugs.  It seemed overwhelming.  Just making sure we didn't run out of anything was a challenge.  Then there were all the follow up appointments with her medical team.  But the big change was to her lifestyle - the damage to Jill's heart due to her heart failure was irreversible.  She would never have the strength or stamina she had before she got sick.  Even so, she was able to eventually resume a relatively normal lifestyle, to the point of being able to take a 2-week vacation to Hawaii in 2009.  Seven years after her initial diagnosis she had learned to live with her condition.

Then in 2010 one of her cardiologists recommended that she have an automatic pacemaker/defibrillator implanted in her chest.  Nothing had happened to motivate this recommendation.  Her condition hadn't changed noticeably.  He advised it based on past history with similar patients.  Thank God he did.  Within a year of having the surgery to implant the device it saved her life - for the first time.  After that it went off roughly every six months or so.  Once at home in bed, once at a stadium before our daughter-in-law's graduation, once in Sears, once in the car riding back from Ohio...  many of these resulted in a trip to the emergency room to get Jill and the device checked out.  And after most of these events Jill was directed by her doctor to refrain from driving for the next six months to reduce the risk of having a repeat episode while she was on the road.  So although the device was keeping her alive, her condition was beginning to have a more significant impact on her quality of life.

In 2012 she had a new defibrillator implanted - an advanced model with two leads instead of one.  And it was also in 2012 that for the first time Jill's cardiologist referred her case to the heart transplant team at Strong Memorial Hospital.  This was an eye-opening experience.  The decision as to whether or not a patient receives a heart transplant isn't made by a single doctor - it's made by an entire team of medical professionals consisting of cardiologists, surgeons, anesthesiologists, nurses, psychologists, social workers, and probably others.  Once Jill was referred to this team, they immediately took over management of her care.

Now on their radar, we began to meet various members of the team.  This is typical as the group begins to build a case file on each patient.  Jill also started undergoing a new series of tests to assess her suitability for a transplant.  Some of these were routine - echocardiograms, blood chemistry, pulmonary function, etc.  One of the tests, the right heart catheterization, was a little more invasive.  Until Jill had this test, we thought she would be identified as an ideal candidate for a transplant and would quickly be put "on the list."  Unfortunately the pressures measured in her right heart cath weren't sufficiently "bad" to justify making her a candidate for transplant at that time.  So although the team still monitored Jill's progress, the transplant was off the table for the time being.

So she continued her medications and endured the occasional shock, celebrating every time she passed the six-month milestone so she could drive again.  One of the longest shock-free intervals went from June 2013 to March 2014 - almost 9 months.  But then another shock came in June.  And then, at the end of June, 3 shocks in a single 3-day period, the last coming at our son's housewarming party on June 29th.  Since he lives just a few blocks away from the heart failure team at Strong Hospital, we checked her in at their emergency department.

That was two weeks ago today.  Since then Jill's case has gone before the entire transplant team and there is no longer any reason to delay her transplant.  Now it's just a question of the path we take to get her there.  Every case is different.  Jill's case is complicated by the fact that not only is her heart very weak, but she also suffers from frequent VT (ventricular tachycardia) and VFib (ventricular fibrillation).  This limits the treatments the doctors can use to sustain her while she's waiting for her donor heart.  So it's one step at a time.  As I write this Jill has a "balloon pump" inserted in her aorta to help her heart function and stabilize her key vitals while waiting for the next treatment.  We should learn more about that procedure tomorrow.  While she waits your prayers, greetings, and messages are doing so much to keep her spirits up and keep her focused on getting better.  We can't thank you enough for all you are doing to see her through this difficult process.

Newest Update

Journal entry by Joe Pow

It’s been just over a month since Jill died and until yesterday I hadn’t been back to the hospital.  I’d been meaning to go for a while.  I wanted to visit the transplant patients we got to know while Jill was there and check up on the nurses to see how they were doing. But I just couldn’t bring myself to do it – too many memories.  Anyway, I decided yesterday was the day.  With today being Thanksgiving I figured it was a good time to go back and say thanks to the people who weren’t there when we left the ICU for the last time on the night Jill passed away.  I’m glad I went (twice – had to visit both shifts…).  I had a nice reunion with several of the nurses (Angel – it sounds like I missed you by about an hour…sorry…), and I was relieved to see that the patients waiting for their new hearts are still hanging in there.  I only noticed a couple of changes.  For one, there’s no longer a need to “gown up” when entering a patient’s room - apparently they’ve gotten the acinetobacter outbreak under control, which is a good thing.  The other change since the last time I was there was the fact that at the end of this visit I was able to walk out of the unit without leaving Jill behind.

For those who weren’t able to attend any of Jill’s funeral ceremonies, I can tell you that they were beautiful, emotional, touching… and they were exactly what Jill wanted.  The turnout for the calling hours was overwhelming. The line of people who came to pay their respects wound through the church and out the sanctuary door virtually the entire time.  Apparently the church parking lot was overflowing, and it wasn’t until the last half hour or so that I was actually able to see the end of the line.  We were truly moved by the unbelievable outpouring of love and support from friends,family, and colleagues.  I’ll never forget it as long as I live.  The trip to Dayton for Jill’s burial went smoothly. When we pulled into town, before checking in at the hotel, I took the kids to Wright State University to show them the exact spot where Jill and I met on November 8, 1982.  And for dinner that night we went to Jill’s favorite pizza parlor (Marion’s on Shroyer and Patterson).  The next morning the graveside ceremony was led by the same minister who married us 30 years ago.  Again we were so moved by the number of family and friends who turned out to welcome Jill home – some of whom knew her when she was just a little girl. It really felt like she was where she belonged.

We were all back at work in Rochester the day after Jill’s burial – trying to adjust to our new “normal”. Much of my time at home is spent going through Jill’s things, trying to figure out what to do with them.  As I mentioned to an old friend who lost a spouse many years ago, there are things I know I’m going to keep, not because I’ll ever use them, but because they were important to Jill, or because I just can’t bear to part with them… like her bathrobe hanging on the back of the bathroom door.  I’m just not ready to see that door with only one robe on the hook.  So I’m leaving it there, at least for now.  And this is where I’ve received the absolute best advice since her passing: “Take your time.  Don’t do anything quickly.”  Amen to that. I don’t want to do anything I’m going to regret down the road.

While I’m pretty functional – I do get out of bed and go to work every day, and apparently the students aren’t complaining about me – several people have suggested that it might be helpful to “talk to someone.”  So at their urging I attended a bereavement group a couple of weeks ago.  I didn’t know what to expect, but I thought it might be run something like an AA meeting (not that I’ve ever needed to go to an AA meeting, mind you…).  You know, with some sort of agenda, or a topic of the day that people sit around and discuss.  Something like that.  Well maybe other groups are run that way, but not this one.  This one appeared to be completely free-form with absolutely no agenda. In fact my sense was that all of the other attendees (older women) were there looking for their next husband. Sorry Ladies.  Not interested.  So I’m not sure if I’ll be going back next time they meet.  But like I said though, even without the group I’m pretty functional, so I guess that’s good enough for now.

So that’s our update. On this Thanksgiving let me say thanks again to all of you who followed my postings during Jill’s time in the hospital. As I told so many people at Jill’s memorial services, I had selfish motives for doing the daily updates.  I did them not only so you would be able to follow Jill’s progress, but also because I knew you would respond to each one with a flood of comments of love, support, and encouragement.  You can’t imagine how much strength we drew from those comments.  So to all of you, thank you, thank you, thank you for lifting us up during those difficult months this past summer.  I owe you all more than I could ever repay.

Here’s hoping the holidays find you and your families happy and healthy.  Keep in touch...

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