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Posts Tagged ‘Life after a heart transplant’

Hi All,

How is everyone doing?

We have been enjoying life without a pacemaker, defibrillator or LVAD.  No more lightheadedness or dizziness and no more passing out on a semi-quasi regular basis.  An eight-year battle is over and hopefully no more battles are in our future for a very long time.  We can only hope…

Jim’s one-year post heart transplant journey has consisted of mostly monthly biopsies — they were more frequent in the first two months post-transplant.  He also has been gearing up back at work.

All his biopsy results have come back as ZERO REJECTION.

Now, no more biopsies unless something happens.

I still can’t believe a year has gone by.  It actually was a great year and went by pretty quickly.

The two years with the LVAD, not so much…

We have so much to be thankful for and still think of the donor family who even in their time of grief were able to be so thoughtful and giving.  They have no idea what a difference they have made in our lives.

We also owe an immense amount of gratitude to family, friends and co-workers.  Without your love and support, neither one of us would have been able to survive this…  I still get overwhelmed when I think about it.

Eight years…

We are now on the other side of the heart transplant and Jim is back to his life’s passion – his business.

Me – I’m actually having a bit of a tough time adjusting to life post-transplant.  I had a “what do I do now” crisis.  It was very strange.  I think I need to find something to be passionate about.  Any suggestions?  Going back to school was one idea…  I’m just not sure for what and wonder out loud if I am too old.

For now I’m enjoying a sense of normal – reading books and finishing some quilting UFOs (or unfinished projects).  I am planning on organizing the house and rethinking the blog’s direction.  The blog was originally supposed to be a quilting blog and the inaugural post was going to be about my trip to the Vermont Quilt Festival.  Instead, decided to cancel last minute because I just felt that Jim was not doing well.  Cancelled on Thursday and his defib hit him Saturday night and he passed out.  Glad I was home otherwise he would have been alone when that happened.  If you’re interested, you can read about that here https://welcometomyworlddotme1.wordpress.com/2012/07/04/happy-4th-of-july/

We have come full circle – I have a hotel reservation for the Vermont Quilt Festival next month…

Any other ideas that could fuel my passion or be a good direction for the blog?

While you’re mulling that over, did I ever tell you how Jim was diagnosed with his heart condition in the first place?  It was because of our cat – Spooky.

Spooky and Jim were buds.  They would greet each other every single morning in the hallway with high fives and a meow and every night he would wait at the front door for Jim to get home from work…  So sweet.

We both love all animals but have a soft spot for black cats.

Two days after Jim’s mother passed, Jim was home complaining of chest pain and “pressure” going down his left arm.  He was very sweaty too.  Classic heart attack symptoms yet he didn’t want to go to the hospital because his PCP said he was just experiencing anxiety from his mother passing and prescribed blood pressure meds.  Spooky apparently didn’t agree with that thinking, and he wouldn’t leave Jim’s side.  He kept circling and pacing around Jim while frantically and loudly meowing.

He knew something was wrong….

He followed Jim into the bathroom – butting the door open with a combination shoulder / head maneuver and when Jim went to lie down for a while, Spooky started his pacing / frantic meowing routine alongside the bed.

I asked Jim if he thought we should call an ambulance, and he indicated he was sure it was just anxiety.  Meanwhile, I am still watching Spooky who continues his pacing / meowing and suggested that we just go to the ER and get his blood pressure checked.  Since, his PCP had just prescribed the blood pressure meds, I said let’s just go see how your blood pressure is doing – it can’t hurt, I said.

I said to the woman at the ER’s Registration that my husband was having chest pains and she took one look at him and said we’ll bring him right in and worry about the paperwork later…  We were there for most of the night.  All the tests came back normal except one…

Idiopathic Dilated Cardiomyopathy

So that’s how we first learned of Jim’s heart failure.

Thank you, Spooky!  When Jim got home, Spooky was his normal self again.

First, you start out on medications and watching your sodium intake.

We would order Italian subs and Jim would just pop an extra diuretic (if it was even needed) and bounce back no problem.

Heart disease is progressive though…  Suddenly, he wasn’t bouncing back.

After a period of time, he started landing in the hospital to have fluid removed because the diuretics would get overwhelmed.

This went on for a few years.  One day while Jim was in the hospital having some fluid removed, he was talking with his Dad on his cellphone when the entire team of the Cardiomyopathy Unit at Tufts Medical Center barged in his room.  He had a vtach storm.

The doctors informed Jim it was time for a defibrillator.  They actually implanted a pacemaker / defib but not without some, oh let’s just say…  Issues..

The “leads” that are inserted into the heart somehow kept coiling up and out of the heart and they would have to do surgery to reinsert them.  The last straw was one day when Jim woke me up around 2:30 a.m. saying “I think we have a problem”.

Picture me trying to focus at 2:30 a.m. after being woken up from a sound sleep with the lights on…

Once I focused, I could see, his pec muscle is pacing like his heart should have been…

We head back at Tufts where Dr. Pham had to go in through his rib cage and basically “sew” the leads to his heart.

Now we are cooking with gas!!

Then the defib started to hit him on a bit more of a regular basis.  The team then informed us that Jim’s heart had approximately 6 months left if he didn’t get the LVAD.

A rather humbling moment.

That surgery went fine but because Jim had gone into the surgery sick, his recovery was rough.  He came out of it with a condition known as post-op delirium.  For me – it was horrible.  Jim doesn’t have too many awful memories from it (quite the contrary if you speak to him about it), but from my perspective it was just very scary to see someone you love in that condition.

So that pretty much wraps up 8 years of heart failure to a heart transplant.  It’s been quite a journey.

An eight-year battle in our ten year marriage.

I’ve been more of a caregiver than a wife…

You want to get married; you better take those vows seriously.

In sickness and in health…

See how fast the tables turned… We got married and had stupid dreams of starting a family.  Hey, I actually wanted four kids…  We were going to have to start fast because I was getting old.  Yet 8 months into the marriage, I had a diagnosis and then about a year later Jim got his diagnosis…

I tried to be a good caregiver.  It wasn’t always pretty.  There were times when I was grumpy.

Many times :)…

You also develop a sort of sixth sense.  I think even before Jim saw them I would know when something wasn’t right.  You go on alert.

Calling 911 was never pretty for me.  Those kids who get called out on the evening news for calmly calling 911– not me…

One of the strangest incidents for me during this entire 8-year ordeal was actually the last time Jim passed out – January 2014.  I did my frantic call to 911 then ran to put some clothes on and then ran to open the front door and put the porch light on then ran upstairs again to tend to Jim who was now regaining consciousness.  I followed the ambulance to Tufts as best I could – they can blow through lights.

So there we are in the ER again.  It’s our second home.  Jim is sleeping on the gurney and I’m sitting next to him watching the hustle bustle of life in the ER and the snow starting to fall faster.  Boston was bracing for a large snowstorm that day.  I was thankful that I had taken that week off from work so didn’t have to worry about that.  I remember watching him sleep and feeling the familiar pain start to creep in to my back.

ER Chair

These chairs are not comfortable.

Anyways, I was watching the snow come down and started to feel anxious because I don’t like driving in snow, let alone on the upper deck of 93North, and I started to really wonder when is this (the transplant) going to happen?  Is it going to ever happen?

Then I hear this little voice way in the back of my head say – “Anniversary”.

Ahhh OK – I go back to being anxious about driving home…

Our anniversary is May 15th.  My parent’s anniversary is May 19th and we celebrated w/them on May 19th.

We got the call on May 22nd.

CRAZY!!??

Thank you to whatever / whoever out there who helped to calm me down – appreciate it.

Now can I have the numbers for the lottery?  Just (slightly) kidding…

Like I said it was a great year (except for the month of February).  I’m glad that we broke records but that was the first time in my entire life I actually thought about leaving New England for a warmer climate.

Here are some photos / highlights:

So this is the front of our house after a day of snow blowing / shoveling.  See the avalanches – those happened after the snow blower broke…  The snow blower actually broke down twice this year.

Front of house

Speaking of breaking…  This was the second shovel to break.  NO EXCUSES!!

Broken Shovel

Here’s the view from the back of the house…

Backyard View

These are the famous ice dams that everyone was talking about…  This was the first year we had this bad a problem.

Ice Dam

Lastly, here’s Kendall having a “Holy MeWow!!” moment looking out the slider off our kitchen.  I had tried to keep the back porch clear but as you can see I gave up…

Kendall MeWow

So that’s pretty much a quick overview of the last year.  Jim is doing extremely well, and I am trying to determine what I want to do the rest of my life.

Travel!!??  Hmmmm….  That’s an idea…

Anyways, look for a new, improved (and possibly newly named) blog coming soon.

Lots of Love!!

Cheryl

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Hi All,

Hope everyone is doing well today. Wasn’t today a gorgeous day!!

I just got in a few minutes ago from visiting with Jim.

Don’t mind if I do…

Glass of Winev2

Jim had his first biopsy today to check for rejection in the heart and they said he did really well. We should have the results sometime tomorrow afternoon. They also took some “pressure” readings of the new heart while they were in there… Might as well, they said. Those came back fine.

So they did a CT scan yesterday. I asked what the results were and they indicated that there is a “tiny” pocket of fluid just at the base of his left lung. His left lung is also a bit diminished from the LVAD sitting on it – that’s typical. They decided that this pocket of fluid is so minimal that they are not going to treat it.

Great!!

Then tonight, one of the ID (Infectious Disease) doctors comes in and starts asking questions like is he out of breath at all and proceeds to tell him that she might have him do another chest x-ray because they want to make sure that “tiny” pocket of fluid isn’t the start of pneumonia.  Apparently, all of the immune-suppressing drugs he’s on will completely hide all of the symptoms of pneumonia.  Now I know it’s weighing on Jim’s mind (and mine).  I am looking for that feeling of relief. It’s been a week since transplant, and I haven’t felt that big sigh of relief yet.  Will it ever happen? I’m told it will. Probably when Jim is home and we are used to our new normal.

I met with the Pharmacist today while Jim was having his biopsy.

Holy crap!!

A lot of medications.  Not only a lot of meds, but the same meds with different doses throughout the day and meds at various times throughout the day. A big learning curve but we’ll figure it out.  We always do… She is coming back to sit down with Jim and review them with him and then before we go home she wants to make sure that we can organize a week’s worth of meds in front of her.

Great – a final exam!! I suppose it can’t be any worse than learning how to swap out the LVAD controller!!

Well, that’s it for now.

Thanks again for all the prayers, well-wishes and offers of support. We really appreciate it.

Lots of Love!!

Cheryl

PS:  Again, please excuse any typos – not proofreading…

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