Follow by Email

Tuesday, December 2, 2014

What I am thankful for

I had my 5 month biopsy today.  I think 5 months was officially a few days ago, but who cares, 5 months, wow.  I can say unequivocally what I am thankful for is my donor family and the thoughts and prayers the last 4 years I have received.  One of the NPs I saw today said once you get to about 6 months post transplant you become in maintenance mode.  That is an interesting observation because I have been in the heart failure program since 2002, and now I am not:-)    I know transplant is not a destination, it is very much a journey with many twists and turns.   But I am here thanks to the care I have received and the amazing graciousness of my donor family.

I have been thinking about reaching out, initiating contact with my donor family.  Now that I am beyond 90 days I can do so, but it is the sole discretion of the donor family to respond.  I want to tell them how sorry I am for their loss, how thankful I am for their courage in their darkest hour, and how this gift has impacted my life. 

In the past month I have been running 3.5 miles, I have been biking up to 30 miles on a bike, doing an hour on the elliptical etc.  From that standpoint I feel healthy.  I think I have grown a lot during this time as well.  Some of the things I have learner:
  1. Its ok to have expectations - we just refer to them as goals
  2. Goof-off and other commercial grade adhesive removers actually have a place in medicine
  3. This journey is both physical and emotional
    1. For those that have had time to prepare due to a lengthy disease, as I did, the first part is emotional (think of this as grieving), then physical (surgery trauma), and then emotional again.  Once the wounds heal it is easy to contemplate where you are in life and where you are going
    2. For others who have had a quick journey, a rapid descent into heart failure, the emotional tends to dominate.  Fear, why me, what does this mean........
  4. It is ok to be afraid, to be tired, to need space.  You have to be your own advocate throughout the process, to include pushing back
  5. Being a heart disease patient turns you into the family and friend cardiologist.  It is shocking how much you learn along the way.  I relate it to being a Veteran and constantly being asked my views on politics and what I think about the latest troop deployment
  6. It CAN always be worse.  I used to say this to my cycle class when I was teaching.  You never know what someone else is dealing with.  In truth I secretly though it can't be much worse for me.  Then I met another transplant patient in CA.  He had a total artificial heart (meaning he had no heart inside him and was hooked up to a backpack that wooshed all the time), he had cardiac amyloidosis (cancer), and needed a kidney transplant too.  He and I were both transplanted on the same day, July 4th.  I saw him in clinic several times afterwards but one day in particular sticks out.  He had just been into see the kidney doctor where they removed a stent from his kidney.  The shortest path to the kidney is through.............  You get the point.  He wins, that was worse!!!  And yet he was happy to be alive.
I saw a friend today at the hospital.  He and I did time together last spring for a couple of  weeks.  There was a group of us that would gather to watch the NHL playoffs in the lounge.  It was so great to see someone, albeit slightly behind me in the journey, and say "Yes, it is definitely worth it."  It was what he needed to hear and it is what I believe.

The new movie "Unbroken" is coming out.  The story is about Louis Zamperini, and he was a B24 pilot like my grandfather.  I had read the book a couple of years ago, and it is simply amazing.  He passed away on July 3rd late in the day in Los Angeles.  The headlines in the paper the next day, the day I received my heart, are about Louis Zamperini.    Every time I see the trailer it takes me back to that day.

Enough ramblings for today.  Thanks for reading this, I hope it is helpful to others out there.

Saturday, October 4, 2014

3 Months today!

It has been 3 months today, exactly.  Okay, maybe it has been 13 weeks if you count the days:-)  I feel great.  I have had 2 biopsies since I have been home and both have been 0R.  Very exciting since I had 2 straight 1Rs before I came home.  The trip through LAX with my breathing mask on, hauling a guitar and 4 bags is a distant memory.  People told me heading into my procedure that at 90 days they really started to feel good.  I can confirm that is the case.  This past week I found myself thinking I really do feel better.  I have been running 3-3.5 miles 2 times a week and doing the elliptical for 45 minutes on the other days.  Cardiac rehab was completed after 1 visit and some debate, no need I was told.  Work has been good, but exceedingly busy.  I find a get pretty tired after a full day, sometimes I step back and remind myself that it has only been 12 weeks.

Random thought of the day. Pay attention next time you go to a restaurant or a cafeteria.  Look at the food preparers and notice the gloves they wear.  I asked someone to change them this week and I got a very nasty look and the person said, "I have to wear them, it is a cleanliness rule."  My question is this......what good do the gloves do for me and the cleanliness of my food if the person touches every thing in the kitchen with those gloves on before my food.  Does it do anything other than keep their hands clean?  You think about these things when every little thing could kill you.  Just saying...............

Friday, August 29, 2014

No place like home

Hello MN.  I arrived home last night about 7 PM and was greeted by 2 hours of rush hour traffic.  Wait, I thought I left LA behind:-)  I had my final clinic appointment the day before and it went well.  I had a little rejection again, 1R, but the doctors said don't worry at all.  Totally normal.  The rest of my tests were totally normal and my cardiac function was spectacular again.  I have started running since I last posted.  My doctors told me the week before to go live my life.  Shower, swim, run, lift weights, whatever I want to do.  I started to run on the 21st and all I could muster was .5 mile.  I didn't have any expectations, or I tried not to, but I admit to feeling disappointed.  I walked a 0.25 mile and then ran a 0.25 mile.  The next day I did two 0.5 mile runs.  Two days ago I ran 1 mile without stopping twice.  I won't beat anyone any time soon, but it doesn't matter.  My legs have been very sore.  I guess I lost muscle not having run for 3.5 years, but it feels like it is coming back quickly.  I am getting stronger every day.

It feels weird being home, not having been here for the past 5 months.  At the same time it feels great.  One fun thing I did last night was throw away all my old VAD accessories.  Things like harnesses, holsters, etc. that I wont ever need again.  Didn't feel bad at all!   I can't wait to play my guitar later today, no hum or buzz from my pump ever again.

Thursday, August 7, 2014

5 Weeks later...........(Act of War by Brad Thor review)

Tomorrow makes 5 weeks.  I have one week until I reach the magic 6 week mark.  At 6 weeks my sternum is considered healed and I can start cardiac rehab and run.  I have not run since about a month before I got my LVAD.  At that point I couldn't run for 5 minutes without have to stop because I thought I was going to pass out.  Yesterday I walked 4 miles on the treadmill in 57:30.  I think it's pretty good that I am one month out and walking sub 15 minute miles.  I feel like I could run now but I don't want to risk anything at this point and jeopardize the gift I have received.  My first refill of pills came today.  The box was so big I thought someone shipped me a basketball, lol.  I had heard horror stories of  post transplant taking 70 pills a day.  So far I am taking about 15 twice a day.

I finished "Act of War" by Brad Thor last week.  True to form 5 pages in I was hooked.  I love Brad's books because they are realistic, informed, relevant, and as a veteran I relate to his views and perspectives.  I am so thankful that Brad mailed me a copy of this and I hope that he and I connect during my last three weeks here.  I highly recommend this book and anything Brad has written.  Can't wait to read the next one.

Sunday, July 27, 2014

Three weeks later

Day 23 and all is well.  I have had 3 biopsies so far and all have been ZERO rejection, or 0R.  In addition my Ejection Fraction is 70.  My doctors have told me I got a Porsche for a heart.  My cardiac output is 7.1, a normal healthy heart is 5.5.  I have been feeling better each day and am walking 2 miles on the treadmill 3-4 times per week.  The next couple of weeks are going to be intense with biopsies, an angiogram, and clinic visits.  I hope to get my ICD and pump back.  If all goes well I will be home by Labor Day weekend.  Woot Woot!

Wednesday, July 16, 2014

12 days out

Two weeks ago today I got the call.  I have been out of the hospital since last Thursday, July 10th.  This morning I walked 2 miles on the treadmill.  I don't find that particularly impressive but what I felt when I walked was.  My heart is denervated, meaning the main nerve to my heart from my brain is cut.  This happens to all transplant patients.  The effect of which is several things.  First, my sympathetic nervous system is no longer connected with my heart.  So if the smoke alarm went off in my house my heart would keep beating at the same rate.  After a few minutes my heart would catch up to my body and start to pump harder.  This impacts me when working out because I need to warm up slowly, like a cold car engine in a MN winter.  Secondly, my resting heart rate is higher than the normal persons because the vegus nerve, the one that is cut, is the brake to your heart.  I have no break now so my resting heart rate is 85-90 BPM.  At any rate, once I got warmed up I was able to turn on my music and hum along and feel stronger than I would have thought 12 days after heart transplant.  The vegus nerve regenerates less than 5% of the time, but the body adapts to things.

I have been fighting some terrible side effects of one of the drugs, cell cept.  I have lost 20 lb. in three days and have no real appetite.  Today for the first time in three days this seem to be slightly better.  When one approaches transplant a certain amount of research is done, education etc.  But until it is experienced first hand it is hard to fully understand the way you will experience things.  Brushing teeth water bottle water, constant bitter/iron taste in your mouth, diarrhea.  No complaints here, one day at a time.  But this is definitely a test.

My driveline wound is closing.  It is weird to look at my stomach and see what looks like an apple corer was taken to my stomach.  Tomorrow is another biopsy and right heart catheterization.  And I get my stitches out.

Erik Compton tee's it up tomorrow morning at the British Open, cannot wait to see he take the Claret Jug.

Strength and Honor.

Sunday, July 13, 2014

Free at Last

Good morning.  I am happy to say that I am writing from the freedom of my apartment in sunny Burbank, California.  On Wednesday July 9th I have my first major test in having a right heart catheterization and a biopsy on my new heart.  My RHC numbers were perfect and I received word on Thursday morning that I had zero rejection in my new heart.  Also Thursday morning I had another echocardiogram and the Ejection Fraction (EF) was 60, and I was discharged that afternoon.  Amazing that 1 week ago I was dying, waiting in a hospital for 75 days, and one week later I have no more heart disease and am out of the hospital.  I was told I was the 56th transplant this year at Cedars and the fastest heart transplant discharge ever, 6 days.  The past two days have been a mix of moving out of the hospital and into an apartment, doing small errands, and relaxing.  The only pain I have is in my sternum when I get up out of bed.  Other than that I have had no issues, although getting used to the meds has not been without issues, but no complaints.  I was scrubbing tape adhesive off of my yesterday and realized I can see my pulse in my ankle, pounding.  Things I had forgotten I would see/experience.

Going to watch the World Cup final today.  I have lost 8 pounds since I got out of the hospital, I suspect mostly water/fluid weight.  I had 25 units of blood products transfused during my transplant surgery and that fluid accumulates and needs to go somewhere.  Not the diet you might choose, but I will take the weight loss:-)

There is a summer transplant picnic today in Los Angeles at Veteran's park.  I had to call the transplant coordinator this morning and asked if I was going to see her at the picnic.  She was shocked that I knew anything about it and why did I think I could go?!  I forget that there are a huge rules that you need to follow and I am in between the inpatient program and outpatient program, two totally different teams.  I got to clinic tomorrow morning and I think some of the confusion will get cleared up.

So today is day 3 of my new life, and I love it.  The British Open is this week and I will be rooting mightily for Erick Compton.