Four months after transplant and things are going well

Life changed for me last June 8th.  I received a new heart from a selfless donor, and for that I am humbled and forever grateful.

After 38 months plus with a left ventricular assist device keeping me bionically alive, I'm able to live without mechanical support.  The things we take for granted amaze me.

Driving home to Fargo from Minneapolis, I became aware of how many shades of green there are.  I had a different outlook.  No longer were the fields and woodsy areas just fields and woods.  

Perspective and attitude are changeable, if you want them to be.  You're only limited by your imagination.  If you can dream it, you can achieve it.

There have been (and likely will continue to be) rough patches particularly in negotiating the balancing of the medications that keep my body from attacking and rejecting my new heart.  I accept the challenge and am moving on.  Acceptance is the key.  Sometimes you get stuck on something.  There are bad days but fortunately there are many more good days.

I began cardiac rehabilitation last week and feel much better for the exercise.  It has taken these several months since receiving my new heart to feel well enough to launch into an exercise program.  It is relatively slow going and controlled.

I learned the other day that the pneumonia I had may have come from a fungus carried in the cells of the donor heart.  Fortunately, I'm being treated for the fungal condition and the cardio team says it will be resolved favorably.

Don't forget to check out becoming an organ and tissue donor.  Go to www.organdonor.gov

Five months after transplant: situation report

Returned home from my regularly scheduled Minneapolis clinic appointment and lab tests. All went well. I was relieved of having to wear a hospital procedure mask as it's been almost five months since transplant. 

An organ recipient's immune system is suppressed significantly to allow the new organ to survive in a body that only knows it is dealing with a foreign invader.  If only the immune system could communicate and use reason, right?

Meanwhile, a friend with an LVAD has developed a driveline infection, for which he is being treated with a course of anti-biotics.  His transplant team has listed him as 1-A and will be preparing him to receive a heart transplant using chemo therapy to reduce anti-bodies in his system. He's been on the list for a couple of years. 

Once his driveline infection is stabilized (not cured) he will likely continue on anti-biotics and undergo the chemo therapy as a hospital patient until a suitable donor heart is found. 

All LVADs acquire anti-bodies because of the pump.  This can make a donor-donee match harder because tissue samples need to be taken from the donor heart to make the match work. It lengthens the process and could result in not being able to find a suitable donor heart, depending on a series of other factors like blood type.

But once a driveline infection erupts, things go mostly downhill.  The rate of decline for a HeartMate II owner varies but the infection can only be stopped by either a new LVAD or a transplant operation. 

My LVAD showed signs of clotting and I acquired a driveline infection last fall. The clotting symptoms occurred at about the 30 month mark after implant.  The clotting occurred at about the 36th month mark after implant.

I was told that I might need a new pump.  But the transplant team at the U of Minnesota took a more conservative approach because of the danger of anti-body build up with the blood transfusions that usually accompany the implant of a second LVAD. I got no replacement pump and no transfusions, but that led to receiving a new heart.

The doctors got me stable in late May and I returned home.  A few days passed and on June 8, I got the call that a suitable donor heart had been found.

Meanwhile, I'm living each day as fully as I can.  Energy level is increasing day by day.  Strength is returning as well.  I hear the strains of the theme from the John Travolta movie bouncing around in my head "Stayin' Alive."

Continue to March: the best alternative for a new heart recipient

SITUATION REPORT:  I've been at the University of Minnesota Hospital, University of Minnesota Medical Center at Fairview off and on since January.  Until June 8, all in and outpatient visits were related to my HeartMate II, left ventricular assist device--a heart pump.  

Since June 8, when I received the fantastic, magnanimous life saving, life changing gift of a new heart, I have been going down an "unimproved road" and have hit a few bumps and washouts. 

The cardiology teams that follow me all consult and share their vast experience in solving emerging issues.  Heart transplant medical practice is more complex than I was ever aware.  A further wrinkle is that home is in Fargo, ND, some 250 miles from post-transplant care.

The most recent challenge for this heart transplant patient has been  the scientific pursuit of what was causing the fever and coughing.  The  doctors cultured every conceivable bodily fluid. After a number of days, the conclusion was that I had a fungus spore borne pneumonia.  The process of regulating and managing medications has been called titration.  Today the lab results showed that I was stable enough and in good enough medical condition to be discharged from the hospital, or stir in Cagney's lingo. 

I have come to believe that the best part of being discharged is being able to wave at the hospital in the rear view mirror:  Until next time.

If you are going through hell, keep going. --Winston Churchill

The cardio team at UMMC concluded that I have no infection causing gastric issues so the culprit is likely the anti-rejection meds. But I only lasted one day out of the hospital before returning for "close observation," electrolyte level check, and general blood panels to check organ functions.  But the anti-rejection meds need constant monitoring and adjusting.  The other issue under scrutiny is a nagging and persistent cough.

One of my fellow heart transplant friends told me it took eight months for him to feel relatively normal.  He was plagued by all of my complaints and then some.

Those medications are at the core of keeping my new heart but they often wreak havoc on the gut.  I suspect it is like riding a camel with attendant ups and downs and all arounds.

At any rate, I lasted a day out of the hospital and then returned for observation because the gastric issues seem to be getting more severe.  It only feels like going through hell.  The docs say it will take time to resolve and to hang in there.

Small price to pay for a new heart, right?  I am adamant that I will keep going. I'm not at the end of my rope but I've secured it to my wrist, and am holding on, so I won't fall if I do reach the end of my rope.

The cardio team and consultants have been trying to learn what my lung ailment might be.  Some form of pneumonia is likely and it could have been caused by inhaling fungus spores.  With a suppressed immune system, many things are possible.

On the organ donor front, did you know that up to 60 persons can be helped by an organ donation from one donor?

Age is no issue for a prospective donor, but a donor must be registered.  The oldest donor on record was 92.  Even, I can be a donor, new heart and all.

Have the conversation with your family now.  Don't wait. Your selfless gift will change lives. 

The First Year After Transplant: Working Out the Bugs

The Cardio team at the University of Minnesota doesn't take nights or weekends off.  That is good for us heart transplant patients.  The team has handled all manner of complex problems, which are, of course, individually based.  One size does not fit all.

With just three months since transplant, I have had some rejection of the new heart, and spent last week in the hospital addressing it.  Once that hurdle was overcome,  it was back to Fargo for a few days, and on to the next hurdle.

This week it was dehydration based on unremitting diarrhea.  The question is whether the condition is based on an infection or is in response to anti-rejection medications.  Those meds suppress my immune system and my white blood count, which can allow infections to develop. Without a suppressed immune system, my new heart would be toast.

The infection angle is being explored.  The drug response will be addressed after the infection angle is resolved.

The Cardio team has managed these and other conditions successfully.  Management of the new heart transplant patient is as much a critical phase in the process as the transplantation of  the new organ. 

For me and my family this is all uncharted territory.  Guidance from the physicians helps with perspective. They don't have all the answers but finding answers is what they are all about. 

Meanwhile, anxiety can and does run high because there are no definite answers now.

I know I am not the only one who has faced these issues.  While the issues are a concern, they are being addressed and I have confidence they will be overcome.  It just takes time and patience. 

Easier said than done, particularly for those in the throes of what seems like chaos.  But I'm grateful for what I have.  Few get a second chance at life. Organ donors make all the difference.

Remember, you can become an organ donor with just a mouse click.  Go to www.donatelife.org.

There is nothing more exhilarating than to be shot at without result.-- Winston Churchill

Twelve weeks downrange from the transplant operation, June 8, 2013.  Despite some setbacks, things are progressing well. The HeartMate II, left ventricular assist device, was my 24/7 life support for 38 months and served me well, but having a heart transplant was and is the ultimate solution for end stage congestive heart failure.  I am one fortunate fellow.

Rejection speed bump encountered and passed.  No one knows what the future will bring: the key is to live in the moment.  Easier said than done, when you don't feel well and are in uncharted territory.  I keep telling myself that the only easy day was yesterday.  It has become a kind of mantra, quietly repeated, but it helps.

Hence the Churchill quote in the working title of this post.

I've had a week off from hospital duty but go back again Tuesday for another right heart biopsy to check the rejection factor.  Even though all heart transplant patients take a number of anti-rejection drugs, the body's immune system can still rear it's head and cause havoc with the new organ.

Meanwhile, I've applied to LifeSource, the organ transplant procurement agent put in place by the federal government, to be a volunteer speaker to high school students and others encouraging them to be organ donors.

Many balk at the notion of sharing their organs and tissues. But without donors there would be no transplant programs. It is not that you are sharing an organ or tissue with a stranger but that part of you continues on and selflessly supports a life in one who truly needed it.  What a gift.  

Being a donor is courageous, in my view.

Be a donor. Visit: http://www.thenationalnetworkoforgandonors.org

You've gotta have heart, all you really need is heart

I learned that my new heart was showing the first signs of rejection this week but all is not lost. Not by a longshot.  These things happen and more frequently than not are a new heart speed bump.

I traveled Monday last to the U of MN for what I thought was a routine biopsy of the new heart.  There have been about 10 of those biopsies through the right Jugular vein so far and each was negative for rejection.  

That changed Monday afternoon when my transplant coordinator called as I traveled back to Fargo (actually more than halfway home). After a minute's hesitation, I returned to Minneapolis.

It developed that my new heart was being attacked by my body's immune system but it apparently wasn't something to be too concerned about, because the cardio team caught it early.  The counter attack by the docs involves a three day course of heavier doses of anti-rejection drugs and close monitoring of vital signs.  So I'm back in the U of MN hospital for observation and care.

Looks like a week long stay.

The strains of "Heart" from the musical Damn Yankees have been running around in my head: 

You've gotta have heart 
All you really need is heart
When the odds are sayin' you'll never win
That's when the grin should start
You've gotta have hope
Mustn't sit around and mope,
Nothin's half as bad as it may appear
Wait'll next year and hope
When your luck is battin' zero
Get your chin up off the floor
Mister you can be a hero
You can open any for, there's nothin' to it but to do it
You've gotta have heart
Miles 'n miles n' miles of heart
Oh, it's fine to be a genius of course 
But keep that old horse
Before the cart
First you've gotta have heart

I particularly like the line "when the odds are sayin' you'll never win/ that's when the grin should start..."

Grinning is good.