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.