Thoughts on getting a new heart: it's a team effort

After my most recent visit to the U of MN Heart Clinic in Minneapolis last month, I came home thinking how little I know about heart transplant after care. 

I have become aware that everything that happens to the other organ systems post-transplant is interrelated. 

A heart transplant can cause a myriad of unexpected consequences.

The anti-rejection medications interact with other medications and issues arise.  The suppression of the immune system is unpredictable and you can more readily develop infections from bacteria, viruses and fungi.

The point is I don't know what I don't know. Fortunately, the cardio team finds answers.  Experience counts. And they all have the help of other transplant team consultants.

 I now have

--one principal cardiologist and a host of heart consultants (the cardio team has the final say about my care and treatment); 

--a nephrologist for my kidneys, which seem to have issues that are likely drug induced based on my regimen of the anti-rejection meds;

--an infectious disease doc, sorting out my pneumonia susceptibility; 

--a dermatologist, sorting out pre-cancerous lesions;

--an endocrinologist, helping me with steroid induced diabetes;

--an ophthalmologist, helping with drug induced eye issues,  and 

--a consulting transplant pharmacist.  

That's at least a thimble full.  There will undoubtedly be more.

Every day brings a challenge and a new issue, it seems.  No one promised fair winds and following seas.  The new heart is only the first step.  Clearly, it takes knowledge and work to maintain and to keep the gift of a new heart. 

Without the help and support of my caregiving wife, I literally would not be here. She is at once: a factotum; an advocate, ever  vigilant and an effective cross examiner of the team of doctors and nurses.  She gets answers and results.

It takes time to accept the reality of the constant vigilance and preparedness.  My next scheduled clinic follow up is later this month.

Over the drill ground (called the grinder) at Coronado, California, home of Navy SEAL training, there is a slogan on the building that fronts the drill area:  

                                The only easy day was yesterday.

The SEALs are a "mission driven" outfit.  When a SEAL team completes a mission, and survives--often in the face of death--the team faces a new day and a new mission.  The implication is that surviving yesterday guarantees no easy future.  So "the only easy day was yesterday."

The slogan takes on new meaning for me with each passing day. The saying was first used when the SEAL teams were formed during the Kennedy Administration. 

If it's good enough for them, it is more than good enough for me.

Eight months and counting: not at full throttle yet, noticing improvement

I'm not Polyannaish, but all things considered, I'm doing more and feeling better each day.  It is hard to accept that I'm eight months down range from transplant. But the calendar says so.  The good saga continues.

Dwelling on yesterday's problems, is a poor use of time, not to mention emotionally draining.  As Will Rogers once quipped,  "Don't let yesterday use up too much of today." That sums up an attitude that works.  Makes sense, but takes practice.

It's about minus 20 F. here in Detroit Lakes, Minnesota, as I survey the frozen lake tableau out the lakeside windows. It's a weekday, so the snow machines are quiet, the only evidence of them are the tracks. Being here is a significant plus.  There is no hustle and bustle.  I would not be here to experience peaceful nature in winter if not for the HeartMate II and my good fortune in receiving a transplant.

The only critters moving in this weather are the occasional rabbit, a murder of crows, and a few hawks, mostly red tailed hawks.  Whether the groundhog saw his shadow last week, is immaterial at this latitude.  There will be snow until late April at least.

I return to the U of MN next week for more tests. Kidneys are not filtering as well but no need for dialysis yet. 

Immuno-suppressive meds are still in the adjustment mode. Steroid induced diabetes is gradually moving toward the normal range. Overall, no complaints.  I continue to have swelling in the lower legs and feet.  Thigh high compression hose help. And the 10 minutes I spend wrangling them on is a little inconvenient but no bigee.

Five plus months down range from a heart transplant: Adapt and Overcome

The combination of drugs I take to stave off rejection of my new heart, particularly Prednisone, a well used steroid, are playing havoc with my blood sugar levels.  

I'm told that normal blood sugar levels are about 100 mg/dl.  Newly transplanted patients often experience higher blood sugar levels until weaned entirely from Prednisone.  My levels have ranged into the low 300s. Continual high blood sugar can interfere with the healing process.

Within the first weeks after transplant, I was administered both long acting and short acting insulin to tame the high blood sugar levels.

Then after several weeks the insulin regime ceased.  Don't worry about it, I was told.  The blood sugar levels will return to normal in  time.

Last month, the cardio team at the University of Minnesota Hospital decided that an insulin regimen.  I take the long acting variety once a day and the faster acting variety before meals.  

I carry my blood sugar monitoring kit with me in my "go bag," which also has juice, hard candy( juice and candy are needed when my blood sugar falls below 70), procedure masks, hand sanitizer etc. as part of my standard kit.  Not a heavy as the LVAD bag, but I don't leave home without it.

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

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.