April 22, 2014 - another side trip on the journey

For the past month or so, Lee has not been feeling very well.  It's subtle at first.  A little less energy in the afternoon, sleeping longer in the morning, trouble focussing. My radar goes up & I begin to check his blood pressure more often, ask him more questions about how he's feeling, watching his appetite, listening when he's sleeping, waiting for him to wake up.  Two weeks ago, at the Mayo appointment, we mention that he seems to be more lethargic but at that point, we weren't sure if this is the "new normal" ("normal" changes for us on a regular basis) or perhaps just residual weakness from the bacterial infection & treatment in March. 

Shortly after the last Mayo appointment, the symptoms became a little less subtle and the routine for Lee has fallen into:  getting up from bed between 9am - 10am, eating some breakfast & reading, back to bed before noon to sleep for an hour or 2, back up and around for a few hours, another 2 hour nap in the late afternoon, then dinner and off and on dozing until bedtime.  Pretty exciting, eh?  His blood pressure has been coming down as well; averaging around 90/60.  Medication changes back in September and again in December, had brought his bp up from 82/58 to the high 90's/mid 60's.  This has been a good bp for Lee.  Yesterday, at the appointment, his bp was 82/60.  There are also subtle changes in the labs done yesterday.  It's tricky business determining when it's time for more tests and procedures.  

It's possible that the milrinone (which Lee calls "rocket fuel", quoting Dick Cheney from his book "Heart") is losing its effectiveness.  Lee says the rocket (his heart) is now re-entering the atmosphere and decay has begun.  We have to use analogies that make sense to us and have a little fun with it too.

The doctor had Lee reduce the dose of one of his heart medications (Carvedilol aka Coreg) to see if that would help reduce some of the extreme fatigue.  He had already reduced the dose earlier this year as his heart failure symptoms increased.  It's odd how the same drugs that have prolonged his life and quality of life are now contributing to his extreme fatigue.   

On Tuesday morning, Lee will have another procedure done at the Mayo.  The procedure the doctor will be doing is a "Swan-Ganz right heart cath." Swan-Ganz catheterization is the passing of a thin tube (catheter) from the vein in the neck, into the right side of the heart and the arteries leading to the lungs to monitor the heart's function, pressures, and blood flow.  We were told to expect to stay at least one night in the hospital after the procedure.

Depending on the findings,  the doctors will determine which of the following will be best for Lee: 

1) increase the milrinone doseage ( we can increase it one more level)

2) swap out milrinone for another inotrope, dobutamine (this med is sometimes better at keeping blood pressure up a little)

3) keep the "Swan" (neck catheter) in place, give both inotropes, milrinone AND dobutamine intravenously. 

The third option, will require staying in the hospital until a heart is available for Lee.  It will put him on the transplant list as 1a.  1a is the status for the most urgently needed hearts.  It's good, in that it means Lee will get a heart sooner than later.  It's hard because it means staying in the hospital until that time.  That's no fun.

 *** an update on how Lee is feeling.  He is actually feeling better this afternoon (with no nap!!)  He normally takes Carvedilol twice per day, so last night he took the lowered dose and this morning as well.  Perhaps we will be able to delay the heart cath procedure?? We know that this IS the path we will be going down, whether it is next Tuesday or next month or ... ... ...

We are steadfast in our faith in the Lord and His plan for us.  It is still a difficult journey.  Your prayers and support are coveted more than you can imagine.

Jeremiah 29:11  For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.