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."

Tuesday, April 29, 2014

Prayers are answered. PTL!

This is life on the Heart Transplant Waiting List.  We have our ups, our downs, our winding paths of uncertainties.  Today, Lee was scheduled for a right heart catheterization to measure the pressures inside his heart.  The procedure is not without risk and we were told to expect to spend at least one night in the hospital & very possibly much longer.

Because of the prayers of many, the procedure went flawlessly, and with the best result we could ask for.  The doctor said his pressures are "not good,"  have worsened since the last cath (in December) but are still in the "ok to go home" range.  Lee and Guido (see 12/04/2013 post) are still together and will stay on milrinone for now. Lee is feeling fairly well, just very tired. 

Thank you all so much for your thoughts, texts, emails, cards, calls, visits, love, and most all, prayers.  They mean so very much to us.  Please continue to pray for us, and for a new heart for Lee soon.

Praise the name of the Lord; for His name alone is excellent. Psalm 148:13

Wednesday, April 23, 2014

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.


Tuesday, April 8, 2014

Lee is back on The List!!

Lee is back on the Heart Transplant Waiting List, as a 1b.

On Friday, we made a run up to the Mayo Clinic to have blood drawn to be cultured for infection.  That's a little different from the normal labs Lee has drawn.  The blood is drawn from both arms (2 vials each) very slowly.  Lee says the bottles they put the blood into look like tabasco bottles.  As of this afternoon (96 hours later) there is NO sign of any bacteria/infection in his blood.  Praise the Lord!

Lee is feeling much better and is even getting out to walk a little.  For now, we will be going to the Mayo every 2 weeks, as he has been on the Milrinone 4 months now and needs close monitoring.  Our prayer is that a heart for Lee will come soon.  Waiting is hard, but we are continually thankful for family and friends who encourages us, check in on us, call, text, and email us.  It does help to keep the spirits up.

We had a nice visit from Lee's brother, Mark last week.  The visit had been planned for a couple of months and we were really glad Lee had gotten out of the hospital so he was able to really enjoy the time with Mark.  The timing was perfect, as Lee had just infused his last dose of the IV antibiotic when Mark arrived.  They had a "guys day" and drove down to Casa Grande to hang out with Seth.  It was too short a visit, but we'll take it and cherish it and look forward to the next visit.

On Sunday, my cousin Carole and her husband, Stan stopped by for brunch.  They had wintered over in Mesa (about an hour east from us) and were heading north to British Columbia.  We jammed a lot of fun & laughter into that short visit!

This week's task is to get some bids on new air conditioning units.  What FUN that will be, eh?  The days are heating up and our a/c unit is winding down, so we'll be looking to replace it soon.



Matthew 11:28 Come to me, all you who are weary and burdened, and I will give you rest.