BLACK FRIDAY ... and a Right Heart Catheterization

At 9:30am, this morning, the day after Thanksgiving, BLACK FRIDAY, the Mayo Clinic called us.  The insurance approval had finally come in (2 weeks!) We were scheduled for check in and labs at 1pm and the procedure at 2pm.  Carol, one of our transplant nurses, said to come prepared to stay the night ...just in case.  Our reaction: really?  OK.  We really didn't think we would need to but we took along the necessary items and left them in the trunk of the car.

The Right Heart Cath:  a lead is inserted into a vein in the neck that sits right above the artery.  It's threaded down into the right heart chamber to measure pressures and fluid and I'm sure some other things as well.

After the procedure, the doctor came to tell us that Lee would be staying several nights in the hospital.  There was fluid on his heart and his pressures were not good.  This, along with Lee's increasing fatigue, cough, and changing blood chemistry was enough for the transplant doctors to order the IV Milrinone protocol (see previous post for further details).  

Too MANY tubes & wire!

That big yellow curved thing is the catheter in his neck to his heart.

Sometime in the next day or two, a PICC line will be placed in Lee's arm from which he will receive a constant infusion of Milrinone.  At this point in time, we're not exactly sure what that looks like but we do know that he will come home with it.  It will be an on-going, semi-permanent (until he gets a new heart or another invasive therapy) therapy.  Because of his health deterioration and the PICC line being placed, Lee is being moved to status 1B (see post "The List" for what this means).  We'll update with more information as we get and understand it.

For now, we ask for your prayers for peace, calmness, and for this therapy to work until a donor heart is available.  We also ask that you pray for the future donor and that donor's family.  It is a hard, difficult, heart wrenching thing to wait in anticipation of a heart and new life for Lee, knowing the grief that it will bring to others. 

Colossians 3:15 (NAS) And let the peace of Christ rule in your hearts, to which indeed you were called in one body; and be thankful.

VA Appointment & Mayo Clinic

Last Friday, we had an appointment with Cardiology at the VA.  Besides an EKG and blood work, he also had his ICD "interrogated".  That always sounds scary to me, but it simply means that a technician specializing in reading pacemakers and defibrillators places a device over Lee's ICD unit, runs some testing, and reads the results.  The ICD unit keeps track of everything that's been happening to Lee's heart since the last interrogation.  It's pretty cool!  It can read when there was a fluid overload, if there have been any arrhythmia, tachycardia, or incidents of the defibrillator charging up.  It noted the extreme fluid build up in August and September.

The rest of the appointment involved reviewing what had happened over the summer, the hospitalization at the Mayo Clinic, reviewing Lee's medications, the current labs, a physical exam, and finally a discussion about how Lee is feeling. We left with a copy of labs and reports to send to the Mayo Clinic for their review and input.

The first couple of weeks after the September hospitalization, Lee was feeling pretty good and was walking for exercise with a fair amount of ease.  His goal is to walk about a mile round trip, which he can increase as his body allows.  With CHF (congestive heart failure), breathing can become labored, making it difficult to exert oneself.  Part of Lee's daily (doctor ordered) routine is to weigh himself every day. If he is up more than two pounds, he needs to increase his diuretic (Lasix) that day.  This is extremely important to keep his heart from holding onto excess fluid. A low sodium diet is also par for the course.  Lee has been very, very faithful to this regimen (Praise the Lord!). 

The Mayo:

Today, Monday, November 18th, one of our Heart Transplant Team nurses called to review everything with us.  Some of Lee's labs indicate some changes and she wanted to know how Lee was feeling.  Here's what we told her:  he has not been feeling well; his coughing has increased; he is becoming more and more easily fatigued; each time he eats a meal, whether large or small, he must lay down and sleep for an hour or two (Lee calls this "processing the food").  Medically this is another symptom of advancing heart failure.  With CHF, blood flow is weak.  Digestion takes a lot of blood.  When the blood is diverted to digestion, the other organs (heart, brain, kidneys, etc) are shorted, causing fatigue.

Heather (our transplant nurse) reviewed the labs, tests and physical symptoms with the Mayo Clinic doctor.  The decision was made that a "Right Heart Catheterization" needed to be performed.  Our Medicare Advantage insurance required pre-authorization for this procedure, so we wait ... AND wait ....  aaaaand wait ...

Romans 5:3 "... but we also exhult in our tribulations, knowing that tribulations bring about perseverance."