Transplant evaluation day 3: Far from over

And this is going to be a glorious unfolding
Just you wait and see and you will be amazed
You’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfolding

~Steven Curtis Chapman

Today was another FULL day. Whew!  I started out by seeing the transplant pulmonologist, Dr. Shaver.  She is wonderful!  She is brilliant AND she has a great bedside manner.  She had some of the results of my tests.  Many things were completely normal.  However, there were a few things to discuss.

I do not have antibodies to chicken pox, even though I have had a positive titer in the past.  The varicella vaccine is a live virus and they do not want to give it to me due to my immunosuppression, but after transplant I would be even more immunosuppressed, and chicken pox could be very serious.  I also do not have antibodies to Hepatitis B, even though I have had the series of vaccines twice.  Fortunately, I was scheduled with the infectious disease doctor next.

The CT showed a nodule in my pelvis, but I have actually have that evaluated before and it is nothing of concern.  The radiologist is going to request the scans.

Finally, I have antibodies to human tissue, called HLA antibodies.  These are made when you are exposed to human tissue, such as after a blood transplant, or during a pregnancy.  Most women have some of these.  The issue for transplant is when the levels are high.  My level is 99%- in September is was 80%, but Dr. Shaver said "they found some more."  What that means is that 99% of lungs would not be a match for me.  It is not impossible to find that 1%, but they have to put you on the waitlist early, because it could take a  year or two to find a match.  This was not news I wanted to hear.  Dr. Shaver (who is also an immunologist) said there are things that can be done to find those lungs.  Part of this has to do with the lung in a box.  This is a fascinating new tool for keeping lungs viable before transplant. Click on the link and read about it!

The various specialists I have seen have already been communicating with each other.  The selection committee will meet this Friday, and I should hear about that next week.

This is the amazing Dr. Shaver.  

My next visit was with the infectious disease doctor, in a different building.  I got there a few minutes late, but he was running behind.  I was immediately stressed because the next visit in a completely different office (we had to drive) was at 11:00 am.  The fellow came in to get my history, etc. at 10:00. Dr. Larue came in about 10:20.  He is a Union grad!  He graduated with a degree in chemistry in 1998.  Some of his professors are still there.  Dr. Larue only does transplant infectious disease, and does not see anyone who is not a transplant patient    He is also very smart, obviously.  

We talked about the chicken pox and Hepatitis B issues, and also my extensive traveling.  He wants me to repeat the Hepatitis B series.  Due to my immunosuppression, he does not want to give me the live virus chicken pox vaccination, and recommended the new shingles vaccine, Shingrix.  It is not a live vaccine.  However, there is a national shortage, so I need to call and try to find it.  I also have to have a tetanus booster.  More sticks!

I did not leave there until 11:00, which was when I was supposed to be at the next appointment.  

Dr. Larue is in the center.  Sam the fellow is in the lab coat.

Meanwhile, my daughter Christy called.  She was coming in from Jackson as a secondary caregiver was required to come to the afternoon appointments.  It was sleeting and snowing in Jackson.  I called the transplant office to see if she could Face Time, but she had to be there in person.  This increased my anxiety level.

We hurried to West End for the next appointment, which was with the allergist.  We were only 15 minutes late!  I am allergic to two drugs, itraconozole (caused a rash) and azithromycin (severe reaction).  The purpose of this visit was to determine whether or not I am really allergic to them.  A fellow came in and took my history, etc.  She told me I would need to be there for three hours for the testing.  My next appointment, the one my daughter was driving through the snow for, was less than two hours away!  My anxiety increased even more.  

Dr. Phillips came in and talked with me.  The test for itraconazole allergy consists of a skin patch which has itraconazole on one end, and petroleum on the other end. I have to remove the patch on Friday, take pictures every day, and email the pictures to her.

I had to reschedule the second test, during which they will give me a tiny dose of azthromycin, and watch me for an hour.  If I am okay after an hour, they will give me a larger dose and watch me for two hours.  This test is scheduled for January.  The delay will not be a problem with the selection committee meeting.

We actually made it to the appointment with the social worker just exactly on time!  We had not had a spare minute and I was starving, so those snacks in my bag came in handy. Our daughter was slowed down by the weather, but arrived just a few minutes after 1:00.  During our meeting the social worker asked questions about our family situation, my support system, and our feelings about transplant. He asked Christy what she thought was the reason I am able to cope so well.  She said my faith, and my knowledge.  

Next there was an educational meeting with the transplant RN, Erin.  Another family was present.  Erin talked to us for almost two hours about how the transplant process works, and all the things we would be facing.  I will have to stay in Nashville (a maximum of ten minutes away) for three months.  Someone will have to be with me all the time.  

What a crazy day.  There were no tests today, but the schedule was hectic and there is quite a bit of information to process.  Christy is traveling back to Jackson in the sleet and snow, and Chelsea is driving here in the rain so she can be here for the visit with the surgeon.  I am so grateful for my daughters, who have put their lives on hold to be there for me.

The news about my HLA antibodies today caused me to pause.  In thinking about that, I realized that God is bigger than those HLA antibodies.  If he wants me to have a transplant, then those lungs in the 1% will be available. God is still writing my story!  Whatever happens, God will be glorified.  Just you wait and see- you will be amazed!