Three Month Pre-transplant Follow-up

Today was my three month pre-transplant follow-up visit with the Liver Transplant team at Mayo Clinic.  It is hard to believe that it has already been three months since the initial transplant evaluation and it has been 9 months since my diagnosis.  The last three months have been very bumpy.  At the time of the initial evaluation I was feeling worse than I had since my diagnosis but still tolerable.  In the ensuing weeks my fatigue level increased and my energy level decreased to the point that I could barely work 5 – 6 hours per day and I spent the entire weekend sleeping trying to get rested enough to face the next week.  This was combined with nausea, vomiting and insomnia.  It seemed like life was getting to the point of unbearable.  I did not have the energy to exercise as I had been instructed by my doctors and while I tried to adhere to my diet without exception that was not enough to maintain my weight loss at the rate targeted by my surgeon and dietician.

In mid February we had a breakthrough of sorts.  In addition to all of the other symptoms I began having troubles with disorientation and dizziness.  We discovered that my blood pressure was not only low but very unstable.  My systolic pressure would drop by as much as 45 points when standing or 25 point when sitting compared to laying prone.  The assumed cause was sodium loss due to the large doses of diuretics.  These were stopped temporarily to allow my blood pressure to stabilize.  I also had to begin monitoring my blood pressure at home twice a day.  As my blood pressure stabilized I experience an order of magnitude increase in my energy level.  Within a week I had energy that I hadn’t experienced since mid-November.  About a week later I was restarted on my diuretics at slightly reduced doses and things have been going well. 

The frustration is that by stopping the diuretics my weight went back up.  Which everyone expected but now I had to re-lose what I had already lost twice before.  But the exercise is encouraging and I feel much better for my follow-up appointment.  While I haven’t had as much weight loss as I would like and I am a little behind the target I have still lost over 9kg since my initial evaluation which is about 20% of what I need to lose to get to my target weight for a living donor transplant.

The appointments went well.  Everyone was encouraging and pleased with my progress.  The dietician in particular was very encouraging and had more helpful tips on better refining my diet and nutrition.  The new challenge is that because they are still concerned about my low sodium level they have reduced by daily sodium intake from 2,000mg to 1,500mg (yes, they reduce the intake when you blood sodium is too low, I don’t understand no matter how many times they explain it).

My biggest disappointment was that in December we talked about officially listing me if I made significant progress on the weight and diet goals.  Everyone seemed to agree I had made significant progress and by several measures exceeded expectations.  None-the-less my Hepatologist didn’t seem to feel that she was ready to suggest listing me at this point.  The surgeon seemed to be in favor of listing but I don’t expect it will happen.

Disappointments aside, it was a good and encouraging visit.  I am please that I finally have enough energy to exercise and that everyone feels I am doing well.  I will keep working on the weight loss and we will see what happens in three months.  Hopefully there won’t be any major setbacks for a while.

It feels like a bit of celebration is in order.  I think we will go to our favorite restaurant in Rochester, Chester’s Kitchen and Bar.  On our last visit they were very accommodating of my diet and made an entree special to meet my sodium needs.  The food is fantastic and with service like that you can’t go wrong.