My Platform NMO Rare Disease

Friday, March 28, 2014

Chicago Post Tranplant Appointments

One Year Post Transplant Flu Appointment

Preparing for the follow up appointment this time seemingly was more daunting than the actual appointments.  I try and have most of the tests the transplant team requires done locally which eliminates at least one day of doctors poking and this and that while I’m there.  I am so thankful for the health care professionals here doing whatever it takes to get me what I need to bring.  As a matter of fact the MRI’s were completed in enough of time for me to mail in time for Dr. Burt to review before my appointment.  It is a blessing, to have a clear picture of how the lesions look and be able to discuss the next step with us at the follow up appointments. 

We left early Tuesday morning for Chicago for what we thought was going to be a long     grueling three days of “hurry up and wait”, or miles of walking from one Pavillion (that’s what each section/clinic is called at Northwestern Memorial) to the other, (and after a while they all start to look the same so you walk more than you have to b/c you are lost) but to my surprise quite the contrary. We went straight to the laboratory for labs, from the airport orders were in the system already, things were really going smooth.  I was so glad to see Gypsy the initial lab tech that did all the preliminary labs before the transplant you can imagine how relieved I was knowing she was going to draw my labs (she loves the Lord).   We (Joshua, Dee because it was Spring Break, and I) had enough of time to get lunch and sign in early for the first appointment, at the eye clinic.  Of course there was a bunch of paperwork to fill out (let me just do a shout out to the fingers … glory my writing is really good when you can read what I’ve written) took me a little while but I did it all before they called me in to see Dr. Melan.  He is the Ophthalmologist that took care of me after the transplant; however I did not see him at the six month follow up.  After the visual field, eye pressure check and dilation (dark eyes take forever to dilate) he said that I’ve lost more vision in my right eye (the eye that lost central vision during the first exacerbation) but as with NMO there is no explanation.  He said outside of the optic nerve damage the eye is healthy.  He also said that the vision is so bad I wouldn’t notice losing more vision in that eye unless isolated for testing.  My left eye on the other hand is stable and I am grateful to be able to see.  He recommended that I am followed by a local Ophthalmologist, and return in one year.  It was 6:00 we checked into the hotel (not the one we usually stay in) but it was fine to shower and sleep, and that is exactly what we needed after traveling and appointments.

Day two began with Dr. Balavanov the Neurologist of the team, his practice is not a part of Northwestern Memorial Hospital system, so we head across town to Rush University.  After another boat load of paperwork he called us in for the appointment.  Dr. Balavanov treats patients with MS and other Neurological diseases including NMO.  He was very impressed with the results so far.  He told me that his opinion is that I will continue to improve up to two years, the lesions will heal but to what extent the scars will have is unknown.  He did a very thorough examination including me doing some crazy moves which tickled Dee, we were all excited that I did them all without falling or holding on to anything.  He noticed right off that my balance was better and that I walk with confidence that I am not going to fall.  We discussed tone, and spasticity and how the two are the primary reason my walking isn’t better but I’m not discourage, rather remain hopeful.  He prescribed a new medication called “the walking pill” but wanted me to take it in the compounded form.  Insurance is still an issue until the positive numbers reach FDA regulation. As soon as the pharmacy in Chicago has it they will mail it to me.  In the meantime I’ve contacted a local pharmacy and they are able to make the prescription.  It was close to 2 p.m. so we had lunch and headed over to see the Transplant team. 

We signed in and of course more papers to fill out.  The nurse passed right by me but I didn’t know she was looking for me until she walked back and called my name.  I got up to follow her back she said she did not recognize me.   She did vital signs and then Dr. Burt came in.  He said he was amazed to see how well I looked.  He said he couldn’t be much happier (by the way he is a believer) with what is happening.  He read in his notes from August that he thought I looked well, but he did not know how much more I would improve, this exceeded what he expected because of the severity of the exacerbations.  Overall I looked so normal he said.  Hearing that was music to my ears, because I see the stares and all I want is to be “normal”.  After his examination he agreed with the other doctors that I should continue my journey.  The most important thing he said to me (as far as I’m concerned) is that (1) there is going to be permanent damage how much, and what will be the extent no one knows but we are not at that point now.  (2)I am no different from anyone else life gives no guarantees we have to trust the Giver of life and live until we die. (3) There are NO new lesions or evidence of new disease, and (4) the NMO titer test is negative and all of that is good news.  He talked to me about some other important factors (eat well, drink plenty of water, and to be sure to get enough of rest) that we all would benefit from if we did them, but that is another post I will share another time.

There you have it, Glory to God great things HE continues to do in my life!!