- Hematology: I finally have some answers to this issue of clotting. The positive: I have no hereditary or genetic abnormalities to my blood. Meaning - I can't pass any of this to my children! THANK GOODNESS! The negative: I have a clotting disorder that is believed to be in the family of APLA (antiphospholipid antibody). This is an acquired disease state, similar to autoimmune diseases, in which the body attacks the blood vessels (both arteries and veins) making them "sticky" and highly prone to clots. Although I have tested negative (meaning ok) to the four known types that can be tested for, the hematologist is certain that my three incidences of clots in two very significant areas of the body (both lungs and brain), at this age, combined with the fact that I have clotted in both veins and arteries, fits this APLA category perfectly. He said that two of the four APLAs they can test for have just been named in the last two years. Therefore, it is only a matter of time before they identify and name my unknown APLA...."mine". Hey.....maybe I'll have a disease named after me and become famous!!! Gotta joke once in awhile! So, how do we treat it? Keep the blood very thin and tightly controlled. Also, must weigh carefully any future procedures. Fortunately, I really like this hematologist and seems to care about me. Anytime a Dr. gives you his personal cell....you feel pretty confident that you're no longer an MR number!
- Neuro/Pain Specialist: Another one of my favorite dr's! This guy shoots straight but in a very caring way. He teaches me when we meet and cares about what I think. Unfortunately, I saw no changes in my sensation with the cymbalta. So, we've tossed that medicine and have moved on to a 1 month trial of baclofen. The hope is that one of these meds will eventually calm my sensory system and start perceiving touch as good and not bad. Half way through so far....no changes yet. Keep praying please!
- I was fitted for my last custom pressure garment for my left leg/trunk. I tried an off the shelf one for the last month and it's just not working the way I need it to. I'm hopeful it will come in this week.
- Therapy News: I have made some nice progress in my recovery using an estim unit to the muscle groups of the leg that don't seem to be functioning well. It's amazing when we place these electrodes on my leg and stimulate the muscle groups, the response they illicit....which is a fairly functional gait pattern. The hope would be that with practicing walking with this neuromuscular electrical stimulation, my brain will work hard to remap and take over....lessening the need for the stimulation. If my brain doesn't cooperate, we need to find a vendor that will customize a neuroprosthetic device so that I can walk normal again!!! Anyone interested!?! I am also continuing to work hard with resistive exercise, aquatic therapy, and more. I would never be this far along without the amazing skill and brains of my awesome therapy team. I thank God every day for all the amazing therapists in my life.
That's my update for now. Sorry it's taken so long to blog. I appreciate everyone's interest and continued prayers. My prayer warriors as I call you! I continue to work hard and remain open to receiving the love and prayers so many of you have offered me. Thank you so much. Love to you all,
Kelly
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