The past few days have been interesting as the early strength and symptom improvement I experienced upon my return to NY has been followed by a few days where I feel like I did mid week last before my discharge from the hospital.
On Monday and Tuesday of this week I received 1G of IV Solumedrol each day to attempt to "cool" the L'hermitte's I was experiencing last weekend. This was very effective and today is the second day without any symptoms. The steroids created huge fluctuations in my blood counts which have made me extremely tired and weak. For the past two nights I have had ridiculous night sweats and my bladder is waking me every 2 hours like clock work. These same symptoms dominated most of my inpatient admission so I can assume my WBC is back down to a low level as it was while inpatient. One big positive difference is I have not had fever like last week so I'm able to walk around the house.
I'm resting all day today and this weekend. The truth is it's not hard to do as my energy is very low and my legs are very weak and stiff. I have lost so much muscle through this process. The weather is perfect and although I wish I were on the golf course or tennis court, resting in our yard with a cool breeze is not terrible.
Although I looked forward to a significant reduction in medications post transplant, this is not the case. For the next 12 months I need to take Acyclovir, Fluconazole and Bactrim because of my suppressed immunity in addition to the Baclofen, Pristiq, Detrol and Ampyra which treat symptoms of the MS. I think that's more pills than my 75 year old mother! The combination of all of these medications has me in a somewhat foggy state and a bad taste in my mouth always but I'm hopeful these will subside in the near future.
Great weekend to all!! NY will be sunny and warm :)) I need to get a little color on this body and head to stop scaring the neighborhood kids!
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