Hi everyone,
As you all may know, I've been recovering from an intensive experimental chemo regimen to treat myasthenia gravis. I was home a week and doing "ok" when things started going bad on Tuesday.
Early Wednesday morning I went to ER with a fever and general feelings of being unwell. When they did the labs, the numbers were critically bad. They were supposed to be low as the chemo was to kill my immune system but this was WAY bad. I began bleeding spontaneously from my nose, etc and they immediately admitted me to an isolation room.
I had a horrible day of fever, which got as high as 104. I had two episodes of uncontrollable shaking chills that were so violent I thought I might break a tooth. Dh said I was pretty delirious. I was started on precautionary IV antibiotics (STRONG ONES) and they began transfusions and platelet infusions over the next 3 days. My neighbor stayed with me the first night and dh the next two. I needed someone 24/7 with me.
Finally this morning, I was sent home, out of the "critical" stage but still incredibly low and at risk. My blood cultures grew nothing, so I did not have an infection, just my body's extreme reaction to my blood counts being so low. I'm back in my home isolation and hopes are that since I've taken all the growth factor my bone marrow will come back to life over the next week. All of my hair is now gone--what little was left we shaved off an hour ago. I still haven't looked, but dh says I have a pretty skull shape.
The silver lining--the myasthenia symptoms continue to slowly disappear! My mom babysat me the other day at the hospital during a meal and after I asked her "When was the last time you saw me eat without choking?" Her eyes filled with tears and she said, "Not for a VERY long time." The double vision disappeared yesterday and today I noted that my eyebrows seem to be less "droopy."
Anyway, I'm home and thankful to be here. My poor kitties have been real troopers staying here alone with dh rushing in to feed and clean and then leave again. They had their "hot beds" so they were at least physically comfy.
Just wanted to update you! It's good to be back and I look forward to reading and catching up on all I missed.
Thanks for reading.
Cally
As you all may know, I've been recovering from an intensive experimental chemo regimen to treat myasthenia gravis. I was home a week and doing "ok" when things started going bad on Tuesday.
Early Wednesday morning I went to ER with a fever and general feelings of being unwell. When they did the labs, the numbers were critically bad. They were supposed to be low as the chemo was to kill my immune system but this was WAY bad. I began bleeding spontaneously from my nose, etc and they immediately admitted me to an isolation room.
I had a horrible day of fever, which got as high as 104. I had two episodes of uncontrollable shaking chills that were so violent I thought I might break a tooth. Dh said I was pretty delirious. I was started on precautionary IV antibiotics (STRONG ONES) and they began transfusions and platelet infusions over the next 3 days. My neighbor stayed with me the first night and dh the next two. I needed someone 24/7 with me.
Finally this morning, I was sent home, out of the "critical" stage but still incredibly low and at risk. My blood cultures grew nothing, so I did not have an infection, just my body's extreme reaction to my blood counts being so low. I'm back in my home isolation and hopes are that since I've taken all the growth factor my bone marrow will come back to life over the next week. All of my hair is now gone--what little was left we shaved off an hour ago. I still haven't looked, but dh says I have a pretty skull shape.
The silver lining--the myasthenia symptoms continue to slowly disappear! My mom babysat me the other day at the hospital during a meal and after I asked her "When was the last time you saw me eat without choking?" Her eyes filled with tears and she said, "Not for a VERY long time." The double vision disappeared yesterday and today I noted that my eyebrows seem to be less "droopy."
Anyway, I'm home and thankful to be here. My poor kitties have been real troopers staying here alone with dh rushing in to feed and clean and then leave again. They had their "hot beds" so they were at least physically comfy.
Just wanted to update you! It's good to be back and I look forward to reading and catching up on all I missed.
Thanks for reading.
Cally
Enjoy. 
