mg crisis and hospitalization from 05/26 thru 08/23
Good morning DS family,
I pray that everyone is having a good morning. First I would like to Thank everyone on this site for the valuable information they provide by sharing their stories and experiences with this snowflake disease. It has proven both valuable, inspirational and life saving for me. God Bless you all.
I am home after having been hospitalized 05/27 -06/17; 06/26-07/23;08/03-08/11 from crisis. each time I was on a vent for 14 days. The third stay ended with a trach because the ICU neurologist felt that if I had to come back , he did not know how easy it would be to ventilate me. After much prayer, and objection, I finally gave in on July 12th. Might I add, a feeding tube was also added to to the weight loss of 34lbs. I received Plasmapheresis on both of the first 2 stays ( first time ever). They tried the IVIG but I must have had some kind of reaction to it because they stopped it on the 2nd day. My stay in the ICU was frightening to say the least! Being awake and on a ventilator is no walk in the park I tell you. I can tell you, make sure you have a family member around the clock their with you because from inexperienced nurses, not washing hands and witnessing the night shift move quite slowly when code blue was called. ( I think they give the nurses between the ages of 20-25 the overnight hours because the day shift were quite amazing) Thank God my family was there every second of my stay. I am now home on 60mg of prednisone, 75 mg of immuran.and 60 mg of mestinon up to 4xday. Next week I will be advancing to 100mg of immuran. To date my strength in my arms and legs have been fantastic, my swallowing and speech is still not 100% maybe 50% at best. Taking most of my nutrition by PEG tube and doing small pleasure eating (very soft) by mouth . Need to gain at least 10lbs before they will even consider removing the PEG tube. Also, will have the trach in until follow up CT has been done to positively confirm or deny Sarcoidosis just in case a biopsy is needed. Trach has not been that bad, since I cut out dairy, I don't have to deal with secretions all day. I just don't want it to be in so long that it becomes a permanent thing. Each day I continue to Thank God for his Mercy inspite of all the pain I endured.
A word of advice to anyone who doesn't listen to their bodies or push their doctors when they feel something Is wrong....Things can go downhill really fast!!!!!!!!! My speech started slurring in August 2012 and by January 2013 it was constant. By March my swallow wing was affected and I had lost 25lbs. Although I had seen the doctors, FP,Neuro and Pulmonologist.. I did not push my neuro to start a treatment plan nor did he insist as I had only been on Mestinon for 13 years. If I had , just maybe I would not have had several crisis at my weakest point.
Wishing you all the best!!!
Trinity419
home since 08/23/13 doing well
I pray that everyone is having a good morning. First I would like to Thank everyone on this site for the valuable information they provide by sharing their stories and experiences with this snowflake disease. It has proven both valuable, inspirational and life saving for me. God Bless you all.
I am home after having been hospitalized 05/27 -06/17; 06/26-07/23;08/03-08/11 from crisis. each time I was on a vent for 14 days. The third stay ended with a trach because the ICU neurologist felt that if I had to come back , he did not know how easy it would be to ventilate me. After much prayer, and objection, I finally gave in on July 12th. Might I add, a feeding tube was also added to to the weight loss of 34lbs. I received Plasmapheresis on both of the first 2 stays ( first time ever). They tried the IVIG but I must have had some kind of reaction to it because they stopped it on the 2nd day. My stay in the ICU was frightening to say the least! Being awake and on a ventilator is no walk in the park I tell you. I can tell you, make sure you have a family member around the clock their with you because from inexperienced nurses, not washing hands and witnessing the night shift move quite slowly when code blue was called. ( I think they give the nurses between the ages of 20-25 the overnight hours because the day shift were quite amazing) Thank God my family was there every second of my stay. I am now home on 60mg of prednisone, 75 mg of immuran.and 60 mg of mestinon up to 4xday. Next week I will be advancing to 100mg of immuran. To date my strength in my arms and legs have been fantastic, my swallowing and speech is still not 100% maybe 50% at best. Taking most of my nutrition by PEG tube and doing small pleasure eating (very soft) by mouth . Need to gain at least 10lbs before they will even consider removing the PEG tube. Also, will have the trach in until follow up CT has been done to positively confirm or deny Sarcoidosis just in case a biopsy is needed. Trach has not been that bad, since I cut out dairy, I don't have to deal with secretions all day. I just don't want it to be in so long that it becomes a permanent thing. Each day I continue to Thank God for his Mercy inspite of all the pain I endured.
A word of advice to anyone who doesn't listen to their bodies or push their doctors when they feel something Is wrong....Things can go downhill really fast!!!!!!!!! My speech started slurring in August 2012 and by January 2013 it was constant. By March my swallow wing was affected and I had lost 25lbs. Although I had seen the doctors, FP,Neuro and Pulmonologist.. I did not push my neuro to start a treatment plan nor did he insist as I had only been on Mestinon for 13 years. If I had , just maybe I would not have had several crisis at my weakest point.
Wishing you all the best!!!
Trinity419
home since 08/23/13 doing well
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