Scott Johnson

First post: Apr 14, 2016 Latest post: Jul 27, 2021
While some of this will be brand new news I wanted to catch everyone up on Scott's situation and give you a little background on what has happened over the past two weeks.
*Disclaimer: I will try and use the best medical terms however I have found that there seems to be multiple terms for some of the same or similar procedures. Since I haven't been in on every single thing, I have had to play catch up with Scott's explanations. So I'm trying!

Since his heart surgery in 2011 a pacemaker has always been in his future. Working with his schedule, and the need to get his blood to the right level, March 31 became the right date. On March 30 he went in for a myelogram procedure (like a spinal tap and/or lumbar puncture) at KU Medical Center. He went home and was to return on Thursday for his pacemaker at the hospital in St. Joe. He went in on Thursday but the doctor said his blood was not right. So in the middle of the night on Friday, April 1, he woke up with extreme back pain. He eventually went to the ER, was sent home six hours later and returned on Saturday April 2 due to no relief. He has not walked since that day. He also has had level 9 pain since that day.

Last Thursday (April 7) they started a five day treatment of immunoglobulin replacement therapy. This is a very expensive treatment to help with the immune system that can only be administered a little at a time over a period of time. So this past Monday (April 11) was supposed to be the day that he bounced out of the hospital because of the hope of this treatment. Unfortunately there has been no more progress on diagnosis, treatments or tests. (update April 19-- now updates are posted within the journal)

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