My story starts January 9th of this year. My wife rushes me to the hospital with a 102 temperature and fever, which will not go down. The hospital told me that I have pneumonia. Okay, I can live with that. My past primary told you will have to stay off work for three weeks on disability. I went back into to see this doctor three weeks later and I had to talk him into another two weeks because I was still week. I soon would be getting rid of this doctor and going back to my old doctor.
I went back to work in mid February after also learning that now I was a diabetic. However I knew that I still had something more going on in my body. All of a sudden I started having serious night sweats. Every hour on the hour. Not just a little dampness but soaking wet. My energy level and strength was not the same, I was losing weight, and something was seriously wrong. My boss, other employees were noticing this, my bible study finally after laying hands on me convinced me to take a few days off from work on a Thursday night.
Well the next day Naomi, my wife of nineteen years, admitted me to the hospital again for extensive tests. The tests revealed I had double pneumonia. However these tests did not reveal the truth.
I had left my old doctor and had gone back to my former primary care doctor. He had me in my office and told me your symptoms do not match your lung results. There is something else going on. He sent me to another hospital for a needle biopsy. After getting the necessary tests, both that hospital and Stanford Hospital could not read the results.
I was then sent to Stanford Hospital for biopsy surgery. Finally, on May 2nd after my third hospital stay I was diagnosed with Vasculitis, specifically Churg-Strauss Syndrome. I was already in stage three the furthest stage.
Also, while in the hospital, the doctor told me I would be probably be able to leave the day after the surgery. Well about an hour before I was going to leave something major happened that would change my life dramatically.
My feet started swelling up to twenty percent of their normal size. Then suddenly there is no feeling in the bottom of my feet. I was very frightened and scared. Needless to say I stayed over night until the next morning to talk to my doctors.
The next morning I will never forget one of the doctors trying to down play and act like there was feeling in my feet before the surgeon doctor arrived. He did not want to listen to what I was telling him and he acted like I was insulting his medical intelligence when I disagreed with him.
Oh yes, because of my feet I had to get a wheel chair soon after. That has been a time of really thinking about reality and what is ahead. This ahead includes when I go back to work. One third of my job is using my class B license when driving my residents to outings, shopping trips, and walking club. My doctor says my feeling in my feet should come back in two to twelve months. Every body responds differently. Fortunately, I have a boss who is going to be flexible and work with me.
I have been out of work on disability since March 14th. I have had the normal symptoms of Churg-Strauss Syndrome. I went from 172 pounds to 130 pounds. I continued to have night sweats, temperature changes, no endurance and strength, and little sleep.
On May 16th I met with my new doctor at Stanford extensively for question and answer time with my wife. I also learned in that meeting that I would be starting chemotherapy treatments. When I got out of that first visit I was numb with the overload of information that was revealed to me. I remember it took me two hours just to come back down to earth as I was processing what was ahead.
I have had two treatments so far with outstanding results. The feeling I lost in two of my fingers while having the biopsy surgery were restored the day after the treatment. My night sweats decreased fifty percent within a week. I was able to go completely off extra-strength Vicatin within three days. My strength and physical energy started coming back.
After the second treatment my night sweats have seen me only have dampness and I have been changing my clothes only a maximum of twice a night. My appetite has come back and I have gained ten pounds. I bottomed out at 130 from 172. I am now 140. No more fevers. My doctor dropped my predisone from eighty to sixty milligrams. I will be starting physical therapy very soon for building back my muscle tone in my arms and legs. But, most of all I plan to return to work July 14th. Yes, four months after being out of work.
The fact that all of these days and months have passed by has not distracted from me having a positive attitude through out. God, my biological family, my spiritual church family, my Bible Study support group, and my friends have all been supporting me. This includes prayer, home made meals, encouraging e-mails, uplifting cards, and friends taking and making time available for me to get out of the house during the week. Since I am big time social extrovert I plan one on one time every day with a new person. I do not sit or lay at home all day. This has provided me the social therapy time that I need which is fantastic.
Most of all, my wife has supported me 100% as my caregiver. She has had to hold down her regular job and take care of me as her second job. This has included washing night sweat clothes, taking me to doctors on her off days from work, making special meals because of my diabetes, pushing me around in the wheel chair for long distances with her bad back, dealing with my different moods especially at the beginning of the diagnosis, and most of all always being there for me.
I do not know when this journey will end but I know that God is using this time for me to reach out to others that are suffering in other areas of life. I will continue to look at this time to have faith, hope and love that God is in charge. He will heal my feet and put this disease in remission when it is his perfect timing.
The Positive Churg-Strauss Syndrome Patient