Monday, June 20, 2011

paging dr. andrea & dr. faye

My mom and I have DEFINITELY missed our calling in life. Both of us have spent countless years in the field of Education, when CLEARLY we were meant to be doctors. Our closest friends (who read this blog) will most certainly agree! You must be wondering what has prompted this post. I am glad you asked. We are currently on the road to solving yet another medical mystery.

His name is Scott.


My faithful followers in blog world are all too familiar with the bumpy medical journey Scott and I have been on over the past, well, forever! We have been excited because Scott has enjoyed almost a solid YEAR of good health. I am afraid that has, ONCE AGAIN, come to an end. At least for now. It has been two weeks since his knee surgery. With the help of physical therapy he has recovered well from the actual procedure. Today, however, he came home and is having difficulty walking. Again. He is in a good bit of pain and his knee is beginning to swell. His orthopedic doctor has referred him to a rheumatologist. The doctor says it is a definite auto-immune issue. Not a "knee" problem. He does not know what is causing it. So, while we are waiting to hear from the rheumatologist, my mom and I have put our heads together.

Dangerous...I know!

Here is the bulleted version of what we have come up with:



  • We return home from Guatemala in 2007 and Scott immediately spends over a week in the hospital. We were told he had lymphoma and he had, what we were told to be a tumor, removed in his neck. He was followed throughout the week by Infectious Disease. They ended up sending him home saying that there was nothing wrong other than a weird virus.

  • Over the next year or so, his Jpouch begins breaking down. We were in and out of doctor's offices trying to prevent the inevitable.

  • 2009 He goes into the hospital to have his Jpouch reversed and came out with an ileostomy bag.

  • From that surgery he contracted MRSA and a few other infections were found. The rectal wound never healed. The doctors could not explain this.

  • 2009/10 he had five different surgeries.

  • March of 2010 he had his final surgery and FINALLY healed up last summer.

  • During the surgeries Scott's knee has been giving him problems. We always just passed it off as being arthritis. With all of his other issues, we did not give it much thought. While on IV antibiotics, his knee was perfectly fine. Coincidence, right?

  • Once the antibiotics ended, the inflammation in the knee began to show itself again. We went to our family doctor once or twice, but no one seemed to be concerned with our theories. So, he has just dealt with the dull pain.

  • Over the past two months, the swelling has become more severe as well as the pain. Two weeks ago, he was unable to walk.

  • The orthopedic surgeon (who we loved) operated to drain fluid and biopsy some of the inflammed tissue. He, along with the PT's, are in agreement that there is not a problem with his knee, but it is an auto immune problem.


Now, here is what Dr. Beam and Dr. Cothran believe. ALL OF IT IS RELATED!!!!!!!!!!!!! There is something going on in Scott's body that his immune system is fighting that is causing all sorts of issues. I truly do not believe that each incidence is unrelated. Now, we just have to find a doctor who will listen to us. Not easy. We will begin with the rheumatologist, I suppose. I realize that I have probably just wasted so much of your precious time with my ramblings. I am happy I wrote all of this down if for no other reason than to have a record of it.


I will ask for your continued prayer support. We always do our best to remain positive in spirit, however, it does get really discouraging to take two steps forward only to fall backwards. Living with Chronic illness is not easy. For anyone. Thank you for your support! :)

1 comment:

Kathi said...

What about fibromyalgia?