Friday, July 3, 2009

I have waited three years for this news!

I know you can't read the letter and I know it is probably weird to post personal medical information. But I am so excited about this note I can hardly stand it! I have complex Celiac Disease, not your run of the mill type that most people have. I am an informed, compliant patient, a doctors dream really. I am grateful to be able to navigate the health care system, grateful to have good health insurance, grateful to live so close to one of the greatest medical institutions in the country, grateful to be able to afford my diet. However, I have struggled with a great deal of discouragement and worry over the past three years because I simply was not recovering, not responding to the diet. It has been very hard to stay positive and focused, hard to keep my spirits up, knowing that I was so completely compliant with the diet, not having one intentional ingestion of gluten, and probably not having any accidental ingestions either.

For the past three years I have had endoscopic biopsies at Mayo. It is a simple procedure, not much to it. I get sedated and long tube is guided down into the small portion of my intestine. It takes less than 15 minutes. And then I wait, which is the worst part, waiting for the return apt to get the results.  My physician is brilliant, but scattered and sometimes I go back and he is not really ready to meet with me. This year I actually told him, "I am a good steward of my health care dollars, please don't have me come back until your prepared." When I returned in late March for the results of my February endoscopy he was not prepared, again. He likes to look at biopsy results himself and not rely on the pathology report. So all he could tell me was that things looked better, still some problems but over all better. He had not reviewed the slides himself, even though it had been well over two weeks.

Then he delivered a blow I did not expect. I was planning an 6 week medical mission trip to Northern India to deliver basic health care to Tibetan's in exile in April. He told me he did not want me to go on the trip, that my intestine was simply too unhealthy for the food preparation practices in India. I was broken, simply broken. I considered ignoring his concern but in the end my own health took priority and I canceled the trip.

Then late yesterday, this note from Dr. Murray arrived, three months after my last meeting with him and four months after my last endoscopy. He finally got around to reviewing my biopsy slides himself and says,  "It looks like your villi have completely recovered and look generally very healthy. There is still somewhat of an increase in inflammatory cells, (hence his concern about India remains). . . Given these findings, and especially the recovery of the architecture of the intestine and how well you are doing, I think it would be reasonable to wait one year before reevaluating this. I would find the recovery of your intestinal architecture and the villi as being quite a positive finding."

I can not begin to explain how welcoming this news is for me, and it tempers the sadness of not going to Northern India. It affirms me in every imaginable way

1 comment:

HB III said...

Clearly I need to read your blog more often. This is simply wonderful news and I think I have some idea - but only some idea - of how hard you have worked to this end and the disipline it has taken. You are in inspiration in your ability to embrace your illness and work with it.Congrats.