Biopsies

October 9th, my prayer army begins to pray for me from the moment I leave my house until my procedure is finished. For some of them this means beginning at 4:00 am. Although this is a day I am dreading, I feel the comfort of being surrounded with prayer. As I walk into the hospital where the procedure will take place, the familiar sights, sounds and smells bombard my senses taking me back six years ago. In 2007 and 2008 I spent a combined total of four weeks in this hospital. A flood of emotions overwhelms me. It is a love/hate relationship I have with this place.  The memories of all that happened here, learning about this rare condition, the pain, and suffering that took place still haunt me.  On the other hand, I am so thankful for the care I received. I can still see the faces of some of my favorite nurses. I remember our short daily conversations, the stories they would share about their family, and I wonder how they are doing now. I remember the friends that came to visit me every time. I remember the “table of cheer” as I call it, filled with cards, balloons, flowers, and gifts from loved ones.

As I enter the waiting room, it is strangely empty and quiet, perhaps it is the early hour. My eyes met with the mother of the lone family in the corner. I exchange a small smile and a knowing glance. I walk up to the check in desk, the computer is down. The receptionist fills me in and mentions this might take a while. After several minutes all appropriate release forms have been signed and I am sent back to the waiting room. My husband had arrived after parking the car and waiting with him was our daughter, who has stopped by on her way to an early class. It is not long before my parents have joined us.

A nurse calls me back and asks my family to wait while she preps me for the procedure. While she is taking vitals she asks if there are any drug allergies or adverse reactions to anesthesia, “yes, lots and I believe there is a list in the computer” I replied. She begins typing and says “Yes, you do, anesthesia will be here soon to talk to you about these”. We had requested a specific anesthesiologist but he no longer worked at the hospital. He had been the only one who seemed to know exactly what Mastocytosis patients could tolerate. Although, I always brought my anesthesia records with me to every pre-op consultation, no other anesthesiologist seemed to be able to follow the  same protocol. The results had not been good. I had a hard time coming out from the effects of the medications hours later, trouble breathing, feeling like my whole body was on fire, drop in blood pressure and body temperature, violent vomiting even while asleep, occasionally tearing my esophagus, and sometimes I had to be hospitalized for an outpatient procedure because they could not stabilize me. The effects last beyond that day. Although I am no longer visibly sick,  I am usually not myself again for about one to two weeks. I have trouble concentrating, not remembering things that happened, starting something on the stove and then walking away, and things like that.

Soon a young doctor enters the pre-op bay. He has fully read the computer information, plans to follow what has worked in the past,  and feels confident of what he needs to do. My GI  specialist arrives and after some quick goodbyes to my family, we are off for the procedure. The procedure goes very well taking less time than anticipated. As I am in recovery, I notice the anesthesiologist has been hanging around my door keeping an eye on me. I am doing well with only some mild nausea that disappeared after some medication. We have success! Soon I am receiving discharge orders and on my way home. I am alert, feeling well, and able to enjoy the afternoon watching movies with my Mom. I am so thankful the day went so well, it was definitely an answer to prayer. The results will take about 10 days to come back. In the mean time, I am learning patience.

Relapse

Although the seasonal cycle here in Oklahoma usually provides a slight reprieve for mast cell sufferer in summer and winter, that did not happen in 2013. It may have been the May outbreaks of tornadoes or the fact we never really saw the HOT temperatures but, like most things mast cell related, there is usually more than one contributing factor. It’s more like a jigsaw puzzle, every piece plays its part. For me those pieces  fit together to create a perfect storm which has caused a major relapse.  A bug bite, inadvertently eating some food I am intolerant to, lack of a summer down regulating time, and the famously dangerous fall flare season all played their part. On September 24th I ended up in the ER with some symptoms of anaphylaxis, included my throat swelling partly closed. It was very painful and very scary!

No one ever wants to be in the ER but for a mast cell patient it often means not only seeking urgent medical attention but also having to explain your rare condition to people who have gone to school for many years but have never heard of what you have. It is a very fine line to walk. How do I explain what I have, my extensive drug allergy list, without making this very educated person feel like they don’t know what they are doing, that I am not trying to tell them how to do their job, without sounding like a crazy person, and in an emergency that may make it difficult to speak. I have written before about the glories of the Mastocytosis Society’s “Emergency Room Protocol”. You can read the article here.   No matter how you prepare, you still never really know how your doctor will respond.

This was a pretty good experience, as ER trips go. My doctor really didn’t understand my disease but he recognized an allergic reaction when he saw one. Due to the high allergic response of Masto patients, trying new medication is typically not the best decision when already in a crisis unless there is no other option. There was some discussion over giving me alternative medication, instead of what we knew had worked in the past, but it all came together.  I left with in a few hours with orders for high dose steroids and Benadryl. The swelling never went completely down but I was no longer in an emergency situation. When you experience an allergic reaction of that level, it is easier to have another one in the coming days. Medication for a week is generally the standard of care.

For me, the problem came when the swelling was not better many days later. From time to time, the swelling would actually get worse and there was no chance of getting off the medication. I made a trip to my specialist, who takes care of all my mast cell issues. He ran many specialized tests and scheduled me on October 9th for some biopsies.

In the coming days eating became increasingly challenging. The severe pain and swelling attacks were back after eating. I was now having allergic reactions to my safe foods. My already tiny food list was shrinking by the day. Soon I was down to only lamb and rice. I mean ONLY lamb and rice, no seasonings of any kind. Another week and lamb was the next to go, leaving only rice.

I was now losing weight at a fast rate. The swelling and my limited diet prevented me from eating a proper calorie load. I became increasingly dizzy and weak. All activities on the schedule have now been canceled, driving was definitely out of the question, and now with the increased need for Benadryl ever 4 hours round the clock, I spent most of my time in bed. I am not really very good at asking for help. I’m not sure why that is, probably because it is so very humbling. I am happiest helping others all day long but I don’t like being on the other side of things. Between the pain, being drugged up, and not being good at asking for help, I haven’t really shared with many people about what has been going on.

As family and friends began to hear about what was happening, my very own prayer Army begins to spring up. I am so thankful! It starts out with my family and about 7 of my best friends from high school and the various places the military has taken us. My church pastoral staff commits to lift me to The Lord. My choir family hears the news and begin to pray relentlessly, and let me tell you what, that group can pray! My aunt’s Bible study group in California joins. This is overwhelming to me as I have never met any of these great prayer warriors but they begin a fervent endeavor and check-in often with my Aunt. My Sunday School class comes along side me as do several other friends. In the coming days over 100 saints enlist in the prayer army and are serving at various times throughout the day and night. I am blessed beyond words. This amazing outpouring has taught me two things.

• When you humble yourself and set aside your own pride, you make room for greater things that God has in mind
• No one can come together like the Family of God.

Thank you all so much! Words can never express how much I love you.