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A Personal Journey To Find A Cure
*** UPDATED WEDNESDAY DEC 9 2009 *** Sunday December 6th we ended up taking Laurel to the Mayo Hospital ER in Jacksonville. For the past several days, symptoms long forgotten about a few years back, had reappeared. Burning pain in her neck, moving down into her shoulders, arms and legs made moving difficult. Dr. Chiota, a nice Neurologist saw Laurel in the ER and after some tests, she admitted Laurel. Several visits by the "Herd", CT's were ordered to see what was going on with her neck and spine. Turns out the C3,C4 was showing protrusion favoring the left side, which would explain her left side being week. Conclusion: according to the neurosurgeon, the risks were too much for the time being to repair the verterbrae so they referred Laurel back to Pain Management for treatment. P.A. from Pain Management visited Laurel on Wednesday evening and explained THEIR game plan - not ours, but theirs. During her already scheduled Dec 21st appointment, they are going to try to squeeze her in for an epidural. Not sure why they could not perform the epidural while she's in the hospital, rather than send her home in pain. If I had more free time, I would wager that our story could be a nice short story hit! Many years ago I decided it was time for a mission, a mission that would take me from west to east in search of myself. Cliche? Maybe, but that's what my travels were about, finding out what I wanted for myself. While living in Ontario and having the fortunate luck of some brief travels south, I was very lucky to have met Laurel. After spending as much time as possible with her in Toronto, on St. Simons, and both out west and east, I made a decision that if this relationship was to last, jet hopping back and forth or 18 road trips would not be sufficient. July 2,1997 was the official day I landed in Orlando, Florida, which was the beginning of a journey neither Laurel or I could have imagined. What you're about to read is an abbreviated version of our journey together as husband and wife, and as mother and father, but most of all as best friends. As I left the plane at our gate I started to look for Laurel in the crowd. (back then you could escort and greet family at the gate) Not seeing her, I just assumed she was up to her hide n seek game at the airports, which was something I learned quickly about her. After finally greeting each other, we were on the road back to St. Simons, I was behind the wheel since Laurel was suffering from a severe migraine. We arrived back home after our four hour drive, unpacked and just kicked back for the remainder of the day. After many months of courting Laurel, and after many more months in St. Simons, we became engaged to marry in Nov. 1998 our target date. It took some time and convincing for both families to adjust to our news, but I'm comfortable saying today, "All parties were extremely happy!" After our engagement and my first inaugural Thanksgiving trip to Fairfax Station, VA, we would head out and get our first Christmas tree together. Our first christmas together was a wonderful time.....and then "it" hit. Nosebleeds and significant bruising started to appear out of nowhere. Laurel reasoned that she bled and bruised easily. I accepted that for a few days until grapefruit sized bruises started to appear along with petechiae . What the hell was going on? We tried to speculate. Was she allergic to the Christmas tree? Did she eat something nasty? We just didn't know. I think it was around the time that her nosebleeds did not stop, the petechiae spread and the bruising had covered about 50% of her body I strongly insisted on blood tests and finally she agreed. A day later while we met with our wedding co-ordinator, the phone rang at her parents' house around six o'clock. Her dad instructed me to get her to Emergency immediately. After hanging up the phone, I told our wedding co-ordinator that we had to cut our meeting short without raising any alarms with Laurel. What we found out from her father was that her platelet count was hovering around 5000. I learned quickly that this was not good. The ER admitted her immediately and put her in a triage area. What happened next scared me and it scared Laurel to death. The nurse prepped Laurel so they could draw blood. No sooner did she get the needle / shunt into her than blood started to shoot out of her arm like a water gun and I'm not exaggerating that. The events leading up to today: *** What I forgot to add in the meantime is, Laurel continued to work as a High School Spanish Teacher during this whole ordeal *** ***UPDATE*** June 18th 2008 . after several months of treatment up until November 1999, Laurel was taking the same medicines: Imuran, Plaquenil, Prednisone and I forget the rest. The next four weeks in Savannah were filled with fear, joy, the unexpected and more fear. I'll abbreviate this next part to save everyone the pain:) Laurel was on a wonderful <not> IV called Potassium something or another. They really filled her up on the maternity ward, so much that you could tell she was retaining fluid. She could hardly breath and needless to say, the maternity ward is not exactly where you want to be if you're a high risk patient. Moving along, they inject some steriods into Laurel to help speed along "Whozits" lung development as they are very anxious to get him out. After the second injection, they decide to bring on the Pitocin or more commonly known as the "Pit". This stuff works!!!! They move her to a nice delivery room with all the gadgets and then things start to get interesting. It was at this time they were rushing her out into the OR and I was not allowed in the delivery room. I was terrified, my mother in law was terrified and a close family friend (Marty) who arrived the same time they took Laurel to the OR got to her room only to see Ellie upset. A while later, out came Christopher James Mergl 5lbs 1oz. and was pissed off. But he was a handsome young man. Scored a 9.9 on his apgar and beat the odds we were given by some pesimistic doctors. Laurel is in recovery and I have the joy of giving her the news. She smiled and I knew then she could hear me. Fast forward a few days after crappy diapers :) and meeting our son and him learning about mom and dad. Laurel's condition deteriorates quickly. We finally convince the maternity ward staff and doctors that there is a slight problem with Laurel. NO KIDDING? She could hardly breathe, blood/ox was extremely low and in the meantime I had called her dad to intervene. They finally moved her to a medical wing (4th floor). A pulmologist was called in and within 45 minutes they quickly moved her to their CCTC or ICU, whatever you want to call it. The next few weeks were spent in ICU and then PCU and then finally home. The maternity ward practically drowned Laurel in fluids and she had a lot of fluid around the heart as well. FYI: Rheumatology was finally consulted when they moved her to ICU. In medical terms to my father in law (I understood once he translated) he stated her condition was not good and the outlook was poor. Of course, we brushed off his idiotic Dx considering he should have been there from day one and he wasn't. Fast Forward: Laurel's at home recovering enjoying Christopher and her next follow up with the local Rheummy was not good news. As expected, the pregnancy took its toll on Laurel and the next step was Chemotherapy - I believe Cytoxan was the drug. This treatment went on for 19 months before Laurel finally said, "*&^%*^)( this" and voluntarily stopped all medicines and quietly said adios to the Rheummy. Fast Forward: 2002 to approximately 2006 were good years for Laurel, for the most part. We knew the disease was active but her energy levels were up, her spirits and attitude were up, she was happy with the way she looked (she lost incredible amounts of weight and let me tell you - what a babe!!! She still is a babe to me). Had to beat off some of her damn students with a stick!!! During the school year late in 2006 (approximate) she started developing some sores. Turned out she had a staph infection and strep infection. With several visits to the local doctors and infectious disease doctors, they decide to put a pic-line in her and make her carry a baby jar of medicine around all day. "Pic-line" #1 got infected. Not sure of the term but her arm started to show signs of streaking. Apparently not good. "Pic-line" #2 eventually did the same thing. So now we're all scratching our heads on what to do to keep her from getting worse. It was about that time things started taking a downward spiral. The staph and strep eventually became less of a priority. She was now "MRSA" stamped by all doctors!!! Several other symptoms start to appear. Severe pain starts to appear in her neck, shoulders, arms and legs. Thanks to the father in law, we're introduced to Dr. Marc Cohen at the Mayo Clinic in Jacksonville, FLA a well known and apparently popular on the speaking circuit and a wonderful Rheumatologist. From this point on after seeing Dr. Cohen, the information on Laurel's condition and treatments are so aggressive and complex, it is almost impossible for me to include it all here. I can say this much: Rheumatology, Nephrology, Neurology and Pain Management have all played a roll in her treatment. They include some doctors from Brunswick, GA (mainly the pain management / phyiscal medicine doctors), Magee Womens Hospital - Pittsburgh, PA and mostly the Mayo Clinic - Jacksonville. We can now add Mayo Clinic - Rochester, MN to our list of places where treatments have been received. To give you an idea of what has taken place from January 2007 to today, the medical records alone from the Mayo Clinic exceed 1200 pages. This includes both clinic and hospital stays. I know this because Laurels "Short Term / Long Term" insurance provider required them for her claims. To paint even a clearer picture on Laurel's ordeal the last year and a half, our insurance company was billed approximately $323,000 in 2007 just from the Mayo Clinic. I thank god every day for our insurance. Approximately $100,000 was pharmaceutical related. (yep, drugs). Current Medicine List Fast Forward: August 2007 kidney biopsy was performed and the next six months required Cytoxan infusions. The first two went smooth; the next four went horribly. Underlying symptoms appear. Appendix removed! Final Dx after several MRI's and CT's and other damn tests: Serocitis. Several more hospital stays and ER visits. Two Cytoxan infusions performed while hospitalized. September 2007 Laurel takes leave from School as a Spanish Teacher. She is heart broken. Due to the frustration of her care while in the hospital, I took it upon myself to arrange a trip to Pittsburgh to see Dr. Susan Manzi at the Magee Womens Hospital - Lupus Center of Excellence in March of 2008. During this time period, Dr. Calamia discusses Rituxan treatments after 4th round of Cytoxan. Nephrology says Laurel needs six treatments. We contact Genentech to get ball rolling on Rituxan approval (Insurance won't pay the $17k per infusion). Trip to Pittsburgh reveals Grade 4 lupus nephritis. Do not really learn anything new, but we got to meet several dedicated doctors working hard towards a cure. We met with Rheumatology, Nephrology, Pain Management, Dermatology and all were very well versed with Lupus. We will go back again. Back to Jacksonville. Rituxan treatments are now the only remaining treatment. April 11th was 1st infusion. Went horrible and we had to transfer to ER due to reaction. Second infusion performed April 23rd while Laurel's hospitalized. ***NOTE*** WE LOVE THE NEW MAYO HOSPITAL There is so much more to this story, but I'm tired and I'm going to bed. I'll finish this soon.
Read Laurel's Story Here
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