Hi Everyone!
So I just took a look at my Stats for the first time, and I have people in Germany and Kuwait reading The Butterfly Chronicles! Not to mention all of you here in the States, including Alaska! Thank You for reading, this is so cool!
Today I wanted to give you all a little insight into my journey, and how I got to this point. I began having rare, out of the blue illnesses in 2002. I woke up one morning to get ready for work, and had the worst headache of my life. Within minutes I realized something was seriously wrong because I couldn't see. I literally couldn't read the shampoo bottle in the shower. I called out for my best friend and roommate, and she called my mom. My mom told my best friend, Amber, to immediately take me to the hospital. She did just that, and I was immediately taken back. They did an intensive workup, including a spinal tap. Once the tap was completed, they diagnosed me with Psedotumor Ceribri; a condition where for reasons unknown the body thinks there is a tumor in the brain and creates an overproduction of spinal fluid. This causes extremely high pressures in the brain that can be fatal if left untreated.
For the next year they tried to manage it with medicine, but it didn't work, so they put in a shunt. However after the shunt was placed I didn't really get better, and so began a cycle of going to the Emergency Room on average three days a week. I was diagnosed with intractable migraines, and for a year spent 266 days in the hospital or admitted to migraine clinics. After a year of this I got extremely sick again, and was admitted to the ICU. They said I needed to have my shunt replaced, but the Surgeon on call wanted to wait for the Surgeon who originally put the shunt in. My mom stepped in at this point and got me transferred to a hospital who's Neurosurgeon was incredibly respected. Once I was transferred, Dr. Levy (the Neurosurgeon) walked in, took one look at me and asked me a question that Id never been asked before. He said, "Heidi, what does your gut tell you?". I looked him in they eye and said, "My gut says something is really wrong, that if something isn't done, I'm going to die". He looked at me with the most intense blue eyes and said, "okay, we go in first thing in the morning." He did the surgery at 6am. A few hours later he came out with my old shunt tubing in a bag in his hand and told my mom that my gut was correct; my shunt had been inserted in the wrong place, the tube was inserted into my brain matter instead of the ventricles that create the fluid. What Id been experiencing for the last year hadn't been a migraine after all, I had been in chronic shunt failure for a year. He was shocked I hadn't died before then.
After that surgery I began calling him Superman; it was like he came in with a cape in the middle of the night, and literally saved me life. I am forever grateful. This situation also taught me a valuable lesson; trust your gut. You know your body better than anyone, if you feel something is truly wrong, it probably is! Don't let someone else talk you out of that feeling. This lesson would come in handy over the next few years, because this was only the beginning of Lupus rearing it's ugly head.
Once I had my shunt replaced, I did a little bit better over the next few years, with the exception of having to have my shunt revised and moved three more times. By 2006 despite the multiple brain surgeries, I had gotten my EMT, and was volunteering for the Red Cross doing medical fairs, and working as a Unit Secretary in a local ER. I was really enjoying my life.
Then in November 2005 I bad to have a pace maker put in as it was found both my mom and I had familial Long QT type 2 (an electrical arrhythmia of the heart). I recovered well from the Pace Maker surgery, but in January 2006 I began having incredible chest pain, and difficulty breathing. My mom took me to the ER and was admitted to the ICU where it was found after an echo that I had Pericarditis (an inflammation of the sac around the heart). They immediately started me on high dose steroids, and pain meds. I stayed in the hospital for a week, and was told that if I had a recurrence they would work me up for Lupus, but they were thinking that this occurrence had happened from a flu bug Id had just a few weeks before over New Years. So after a week I went home to recuperate. I thought I was doing well, but as soon as they tried to reduce my steroids, the symptoms began all over again, and in March I was admitted yet again. This time the stay was longer, the dose of steroids higher, and a workup for Lupus began. By the end of the stay they were calling me "Lupus Like" as my ANA wasn't staying consistently positive. This time they added Plaquinil, and waited a little longer before reducing the steroids. However, when they tried to reduce the Prednisone a second time- you guessed it!-I relapsed and ended up admitted to the ICU again. This cycle lasted until August 2006 when I collapsed from Congestive Heart Failure. This time I nearly died. My mom actually came and got me, and I don't remember the car ride there. I don't remember being taken back to the Crash room. I vaguely recall a bunch of people talking urgently, and moving with purpose. As an EMT I knew this was bad. The next thing I recall is a nurse yelling that my blood pressure was 76/42. A Dr. then said "no way, take it manually". The nurse did, and got the same reading. At that point the Dr. said to hang a dopamine drip to get my blood pressure up. I remember them putting a special line in my neck, and someone telling my mom that she needed to step out. At that point everything goes black. The next time I regained consciousness I was in the ICU, I stayed there for a few weeks, but I didn't get released from the hospital until after my open heart surgery.
In October 2006 I was moved from the hospital I was at, to a major university hospital who had a Cardiothoracic surgeon who could do a partial pericardectomy. They did the surgery on October 8, 2006.
The surgery was a success but they had serious complications during the surgery itself (Ill talk about that in a later post). However, when they looked at my Pericardium under a microscope they saw inflammation and fibrosis in my Pericardium. Bottom line, I had Lupus in my Pericardium. They told my family after the surgery that if I had another recurrence, that I would likely need a heart transplant due to the amount of damage to the heart muscle itself. However because of my changing ANA they refused to call it Lupus, so no Lupus treatment was started.
For the next year I did okay. Then in May 2009 I began to have symptoms of the Pericarditis again. My Rheumatologist immediately got me into the Mayo Clinic to have a Radical Pericardectomy. I was also told that I may have Pulmonary Hypertension. On May 14, 2009 we drove to Rochester, MN for the surgery. I was told that due to my history, I only had a 10% chance of making it through the surgery safely. As it turned out, they did have some complications; my phrenic nerve was damaged in the course of removing my Pericardium, so my left lung is now completely paralyzed.
A year later, I was admitted to the hospital for CHF again and shortness of breath. At this time, I was told that I had Pulmonary Hypertension and needed to move to sea level if I wanted to avoid a heart and lung transplant. Six weeks later I made that move. While it was incredibly hard to move away from my family and friends, there was a silver lining to the move as I had to find new Dr's, one of which was a new Rheumatologist. This new Rheum took one look at my medical records and said, "and your not on immunosupressant therapy why? You absolutely have SLE, you just fall into the 15% of people who may never have a + ANA." I looked at him and I just cried. I was so grateful to finally have a diagnosis. The last thing I said to my CO Rheumatologist, was "your going to find out that this is Lupus in my autopsy, something has to change or this is going to kill me." His response? "Who's the Dr here, you or me?". I was blown away by this statement, and it brings me back to advocating for yourself. Lupus can be impossible to diagnose. Many people get the wrong diagnosis before they get the right one. I was made to feel it was all in my head; I cant tell you how many times a Psychologist was sent in to talk to me during my hospitalizations, and each time at the end of the time they would look at me and say "you don't have anything wrong with you psychologically. You know there is something wrong, and you aren't letting it go, and that's how it should be. You are your best own advocate, only you know your body." It was those statements that emboldened me to speak my mind when I knew something was wrong. If I didn't say it, who would? And this is me imploring you to do the same; if you know something is wrong, speak your mind. If one Dr says no go get a 2nd opinion, a 3rd, a 4th if you need to. Only you know you! Don't ever take no for an answer when in your gut you know otherwise! This is the best advice I can give you; Always, always, always, trust your gut instinct. It is never wrong! It's the same thing that makes the hair stand up on the back of your neck. That feeling is a primal instinct, it will never let you down if you really listen to it and you don't second guess it. If you have that feeling around your health, then you must do something about it. Advocate for yourself, and if you cant do it anymore, go to someone you trust; be it a spouse, a best friend, your mom. Tell them what your feeling, what your thinking and take them to appointments with you. For me it was my mom. I have had moments where I just couldn't fight anymore. At those moments my mom stepped in and fought the battle for me. I truly believe without her doing that for me I wouldn't be here to write this today.
Thank you for taking the time to read this! If you take just one thing away from this post, take away this; advocate, advocate, advocate, and if you cant, turn the fight over to someone who can. And last but not least trust your gut; if you go to one Dr and don't feel they heard you, go get a 2nd opinion (or a 3rd, or a 4th if you need to!). If you have any questions for me about how to do this, write me! I'd love to be a resource, or a support for you if I can. Just know, you are not alone in this!
Love,
Heidi
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