For now, I want to share the reasons we were there, my health, my "unique" conditions, and finding help for them. We saw five specialists while we were there, had two tests done, and 10 tubes of blood drawn! Since most of you don't know and/or don't care about fancy medical words and names of conditions, I will try to keep this as relate-able and readable as possible.
Our first appointment was on Monday morning with Orthopedics. Orthopedics deals with skeletal, muscular, and joint correction, repair, and stabilization.
Backstory: Recently, we visited Physiatry at UK. (Physiatry is basically Orthopedics mixed with Physical Therapy.) The Physiatrist recommended ankle supports, a belt like brace for hip and back stabilization, continuing to wear my knee brace, and continued physical therapy.
So at the Orthopedist's office, we discussed all my various pains, dislocations, braces, and pain treatment. He fully agreed with the Physiatrist's recommendations. Meaning: we FINALLY found somebody in state who seems to know what they are talking about! At Johns Hopkins, it is rare to find a doctor who doesn't know what a connective tissue disorder is. In Kentucky, it is rare to find one who does know what it is. So it is a relief to know that we have found a good doctor to help manage my pain and stabilization.
So the treatment plan for me is: new ankle supports, (these will be super cute and actually wrap around my entire ankle - woot!) an SI belt, which is the belt/brace for my hips and back, and continuing with my other current treatments. I'm actually happy with this plan. It is something new and hopefully helpful, but not so much information that it is overwhelming.
Our second appointment was to have an echocardiogram (ultrasound of the heart). This examines the blood flow in my heart and also measures my aneurysm to see how it has grown. Since it was my first echocardiogram at Johns Hopkins, they did a full 45 minute test. It went well and we got the results the next day. The aneurysm is still the same at 4.2 centimeters and my valve is still pumping well and only has 'trivial' leakage.
Our third appointment was with a Gastroenterologist. (Stomach doctor.) This was to address all of my stomach issues. (I'll spare you the details.) This doctor was very nice and quite funny. He listened to all of my problems, carefully considered all possibilities and then made some recommendations. He suggested that I have another colonoscopy and endoscopy. What fun! He also recommends that I begin taking a medication to help with my nausea and over all stomach motility. Hopefully this will help to reduce pain, nausea, and all my other stomach related issues!
Our fourth event at the hospital was a Cardiology and Genetics appointment. This is where we got to meet Dr. Hal Dietz, co discoverer of the Loeys-Dietz syndrome, a connective tissue disorder.(You know you have a lot of health issues when you get excited about meeting a 'famous' doctor.) Both Dr. Dietz and the geneticist were very helpful and genuinely seemed like they wanted to help me. We spent 3 hours in the office, not because we had to wait that long, but because we were talking with a doctor for that long.
Through our discussion with the doctor, we learned that previous hospitals did not fully complete the genetic testing. Basically, if the first step comes back with a certain result, they don't continue on. Even though some things could be missed later in the testing, like possibly a diagnosis, they stopped. Johns Hopkins wants to redo the testing, so hopefully they will complete it in it's entirety.
With that news and the fact that I don't exhibit classic symptoms of any connective tissue disorder, I am now a SWAN. (Syndrome without a name) But the doctor assured me that this is not a bad thing. He said it is better to not have a diagnosis than to be misdiagnosed and treated for something I do not have. So a Swan, I will be.
Dr. Dietz wanted to do some neck x-rays just to completely rule out one disorder. Although I impressed the x-ray tech with how 'bendy' I was, they were normal. The doctor says this is a good thing.
Along with these things, the doctors have decided to double my heart medication dosage. They said that taking a higher dosage should not cause any complications and will hopefully keep my aneurysm from growing. In mice with marfans, (a specific connective tissue disorder) the medication even helped shrink the aneurysm and remodel the aorta, making it less defective and prone to aneurysms. I do not have marfans, nor am I a mouse, but I guess there is still a little hope.
Finally, my favorite thing the doctor had to say... I told the doctors that I just want to have surgery so that I can "be fixed". Dr. Dietz looked at me thoughtfully and said, "Don't think of it in a way that you are broken. You are not broken." He explained that even though my genes and DNA ma be different, they still work. Although I may sometimes be labeled defective, I am not broken. I know he meant it in a physical sense, but it made me feel better about every aspect of my life. I imagine this is what God thinks of me too - I am not broken.
Our final appointment was with an Allergist/Immunologist. She is the wife of the Gastroenterologist that I saw earlier in the week - how cool! We explained to this doctor about my chronic "sinus infections", cough, and other allergy issues that just never seem to go away completely. Each time I get sick, I am diagnosed with a sinus infection, put on an antibiotic, and then never seem to completely get better. It is almost as if with each sickness I have, I lose a little piece of my health that I never fully gain back.
After a long talk with the doctor, she recommended a more regular use of some allergy medications and the continued use of one that I am already taking. She also said that maybe I have never recovered fully from a sinus infection. We already knew that my immune system was pretty much non-existent, but we didn't know just how long I should be taking antibiotics. She said next time I get sick, she recommends a 3 MONTH antibiotic treatment plan. She said this could get everything cleared out and functioning better and hopefully make a big difference in the way I feel when it is over. Next time I am sick, the doctor also wants a CT scan of my sinuses to see if there are any other issues going on.
Final stop at Johns Hopkins was for blood work - ten tubes taken in total!
Overall, I am very happy with this visit. The doctors were kind, they listened, they acted like they really want to help me, and they actually seemed to understand just how miserable I am on a daily basis. My spirits are up and I am excited to begin all of the various things that these doctors have suggested. New medications, new tests, new braces, and a new attitude. A regular exercise plan was recommended by every doctor to regulate and help pretty much every system in my body.
So I am determined to do what the doctors have suggested and hopefully start heading towards a better quality of life. Although not every question was answered, every prayer was answered. I have enough answers to help for now and to give me a place to move forward to. I am hopeful and I am happy.
Thank you so much to everyone who has prayed for me over these last few days, weeks, months, and years. I ask for your continued thoughts and prayers. What many don't realize is that this journey doesn't have a particular destination. It's a lot of trial and error. It's a learning process. It's about research. Even when I am officially diagnosed, there will always be new research and data to consider. So while I can't exactly have an end in sight, I have a goal that is further down the path, further into my journey, and further into finding comfort and peace. And I am learning daily to be happy with that.
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