Saturday, August 29, 2015

Twenty Four - Health Update

It was a quiet week in my medical world, a rare commodity I do not often get to enjoy! I had only two appointments, a follow up with my Pulmonologist, and a follow up with my Neuro-Headache Specialist.
The appointment with my Pulm was mostly just to touch base after my UCLA appointment last week, and to go over the results of my Right Heart Catheterization. We spoke briefly about my new treatment plan involving the Cytoxan, which was decided to be done at another hospital since my university team is not in agreeance with this treatment. My Rheum is mainly the one behind that decision, who for some reason believes my illness is all, "depression, Fibromyalgia, and moodiness." I guess I shouldn't call him my Rheum anymore as I will no longer be seeing that physician after the bombardment of inappropriate, condescending, misogynistic conduct I received while in his office earlier this month. Luckily, in October my wonderful Rheumatologist that had to leave the university for personal reasons will be returning! I cannot wait to once again be in her very competent, compassionate care! ...I'm a little off topic now lol Back to the Pulm appointment: We then went over the results of my RHC. My mean pulmonary pressure was 14, which is well within normal range as Pulmonary Hypertension is not diagnosed until mean pressure is over 25. According to this doctor I do not have any evidence of PH which is fabulous! Every clinicians interpretation is different however as they review the entire results, not just one statistic. So I am interested to see what my UCLA specialist will think about the results of the procedure as a whole when I see him in October. We decided to make a follow up for another Pulmonary Function Test in six weeks since my lungs aren't exactly "stable" at the moment. We will be keeping a close eye on that rapidly declining DLCO which is now resting in the low 60's.

Next I saw my Neuro-Headache Specialist. This was a follow up after I saw her earlier this year for debilitating headaches as a result of my 22 day hospitalization back in December. There are few doctors I truly feel care about their patients, but she is one of the exceptions! When I am in her office I feel she sees me as a person, an individual with a life, not just a medical statistic. If this physician and my GI could just run all my care I would be one happy patient! lol Last time I saw her she prescribed a drug for my headaches called Cymbalta. This medication has completely changed my life for the better. Since beginning treatment I have not endured any more of the debilitating Occipital Neuralgia relapses. These "headaches" were unlike any pain I have ever felt, leaving me completely helpless to a primal drive due to the crippling pain that clouded my ability to think logically. The feeling of thick hot iron being filled into the back of my skull, crushing whatever person resided in my head no longer leaves me in constant fear thanks to this drug. During this appointment we talked mostly about my progressing autonomic issues, also known as Dysautonomia. With my bodies complete lack of ability to regulate blood pressure, heart rate, temperature, and heart rhythm at any position it looks like we may be battling Pure Autonomic Failure, though we wont know the exact branch of autonomic malfunction until I see my ANS specialist at the end of September. She prescribed a new medication called Midodrine that is suppose to assist the function of the autonomic nervous system since my last medication for this problem prescribed by my Electrophysiologist didn't pan out as we were hoping. After we spoke regarding all my medications and current issues we had a few minutes just to talk about life. She is the only physician that takes the time to ask me about my personal life... and she didn't even try to rush out! She legitimately wanted to talk to me, not just my disease. I feel like a normal young woman in her office, not a medical experiment like I do with many of my other doctors. It's so refreshing! She is also the only physician to ask if she could read my blog which I thought was really cool! (So if  you are reading this: Hi! Thank you for being an awesome doctor that remembers I am a human being, not just an illness!) Overall it was a great appointment and I am very excited to start this new med; we have some worries about it possibly increasing my Raynauds, which would be cause for immediate discontinuation of the drug, but only time will tell!

I don't normally talk about anything else besides my medical journey on this blog, but I thought I would share with my readers that I had a fabulous 24th Birthday! As a young woman who cant eat, and is mostly home bound celebrating can be difficult. Luckily I was feeling relatively well that day, enough to get up, put on some brand new make-up, do my hair, and head out for a day on the town! I started out with Mommy-Daughter Mani-Pedis, then headed to a local juice bar to pump "healthy stuff I would never put in my mouth" through my feeding tube with my awesome best friend who is also a Tubie, and finally got 20% off at my favorite thrift store with my Birthday coupon! Thankfully my pain killers lasted most of the day, and all my medical equipment behaved relatively well. I crashed hard when I got home! haha Totally worth it! I am feeling so grateful to have made it to my 24th birthday after the crazy year I have had!

How a Tubie does "Birthday Shots" ;)

12 comments:

  1. Hi Chanel. I'm glad you had a wonderful 24th Birthday and I wish you many more! I recently discovered your blog. Thank you for sharing your inspiring life with those of us lucky enough to have found your website. I always look forward to your posts, not just for inspiration, but because I am concerned and interested in your (physical, emotional and spiritual) wellbeing. I really admire how you "fire" doctors who don't take your concerns about your illness, and the illness itself as seriously as they should. I know it must be hard sometimes to not only fight to live with your illness, but also fight to get certain doctors to pay attention and do their job. Btw I have Lupus, Sjogrens and a couple other issues that doctors don't seem to know or care much about, so I can understand the frustration of dealing with non responsive doctors. But just one responsive doctor can do so much to lift our spirits, right?! I am glad you have a couple of good ones. Thank you for keeping it real!
    Julie

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    1. Thank you Julie! One doctor can definitely do the trick! ;) I am so glad you discovered my blog! Keep in touch... hugs!

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  2. Hey there birthday girl :) I've just got one quick question. How do you keep your mouth from getting completely dryed out? Can you rinse and spit? Or any other great methods... Thanx !

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    1. Hi Kristen! I use special dry mouth products, gels, mints, mouth washes, mouth sprays, and tooth paste! But I can also rinse and spit! I even do that with food if I really want to taste something! lol ;)

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    3. Thanks for hitting me back. I really appreciate it. I hope you were able to experience some birthday cake, and or ice cream. Keep it up girl. Thanx for keeping us informed :))

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  3. Hi!
    Wish you many many happy returns of the day!

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  4. Hey there! I'm new to the blogger world and came across your blog recently. I gotta just say first of all happy birthday (better late then never right)! :) I turned 24 this summer too. Its strangely awesome in a way to peek into the life of another young person with health issues galore living life with a smile. So thank you for sharing your journey!

    God bless, Rebecca

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    1. Hi Rebecca! It's so nice to "meet you!" :) I always love connecting with other patients. Thank you for taking the time to read and comment! Find me on Instagram if you have one! @thetubefedwife Hugs!

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