Friday, June 24, 2016

A Fork In The Road. Again. -- Health Update

I am sure you all have been wondering where I've been recently. Honestly, I've just been too exhausted and somewhat defeated to write a post. The last few weeks my health crumbled around me little by little and I shut down from the world a bit. After my hell of an ER visit the night of my last chemo, during which I got a concussion from passing out over the side of the bed that did not have rails up, my body went into full flare up mode. This means my illnesses went into overdrive and attacked my systems because they didn't know how to deal with the stress of a concussion along with chemotherapy symptoms.

My vasculitis purpura lesions.
Though I often post about Systemic Sclerosis it is unfortunately not the only serious illness that plagues my body. I have a disease called Leukocytoclastic Vasculitis that very infrequently rears its ugly head. Well, last week it decided it was time to bring some misery into my life, which kept me home bound for a while. Vasculitis is the inflammation of blood vessels so serve it causes them to become necrotic and leak, forming excruciating lesions called Purpura. In my case the purpura always manifest on my lower calves, making walking nearly impossible due to pain. I honestly have no idea how to describe the pain of these lesions -- the closest description would be to imagine the worst bug bite you have ever had, now pretend it was 1000 of them in one spot, then pretend it goes deep into your tissue causing internal bleeding -- but nothing actually bit you. Sounds great right? There really isn't anything you can do besides take steroids to reduce inflammation, though severe cases require Cytoxan treatments, which I already do. Basically my body just hates me and decides that no matter what toxin I throw at it, it still will cause destruction of my major organs. So yeah, that was an adventure. The lesions typically last one-four weeks, then dissipate. I upped my Prednisone for a few days and the pain and swelling seemed to subside a bit, so I am mobile once again, thank goodness!

I had an MRI last week to take a closer look at my cervical spine due to some decreased sensation in my extremities. I have yet to go over the results with my physician but, from the report I read it all looked pretty straight forward. Between C5-C6 I have moderate Degenerative Disc Disease with obvious damage, as well as straightening of the cervical lordosis. These changes could be due to 16 years of gymnastics injuries, but I guess I will never know! lol I am pretty sure my last MRI of the cervical spine showed something similar. For these reasons I don't believe that is what's leading to the numbness and tingling in my extremities, but I will find out more once I see my doctor next month for a follow up.

Today I had an Echocardiogram (heart ultrasound) preformed to rule out causes of my shortness of breath, chest pain, and irregular heart beats. My echo had actually improved in a few areas, but declined in a few too. It seems the Cytoxan helped my heart! Woohoo! My Ejection Fraction increased by about ten percent, my pulmonary pressures lowered, and a few of my valve regurgitations improved. I was extremely happy to see the results of this drug improving another vital organ. The only worse off results seemed to be the size of my left chamber, and a slightly prolapsed valve. For some reason my left chamber increased in size, which I am guessing was from the stress of my lungs declining so rapidly last year. It wasn't a huge increase, so nothing to worry about now thankfully. I am not sure why I suddenly have a prolapsed valve, but I will be talking to my physician about it when we follow up next month.

Last but not least, I got some big news from my Scleroderma Specialist through a phone call yesterday -- you know something is up when they call you at home. Unfortunately my CBC (complete blood count) has been very off the last two months. It seems my bone marrow cant keep up with Cytoxan and is failing to produce my white blood cells and platelets. My poor lab results had giant 'L's next to just about everything, Typically your counts bounces back about three weeks after chemo, but my bone marrow just isn't holding up like it should. Due to this my body is not produce very important white blood cells called Neutrophils which specifically fight bacteria. This is actually a separate condition called Neutropenia and can be very dangerous. It leaves me extremely susceptible to infection, even from my own "healthy" bacteria! Technically someone that is Neutropenic should not be around children, animals, public places, or the elderly -- basically just sit in a sanitary bubble with a mask on.
So now the big news: since my counts aren't returning to normal between chemo rounds I am being taken off Cytoxan. I am devastated, and happy at the same time. Typically when a chemo patient goes through low WBC the physician has them restart at a lower dose, but we have already done that once and my WBC count still can't keep up, proving the Cytoxan is damaging my bone marrow at unhealthy levels. Hopefully we can find a comparable medicine, though Cytoxan is the top treatment options besides a full blown Stem Cell Transplant. I am currently unsure what the future holds, but trust my specialist and know he will have a plan when I see him next month. Hopefully my body will hold out till then.

Oh, and in case you're curious. I attempted to take action against the hospital that didn't place up my bed rails, but to my surprise the physician lied in the chart notes stating "patient didn't hit head," thus creating a hearsay situation; skilled physician against sick girl. They did state I "fell to the floor" but followed up with "didn't pass out and didn't hit head" which is all blatantly false. They also never documented my episode of low RR followed by unconsciousness. Basically I am SOL. I have filed for a documentation amendment, as well as called the Washington State Department of Health and filed a formal complaint. Luckily I have proof I hit my head, as well as two physicians verifying a concussion. Hopefully this hospital will be forced to take responsibility for their falsified documents and negligence!

14 comments:

  1. Continued prayers. The hospital and Dr's should definitely take responsibility for what happened. I hope it all works out in your favor. You are so strong amist your illness, keep on fighting! Thank you for sharing your story.

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  2. can you drink supplements and vitamins? are you allowed to? Prayers! thank yoi for your blog. My daughter's case makes me so worried tube fed and no reason for it. But your blog inspired me to be strong for her! thank you and prayers to you my daugther and everyone braving in sickness!

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  3. I have systemic sclerosis as well but I am being treated with Cellcept (an immunosuppressant) and was told that this treatment is just as effective as Cytoxan only without all the nasty side effects. Have you heard of this? I am also heading to Seattle on the first for a Stem Cell Transplant consultation so we'll see how that goes. Anyway, thanks for sharing, you inspire me to keep fighting for my life with this horrible disease!

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    1. Hi Rachel,
      Yes I have been on Cellcept twice and failed treatment. It did not help halt progression of my scleroderma. I have heard that a few physicians are now saying it is as strong as cytoxan which surprises me! I am so glad patients are seeing such wonderful results without the horrible side effects of high dose chemo. Keep me updated on your Seattle SCT visit! I would love to hear about how it goes. Hugs.

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  4. As a reader and "cyber mother" to you in my heart, what do you need to make your day a bit brighter? Encouragement I can give but seems so "typical"...but I really respect your honesty about the crap you face. It sucks. You are making a mark though-giving readers who suffer or know someone that is, with a pain in the butt condition, knowing we/they are not alone. You are not alone. I'm a Christian-I will pray for you (really lol). Don't worry, i won't give a sermon 😜 Hang in there.

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    1. Aw! This made me smile so big! Thank you :) It was EXACTLY what I needed to make my day brighter! Hugs.

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  5. Always in my prayers daily...ALWAYS!!!

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  6. I do not suffer from a serious illness, but my life has seen its share of trial and difficulty. You make me want to lean more on the Lord, to seek HIS peace, instead of trying in vain to run my own show. As a sister in Christ, I thank you from the depths of my heart! 😍

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  7. Currently I'm suffering from a severe Fibromyalgia flair and have been pretty depressed. Just want to check in and make sure you are okay health wise mentally. Being chronic is awful and I'm praying that your Dr comes up with a great treatment plan.

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  8. Currently I'm suffering from a severe Fibromyalgia flair and have been pretty depressed. Just want to check in and make sure you are okay health wise mentally. Being chronic is awful and I'm praying that your Dr comes up with a great treatment plan.

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  9. After I struggled to read your post in the font in which it displays, I clicked on "e-mail to a friend" and learned that the copy of the article displayed was in larger and darker print. I then decided to post a comment about this issue and the icon that usually displays to allow me to increase the font suddenly appeared, which it did not in the original post. I thought you would want to know this and perhaps include directions in your future posts for people who have trouble seeing to click on 'send mail' or 'post comment' in order increase the size of the font. I hope this is understandable!

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  10. After I struggled to read your post in the font in which it displays, I clicked on "e-mail to a friend" and learned that the copy of the article displayed was in larger and darker print. I then decided to post a comment about this issue and the icon that usually displays to allow me to increase the font suddenly appeared, which it did not in the original post. I thought you would want to know this and perhaps include directions in your future posts for people who have trouble seeing to click on 'send mail' or 'post comment' in order increase the size of the font. I hope this is understandable!

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  11. I had disc degeneration in my cervical spine (I still have it in my lumbar spine) along with a lack of curvature in the cervical spine. This sounds similar to what you described. After some time I began experiencing a lot of pain an numbness in my arms and hands. After some treatments with a sports medicine Dr I did see a little improvement. After a neurosurgeon did his thing I've seen a much bigger change. So, it is possible that the disc issues are at least contributing to the numbness and tingling (in arms or hands at least). If so there may be options to reduce those symptoms. :/. Incidentally the medicine I was given for the nerve pain in my extremities has helped my fibromyalgia too.

    Flares seem to be a trend lately. :(. I hope yours eases soon.

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