Saturday, June 25, 2016

To The 'Well Intentioned' Individual Giving Medical Advice

You are my family, my friends, my social media followers, and sometimes even strangers on the street. I am grateful that you care about my situation enough to share your knowledge in hopes that you will ease my suffering. Thank you for displaying what you believe is kindness and compassion towards my difficult circumstance. I know you mean well, and that you honestly believe you can help.
There is only one problem...

You often become abrasive, and lose understanding that this is my battle, my fight, and my body. I have found your relentless comments on every medical update I post, your strong opinions on my social media accounts, and even private messages conveying that you “know how to cure” my incurable disease. You tell me I am making mistakes in my treatment, and that if I were to just “treat the root cause, leave western medicine behind, and take special supplements, oils, and herbs” I would be disease free. You imply that my treatment choices are the reason I am still sick. 
Your harsh stance makes me uncomfortable, and is not helpful or supportive, but hurtful. 

Please understand I am open to alternative treatments, but also be aware that I have a fast progressing illness, and taking the time to experiment with “miracle cures” could actually cause my organs to fail.  I know western medicine is full of toxins, and poison, and will destroy my fragile body if my disease doesn’t get to it first, but for now, it is my most viable option. When my health spirals, these drugs keep me alive; my physicians prescriptions keep me with you another day. Please accept that your “cure,” though it may have worked for your cousin, or dozens of people in a online forum, may not be right for me. Every patient is unique, and every body respond differently. While an oil may have relieved your pain, it could cause me to go into anaphylactic shock. While a diet may have improved your quality of life drastically, it could cause me excruciating pain as my body doesn’t properly digest and I am on a feeding tube. While the approach to medicine you swear by may have put your disease into remission, my body may reject it and lose valuable organ function waiting to see results. My treatment choice is literally life or death.

You see, I am in no way against your treatments, I am actually intrigued by most of them and hope I am stable enough someday to experiment with them. However, they are typically expensive, not covered by insurance, and require in many cases to attend treatment in another state, or county. As many patients battling illness, I am extremely tight on funds and cannot physically, or financially afford your experimental, ‘no guarantee’ treatment at this time — It’s true, not even western medicine is guaranteed, but at least the statistics are in my favor. Possibly, once I am medically stable enough to travel, and have extra money, I can use your ideas to help improve my quality of life — but right now my focus and my funds must be on staying alive


Next time you feel the urge to give medical advise please ask yourself these three things:
1. Is my advice physically possible for the patient?
2. Is it my place to give advice?
3. Is now the appropriate time to give advise? 


Then ask yourself this one very important thing:
1. Am I respecting the patients decision?


By using these simple guidelines you will take unneeded stress, judgement, and negativity, out of a patients already hectic life. Remember that we are battling our bodies, and if we had the choice we wouldn’t be sick at all. You have no idea how hard of a decision it is to use one evil to fight a greater evil. Hooking up to that infusion full of chemicals is not anyone’s first choice — but sometime it is the only choice that generates the ability to live another day. There will come a time where I may ask for advice, and I know you will be waiting in the wings — for that I am appreciative. 
Instead of continually pursing me with your opinion on how I should be implementing my treatment, show me support by accepting, and respecting my decisions.

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!

Thursday, June 9, 2016

Cytoxan Round Nine & The ER Visit From Hell

Tuesday I had my ninth round of Cytoxan ...It is incredible the difference a day makes in the life of someone with a chronic illness. Monday I was on the news with the only trace of illness being the thin tubes running from my dress, while Tuesday I looked like death, and ended up in the emergency room with a respiratory rate if 5. (Yes, you read that right. 5 breathes a minute.)
While flushing my port the oncology nurse mentioned it was a bit harder to flush than my last round, which wasn't a surprise to me as I had noticed that it had been a bit harder to flush over the past week. The blood return in the port was still fabulous so we didn't worry about it much and continued with the infusion. The actually infusion went off without a hitch, though I began to feel the effects of the drug much sooner than I normally do. Once at home I rested on the couch and took the afternoon easy with a light nap. About three hours after returning home I noticed a pain in my neck over my port side; the pain eventually spread to my armpit, and down the right arm. As the pain intensified I started to feel a bit light headed. I figured I possibly had a blood clot that had been dislodged from my port, though it was unlikely; I decided not to take the chance with my life and head to the nearest ER. Noel had left for work only minutes before so I enlisted the help of my kind neighbor who took me to the nearest hospital. Upon arriving at triage the pain had intensified, my breathing was labored, and I was having a hard time standing. The Triage nurse actually caught me before I lost my balance and quickly brought over a wheelchair for me to rely on.

I explained the situation, jugular/arm pain, increasing dizziness/lightheadedness, and labored breathing. The nurse took one look at me and got on her phone before I left the room, "Hey, get room 16 open immediately; we have a patient that needs to be roomed now." She hung up and told me they were working on getting a patient discharged and I would have the net room. They wheeled me out to the waiting room barley conscious. I waited, and waited. Half an hour passed and a woman complaining of a deep cut finger with a large bandage went into triage and never came back out, meaning she was placed in a room immediately. Why they let me sit in the room while others were placed before me in my condition is beyond me -- finally I was wheeled back to the emergency department, only it was in "the nose bleeds" where there was only one nurses station, no monitoring equipment, and was away from the actually emergency wing. My heart sank. The nurse who wheeled me back asked if I could get up to the bed from the wheelchair and I told her, "I don't think so." She helped me onto the thin table which had no railings up, nor did she put them up as she left the room to fetch a gown. Suddenly I got very nauseous, I was wearing a mask to protect myself from germs and attempted to rip it off in time, but to no avail; vomit came poring out of the mask as I turned my head to the side to finish over the bed.

Next thing I know I was looking up at the ceiling with three nurses above me frantically calling for help and trying to get me off the floor. After vomiting I blacked out, fell off the bed which had no rails up, and slammed my head on the ground. The nurses got me off the floor, but I was very out of it. They tried to get me changed and explained that we would be moving to a room where they could monitor me more closely. I told them my head hurt -- it really hurt. I found myself in Trama Room 3 after the incident with a lovely nurse who watched me like a hawk. About twenty minutes after the incident I got very tired -- next thing I know I was being shaken awake by my frantic nurse, "Chanel? Chanel! Can you hear me? Wake up honey? Chanel! Can you hear me?" I gasped for air and woke startled from yet another black out. My stats had alerted the nurse who had run in to find me on the cusp of unconsciousness. My respiratory rate had bottomed out at 5 and my heart rate had dropped to a measly 50 bpm  (My average is 89), all obvious signs of a concussion. At no point did the ER department, nurse, or physician address the fact that I had fallen due to negligence and now had a concision; no CT scan was done, no alertness or neurological tests, and no mention of the word "concussion." I lied in the bed and struggled to stay conscious while already fighting the issues I was admitted to address. The physician ordered a basic blood panel, and an ultrasound to check for a blood clot, all of which came back clear of any abnormalities. While I was there I ended up losing just about every bodily fluid without intention. Not only was I dry heaving uncontrollably, I soiled myself in the process. After a few hours they decided to send me home, but only under the supervision of another adult who could "make sure I was arouse-able." I was also told I would have to come back the next day to get my Port placement checked by Interventional Radiology, and would need to schedule an appointment with a cardiologist who could further diagnose my issues the emergency doctor could not..

Frightened and shocked at this horrible experience, I luckily had a pre-planned appointment with my GI and Neuro the very next day before any of this had happened. My Neuro preformed a quick neurological exam after I complained of the fall on my head and found some obvious abnormalities. I was completely unable to close my eyes and touch my fingers to my nose, along with other simple tasks. "Yeah, it's absolutely possible that you have a concussion," she said. My GI who I saw next addressed my incontinence issues and preformed a rectal exam. She found that the muscles of my anal sphincter where extremely weakened, which she said is an unfortunate complication of Scleroderma. I asked her what I was supposed to do?! I mean for heaven-sakes I am 24 years old and I cant keep pooping my pants every-time I sneeze or walk too fast! She told me she could refer me to Pelvic Floor Therapy but doesn't believe there is much muscle left for the therapist to work with. That was a bummer. Next I headed immediately over to IR who checked my port placement. They said everything looked normal, but didn't dress my needle correctly which lead to blisters the next day. (Yes, my skin is that sensitive.) The next I saw the cardio, who based off the "in office one second long EKG", told me I was probably fine and to head home. I basically expressed that, that wasn't good enough so he settled on coming back for an Echocardiogram next week, as well as an MRI.

For those of you wondering, I have already contacted the patient relation/safety representative at the hospital regarding the railing incident, and lack of concussion acknowledgment. I have been counciled that I should look into the situation further, and get a lawyer for "medical negligence," but I honestly do't have the energy with everything going on in my life. I am exhausted, miserable, nauseous from chemo, and have a huge headache. What a week.

Monday, June 6, 2016

The Tube Fed Wife on Q-13 Fox News

Today was a huge day in my world -- I was on the news! For years my goal has been to share illness awareness with as many individuals as possible, and thanks to my viral video last month I had the chance to do that today with the entire city of Seattle! Q-13 Fox News graciously invited me to preform a live Q & A segment on their busy morning show. I had the fabulous opportunity to sit down with Travis Mayfield, an incredible caring man who has dealt with heart wrenching hardships in his own life. While the interview did not exactly take the direction I thought it would, I couldn't be more pleased with the way it turned out! Hopefully it can alleviate the stigmas around invisible/hidden disabilities in our community, and grow compassion for these individuals.
To watch the interview follow the link here: Fox News Interview.



Oddly enough, as we were exiting the building and were about to enter our vehicle, which was parked in a handicap stall, we were confronted by a woman who had just pulled up in a car also displaying a handicap placard. She drove her car right up behind ours and started loudly accosting myself, and my small group. She stated that this was, "a handicap spot and only for those with disabilities, and we had no right to park there." She refused to leave her vehicle, and continued to yell at us for a good 4 minutes as we attempted to explain the situation. Being completely fed up I walked right over to her window and told her, "I have ever right to park here Mam, I have a terminal illness and my internal organs are ravished. I actually just filmed a segment about bringing awareness to people like you who judge those of us with hidden disabilities!" I then showed off my feeding tube and central line and told her to go watch my interview! lol She was obviously flustered and extremely embarrassed by her actions. I was understandably pretty upset, and definitely yelled, as did my party, during this fiasco.

I mean come on! What incredible hilarious timing that we would be leaving a news interview about the very subject happening only moments later in the parking lot! Eventually, the woman who turns out was an employee of Q-13, profusely apologized and told us that this experience had taught her not to judge those with disabilities she cant see. She admitted she thought I looked fine, and that's why she got so upset and defensive about the spot. I explained to her that, that wasn't an excuse for the way she treated us, but forgave her. Hopefully as she goes on through life, and after she watches my segment, she can be more compassionate to those fighting unseen battles. I was grateful for the real life opportunity, and hope next time I can handle it with a bit more grace! ;)