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.

9 comments:

  1. You definitely should have Noel look into anything you can't and bake sure you have all of your paperwork rom the hospital and all of your documentation ready to go. I am sure we can find a pro bono attorney who would take your case!!! Heal... Rest... And call me when you can!!!

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  2. Thinking about you! I am so so sorry for your very HARD week. I hope things are MUCH better for you this next week. Do you have anyone working with you that can help to handle these type of things? As you mentioned you are not feeling well and don't have the energy...and someone who is dealing with an illness shouldn't be alone in handling legal issues when it comes to them being neglected. I am horrified that happened to you in the hospital! That WHOLE situation could have been handled VERY differently.

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  3. What a horrible experience! It seems like the medical community has really gone down hill lately. Granted, there are some good doctors and nurses still but it sounds to me like the ones you saw had received their training from a Cracker Jack box. Sorry you go through this-good to have it documented though, I think the statute of limitations is 7 years! Hope you feel better soon.

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  4. Wow, thats horrible !! I think taking them to court is the only thing they will understand. If they couldn't figure out that you needed care asap, then they need some more education, and the only thing they might understand is money. But I get that you don't have the energy for a lawsuit. I hope you are feeling better. I went the ER 3 times around Christmas as I couldn't breath, I was fine as long as I am sitting down, but I couldnt' walk 3 feet, without taking 15 mins to catch my breath. I had to put a chair between my room and the bathroom, so I could take a break on my way there, its next to my bedroom. Each time, they would say there is nothing wrong with me and send me home. Finally I was able to get to my doc, she took one look at me and knew something was wrong, wouldn't let me leave her office, sent me back to emerg. She sent me with a long list of tests she wanted done asap, and the last two got me admitted. I had multiple blood clots in my lungs, the tech said my lungs lit up like a Christmas tree, they were so full of them. I had been having the problem for months, and as I have wegeners, which causes clots, and a brain tumour, they should of checked it out further. It almost cost me my life, I know how crazy it can be dealing with docs and such. hope you are having a nice weekend, hugs.

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  5. Oh man, that's absolutely horrible - I'm sorry this happened, Chanel! I think it's very wise of you to think twice about which actions you'll pursue in terms of the hospital; as you said, you have to be careful with rationing your spoons and you've got an awful lot going on. While obviously it's crucial the hospital doesn't get away with this ridiculous and dangerous lack of care, please always put yourself first, ok? I hope the nausea is getting a bit better now and as always I keep sending all the spoons, lots of love and gentle hugs your way from London! Kyra xx

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  6. That sounds horrendous. I hate it when the 'first glance' of a triage nurse leads to a long wait and inappropriate monitoring. Poor you.

    I'm in the UK, so it's probably a bit different, but I'm grateful for Always Discreets pants (disposable and absorbent underwear).

    Actually, I just wanted to thank you for your oxygen tubing video. I've been miserable about the fat tubing that takes over my whole face, and figured I was just going to have to pull myself together and get over the shallow cosmetic concerns. Thank you so much for sharing and demonstrating the alternatives - I'm waiting for delivery of some Salter Micro tubing. Fingers crossed for getting my face back!

    Thank you again, and I hope you feel better soon!

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    1. I am so glad you found the video helpful! Woohoo! I hated those big ugly ones! lol ;) Isn't it awesome they make cute little ones!? Hugs!

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  7. The respiratory rate of 5 breaths a minute really has me worried. We keep missing each other when you do radio with Michelle Woodward and Ted Doshier over at Uplift Radio, but hopefully one of these days I'll meet with you and be able to share a hug. I'm Michelle's intern from Art Institute of Seattle, and your life's story is really touching. I really hope and pray that things get better. You're an amazing human being with a big heart and soul. Keep up the good fight and i'm sending good vibes your way. All the best ~ Jonathan.

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    1. Hi Jonathan! i hope we can meet soon too! Thank you for reading my blog and taking the time to comment :) Hugs!

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