GretchCannon: Health Update - Surviving a Serious Blood Clot

1.17.2019

Health Update - Surviving a Serious Blood Clot


Happy (belated) New Year friends. I have been pretty MIA since even before Christmas, because I had a serious health scare, and am hopefully finally on the mend. I wanted to post about this and provide a health update, not only to let everyone know what happened, but always to raise awareness and to be vulnerable and transparent. 








So, Monthly Plasmapheresis had been helping my Autoimmune Encephalitis via my Hickman catheter along with IV then oral steroids since August of last year, following an awful relapse in late 2017. Before the holidays this year though, I couldn’t breathe well - I thought I had a sinus infection & went to the ER. They sent me home on an antibiotic. A week later, things worsened to where I could hardly breathe, stand, lay down flat or sit up straight because my neck & upper body (abdomen, arms, neck, face, chest) were swollen to at least 3x their size. I went to a 2nd ER and a CT scan showed I had ”Hickman Catheter Associated Thrombosis”, a blood clot around or blocking my SVC (superior vena cava) vein, in turn blocking the blood flow to my entire upper body. I was put on a blood thinner IV and then released on an oral blood thinner on Christmas Day. 

Tough Christmas, but I was told it would take “a while” to see any improvements, so I was hopeful and tried to make the most of the time I had with my family and loved ones through NYE. About a week later, I noticed the swelling getting much worse and my breathing getting more difficult, so I went back to the ER. At the hospital they said the oral thinner failed to dissolve or break down the clot and I had "Superior Vena Cava Syndrome“, where my clot was blocking blood flow by 95%! I didn’t realize this alarming fact until much later because I was in such distress and also didn’t want to read or scare myself further and so I am still processing how life threatening and serious this was.

I had "Catheter Directed TPA Thrombosis" to treat the clot (a wire catheter was inserted inside my upper right arm across and into my left chest with strong, dangerous medication that would hopefully dissolve the clot). They later went in my vein again to take pictures, which showed that the vein was still 75% blocked 48hrs after the treatment, mostly due to the shape the clot grew in - sort of a spiral scar tissue wrapped up and down the vein. Who knows how long this clot was growing on my vein and catheter.. possibly started as early as August, and even though the Plasmapheresis was making me so much better, the vehicle used for it was slowly killing me?! The next day they decided to do a “Cavogram Angioplasty”, where a small balloon was inserted and opened  in my vein during the procedure so blood could flow a little more freely again. After the balloon was removed I showed an improvement at 50% bloodflow.  I also had my right lung / pleural fluid drained out. Just way too many scary new procedures and experiences I had to endure in such a short time day after day. I felt like yelling “Mercy!”, that I couldn’t take it anymore and maybe God would let me have some relief. I am just so glad I was at a good hospital and under the care of a great medical staff.

I continued on an IV blood thinner, and literally over the course of a few days, despite drinking barely any water due to sedation prep, I shed 20+ lbs of fluid my body was holding in my head and upper body because it couldn’t route through that vein.   Check out some of the photos. I am still in total shock. My arms and head wouldn’t move before, my Mom bought me maternity clothing from Target & I couldn’t move much without feeling like I was gasping for air. I slept on the couch to sit straight up, and I just was very uncomfortable and impatient, scared and frustrated.

I was released last Sunday on “bridge” blood thinner at-home injections to get me off the IV, and just moved on to an oral anticoagulant to break down the blood clot more and hopefully continue to improve, or at least make sure the vein doesn’t close up again. I was in the ICU from 1/6-1/12 and on 1/13 I finally moved to the next area up and was able to sit  in a chair for a while and walk assisted to the bathroom. In the past I’ve had some terrible autoimmune scares, a seizure and coma, chemo and angiograms, literally losing my mind and living being completely disabled due to my lack of brain activity and stupor. But this was different, a very close call to death if not treated properly & the progress of breathing better and then sitting up and then finally being able to move out of that bed after a week of trauma was incredibly hard and emotional. I got so overwhelmed and cried and cried - in fear of what all had happened and relief that these were the hard steps that I would take to try to get back on my feet once again.

Looking ahead - we wanted to avoid a stent being placed because it’s apparent my body doesn’t like foreign objects inside of it (breast implants, catheter, etc..), but I’m hopeful my Autoimmune Encephalitis symptoms have and won’t relapse from this - my steroids were upped to protect me from that, but the fear is always there that my body could fight itself again in the confusion. But, my swelling and breathing is much much better and I am home now setting up follow up appts - there IS a risk of the clot coming back or not dissolving, but hopefully the medicine will work and I can put this behind me. I am weak, but my mind and spirit are strong and I felt like I needed to share this story, for me to process everything and for you to be aware, or to motivate you in a time of hopelessness. Life is hard, not just highlight reels, and everyone deals with something.

Thank you to my loved ones that were by my side or came to see me or checked in on me daily. I feel like this is another near death miss and maybe only because I have so much love & support in this world and God has bigger plans for me - I  am here to keep fighting and pushing through. And in the process, I keep discovering more self love and grace. I hope to get back to my “regular” life soon.. not sure what this means for my Autoimmune Encephalitis treatment - but I am trying to see the good, be thankful I was persistent with the doctors and hospitals, even when I didn’t think they could help me, thankful I have a great support system and am never without love.

Let me know if you have any questions about any of the medical jargon, or even any of the emotional weight that comes with this and everything that has happened to me since late 2006. I have been told that I need to write a book one day, but for now, I have to share in bits and pieces with any small platform I have, because I feel it’s important to be real and honest and open.. and I definitely always want to help anyone who is going through something scary health wise, because we trust our bodies and when something fails it can be so hard to deal with or come back from. I need about 1 to 20 therapy sessions to start processing this and give love and hugs in person and in my heart to my wonderful loved ones, for staying with and visiting me, & to everyone else who was checking in with me or my family and praying for and concerned for me. 

XOXO, 
GretchCannon

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