Friday, January 3, 2020

New Year 2020 Update

Happy New Year!

The last couple of months have been spent adjusting to life with my new J tube. Recovery was long and painful honesty. I would say about 7-8 weeks out from surgery I was finally able to resume my normal activities without pain. The stoma is healing really nicely and I have had no 'feeding tube' emergencies since this tube was placed. I did have a few minor clogs because my formula is so darn thick, but nothin a little at home Clog Zapper couldn't handle. The most difficult part of the last couple of months has been the large stitches holding in my tube. The way my surgeon placed my J tube, the stitches are the only thing holding it in.

About 8 weeks in my stitches started to become extremely aggravated. They were weeping and starting to tear through my skin. They all created massive hypertrophic scars. I couldn't take it anymore, plus was very worried about infection. I cut out the remaining stitched. My tube immediately fell 6 inches out of my body - luckily I have about 45cm of tubing inside me! Yikes. I taped the heck out of it and went into the clinic the next morning. The skin was too degraded to place stitched back in the same area, so we had to tilt the tube up a bit so the new stitches wouldn't bother the old healing sites. This was quickly done in office. Unfortunately, my body has already rejected those as well -much faster than the initial stitches. About 2 weeks post that placement the new stitches began to weep, tear, and become hypertrophic. I called my surgeon's team and explained that external stitches are not an acceptable long term solution for me. Thankfully, this failed set of second set of stitches finally changed his mind on the "stitches are a long term solution," idea. Hallelujah! My surgeon and my GI are working together to decide which type of tube they want to place and when. It will still be a J tube, but will have an internal bumper that way stitches won't be necessary. Don't ask me why this wasn't done in the first place, I was asleep and have no idea! lol This will be a quick tube swap done in IR. I am hoping this swap will improve my range of motion since the stitches right now severely hinder that. I have no idea when this will all happen since the holidays really fudge up communications between my doctors.

I met with my pulmonologist a couple weeks ago to see how the Rituxan is affecting my lungs. Great news - we are FINALLY starting to see improvement! My spirometry has improved! It's a small percentage, but definitely the right direction. I am thrilled! MY DLCO hasn't changed much, but stable is a good change in my mind! There was also nothing new on my CT. So, as of now, I can say the Rituxan has stabilized my lungs to a totally livable function which does not require the use of oxygen at rest OR activity!

GI symptom wise, things are about the same.  I am able to tolerate a little more orally now that I am finally receiving viable nutrition. It is amazing what proper nutrition can do for the body, isn't it? While the only progress I've maid is non-dairy smoothies, it's definitely progress. I cannot enjoy them entirely without symptoms, but at least I am not projectile vomiting every time I try one now. Success! My smoothie attempts aren't always successful... the other day I was violently ill in a thrift store bathroom because I attempted a new ingredient that morning. Embarrassing. lol I am so excited to enjoy even the tiniest bit of oral intake.

Other than that, I have been getting lots of rest, reading lots of books, and spending time with family.  I want to thank everyone who has assisted with my Amazon wishlist. I am humbled by the outpouring of support my family has received. My life is immeasurably easier because of those items. Actually, the generous individual who sent me a bunch of Clog Zapper actually saved me multiple trips to the ER! Thank you, from the bottom of my heart.

The beautiful images are courtesy of Body-Love Photography by Natasha Komoda. She is a local Seattle photographer celebrating the human body. My session with her was transformative and therapeutic, to say the least. For more of these powerful images feel free to check out my Instagram. To learn more about Natasha's mission, and to help her fund sessions for other low-income individuals, check out her website at: https://www.natashakomoda.com/bodylove

P.S. Wow! I turned three today! January 3rd 2017 I received my beautiful new stem cells. I am so happy to leave the 'terrible twos' behind! hehe This grueling treatment was supposed to be my miracle; it was supposed to keep my disease from progressing for much longer than two and a half years. I would be lying if I said I wasn't a little bit bitter... but the truth is I DID get my miracle. I am HERE! I am still alive. If I hadn't have had the transplant, I wouldn't be. This extra time is a miracle no matter how it has unfolded. So, while my nearly symptom-free years were fleeting, they existed - and for that I am grateful.

Hugs!

4 comments:

  1. You are so inspiring and beautiful, happy 3 rebirthday.

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  2. I agree totally - Happy 3 Rebirthday! I can only hope that as my disease progresses, I'll have as positive an outlook as you. You go girl! L.

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  3. Glad to hear you are improving. Thank you for the update. I’m sorry it’s been so difficult. My doctors are now thinking I have scleroderma. This is after so many years of alternative diagnoses:(. They want to start me on Ritoxan. Everything but a slightly elevated ANA is negative. It’s like the blind leading the blind. You mentioning Ritoxan caused me to vent a bit. Much love and big hugs 🤗❤️

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