I don't know about you all, but I feel like we're on the 56th day of January. lol I kid, but seriously. It has been a hell of a month that has dragged, and dragged, and dragged, and dragged... You get the picture.
After my J tube exchange my body just sort of revolted. My G tube stoma has been struggling with an infected abscess since the 7th. We've trialed multiple antibiotics. None have seemed to assist the infection for longer than a few days post the course. The last antibiotic we trialed, Amoxicillin, sent me into full-blown anaphylaxis. I have never had a reaction to this antibiotic in the past. Once my lips and tongue started to swell I had to administer an EpiPen and call the paramedics. They arrived quickly, which was a godsend, as the Epi wasn't calming the reaction as much as it should have. IV Benadryl was administered in the ambulance, as well as steroids and more IV Benadryl once at the hospital. I have never had an anaphylactic reaction outside of a hospital setting, so this was quite frightening. I was home alone and the reaction came out of nowhere. After 5 hours of monitoring, I was sent home to rest and recoup. I had a bit of a rebound reaction the next morning, but nothing serious enough to warrant medical attention. There is no doubt that EpiPens save lives, but wow, they really make you feel like absolute garbage for days on end. I'll take absolute trash over suffocating on my own tongue any day though.
I saw my Sclerodma specialist for a long-overdue visit. We decided to move my antibody therapy up to every five months instead of every six. This means my next Rituxan infusion will be at the end of February instead of March. My skin is continuing to soften which is wonderful and my joints have definitely been less inflamed. He had me set up an appointment to get Punctal plugs since my eyes are really struggling. These are small silicone plugs that stop your tear production from draining too quickly, giving the eye more moisture. It is a common severe dry eye treatment. Well, my body hated them, unfortunately. I felt like they helped increase my eye moisture tremendously, but my eyes become very swollen and red. It looked like I had pink eye - so they had to be removed.
I'll be changing out my G tube this week to see if that helps with the chronic infection. My doctors have suggested we may need do some more invasive debridement of the abscess, which would involve moving the stoma, aka do a new surgery for that tube. I honestly can't even fathom that possibility right now. My GI issues make me feel like I am constantly treading water. It is exhausting. I am sorry I don't have a more positive update. It's just been a rough couple weeks with one thing going wrong after another.
Noel and I are supposed to leave for our first vacation together in years Monday; I am just so worried my health will prevent it. Honestly, it was probably pretty ballsy of us to even attempt a vacation in the first place, but dammit, I just want to sit on a beach so bad! All I want is three days of blissful normalcy like any other vacationing couple. I know that's not our reality, but I can dream, right? Needless to say, if you've made it this far, you maybe can tell I am feeling a bit angsty. lol I've been talking to my therapist and PCP for a while about these overwhelming feelings and we decided to up my antidepressants. I really don't talk much about mental health treatment on this blog. I feel like that should change. Honestly, it is a huge part of life with a condition like this.
So, hi, my name is Chanel and I take mental health medication. I cannot handle my reality, this reality, without a bit of pharmaceutical help. Depression, anxiety, PTSD, they don't care if you have the most wonderful support system in the world, they will still grab you by the ankles and drag you into their bottomless pit.
Thursday, January 30, 2020
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!
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!