Saturday, June 17, 2017

day +165 post hsct update

How insane is it that I will be 6 months post transplant in two weeks?! Im honestly having a hard time processing it! lol I am incredibly amazing how fast time has flown by, and how little I have been in a physicians office! Remember when I had upwards of 16 appointments a month! Yes, sixteen! I have only seen a handful of my doctors in the past six months, totaling about five appointments. Its a truly freeing feeling!

I realize post transplant, my blog posts have become so far, and few between, as I do not have frequent appointments to update my family, friends, and readers with. For this reason, I have been doing most of my medical updates via Facebook Live. To visit my FB page please click the link: Facebook.com/thetubefedwife I have decided to format my posts a bit differently moving forward, since there will not be as thorough of content. I will do more of the "Buzzfeed" format which consists of bullet points, and lists. Unless of course it is an opinion piece instead of an update. This will cut down on my time spent behind the computer, as well as your screen time as the readers. I would love your feedback on this new transition in the comments below!

April

  • I started a part time job! I am an office manager for a tech company in Seattle, and I absolute love it! My body holds up pretty well, as my hours are smack in the middle of the day. This lets me continue healthy sleeping habits for optimum recovery, while still venturing out of the house a few days a week to contribute to society! lol It is in the cannabis space, which as you know is a huge passion of mine! It has been such a beneficial treatments for so many of my ailments, including: nausea, depression, anxiety, pain, etc. and is why I truly believe I have ket such a level head through my very difficult diagnosis. 
  • My counts still sucked. My WBC count and ANC were no where near where they should be. The team says I may just be a late bloomer...

May 

  • May kicked of my summer speaking series! I presented an award at the Washington State Scleroderma Foundations Gala which was an absolute blast! I love taking part in this awesome event every year! 
  • I GOT MY PORT REMVED! Yes, you heard me, I am officially COMPLETELY medical device free! My transplant team decided it was safe to remove my port, so I jumped on it as soon as possible! lol The surgery was done wide awake in IR. I got to sort of watch, which was amazing! The numbed my chest with local anesthetic, cut me open, and pulled the thing right out! My surgeon was incredibly nice, and even let me keep it! Plus, I got to listen to the guardians of the galaxy  volume two sound track, which was a major plus! It was emotionally to see each small needle stick it the reservoir - each infusion, each round of chemo, each bag of saline that kept me alive was accounted for. The surgeon who removed it goes; "wow, that was a well loved port!" lol Yes, yes it was! It fearlessly took 3 years of treatment - however, I was not sad to see it go! ;) 
  • I had my first follow up appointment with my Scleroderma 
    specialist who referred me for the transplan. It felt so good to walk into his office without my feeding tube, oxygen, or port! It was especially fun to go over the medications with my nurse and exclaim, "No!" when she asked me if I was sill taking my laundry list of meds! lol I am dow to 5 medications, out of 17 pre-transpant meds! My doctor was still pretty bummed my transplant wasn't able to be preformed in Seattle with a few of his colleagues, but he was honestly just so happy I had it done, period. My darn organs prevented my ability to preform the transplant in Seattle, luckily Chicago accepts pretty heavily damaged organs! I of course was extremely excited to show him my progress, however he was cautiously optimistic, as he believed I may not be as well off as I was demonstrating. He felt I was a bit over-excited, and expressing I was better off than I actually was. I assured him that wasn't the case, but upon clinical evaluation, he was right. My skin score was a bit worse in places, and he could still make me throw up in office with the touch of a finger! lol (Seriously, I have a spot on my abdomen that, due to my damages LES, will cause me to vomit when pressure is placed. It isn't cute! ;) He always has the trash can ready though!) He did however acknowledge the vast improvements I have seen, such as my ability to now swallow an array of foods (though not all foods!!), the loosening of skin on my fingers, and my ability to more easily breathe. Like I said though, he is very cautiously optimistic, as he wants to do a full organ rundown before he truly appreciated the benefits. I appreciated his dose of realism, as I probably need it! So in July I have quite a few tests coming up, such as: a bone density scan, a Echocardiogram, and an HRCT. My PFT will be preformed in Chicago during my follow up in June. 
  • I got my first cold and it kicked my ASS - Like royally kicked it. I know my team expressed that "normal people sick" post transplant would suck, but holy hell, I wasn't expecting it to be that bad! I was locked into bed for days, completely able to move. I had snot pouring out of my face, and was hacking a lung at all times! I was actually struggling to breathe so badly one day, I was worried my lung fibrosis was coming back, but it was just phlegm - hallelujah! Luckily I didn't end up with pneumonia, just a killer cold that took 5 weeks to dissipate! 
  • My labs still sucked, though my WBC count was closer to normal. My ANC still didn't want to budge. My team assured my by June they would be better!
  • Really, really horrible hot flashes, terrifyingly severe memory issues, and urinary incontinence began. 

June

  • June started off with seeing a physician about my hot flashes. Turns out my hormone levels are POST menopausal! Like, not even perimenopausal - my ovaries are that of a 55+ year old woman apparently. My FSH levels were extremely high, and my Estradiol was extremely low, indicated complete ovarian failure. So I guess my body dove into menopause hyper drive and tried blasting out the whole ordeal in a matter of weeks. It is literally awful. My hormones are so out of wack I am bawling one minute, and yelling at everyone I love the next. I ma not a very mentally stable, or kind person at the moment. It is exhausting not feeling like myself. I won't complain about no longer having persons though...  I have an appointment next month to chat about the possibility of hormone replacement. 
  • June 26th - 30th I will be in Chicago for my six month HSCT follow up. I will be preforming a PFT, a bunch of blood work, and seeing the researching physician - the one who saved my life with his groundbreaking trial. He and his team are saving lives that would other wise be lost! I get asked frequently about this trial, and if it would be right for other autoimmune patients. I do not have information on every autoimmune illness Dr. Burt works with, however; I do have information I can pass along to my readers about the Systemic Sclerosis Trial at Northwestern. Click the link here: https://clinicaltrials.gov/ct2/show/NCT01445821?term=scleroderma+and+HSCT&rank=2  The link details the strict qualifications one must meet to qualify for the trial, as well as how to get a hold of the team if you and your doctor believe you are a good fit. Note, this link details the DIScl2011 regimen, and I took part in the ASSIST I regimen.
  • My counts are NORMAL! Happy dance! My WBC count and ANC are in the normal level, all be it low normal, but normal all the same! 
  • I have become the target of intensive cyber bullying. Unfortunately, a former reader of mine has decided my story is somehow "faked." This individual has been harassing me for over eight months via all social media platforms, and most recently, has been contacting organizations I advocate with by email to express I am a, "phony who got an unneeded transplant." The funniest part is that my doctors ALL follow me on social media, and many of them reached out to express how ludicrous this woman is - and how I shouldn't be bothered by it because they, and I know the truth. I am lucky to have such an incredible team who cares about both my physical, and mental health. 
  • P.S. I have so much hair! Lol And by that I mean a very short pixie with no bald spots. 
  • I am dawn to two medications! OMG it feels so good to be dropping pharmaceuticals left and right! 

I am so excited to attend the Scleroderma Foundations National Patient Education Conference next month! I hope to see many of you there - Please come say hello so I can give everyone hugs! lol