Monday, April 3, 2017

day +90 post hsct update

If you follow me on Facebook, you know I am much better with updates on that platform! lol I am sorry my blog has been the recipient of so much neglect. Honestly, I have been busy living - truly living! I even start a (very) part time job tomorrow guys! Currently, outlets like Facebook, and Instagram seem to be an easier, quicker mode to update my readers. Plus, chemo fog is still incredibly thick, and busting out a blog post isn't as easy as it used to be - darn chemo brain! lol I'll take it over the oxygen and feeding tube any day though! ;)

My last update was way back at day +50 after a few boughts of CMV. I am happy to report the CMV hasn't come back, however, new problems seemed to arise in the past 40 days. My bone marrow stopped producing for close to 3 weeks, which caused my counts (blood levels that indicate my immune system strength) to plummet back to non-existent! It had my transplant team pretty worried. Talk of starting an emergency treatment such as IVIG was being thrown around. Yuck! Luckily, we figured out the low counts were due to a medication I had been taking that, in a small number of patients, can suppress bone marrow production. Since I discontinued the medication my counts have begun to rise! Woohoo! I am still no where near having a normal immune system, but it's better than none at all! I got myself some delicious ice cream to celebrate.

I had the absolute incredible opportunity to film with the BBC for a documentary series called Amazing Humans. The videographer flew all the way from London to film a woman named Sara, who provides free Henna Crowns to patients suffering hair loss. I was lucky enough to be the recipient, and share a bit of my story! Her kind act empowers patients - and turns them into Queens! It was a fabulous day, and my crown was breathtaking! The video recently aired on BBC and has spread to all corners of the internet! Woah - I am in a viral video! lol How crazy is that?!

I recently began writing for an awesome company called Clara Health. I wanted to link a few articles I wrote since I think they are very important for patients! Their website helps connect patients to clinical trials on one, easy to use platform! It's a million times better than Clinicaltrials.gov, but has all the same information! Super patient friendly - It is amazing. Here is a feature I wrote demystifying a bit of the clinical trial experience, and here is another I wrote about my personal experience as a patient undergoing a clinical trial. If you are interested in branching out of the, "standard care" offered by your clinic, I highly suggest you check them out!

Health wise, I seem to be pretty stable, though some recent stress has caused a bit of a digestive system flare. I've been aspirating a bit, which is never good. Let's hope it all works itself out soon so I don't cause damage to my lungs! My lungs, and POTS still seem to be steady - I still have symptoms, but no where near as severe as they were pre-transplant. My body has been extremely sore, and many of my joints feel as though they are out of place... I have been assured that this type of pain is normal post HSCT. That sucks. I find myself taking Advil often, which I never used to do pre-transplant, so that's saying something! Due to the pain sleep has been pretty non-existent. I see my scleroderma specialist from UCLA next month, and I cannot wait to show him my vast improvements! The transplant has improved my quality of life very much, and I am so grateful for however long this miracle lasts.

3 comments:

  1. Glad to hear that you are starting improve your quality of life since your transplant. I have been following your blog/instagram for about a year, and I love to see all of your updates. Your henna crown is gorgeous! I bet that was an incredible experience.

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  2. I wrote paragraphs about how your journey has affected me, but shorter is better. You are unbelievable. Your strength in dealing with your conditions has been absurd. You've defied every expectation. Your winning your life back. You are likely the most amazing individual I have ever known. Your success will pave the way for better lives for many. God bless you.

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  3. You are simply unbelievable. Your triumphs will assuredly be a lesson to physicians and an enormous boon in the treatment of scleroderma patients worldwide. God bless your tenacious heart. God bless you.

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