Friday, March 11, 2016

Sometimes Life Is Really Awesome -- Health Update

If you have been keeping up with my blog the last month, you know that this week held a much anticipated moment. This week was my "halfway through Cytoxan" follow up with my lung doctor. This appointment could either be a breaking point, or a huge victory for me regarding the use of chemotherapy. 
I can tell you I left that appointment in tears -- happy, happy tears!


Snorkeling or preforming a PFT?!
Thursday morning I went in for my Pulmonary Function test, a procedure that breaks down the performance of your lungs. Ten months ago my lungs started to decline rapidly, suddenly showing evidence of Interstitial Lung Disease (pulmonary fibrosis) in both lobes, and a Chronic Obstructive Pulmonary Disease (COPD). Between my poor working diaphragm due to myopathy, and the decline in my ability to transfer oxygen from my lungs to the blood stream, I was placed on supplemental oxygen, unable to keep up my O2 saturation upon activity. Eventually the issue became severe enough that I was on oxygen 24/7 with my Diffusion Capacity (DLCO) dropping over 20% in function in a very short two month period. Lung involvement is the number one cause of death for Systemic Sclerosis (Scleroderma) patients, especially when it begins aggressively in the first few years of diagnosis. Many physicians will tell you the first five years of your diagnosis are the most important, laying out your prognosis, and the severity of your disease. Being only four years into my diagnosis, on a feeding tube, supplemental oxygen, and having a few less fingertips than I should, meant I would be even less likely to live the ten years I was given in 2011. Things were not looking good, hence the tough decision to start Cytoxan was made. I say "tough decision" because this drug is extremely dangerous in a patient like myself with fragile organs. It also has a very high incident rate of causing both Bladder Cancer and Leukemia. While Cytoxan has saved many patients, its results typical only last five years until the patients body begins to progress again -- and at that point they have already reached toxicity for this last resort drug, leaving them completely out of treatment options... That is the reality I may have to face down the road. However, as you might have inferred, the next five years at that point wasn't something I was sure I would live to see anyway, so I agreed to the treatment with the support of my Scleroderma Specialist from UCLA. 

In August 2015 my ability to transfer oxygen to my blood stream, and other organs was at 65% (DLCO), and the general airflow through my lungs was at 75% (FEV1/FVC). These numbers show evidence of both an obstructive, and a restrictive lung disease; having both trouble getting air into, and out of the lungs -- believe it or not those numbers are considered "mild severity." This Thursday my DLCO was 85% and my FEV1/FVC was still 75%. While my lungs still aren't functioning fabulously, I am getting 20% more oxygen into my body! That is a HUGE VICTORY! My Diffusion Capacity (DLCO) after six months of Cytoxan increased from a 65% to a 85% and I could not be more happy! I don't think my DLCO has ever increased in four years! As I expressed, I am using my oxygen much, much less and this is why. Cytoxan is healing my sad little lungs! All be it, they aren't perfect, but I feel so much better with that 20% increase of oxygen! My O2 saturation is staying relatively stable as long as I am not doing to much physical activity, or sleeping! haha *happy dance* In fact while I was preforming the PFT the technician did a double take on my DLCO values and said, "Wow, did you recently change medications?!" to which I of course chimed in with an enthusiastic, "YES!" 

As you can imagine my Pulmonologist was thrilled! He still wants me in every few months to preform a Pulmonary Function Test, as I still have obvious evidence of lung disease, but was delighted to say my lungs are "almost stable!" I haven't heard the word "stable" in regards to my health in years! Remember, stable doesn't mean "remission, cured, or healthy," it just means "not declining."  I am so thankful for my Pulm, he has fought so hard for me over the last couple years. He has always treated me with respect, and acknowledged the strong voice I have in regards to my health care. He likes to call my Rheumatologist my quarter-back, but in reality he does more for me than any other physician. He is always a simple email or call away, and never hesitates to assist me with any issues I have with my health, or health care team lol -- So thank you!

I am also really excited to report that after three years of struggling with weight loss due to my failing digestive system I have reached the goal weight we set back when we placed my feeding tube in 2014! I stepped on the scale to see the number 151 flash back and me and just about lost it! I have been working with my dietitian and physicians for years to hit the 150 mark, and I am finally there! At the climax of my weight loss I was 5'10" and 119lbs. I frankly looked like death; skin and pointy bones with the horrible paleness of severe malnutrition. I have gained 30lbs and feel amazing! My feeding tube is responsible for most of that weight but, within the last six months Cytoxan has increased my ability to digest, resulting in assistance with my overall nutritional status. My oral intake is increasing for sure, not perfectly, but something is better than nothing! Swallowing anything still feels like sticky peanut butter since my muscles no longer work, but at least once I get things down the are moving through my stomach! My SIBO is better too! I have been able to cut back my chronic antibiotics drastically, with the end goal being only using them during a flare up. 
Last, but certainly not least, my Prednisone intake is now at 7mg. So far so good. No crazy Vasculitis flare ups, or intense bought of inflammation. Yahoooo! By summer I should be off that horrible steroid -- and possibly be able to see my cheek bones again! ;) 

Oh, and one last physician update! My allergist and I caught up this week, and we came to a conclusive diagnosis: Chronic Urticaria. This literally just means I have hives a lot. He said it's actually really common, and just annoying! lol I'll absolutely take chronic hives over the other possible causes it could have been! I think that may be the nicest diagnosis I have. haha So I am on antihistamines four times a day to keep the welts, angioedema, and itching away.


Can't go wrong with Marc Jacobs -- it's a fact.
I feel my overall emotional status has been well lately too. People keep telling me my aura has changed -- that I seem more confident and happy, which I love! I feel that way too, so I am glad it shows. You want to know why I feel this positive change has occurred? I have been starting my Reiki sessions again, which I feel immensely help my healing process, not so much physical, but emotional. I always feel incredibly serine after, like the weight of my reality is somehow less -- Plus my Reiki Master is the best! ;) Thank you so much for the extraordinary gift of positive energy! I've been experimenting with different pain management, and beneficial mental health techniques as well. I have found that Cannabis gives me a much needed, tranquil break from the reality of constant pain and anxiety. I am able to sit back, forget my troubles, listen to good music, feel no pain, and just laugh. It's so peaceful, and gives me that break I desperately need to function happily -- when I am unable to do so on my own. The use of constant anti-depressants and opiates definitely weren't helping me, or my poor body that was being abused by their side effects. Yay for a useful, safe, organic treatment option that actually works. 

Plus I got a really adorable new backpack to hold my feeding tube supplies on Wednesday! Little things like that make me so happy. I hope everyone is having as good a week as I am having! :) And if you're not listen to '10,000 Emerald Pools' by Borns! It is my new song obsession... it's so serene. 

Hugs!

10 comments:

  1. I'm so glad you found relief in cannabis! Wish it was offered more widely in the US to pain and illness suffers of all kinds. Your face and lips are so full and bright and congrats on your weight gain and all of the new triumphs! xox Ashley

    ReplyDelete
    Replies
    1. Agreed girl! It is an incredible treatment! Thank you so much for your kind words! Hugs!

      Delete
  2. I'm so glad things are looking up! I always get worried in between your postings. Love the new backpack. I am OBSESSED with that song and Borns. My friend was lucky enough to score tickets to see him at SXSW on Wednesday and she's taking me. I'll try to get a video to share with you! Hugs from Austin!

    ReplyDelete
    Replies
    1. Thank you Gina! You are so darn sweet! :) Oh my goodness have a GREAT time at the concert! I'll just be over here in Washington very jealous! haha Hugs!

      Delete
  3. This comment has been removed by the author.

    ReplyDelete
    Replies
    1. Hi Kyra! Thank you so much! :) I was always so skeptic too! haha But it's all about finding a Reiki Master you have a connection with. Mine is a close friend who shares much of the same beliefs as I do, which I think greatly benefits the practice. It is the ultimate relaxation for me! I always love hearing from you girl! Big HUGS!

      Delete
  4. You must have stock in the pharmaceutical companies.

    ReplyDelete
    Replies
    1. Since I attempt to reply to all comments, I will do you the favor of acknowledging this. hahaha Thanks for the morning giggle! Have a great day! ;)

      Delete
  5. I'm glad you have a sense of humor. What I was trying to say: Really hope you could visit a homeopathic/alternative doctor to find the root cause of your Scleroderma. You're Too young to be misled.
    http://www.globalresearch.ca/the-evils-of-big-pharma-exposed/5425382

    ReplyDelete
  6. Good luck to you ! Just lost my true love and best friend hope you get better!

    ReplyDelete