Wednesday, July 13, 2016

The Future Of My Treatment -- Health Update

I know it's been a really ling time since I posted an update. Things have been a bit rocky and I just haven't been able to write about it all until I felt I had some sort of outcome for my readers, and family. I cannot thank everyone enough for being so invested in my care; it means the world to me to have such an amazing support group from all over the world. I got some big news this week... which I know none of you were hoping to hear but, it is the reality of aggressive autoimmune disease.
As you know I was pulled off Cytoxan last month due to severe side effects. It had damaged my bone marrow enough that I was not adequately producing WBC's leaving me Nutropenic more often than not. I am actually still quite low in my ANC, WBCs, and platelets almost two months after the initial decline. I also became very ill after my last few infusions, to the point where I was hospitalized after each round. Of course this couldn't continue so we halted the medication; after missing only one round of this life saving drug my body has started to fall apart.

I was scheduled for a Pulmonary Function Test last week which showed a 25% decrease in my DLCO (the ability to transfer oxygen into my blood stream). This is an indicator that my lung disease, Pulmonary Fibrosis, is active once again. My joints and skin have been on the decline as well, with swelling and tightness now being a daily occurrence. Unfortunately, my GI tract has taken a huge blow as well. I have begun to choke on food again as it becomes lodged in my esophagus, as well as apirating a good portion of my liquids into my lungs.

I met with my Scleroderma Specialist from UCLA today who was surprised to see such a decrease in health over the short span of a month I have been off chemotherapy. He expressed his worry that my illness is continuing to progress and that it was time to start thinking about the future of my treatment. With the recent developments he wants to start talking Stem Cell Transplants, formally known as Bone Marrow Transplants. This procedure is a long, complicated, and expensive treatment where you receive extremely high dose chemotherapy over a few day period, then receiving life saving healthy stem cells that will graft to your bone marrow -- creating a new immune system. While the treatment is considered experimental in autoimmune disease, it has already proven to be the most useful, life saving treatment available; however, the victory of remission from your disease is only if you live through the transplant. Many weak autoimmune patients will pass away during the process due to organ rupture, and septic shock. You can see why agreeing to this procedure is an extremely difficult decision.

Since The HSCT is technically an experimental clinical trial it is not preformed everywhere. You must fit specific criteria, at specific hospitals,written by specific physicians. You have to be just the right amount of sick - essentially dying, but not too far gone. It's a very delicate balance. Luckily, there is a trial here in Seattle, but it's run by a physician who I do not trust my life with. (If you want to read that story visit here. lol) The only hope for a Seattle transplant is to get another physician involved which is unlikely, but possible. I could however, have the transplant preformed in California, it would just add travel to my already non existent funds.
Did I mention the experimental transplants can be over 100,000 dollars? Yeah...
So, the game plan for now is to try one last line of defense, an immunosuppresant called Tacrolimus, and for my physician to speak to a few of the transplant teams here in Seattle until I see him again in September. The drug is nothing special, and is actually quite dangerous for the kidney, but there really inst any drug stronger than Cytoxan -- and I have already failed the rest, so that's pretty much my only option. If my lung function continues to drop we will start the process of consulting with transplant teams in the area. We already know I qualify the basic criteria, it will just be getting a doctor who is willing to accept my case.

I know many of you are wondering how I am taking this decision emotionally. To be honest, I am not going to pay it much thought until I see my physician again in September. Why worry about a decision that isn't 100% set in stone? I have always figured a HSTC would be in my future however, so I have already given it a lot of thought, and accepted it as a part of my treatment plan. Yes, I am obviously worried about the mortality rate, but I have also seen this treatment work miracles -- and I am more than ready for my miracle! My decision will come down to two very important factors: location and fundraising. I will keep you all updated as the situation unfolds. I have a few more tests this week and next to hopefully get a good idea at where else the Cytoxan has worn off.

Don't forget to follow along on Facebook for images you wont find here on my blog! I created a Facebook page last month and completely forgot to announce it formally. It pretty much just has stuff I wouldn't post here -- such as daily photos. Head over and take a look! As an unrelated side note -- who is attending the Scleroderma National Conference in New Orleans this year?! If you would like to meet me, I will be speaking on Saturday and would love to connect with my fellow patients/readers!

8 comments:

  1. Hi Chanel,
    Happy to have found your blog. Found it from your "Mighty" article. I have Mixed Connective Tissue Disease, which includes Lupus, Scleroderma and Polymyositis, as well as a merry-go-round of other illnesses that show up when your immune system is out of whack. I'm also on oxygen. I have a friend in England who is tube fed, and I'm going to share your blog with her.
    I'm enjoying it, but would you consider changing the font color to something other than pale gray? It's quite difficult to read, especially those times that we are so sick we can barely see clearly.
    I clicked on your article about life hacks, but there were no links. I saw one about finding a "cute" canula. Is there such a thing? You mean they aren't all alike? I saw a link for cute hospital gowns. I might get a couple. The kind with the shoulders that undo for IVs.
    I'm happy to see that you still have enough strength to go to the Scleroderma conference! Hang in there! You inspire many!
    Soft hugs!
    Sheila

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    1. Hello Sheila, it's always nice to meet a fellow warrior. All of the information on "life Hacks" is linked, just drag the mouse over the information and it will turn pink. I even have a video about cute cannulas on the Video Tab of my blog. They are definitely not all the same ;) Having a cannula you find pleasing makes a world of difference. I don't currently have a link for hospital gowns, but its an interesting idea. Hugs!

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  2. Hi Chanel,
    I'm considering traveling to Seattle to see a scleroderma specialist, but I don't want to waste my time if he is no good! Do you have experience with Dr. Furst? If so, would you be willing to comment candidly? I'm praying for you and hoping that you can get the HSCT, whether in Seattle or Chicago or wherever! You are an inspiration to so many of us. You are strong and you are smart. Keep fighting!

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    1. Hi, I do not typical express who I see, or review physicians by name for privacy issues, but I can tell you there are some wonderful physicians in Seattle! Please call their office to make sure they are accepting new patients! Good luck and hugs!

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  3. Hi Chanel,
    Do you have a go fund me account set up to help pay for the 100k dollar treatment? If so I'd like to know what it is. Praying for you. Clint Sharp

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    1. Hi :) Yes I do! The fundraiser is currently on my blog and Facebook page! Thank you!

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  4. Hi Chanel, I'm curious about your GoFundMe as well. Maybe you can post it on Facebook. I am wishing for your miracle- I truly believe you will get one. Hugs-
    Sarah

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    1. Hi :) Yes I do! The fundraiser is currently on my blog and Facebook page! Thank you!

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