I wanted to start off this post by simply thanking everyone for their uplifting support these last few weeks. Obviously I have some difficult decisions coming up, and knowing I have an army behind me makes it a bit easier! So thank you to everyone of my readers, family member, and friends!
My body is really starting to feel the lack of immune suppression. I have been off Cytoxan about two and a half months now, and at a very low dose of Prednisone, making my body a breeding ground for inflammation and disease. I can feel myself becoming more hunched from pain, feel the growing stiffness in my joints, and feel the ocean of fatigue hit like a tidal wave. I haven't felt this poorly in a very long time. My world is caving in once again and it's surrounding me in a thick fog. I am becoming increasingly forgetful, less active, and less motivated due to the pain and shortness of breathe that comes with just about everything I do.
My Scleroderma Specialist prescribed a immunosupressive drug to hold me over until my looming Stem Cell Transplant, but unfortunately I was only able to take it a few days due to severe side effects. The drug caused unimaginable bone pain in my shoulders, and consistent diarrhea that just couldn't be lived with. I saw my Primary Care since I cannot contact my Specialist at this time due to his schedule, and she suggested that for the moment I increase my Prednisone to reduce a bit of the inflammation. A devastating, but useful suggestion. I have worked for over a year to decrease my Prednisone, and in a simple day I lost all my heard work.
I have also been working closely with my Digestive Disease specialist due to frequent episodes of aspiration. I saw her this week and she suggested I take nothing by mouth, not even water, until I can preform an aspiration assessment at her hospital. Luckily, I am scheduled for next week so the wait wont be terribly long! My mouth is so dry -- I don't know if I'll make it to next week though lol ;) I am trying to be good, but darn! not drinking water is difficult when you have Sjogrens!
This last week I also had a Stress Induced Echocardiogram which basically just takes a look at if my hearts electrical system functions correctly with physical activity. My heart actually did great, but my lungs -- not so much! After a few minutes on the treadmill my poor oxygen saturation just kept creeping lower and lower. We ended up having to stop the test at about 6 minutes because I just couldn't breathe. Overall, it seems my body is pretty much exactly where I was before Cytoxan, which was not a good place. Last year I was a wreck, and in tears at almost every appointment begging the healthcare system to do something instead of slowly watching my organs fail! Cytoxan was the magic bullet that gave me a taste of life again -- it just didn't stick. That is what is so special about a Stem Cell Transplant though, the procedure sticks!
Speaking of Stem Cell Transplants -- I owe you all an update! Ever since my Specialist uttered the words I knew it was time to start looking as my body likes to tank fast, and hard. I took to the internet this past week to review criteria and locations for the transplant. There are two trials in the country that run the HSCT on Scleroderma patients, the STAT Trial and The Assist Trial. The STAT Trial is difficult to get into as it has stricter criteria, but is nation wide and preformed at over 8 hospitals. The ASSIST is done solely in Chicago by one physician, and has a more vast criteria with more organ friendly options. Many Scleroderma patients opt to head to Chicago as it is a late stage trial, and has been preformed on hundreds of patients successfully -- the organ friendly transplant is a plus too! I actually seem to fall into the criteria for both trials, so decided to reach out to a few hospitals in the STAT and the hospital in the ASSIST. I am currently awaiting a response from Chicago, but I did speak with the coordinating nurse who says the lead physician is looking over my intake paperwork and will have a decision on if he wants to see me for an in person consultation soon! Seattle is part of the STAT and preformed at Seattle Cancer Care Alliance. Unfortunately, as I mentioned in my last post, a physician I did not have a good run in with is part of the team. I still contacted the trial since they are so close to my home, and was shocked by the response! After a week of waiting I received an email from the head physician stating he basically thought I was too far gone, and that I would die. The email made it seem like it would be "charity" to even look at my medical record, but I could still send them in. If they look decent enough I could then meet the physicians in person. Well -- that is just not the compassionate response I was hoping to receive. It was actually quite the opposite. I couldn't believe they would feel it was appropriate to make such judgement before even looking at my records or meeting me in person! All I wanted was a consult, and they weren't even willing to meet me. Needless to say, I will not put my life in the hands of a team that has that little bedside manner over email. It was truly disappointing.
After that response I emailed the next closest hospital, City of Hope. I received an email back in record time -- one hour! The physician was extremely kind and seemed genuinely excited that I had emailed him and shown interest in the trial! We emailed back and forth for a good few hours as I explained to him my situation. By our last email he asked if I could fly out to California and meet him in person! YOU GUYS I HAVE A CONSULT! I am so ecstatic I can hardly contain myself! His team was super fast and called me the very next morning to set up patient registration, and take my basic information for our initial appointment. They are taking care of getting my basic medical records, and I am bringing along all I have to the appointment. Their goal is take make care and treatment as easy on the patient as possible -- and apparently that starts before you even see a physician! I think I am in love! lol Now, a consult DOESN'T mean I am accepted into the trial, it simply means the researching physician wants to talk about my case in person, and look me over to see if I qualify. I will receive a call Tuesday August 2nd with my appointment date. From our conversation it sounds like he wants it to be as soon as possible! This hospital is definitely my fist choice due to its close proximity to my state, and the obvious understanding that a patient is a person. It will cut travel costs and the length of flights drastically than if I were to go to Chicago. Unfortunately, any physician who is out of state isn't "in network" so my insurance coverage isn't wonderful but, they are contracted with the doctor! So my current need is to come up with the money for travel, and the initial appointment which wont be covered by insurance at all. I have decided to start an online fundraiser to assist with the costs of out of state consultations, and then, if he says yes to the procedure, I will immediately raise the goal of the fundraiser to match the cost of the Transplant! Link to fundraiser found here, or click the Widget on my sidebar!
I will be sure to keep everyone up to date as the next few weeks unfold. Be sure to follow my Instagram and Facebook for photos and updates as well! I love to document my health journey so I am sure you all will get some fun pictures of California! Hugs!