While I did received some bad news this week, so many wonderful things have been happening in my world! ...Wow lets just take a moment to appreciate that. Those are not words I get to type very often! While my health may still be struggling, as it always will be, I finally feel I am on a solid treatment plan that gives me enough energy to at least enjoy a few small victories! My weekly iron infusions have made a huge impact on my overall energy levels and improved my quality of life immensely! Plus I no longer have the coloring of a zombie! lol It feel so good to have iron pumping through me veins again!
I had another dosing of the chemotherapy Rituxan (Rituximab) which suppresses my B-Cells and essentially obliterates my immune system. This drug is helping to suppress my disease and I FINALLY feel like it is working! With this new more frequent dosing I can almost see and feel the differences in my skin, breathing ability, and organ function! I have been able to start drinking things again which is amazingly satisfying and I believe it is a side product of the drug. I am hoping to work up to small amounts of puree items but that will only come in time if my body is willing. Disease is a tricky and conniving little demon... it may decide that liquid is off limits again at any moment, but lets hope not! I feel my ability to breath has improved slightly too; my doc said my lungs do sound a little less stressed! Woohoo!
I kinda feel like I live at the infusion center currently; I have made some pretty good friends with the nurses after seeing them every five days! One of the nurses that watched my Port access last time got to use me as her first ever Port access patient! She did so well and got a perfect access!
I had an appointment with my Rheumatologist who was very satisfied with my progress! Between the new drugs, more rigorous treatment plan, and use of oxygen I seem to be really holding my own. One thing I want to clarify for my readers is that my lungs currently are fine-ish. The reason I am on supplemental oxygen is due to the poor function of my respiratory muscles. The respiratory muscles that are responsible for expanding the lungs do not work adequately leaving my under oxygenated with activity such as walking or talking for long periods of time. My actually lungs do not currently have mass amounts of fibrosis, I actually have basically none; it's my muscles that are causing the dip in my oxygen levels requiring the use of supplemental oxygen. You will not see me on oxygen 24/7 but will see me on it when I am walking out and about, at the mall, or out for a long day with family. If I am engaged in an activity where my body will be at rest for a long period of time such as watching a movie, driving, or sitting on the couch, I will more than likely have fine oxygen levels and not require its use, however sometimes I might. My body knows when I need it and when I don't.
I also had an appoiment with my Gastroenterologist this week. Since my body has decided that SIBO (small bacterial intestinal overgrowth) is my new normal I am officially set to be on antibiotics the rest of my life. While this is not optimal, it is the only way to combat SIBO, and is much better than the alternative -- diarrheaing out all your nutrition and iron, which requires hospitalizations every other week. I will be on a alternating daily schedule of heavy antibiotics: one day on, one day off to tackle this overgrowth and hopefully settle my bowls. This issue is what is causing my serve anemia as my bowls can no longer absorb iron. We are hoping that by counteracting the SIBO with antibiotics on this heavy regiment that my iron will level out so I can discontinue my infusions every five days. As of now we will be stopping the iron infusions until we know if the antibiotics are working; if I still in 6 weeks can't keep up my iron levels we will be starting frequent infusions again. Since all of this seems to be spiraling out of control lately my doctor ordered a "Smart Pill" test that will track my digestive system transit time. I basically just get to swallow a giant pill (which may actually have to be placed through an endoscopy since my esophagus doesn't work) which will decipher where my intestines have slowed/stopped so we can find the right medication to stimulate that particular area of the tract.
Lastly I had an appointment with a Cardiologist to follow up with some palpitations I've been having, and a small murmur that has recently shown up in clinic. This new cardio went over my history, and old Holter Monitors results that track the rythem and beats of the heart; what he found was quite surprising. All of my monitors over the past year have showed multiple episodes of SuperVentricular Tachycardia (SVT.) This can be a serious arrhythmia due to improper electrical activity in the heart causing a plethora of problems including fainting, dizziness, lowered blood pressure, chest pain, and a decrease in cardiac output. The doctor was pretty peeved that these test results were not read properly, and that I was not informed of this issue; SVT clearly correlates with all my symptoms. Luckily, this is an easy problem to fix with a medical procedure called an Ablation. An ablation is preformed by placing a long thin catheter through a blood vessel in your groin into your heart where a piece of the tissue is modified using Radio Frequency, essentially re-wiring the heart to stop beating incorrectly. While this sounds very big and scary, it is supposedly a simple procedure that has very high success rates! He told me that I will feel much better once my heart is re-wired to beat properly! We haven't scheduled this procedure yet, as we want to do a few more tests before we move to this somewhat drastic measure. For now I will re-preform a Holter Monitor for 24 hours, and follow up with him to address the results in two weeks.
As a interesting side note, he expressed to me that my small murmur is due to a "heart string." My Left Ventricle has a small chord running across it that causes innocent murmurs; apparently it's completely benign and is an abnormality formed at birth.
A very BIG thank you to all the supporters who came out for the Scleroderma 5k last weekend! I cannot begin to tell you how much it meant to me to have so many people walking by my side! Our team had the largest number of members; 35 strong! I am still so blown away by the love I have received from our small community! I walked almost the whole 5k, but alas, my poor body couldn't make it all the way. Thankful my husband Noel made it up for me! ;) Running a 10k in my honor! I love that man so much!
In some other rather exciting news I have been asked to be a speaker at this years Scleroderma National Foundations Patient Education Conference! I will be one of three patients on a panel talking to others about "Living Well with Scleroderma"! I am so excited for this opportunity and beyond flattered that the Foundation thought to ask me of all people! Now I am even MORE excited to attend next month! I would love to meet all of my readers at the conference if you will be attending! Look for my panel in the schedule on Sunday in the Belmont Workshop Room from 11-12pm!