Saturday, December 15, 2018

Two Year Post hsct Follow-Up

I wanted to start by apologizing for not keeping everyone up to date, but I promptly stopped myself. I have been reminded time and time again that I never need to apologize for putting my health first. It is a hard pill for me to swallow, but I am learning to adapt. #Sorrynotsorry would be appropriate, right? lol Since the auto-gvhd diagnosis I have been keeping my head low and focusing on getting back to a place of stability post transplant. My team and I worked diligently to sort out my physical and mental health which were quite a mess from August - October. Luckily, we finally began to see positive results from the Rituxan infusions I underwent in October. My physician expressed it would take about a month to see any real changes, and he was right! Late November I started feeling more energy, seeing less rashes, less hair loss, and food became less abrasive again. I am definitely still experiencing some issues that may take longer to recover, such as the mucosal membrane involvement, but it should get better with time. While I am not back to 100% of where I was prior to August, I am in a much, much better place. I can stay awake during the day, my skin and insides don't feel like they are on fire anymore, and mentally, I have clarity. Hallelujah!

This past week I found myself in Chicago to see my transplant team for my two year post HSCT follow-up testing! Seriously, where does the time go?! I have a very love hate relationship with the city and hospital. On one hand, it is where my life began again - where my life was saved. On the other hand, it is where I was brought to near death - physically and emotionally tortured. Being back is a whirlwind of emotions. Tuesday consisted of blood work, an EKG, an Echocardiogram, a Pulmonary Function Test, and a High Res Cat Scan. Wednesday I saw my transplant team for preliminary results! 

Labs: My white blood cell count and ANC are still abnormally low. As I had pretty damaged bone marrow prior to my transplant, they believe this is my new normal. My immunoglobulin never returned to normal either, G, A, and M are all still practically non-existent. Due to my recent Rituxan infusions, my B cells are completely depleted as well. As you can imagine, my immune system is pretty fragile right now - and will be for a while. My autoimmune markers are still titered extremely high, though my antibodies are becoming less concentrated! 

PFT: My FEV, DLCO, and other results are slowly coming back up post the dip this summer/fall. All in all, my results are still well below normal, but are trending in the right direction. 

EKG & Echo: I am currently showing an abnormal QRS-T angle again, which is something I dealt with in the past. Currently, the rest of my heart is functioning pretty well, so we are simply going to keep on eye on my EKGs. My pressures are all within normal limits and my ejection fraction is continuing to improve! My left ventricle is no longer enlarged and I have no pericardial effusion which is a huge plus!  

CT: My imaging showed no new fibrosis, I didn't even have air trapping this time! Everything honestly looked lovely, besides for two new nodules. A 2mm and 3mm nodule were found in my right lobe. Luckily, due to their super small stature, my team wasn't too worried. However, I will have to have a repeat scan in 6 month (here in Seattle) to ensure they are not growing. Nodules are not a super uncommon occurrence in autoimmune patients. We sometimes grow what are called, granulomas, which are little build ups of scar tissue. So technically it is new fibrosis, but a different kind then what my doctors are evaluating for. Typically these only arise as a response to active inflammation, a foreign object, or infection in the lungs - so I don't have an answer for why these new nodules are there right now. I am interested what my specialist here will think - the CT is on the way to him as I type. Are they inflammation caused by the auto-gvhd? Are they simply just my body being an idiot? Are they disease progression? Did I have an infection? Di I inhale something?Who knows! lol Basically, I am on, "active surveillance" until we can verify they aren't growing. 

Dec 2016 / Dec 2017 / Dec 2018

All in all, my results are on the mend after a recent dip in my health due to the auto-gvhd. Things are definitely looking up and I feel like the pep in my step is back. The word of the day: Stable. I am so grateful for another bonus year of life.