The first year post stem cell transplant is a roller coaster, and on that roller coaster the first hundred days are the terrifying drop! Those first hundred days are typically when your new immune system either rejects its purpose, or begins to flourish and grow. These days are when you are most susceptible to infections, typically are the most weak, and the days that seem to be the most treacherous. Day +100 is a celebration for any transplant patient, and seems to be when they can take their first sigh of relief - It is the first large milestone in the patients journey.
Yesterday I reached day +50! Halfway to the dreaded first hundred days. So far my journey has definitely been a roller coaster. The first few weeks home after transplant I ended up with CMV, (Cytomegalovirus) a globally widespread virus that only manifests in severely immunocompromised patients. This virus can be extremely deadly if not caught and treated immediately. Luckily, my transplant team has me preforming weekly blood draws to check my progress, and check for serious viruses such as this. My viral load was pretty high, but my team was able to treat me successfully for the virus with a two week course of anti-virals. The CMV definitely set me back a bit on the recovery time line, lowering my WBC, and confining me right back to the couch! lol About a month post transplant the WBC count should be rising at a steady rate, however, mine was actually dipping, or barley rising at all due to the virus. As of now my counts are on the rise - slowly, and a bit slower than they should be, but still rising. Unfortunately my neutrophils are still at a neutropenic level, so hopefully they will rise soon!
While most of my 50 days have been rough, I have had a few huge victories too! Monday evening I received the okay to remove my feeding tube! My GI physician was definitely hesitant, however I have successfully sustained my weight for a solid 7 weeks without the use of my tube. Between my GI and the transplant team, we decided to move forward with removal. It was so odd to say goodbye to a piece of a equipment that was quite literally part of me! ...though I cant say I was sad to see it go! The site will take a few weeks to heal completely, though the stoma has actually already closed. The scar the tube leaves looks a bit like a second belly button! lol My digestive tract, while I can now sustain my life without a feeding tube, is not perfect. Before transplant my esophagus worked at a whopping 0%, and now my guess would be it works around 30-40%? I know that seems like a small number still, but to me that's 30-40% better swallowing! Honestly, any movement compared to pre transplant feels insanely amazing! So, while you see me shoving my face with whatever I can get my hands on, thinking to yourself, "wow her digestive system was cured!" Please know that isn't actually the case. I am quickly learning by elimination diet the things I can and cannot have with this post transplant peristalsis.
I have put a lot of thought into whether or not I would change my blogs name since I am in fact, no longer tube fed! At first I was leaning towards changing my branding, however; the more I think on it, the more I want to keep The Tube Fed Wife. Why? ...Because it has carried me through so much. I want to continue to grow with this title to show others that there is hope! This blog all started to give others a glimpse of 'a day in the life of the tube fed wife,' and I hope by keeping my title it shows that any day can hold a miracle!
The most frequent question I get asked currently is, "so are you cured?" That answer to that question is: no. The transplant was not a cure, but solely an aggressive treatment that hopes to halt progression of my illness (remission), and reverse as much damage as possible. As I have previously explained, hematopoietic stem cells are blood cells, blood cells make up your immune system. The new hematopoietic cells infused during a transplant are not programmed with disease like the old cells wiped out by the high doses of chemotherapy. This new immune system, created by your own hematopoietic cells, is no longer constantly attacking the body - meaning nerves have time to repair themselves, inflammation begins to dissipate, organs are no longer under siege, and the body can begin to finally heal - instead of constantly trying to fend off its own immune system! The stronger ones new immune system gets, the less evidence of disease should be in the blood. Many patients see antibody markers for disease, and inflammation drop dramatically, and symptoms lessen, or come to a complete halt - ailments such as inflammation would completely subside, however ailment such as fibrosis would not improve. I have seen incredible improvements in my digestive tract (nerve damage) and respiratory system (inflammation), however I have seen no improvement in my vascular system (fibrosis). The improvements that manifest should be permanent as my immune system has been completely reset, however; similar to cancer patients, relapse of disease is possible even after an immune system reset. Currently stem cell transplants are only FDA approved to treat certain cancers and blood disorders - that is why my stem cell transplant was a clinical trial. The physician was simply using an already FDA approved treatment on a disease it was not currently FDA approved for. Since my diseases have only been studied for the past few years in regard to stem cell transplants the long term results are truly unknown for patients like me.
Probably the second most common question I get asked is, "how can I get a transplant?" As I mentioned above, stem cell transplants are only FDA approved for certain cancers, and blood disorders. There are a few clinical trails in the US that preform stem cell/bone marrow transplants on specific autoimmune diseases. Your physician would refer you to these programs if they believe it would be an appropriate treatment at your stage of disease, however; you can also browse them on clincialtrails.gov if you're curious. (Search "your disease AND stem cell transplant") Due to the high mortality rate of the transplant, these trials have extremely specific candidate criteria - and almost every patient chosen to participate has a poor prognosis.
Do be advised that "stem cell therapies" are very, very different than stem cell transplants. I often see/hear patients mistake the two to be the same treatment. "Stem cell therapy" is a non-FDA approved procedure preformed at private clinics where a patients adipose (fat) cells are harvested through liposuction and then, either injected into a problematic joint, or infused in hopes of reducing systemic inflammation. Effects can last for weeks, to months. A stem cell transplant is a FDA approved medical procedure that involves extremely high dose chemotherapy, and the use of very specific hematopoietic stem cells derived from the bone marrow. This demolishes one immune system, and replaces it with another. The process takes months, and must be preformed by a highly skilled team of physicians and nurses in proper hospital facilities.
....I'm going to be honest with you guys, this post took me hours! The heavy amounts of chemo used for the transplant really takes a toll on your brain. I've had brain fog, but never to this extent. It's almost as though the chemo has put a thick wool blanket over specific areas of my memory, word recollection, and perception skills. I couldn't even remember how to start a new blog post when I logged on today! lol ...And there is a HUGE button that says "New Post" right at the top of the page. Yeah - it's that bad!
In other exciting news: I have BABY FUZZ on my head! My hair is finally starting to sprout. Even though it's pretty much invisible right now, I am very excited! Woohoo!