Well, I have been back in Hawaii for one month now and I'm still bald, but feeling great. My hair is just starting to make a reappearance. My local doctors and my medical team at Northwestern have done a superb job working together to ensure I receive the best possible care. My bloodwork is drawn every Monday and the results are faxed to Northwestern for review. I'm on a combination of antiviral, antibiotic and antifungal meds, which are sometimes adjusted depending upon how my lab work looks. I'll begin tapering off the meds after my six month follow-up in Aug/Sep.
My only setback during the last month was caused by a Cytomegalovirus (CMV) infection during my second week home. CMV is a very common virus and most people don't even know they have it, because it rarely causes symptoms. However, in those who are immune compromised, CMV can cause serious issues and even be fatal if not treated. My symptoms included increased fatigue, weakness, night sweats and muscle aches. It was depressing upon the initial onset of my symptoms because I didn't know what was going on. It felt like my recovery was going backwards after feeling pretty good my first week home. Once my labs indicated a CMV infection it put my mind at ease, because at least I had an explanation of why I was feeling crappy. My docs quickly adjusted my antiviral medication and my symptoms started to subside in a couple of days. Getting plenty of rest in the months ahead will be key in enabling my immune system to stay strong enough to prevent reactivation of the virus.
I've walked 2-3 miles frequently during the past month, with the exception of the two week setback due to the CMV infection. I started increasing my activity level this week. My regimen includes 15-30 minutes of low impact cardio and light weight training. Three days ago I went jogging for the first time since the transplant and easily ran one mile at a good pace. I probably could have pushed two miles, but I wanted to see how my body felt after running one mile, before pushing my body further. Today I easily ran two miles with minor soreness in my legs. My lungs feel really good right now, much better than they did during the CMV infection. If I continue at this pace without further setbacks, my six month pulmonary function test will be well above my tests conducted prior to the transplant.
Support I've received from my family and friends has been crucial to my successful recovery. My military command has also been extremely supportive, which has put my mind at ease and is allowing me to focus on my recovery. I really appreciate my coworkers pulling together to cover the gap while I'm out, and I look forward to rejoining the team soon.
I've been in contact with the Scleroderma Foundation staff and they have extended me the opportunity to share my story on the patient panel at this year's National Scleroderma Patient Conference in San Francisco. It will take place in July, and I am very much looking forward to the opportunity to positively impact other patients on their journeys. I attended last year's conference in Boston, and was helped myself by the sharing of other patients' experiences. I am also in the process of filling out the required documents in order to start up a Hawaii Scleroderma Support Group Chapter. My goal is to assist other Scleroderma patients in Hawaii who may not be aware of the resources available to them. This will also provide them with additional education and emotional support from a network of patients with similar experiences, on island, where it is not currently available. This is something that would have been very helpful to me when I was first diagnosed.
I'll provide monthly updates and a synopsis of my follow-up at Northwestern in Aug/Sep.
