About a week back, I was walking the mall with my walker in tow when a young man wearing a volunteer apron approached me. He was standing near a boothe that said Children’s Hospital Boston (CHB), along with another man volunteer. Upon approaching me, he said something along the lines of “hello, can I tell you about..” Before he even had a chance to finish his sentence, I looked at him and interjected, saying something along the lines of “not wanting to do anything with that place right now.” I continued to turn my head back around and walk right past him while heading towards the opposite end of the shopping center. Having seen the name “Children’s Hospital Boston” on the booth triggered an emotional response within me, as silly as that may sound, and I did not want to hear anything about the hospital right then.
For context, I had an almost 8 hour surgery done there in October, and it has been an extremely rough recovery since. Aside from having been in excruciating pain for a solid few weeks after, I had severe bleed outs at home stemming from surgical wounds that led to anemia; I am still receiving iron infusions to help make up for all of the blood I lost.
Upon these spontaneous bleed outs, there would be large pools of my blood on the floor. To make matters worse, calling an ambulance was not a viable option, as my town’s current fire chief is still refusing to have me transfered to the hospital where all of my specialists are at (despite 4 different specialists of mine writing letters advocating for me to be taken to my appropriate hospital, I am not done fighting this). My KT doctor told me that receiving treatment for these wounds at a local hospital would work against me, and make things worse.
I was basically on my own in terms of handling these bleed outs when they would happen, other than thankfully having my Mom and Dad with me. Mom was a huge help in terms of holding compression and getting the bleeding to stop; often a time she would have to hold compression for a half hour straight (I always say that with all she has had to learn and do over the years medically, she should be given an honary nursing degree). Without her help, I definitely would have had to take the risk of being transported to a local hospital for help to stop the bleeding.
There were a couple of times when the blood was coming out so rapidly that my parents initially thought I should have called an ambulance, but I refused to budge; the only way in which I would have budged would have been if I thought there was a good chance I would die if I didn’t make that call. To try and quell the source of the bleed outs, I had to visit the hospital a few different times to have the wounds worked on by my Dr. and his NP (both of which I am extremely lucky and priveledged to have). In addition to all of the post-op madness that happened at home, there were some big hiccups that took place during my inpatient recovery stay at B&W following the operation. After the surgery was performed at Children’s, I was not allowed to stay there as an inpatient and recover (this decision was made by hospital leadership, not my Dr.). Rather, I was transferred over to Brigham and Women’s Hospital (the two hospitals are conjoined by a bridge), where I had an extremely bad experience my first night. In addition, the stay at B&W hospital in general was just not the best (although I had some amazing nurses who I am so incredibly grateful for). I don’t feel up to addressing the reasons in which I feel that way right now, so I will leave that for another post.
My Dr. who did the operation and his NP’s followed me closely post-op, despite being at the next hospital over. He would come by, check in and examine me and was still very much so involved in the hospital stay. I also was able to easily communicate with him and his team about any concerns that arised. Despite this, though, some things undeniably did not go as smoothly as they would have had I been at a hospital that was knowledgeable in KT. For reference, CHB is one of the top hospitals in the world for KTS patients. In contrast, whenever I meet a Dr. At B&W, I am told this is the first time they are ever hearing of my condition upon meeting different doctors. So, despite being connected by a bridge, the hospitals are night and day in terms of knowledge of my condition. Admittedly, I do have some resentment towards the leadership at Children’s right now, as I had always been told since I was little that I would be a patient there forever.
In the past couple of years, the new leadership put a stop to that due to my age. I am still allowed to receive outpatient care, but not inpatient care, which is so frustrating as I live right outside Boston and all of my KT specialists reside there. In addition, I have spent over 100 hospital inpatient stays there, and in some weird way it felt like a second home all of my life. I was familiar with all of the staff members, and a lot them I even became friends with. To have been kicked out so abruptly felt like a huge punch in the gut; I was suddenly thrust into a new atmosphere at a hospital where no one knew me or had heard of my condition.
This past stay was the first time I had ever been inpatient there after having had done a surgery at CHB, and it certainly did not to the way in which I would hoped for. Thankfully, all of that is now behind me, and I have finally begun seeing the benefits of the operation. My quality of life has improved greatly from a pain standpoint.. I feel as though I have gained back such a lust for life that had dwindled away prior to the operation. All of the hell I endured was undoubtedly worth it, but the whole surgical process was an extremely traumatizing period of time in my life. I often like to walk my nearby mall to help relax and clear my mind, in addition to getting some physical movement in. Having seen the name of the hospital in a place I usually associate with being laid-back brought me back to a dark place for a moment in time.
After I walked away from the young adult man volunteer, I felt an immediate sense of shame fall over me. Once I got down to the other side of the mall, I called my Mom and said “I think I just did something extremely rude.” I proceeded to tell what had happened, and she was definitely not happy with my behavior. Although I already inheritently knew I had acted wrong, my mom’s reaction to my behavior validated my concern that I had acted poorly; it was certainly not the way in which I was raised to act. She also reminded me that even though their new leadership has given me problems, CHB has done a ton for me throughout the years, including saving my life many times over. My mom advised that I should go back and apologize, which I agreed with.
I walked back down to where the booth located, and the two volunteer men were still standing there. I went up to the volunteer who had approached me, looked him in the eyes and apologized for being so rude. I told him that I had recently had a surgery there, and that it had been a brutal recovery, and that seeing the name of the hospital triggered me. “Honestly, I did not even know what you said,” he told me. “I just thought I had scared you when I approached you.” He also said I did not come off in a bad way to him, which was nice to hear. I asked him to tell me about the cause they were there for; It was on behalf of a fundraiser, that I unfortunately had to tell him I was not in a financial position to take part in right now. He totally understood, and appreciated that I took the time to listen. The other volunteer man at the boothe came up to me and joined in on the conversation with us. He asked for my name (and vice versa) and we shook hands. I told him that I have lived a lot of my life at CHB hospital, and again apologized for my initial reaction to his colleague approaching me. He told me that he too had been a patient there, and he understands it’s tough. He said all of this while looking at me directly in the eyes, and it started to trigger a bit of an emotional response within me. “Yeah, it’s been tough,” I said, as tears began to form in my eyes. He asked if he could hug me, and we shared a deep embrace. We wished each other well after, and I went back on my way to my next destination.
All I could think about, though, was the lovely human interaction I had just had.. That moment of genuine connection between me and another CHB patient was so incredibly soothing, and was just what I needed at that point in time; it was pure medicine for my soul. I could not believe I had almost missed out on that. That day reminded me that I should always be open to any and all new human interaction, no matter how it presents itself, and that I should never immediately shut someone down from the start without hearing them out, as you never know what your heart and soul could gain from it.
Ari