Pioneering The Way for HSCT at Cleveland Clinic
I am so excited to share with anyone reading this page about my experience at the Cleveland Clinic as I have HSCT for MS. I arrived on September 9,2020 to have a visit with Dr. Majhail, my transplant Doctor. On September 10th I had to meet with my Neurologist, Dr. Cohen. Here is a summary after my visits.
After receiving the final green light to proceed with HSCT, it freed up our first weekend in Cleveland. My mom and I started looking for unique things to do. When I talked to Jeff at work, he suggested that we go see the Christmas Story House. I have known about this movie since it was released on VHS. It was so long ago when I first saw the movie that I had to look up some information on Wikipedia because I wasn’t exactly sure how old I was when I saw the movie. This movie was released in 1983 but it did not do well in theaters so it was quickly released to VHS in 1984. That means I would have been around 10 years old when I saw it, assuming we saw it when it was first released to VHS. Our family discovered this movie because of my Uncle Charles Blaine. After seeing the movie, “You’ll shoot your eye out kid!” was quoted many times at family gatherings. He always had a way to find unique movies. He also introduced us to Pee Wee Herman (Paul Ruebens).
Our visit to A Christmas Story Museum did not disappoint. I highly recommend that you put this on your “to-do list”. Here is a link to their website. Here is a short video and some photos from our visit.
Standing on the front porch with the famous leg lamp.
After having a little fun on Sunday, I had to be at the Cleveland Clinic Interventional Radiology department the next morning (September 14th) to have a Hickman port installed. It is quite a walk to the Q elevator. If you have mobility issues, allow extra time and get a wheelchair.
I had the BEST crew taking care of me. It was fun to share my story and we took a photo. I love these people!! The guy in the back is Nate. If you notice he is smiling under that mask. I wonder if that is because he is going to get to stab a line in my chest? LOL. This procedure was painless and you can watch them insert it on the big screen if you like. Not sure what drug they used but I really didn’t care what they did to me. Haha. And I watched the whole thing!
Interventional Radiology Super Stars!!
Once the catheter was inserted and I recovered, we headed back to the hotel. But, not before we got to see the guy in a wetsuit swimming in the big O fountain in front of the hospital. He was drawing quite a crowd so I thought I would join in with everyone else. He was actually doing maintenance and cleaning out garbage that was caught in the filtration system. Nothing to see here folks!
The next day was uneventful. We returned to Oncology to get training on how to care for my new port. I returned Wednesday morning to Oncology for my dose of Cytotoxin.
Sherry, my nurse, was so interested in my story. I was fortunate to have her as my nurse. Of course we had to take a photo together.
You will be given Benadryl and Ibuprofen as pre-meds for this infusion. I felt pretty good after the infusion. Over the next few days, as the chemo started working I felt a little more fatigued each day. I did work remotely but I only ended up doing half days or working in 2 hour segments to get in a full days work. I did end up taking off a couple of days that I just couldn’t make it. I also found that I had to urinate very frequently as the chemo does cause some bladder irritation. In addition to trying to stay hydrated, I found myself in the restroom more than in my bed or at the computer. I have seen people mention many ways to handle the frequent urination and mild incontinence. My sister is a nurse and she informed me of many ways to handle urinary issues. If you are a guy and you want some sleep, I highly recommend using a condom cath and urinary bag. Using this will lessen all of the movement and effort to get out of bed every 30-45 minutes which means you will fall asleep faster. You can even use it during the day if needed. Each day I had to return to the hospital and I would be given fluids even though I was drinking water constantly. On 9/25/20 my platelets were border-line so I received one unit of platelets. The biggest issue I had was fatigue and it was worse than MS fatigue. By 9/27 my lower back and hips would ache in bursts. This would be more noticeable when I would exert any effort to increase my heart rate. Even though I had this dull ache, I had much more energy and I started to get my taste back. I was feeling pretty good.
On 9/28, I woke up bright and early to eat breakfast so we could be at the Apheresis Unit by 7:15am. My nurse, Jennifer took care of me that day and walked me through the process. Dr. Ricci came over to explain how the machine worked and answered all of my questions. She also introduced a student to me and he was impressed when he heard that I was a “first” at the Cleveland Clinic. Dr. Ricci also commented that she didn’t think that anyone had ever came to the unit and had as much fun as I did. Of course, we had to take some photos!!
Dr. Ricci, aka. The Collector
We really did have a lot of fun while I was there.
This is Jennifer, my nurse that took care of me while I was connected the apheresis machine.
In this photo she is holding the bag that contained the stem cells that we collected for the day.
One of the coolest things that I thought about as I was connected to the machine was the fact that it had pulled all the blood out of my body multiple times, separated the stem cells and then put the other components back in. In other words, all of my blood has been outside of my body and then put back in! How cool is that?!
And the final total is….
My port removal was schedule for 9/30. Once I recovered from the removal, we headed home. I will be home for a couple of weeks and we will head back to Cleveland on 10/19. Subscribe for the latest updates. You can also find me on Facebook and YouTube.
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