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Humbly Courageous
Hi, I’m Amy. I live life with a condition called Bethlem Myopathy which is a rare form of Muscular Dystrophy. I like to help others by showing how I live well with a debilitating condition. I was born with this disease, so it’s the only way I know life. I continue to work on embracing myself and using that to help others.

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Moments Like This-Stem Cell Treatment #2

Well, I survived my Stromal Vascular Fraction (SVF)  stem cell treatment #2! As mentioned in previous blogs, this one was a double harvest, meaning half of the cells taken were sent off to a cell bank for future use. Going into this day, I felt the anxiety building because this time I knew what to expect. I knew there would be pain, and some uncomfortable moments. In preparation for this time, I requested some medication to help calm my nerves a little.


Excited to go!

My rock

Before heading into the office, my husband said a beautiful prayer for me as I clung to his hand. He is truly my rock. Arriving at 8:30 a.m., I took my first dose of medication as soon as I got into the office, which I was honestly so thankful to have this time around. The nerves and emotions were definitely in full force by the time I arrived. After a few minutes of arriving, I was taken into the consultation room. My doctor came in, and we discussed where he would harvest the fat from this time. If you have read my blog post that details my first stem cell treatment titled "An Unexpected Opportunity", you may remember that the first time around we took the fat (55cc's) from the "love handle" area. This time being a double procedure, he needed more fat, so he decided to move around to the sides of my lower back. So, I guess still the "love handle" area, but this time in the back rather than the front. After the location was decided, he applied some numbing cream, and then wrapped that in saran wrap to sit for 20 minutes. At this time, I took some more of my medication. It was certainly helping to calm my nerves.

After that 20 minutes was up, I took one more dose of my medicine, and I said goodbye to my husband as I was taken into the procedure room. As soon as I walked into the room I saw the tray of surgical tools they would be using, including the liposuction tool used to collect the fat, that would be separated from my stem cells. That tool always makes me nervous! It just looks like a very long and thick needle! Then it was time for the part that I probably dislike the most. I had two doctors who were performing the procedure. Each one had a side they were working on because fat was taken from both sides. They both got started with further numbing which involves about 200 needle pokes total. 100 per side. Listen, while it's certainly not the most painful thing I've ever gone through, it is extremely unpleasant. It feels exactly like it sounds, needles poking you over and over. I'm sure the numbing cream lessens that somewhat. The doctors were very kind and talked to me, and offered me breaks if I needed them. I don't think I took any breaks, I just wanted to get it over with! Also, this time I was laying on my stomach, and the first time I had been on my back. I much preferred being on my stomach. I couldn't see what was happening, and somehow I felt less vulnerable. Also, taking medication that didn't really alter my thinking or knock me out, but did take the edge off, made a world of difference! Game changer for sure. The numbing medicine they use contains epinephrine, and that makes you shaky. Not awful, but certainly noticeable. They did warn me of this side effect, so it wasn't a surprise. After they were done with the injections, I had to lay there for about 15 minutes to let it take effect. 

 

As I was laying there, I was chatting with the surgical fellow, who had been there for my first stem cell treatment. I was so glad he was there again, as it felt good to have the same team that I was familiar with. Plus, he is just a great guy, with a wonderful bedside manner. Hard to find in the medical world sometimes. He told me that he had not planned to incorporate this stem cell procedure in his practice when he started that later this year, but after following my story, and seeing the improvements it was making for me, he had changed his mind and decided he would be offering this in his practice. I seriously was just overwhelmed at that moment, thinking of all the hope and help that could bring, and also thinking he was the perfect person to offer this. Both doctors doing my procedure are extremely caring individuals. That just goes so far in my book, not only helping me feel comfortable, but just hearing that they believe in me, and that I am inspiring them to keep doing this work. Just a heartwarming feeling for sure. 

So now it was time for the dreaded liposuction tool. Again, the fact that I couldn't see what they were doing made a HUGE difference. They each took turns removing about 120 cc's of fat total. They would inform me along the way of how it was going, keeping the communication going and checking in with me to make sure I was ok. In between telling them I was hanging in there, in my head I was just repeating Philippians 4:13...I can do all things through Christ who gives me strength....over and over. That's what got me through, along with their encouragement, and my incredibly kind nurse who was part of my team of heroes. Going into this the second time around, I wasn't sure if knowing what would happen as opposed to being clueless the first time, would make it better or worse. Turns out, this time, we all agreed, went much better! The anxiety of the unknown wasn't there, and combined with the medication, I was just far more relaxed and I think that went a long way in how this all played out. There were four incisions total. Two on each side, and two in my middle back. This part of the procedure probably took 10-15 minutes or so.

Hard part is over!

After that, my husband was able to come in and help me get dressed, and we were able to leave for a quick lunch break while the magic was being done to separate the stem cells from the fat. If you would like a more detailed medical explanation of this entire process, then I would suggest you read the book that got this whole thing started for me. The book is called The Stem Cell Revolution, by Mark Berman, MD and Elliot Lander, MD. My husband immediately said, "you seem like you are doing so much better than you were at this point last time!". That was good to hear, and I would agree, I was doing better at that point. 

We left for about an hour. During that time, as expected, the areas where the incisions were, had started to drain some fluid and a little blood. Enough to soak through my pants and coat. Luckily, I had time to go home and change before going back. Amazingly, I live only 5 minutes from where I get this treatment done! People come from all over to get this done, and I am so close. A true blessing!

As we got back to the office, I was feeling very tired, but OK. I knew this last part was a breeze compared to the other parts of the treatment. I was taken back into a treatment room again. I saw the tube of beautiful bright red stem cells. As I saw it I thought... that looks much brighter than last time. The nurse told me that this time they had gotten OVER 100 MILLION stem cells! She said, you should have seen them on the screen, so healthy looking too! I knew the last time I had about 10 million. It was a surreal moment. I couldn't believe that had happened. I had prayed, and many others had prayed for this treatment. I had done all the things I thought could help. Exercise, eating right, and just taking precautions to stay healthy. It was a lot of sacrifice on my part, and a lot of staying in to stay well. Then my doctor came in and we all just celebrated the fact that there were so many they couldn't even count them all! He said that rarely happens, and said "prayer did that!". I could have just sobbed at that point. What a celebration!!! I even asked if I could take a picture of this tube of wonderment. Especially good news with half of them being sent to the cell bank for future use! 

Beautiful cells

So, the cells were delivered by an IV infusion over about a 15 minute period. We then said our goodbyes, and thanked the team. My nurse said to make sure to tell the doctors to update her as I sent them progress updates because she wants to know how I am doing. Seriously, just the nicest most caring people. As I was leaving I turned to say goodbye to Dr. J. He looked at me and said, "you are a great patient Amy". I in return said, "and you are a great doctor". For some reason, that moment made walking humbly courageously into this God given opportunity all worth it. As we got into the car to go home, the tears started flowing. This time, I wasn't crying because I had held my fear in, but I was crying because I know, this opportunity is such a GIFT. God placed me, Dr. J , Dr. A and nurse D together. He knew we'd make a great team, and possibly help so many others. I know we will. We already are!  

My team of heroes!

Coming home and stopping in to hug my parents who were anxiously awaiting my return home, and then my beautiful boys, was just the best feeling in the world. Not to mention the messages of love and support received by so many. All I know is I am one lucky lady with a whole new world of opportunity just waiting for me. Here we go! Stay turned to hear about my recovery in next week's blog. 

Moments like this.... 
    and this are everything!


Comments

  1. Wow how exciting 1000000 cells enough to bank and then some you are a rock star ⭐️ can't wait to see how well you do with your next treatment!

    ReplyDelete
    Replies
    1. Thank you Bonnie! I'm still over the moon about those numbers!!

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