Post transplant D+9:Been a tale of two hospital stays, Isolation and the busy sounds of a hospital working hard

Thinking over the last few days here at A.A. Maximov has been a contrast in activity within the hospital. For me, I have been cooped up in the isolation room. The common room has had quite a lot of activity going. I could hear the noise, but unable to smell the pizza. Had I smelt the pizza everyone probably would have nicknamed me Pavlov. after the famous Russian psychologist who could make his dogs salivate by smelling food. HaHa! Nonetheless it was enjoyable to hear the laughter and was content that another HSCT patients had completed their transplant and deservedly celebrating this huge event in a chronically ill person.

New patients get acquainted with A.A. Maxiov rapidly. It seems to be met with optimism and excitement to finally take charge of what has been ravaging their body and turn the tide back against the Beast. Overall enthusiasm is my take on what I perceive from these patients. On the one hand it is nice to meet them. Fortunately for all it is way to brief. For the patients who have been there for a time will find themselves in isolation. Hardly suffices for friendship or bonding. Was very nice to have met the introductions and off to my isolation room.

Then there are the good byes for the people that have spent the last 2-3 weeks together with in the isolation area. My experience is that it is very bifurcated We are all so excited the treatment is over and the healing is beginning. The emotional part is the double edged sword. There have been emotional times and support from the group. Many of us are fighting the same demons and understand the emotion that gets wrapped into the whole ordeal. That is a true  bond and friendship That will likely stay in our soul forever. My belief is that most people want to be empathetic toward the MS patient. And to desire to comfort, help and genuinely love one is very pure. The perspective is different when I find myself surrounded by people fighting the same stigma, battles with different symptoms,(however the same disease), being questioned of being a hypochondriac, etc. The setting here with these like minded individuals really brings these issue to the forefront. And there lies in the rub. We have morphed into a HSCT family. We certainly not the first. There are stories that these groups will make lifelong friendships and I sincerely hopes that ours will also. So this was the sad part of a bittersweet day. Everyone was excited for the departing patients and at the same time knowing that they are moving forward with their life for a better quality of life. It really doesn't get much better than that. Bonus is knowing that we are part of a HSCT family brings in an added support group, whether virtual or reality. It is real and it is there.

But there was great excitement around the hospital and for the most part I was able to keep abreast with ongoing activity. Dr. Fedorenko allowed me to visit the common area yesterday and socialize with human beings WooWoo). LOL Was very grateful to see Sarah Blagbrough for about two hours before her and her family flew back to the UK. We have always referred ourselves to each other as stem brother and stem sister. Sarah was absolutely radiant for a couple of reasons. First her husband was there to pick her up. She was unabashedly excited to be done with isolation. Thirdly, she was sharing with me some of her ms symptoms that have some improvements already! Can it be more exciting than that?????

My health this week had not allowed me to participate in some of the celebrations, but I was able to overhear what was going on. Comforting me to was that I knew what was going on and was very happy to hear the laughter and excitement.I Needed another transfusion this week because my blood platelets were low. Its fairly common that something like this to happen so it was not concerning. The one thing that it did interfere with was the celebrations. The infusions that have been administered really take a lot of energy out of my body. During harvesting they had to do three infusions day after day after day. Think it took the fatigue three days to wear off. So that gave me a two reprieves to rest up for the platelets to be infused. I was glad it was on 1 day of infusion. Regardless I was fatigued for two days when it was completed. Think my body was worn down and didn't need much of a hit to let me know that i needed rest.. That's the main reason I took a step away from any updated posts. I was sleeping like a log!!! The good news is that they were very minor setbacks. I am feeling very good overall, just a little fatigued.    



Stem Cells
                                                            

Infusion Bag

 Just when it looks like the sky is going to clear for no more infusions Dr. Fedorenko decided to give me the Rituximab infusion also, It was a 5 hour infusion and again brought on more fatigue. But it was needed to root out the rouge B cells in my immune system. Was extremely fatigued last night but still enjoyed the company with our group. Dropped in bed and slept more soundly that I have in a very long time.

Should be able to venture outdoors this afternoon depending on my blood numbers. Yesterday they had shown signs of improving. Get the impression that when the numbers move they will move in huge improvements.

The numbers were good, here is a snapshot. The part that I have been watching closely is the Leukocytes. They jumped from 250,000 to 8.16 Million in two days. It my understanding that the engraftment of the stem cells have taken hold and growing like crazy to build my new immune system. The secondary number under watch is the platelets. They had dropped under 20 so Dr. Fedorenko gave me an infusion to bring them up to where they should be. Currently the report shows 127.

So far my treatment has been tracking the schedule right on track. My flight is scheduled for Wednesday and it looks I;ll be there for departure!!!