Hello everyone and Merry Christmas!!!
It's now been 39 days since the transplant and 25 days since returning home. A busy 25 days its been. Upon returning home I was very tired and fatigued. Which Dr. Fedorenko had warned us that it is about 3 months to fully recover from the chemotherapy fatigue.
A week after returning home I unfortunately caught a cold. To which I am still recovering from this bugger of a cold. Fatigue was already a problem and the cold only added to the tiredness. Was sleeping 18-20 hours a day. Totally worn out. Alicia sent an email to Dr. Fedorenko to let him know what was going on. He confirmed that my Dr.'s here were treating the situation well with antibiotics. He looked over the lab work and felt that my blood work looked good. Just going to take some time to get over the cold with such a compromised immune system.
Now here is some good news! I am already having some positive results from the treatment. Woohoo! Prior to the treatment my legs were giving me problems. They are already much better. Stiffness is gone, burning sensation is gone, and weakness is gone. Actually, the weakness has changed. Prior to treatment the leg weakness was due the nervous system. I am now having some muscle weakness due to lying around in the hospital for 30 days, isolation, and chemo. I lost 20 lbs through the treatment. It may seem like a subtle difference between muscle weakness and nerve weakness, but it is a distinct difference that I can feel. As such, I am feeling very optimistic that the treatment has worked for me!
Returned to work on Wednesday. I am starting slowly by working part time. Nice to be back, but it is tiring. So I need to be careful of not overdoing it. Will be starting some PT and stretching exercises also.
My main goal with this treatment was to stop further progression of the disease. I pray that these improvements reinforce the notion that there will be no more progression. Possibly even reversing more of my symptoms!
All in all I am very excited and happy with the response of the treatment thus far. It's fair to say that having improvement in my health at this Christmas season is the best present EVER! LOL
Many thanks to all of my supporters,donors,family,friends, and anyone who participated in the many prayer circles out there. Thank you all so very much. Love you all!!!
Our boxers are in my corner
Sunday, December 25, 2016
Sunday, November 27, 2016
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
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!!!
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!!!
Monday, November 21, 2016
Post transplant D+5: Isolation coping strategies :So far things are moving along just as they should in my recovery
Recovery at this point means staying in isolation with only the nurses, cleaning ladies, and doctors allowed to enter the room. My environment must stay as sterile as possible so that I am not exposed to germs.The staff has taken extremely good care of me and my environment.
Living in isolation was something of an unknown to me and how well I would handle it. Mostly I an an extrovert so it was a concern that I would look like Jack Nicholson in "One Flew Over the Cuckoo's Nest" after just a day or two.But to the contrary it has been down right comfortable and I think I blessing for my recovery. I get plenty of rest, especially when my body is telling me to lie down and nap.
Prior to trekking all the way to Russia and then try to figure out how to occupy my time I made a concerted effort to have coping strategies in place. For me it has helped tremendously. My mind is busy which gets my body moving. No time to just lay down and stare at the ceiling wondering how much longer will it be before I can step out the isolation door and breathe freedom.
Allow me to share some of my coping strategies that have helped me a great deal. I am mindful that my coping strategies are not universal and may be detrimental for others. However, I think the point is a very important one, because a person will need the power of the brain on their side to fight through adversary in times like this. Being mentally positive is most certainly beneficial in healing and recovery. Having a positive outlook will lead a person to get up and do things rather than stay laying down and doing nothing. Perhaps even slumber into a state of depression, which inevitably be harmful to healing and recovery
Here are some coping strategies for dealing with boredom in isolation. Of course, the list could almost go on endlessly. Find what works for you and I think your stay in isolation will be much more comfortable, relaxing, and rejuvenating.BTW, introverts may not even need any coping strategies. They are in bliss just being in solitude. It's helpful to know oneself to craft an effective strategy.
My blood numbers are tracking course just as Dr. Fedorenko was expecting. No surprises are good surprises.
Living in isolation was something of an unknown to me and how well I would handle it. Mostly I an an extrovert so it was a concern that I would look like Jack Nicholson in "One Flew Over the Cuckoo's Nest" after just a day or two.But to the contrary it has been down right comfortable and I think I blessing for my recovery. I get plenty of rest, especially when my body is telling me to lie down and nap.
Prior to trekking all the way to Russia and then try to figure out how to occupy my time I made a concerted effort to have coping strategies in place. For me it has helped tremendously. My mind is busy which gets my body moving. No time to just lay down and stare at the ceiling wondering how much longer will it be before I can step out the isolation door and breathe freedom.
Allow me to share some of my coping strategies that have helped me a great deal. I am mindful that my coping strategies are not universal and may be detrimental for others. However, I think the point is a very important one, because a person will need the power of the brain on their side to fight through adversary in times like this. Being mentally positive is most certainly beneficial in healing and recovery. Having a positive outlook will lead a person to get up and do things rather than stay laying down and doing nothing. Perhaps even slumber into a state of depression, which inevitably be harmful to healing and recovery
Here are some coping strategies for dealing with boredom in isolation. Of course, the list could almost go on endlessly. Find what works for you and I think your stay in isolation will be much more comfortable, relaxing, and rejuvenating.BTW, introverts may not even need any coping strategies. They are in bliss just being in solitude. It's helpful to know oneself to craft an effective strategy.
- Crossword puzzles
- Sudoku
- Follow the news back home and around the world
- Netflix-find a good series and binge watch
- Christmas shopping (purchased two gifts and researching more) remember its Black Friday upon us
- Instant message other patients that we have bonded with prior to isolation
- Video call and phone call friends and family back home
- Prior to entering isolation we made several grocery runs to the store. I cook many of my own meals. Takes up some idol time and I can flavor the food as I wish. (I did bring several spices from home)
- Brought study material for work in the event I wanted to work on a project or two. ( Brain Fog has not allowed me to do any study work) But it would have kept me busy if I felt that I would benefit from it.
- Have streamed two sporting events on my laptop
My blood numbers are tracking course just as Dr. Fedorenko was expecting. No surprises are good surprises.
Thursday, November 17, 2016
Post transplant Day 2: enter stage left Mr Olson, you are now in isolation for your own protection. Lots of recap since the beginning of testing and treatment
Wouldn't it be nice just to enter a witness protection plan from bacteria and viruses? Ha!, not in the real world. We are locked down into an abyss of solitary confinement. It's really not bad so I don't want to petrify anyone of what to expect here during isolation.
Introverts will absolutely relish the idea of a week or more of blissful rejuvenation. Myself, I am looking forward to writing my blog a little more consistently and thoroughly. To eat up more time I have lugged some study material for work that require large chunks of time. That is if my foggy head will allow me to do so. Will see if that is a possibility. Between fighting the drugs, esp. chemo and steroids, I feel quite loopy and that is not a way to study and retain my readings. So, I am being optimistic that my brain will clear enough to be productive for some work in the coming week.
In full disclosure I did not know what to expect with this treatment in regards to how my body and brain would cope with the trauma it is going through. Trauma to your body it is. My wife is a professor and as such she grades constantly, I mean constantly. So I am going to use a grading system, like she does at work, here to relate to you, the reader, the grading of how I perceive my body's reaction to the treatment thus far.
Usually I like to start with an expectation of what I believe would constitute success or accomplishment of what I have set out to do. It's the norm for me to set a lower bar of expectation so when I do exceed my expectation I am not at risk of disappointment, but rather proud, and accomplished. To be clear that does not mean that I set unreasonably low expectations just so they can easily accomplished so I can falsely inflate my ego. Grade: B
Of the top I had concerns about taking High Dose Chemo Therapy day after day for 4 days. My expectation was to have nausea at the very least and likely some vomiting (hopefully not intense.) Minor nausea was my thought would be a medium probability, with some vomiting. Some of my stem cell family did suffer through this, but persevered. Being in the lucky circle of our group here I did not suffer neither the nausea or vomiting. Chalk one up for beating expectations. Grade: A
Sometimes there are issues lingering out there a person isn't aware of or didn't think would be a concern. Introducing to you Aphresis. He did a little number on me that I was unprepared for. It was not a major issue but one I was unaware could be an issue. While I was cognizant that I would go through Aphresis, to harvest the stem cells from my blood, I was naive to it having some difficulties some times. So I had not set expectations on this event. Generally, Patients will harvest enough stem cells in one setting to be able to transplant them back into your body for engraftment. So I enter the Aphresis stage naively thinking "OK they harvest my stem cells and I'll be back in my room fat, dumb, and happy" Stories are not usually that fluid and smooth. After 4 hours of harvesting my medical team informed that we were only able to collect less than half of what will be needed to transplantation. We'll start over in the morning and hopefully collect the remaining amount needed. In my mind I say "Well tomorrow we will get the remainder needed and move on, will just set me back a day. Next morning I am awaken to start again harvesting more stem cells. This is 2 days in a row, four hours each, no breaks.(They do allow you to wear a diaper if you wish). But alas I again come up short of the required stem cells for transplant. Close but no cigar as they say. Let's just do it again tomorrow!!! That afternoon I took a hard nap, unbeknownst to me it was due to second Aphresis. The third attempt is successful in harvesting over 2 million stemmies (WoooWooo) that my immune system needs for the completed transplant. Here comes the rub. My expectation, in my mind, was Aphresis was to be a non event. Whoa, 3 straight days of Aphresis really took a load out of me energy wise. During Aphresis the machine cycles your entire blood system 4 or 5 times. It does this in order to strip out the excess stem cells and bag them for storage to be returned to you later, That puts quite a strain on you body to have the blood work that many hours and be returned to your body.
The strain on me going through three straight days of Aphresis resulted in sleeping 20 hours of the 24 hour day.By far and away the expectation for Aphresis, which is normally one of the easiest steps, was greatly underestimated, Mostly because of my underestimating of what it could actually would be. Grade:D
There are some issues that I find hard to set expectations to. This next topic is one in which I didn't feel that I could get my head around easily. Its the whole specter of traveling to a different country/culture, not as a tourist, but as a patient stuck away in a hospital. The itinerary calls for a months stay. That's a long time, what if I don't meet people who I can communicate with, enjoy some free time together, maybe they are stand off-ish. The best that I could come up with is to attempt to befriend a person or two. Enjoy our stay at hospital and not be bored to tears through the complete treatment time. Expectations of great camaraderie was fairly low for me to really meet and enjoy the company of my fellow patients. Nothing could have been further from the truth. To a T every patient here has been exemplary. Everyone wants to help one another out, after all we are all in the same boat and we have the same motive to keep the boat sailing smoothly and safely. We have taken a family approach to this new environment here, the love and support is palpable in the air daily. Faces light up when we meet in the common room. Laughter is aplenty when we have our stem cell parties, and the birthday cakes and pizza's, A festive ring is in the air. My expectation on relationships, camaraderie, and humanity for one another was greatly unexpected, This topic has made the stay in a few away land very bearable,comforting and downright pleasurable. I am so thoroughly grateful for this one. I can see life long friendships within our group of warriors. Grade; A
To this point in this blog post it been discussed things in the past on this blog. We are just over the half way point of completion. Our little group here is either in isolation or being released from isolation. So there isn't much to point out on expectations or experiences on isolation for another week. Keep tuned and you will learn more about our experiences there.My individual expectation is that I may have some platelet problems that would require a transfusion, My concern for platelets are not unfounded. I was treated for AFIB and am on blood thinners. Platelets are required to clot blood. My doctor has ordered me to stop the blood thinners during engraftment. In fairness to his actions platelets should not be a concern, but a minor issue lurking in the shadows. if it were to arise. On the psychological front I may have some more difficulties. First and foremost I am not the most introverted person. Not sure how tormenting it will be to stay locked up like the "Bubble Boy" for that length of time. I've put coping strategies in place to deal with this issue. We will see how effective my strategies will play out. My expected Grade; B-
Hope you enjoy this blog entry. For the veterans I think it may conjure up some very touching memories. For the incoming patients my wish is to instill some confidence in you that being here is not some scary place and you will most likely come away with some memories that could not have been foretasted beforehand. Must call it a night, I am totally brain fried.
Till next time.
Tranplantation is over and a new counter begins: Day 1
0n the day of a HSCT is considered the patients new birthday. Such as Day 0. Simple enough, when a person is born naturally he/she is not 1 day old, but rather 0 days old. So the counter begins. My transplant yesterday is when I was 0 days old. The world has circled and I begin this writing at age Post Transplant Day 1.
Yesterday was a long and tiring day here at Pirogov, but a very exciting, bustling, and festive day for our group. We are seeing some patients being discharged and saying our good byes and well wishes to them. Sad and happy moments colliding in the air made for some special moments. Whether the feelings were happy or sad there were all terribly heartfelt and full of optimism for all's futures. If and when some readers realize this endeavor you will feel what is felt in the room and just read the words from this blog. I am not blessed with the prose to make people feel the intensity of the moment.
Let's move on to my day as it was a big day in my life and was action packed from sun up to sun down. Let me tell you I was so worn out and tired at the end of the day I don't think that I could have eaten another slice of pizza if I wanted to. Oh, did I tell you we had another pizza party celebrating my stem cell birthday, a day after celebrating three stem cell birthdays the night before! Wondering if we are creating a ritual to celebrate stem cell birthdays by eating Paaa Johns pizza. That's right Papa Johns, and the best thing is they will deliver pizza to the guard gate. Just walk down and pick up your party pack. It's pretty awesome!!!
Sorry for the sidetrack there, but it was fun to break up some of the monotony of being a patient in another country. Hopefully others will do things similarly. Transplant day was yesterday for me and I felt that things went pretty much how I would have liked to script it for myself. Their team here is top notch and work with high efficiency. Overall time for my transplant was a little longer than the average. This is because it took tree attempts to collect the necessary stem cells. A little over
Million stemmies is their magic number for a person of my weight, The slowdown for the transplant was due to the number of bags used for collection had to be transplanted one at a time for a total of three times. Should all of my collections been taken in one attempt there would only have been one bag needed for the transplant and it would have been quicker. No big deal just a little extra time laying a waiting.
I was warned of all of the possible sensations and feelings that could arise during the transplant. The doctors informed be what to be doing to alleviate any discomfort, inform them of heart palpation's, stomach pain etc. Felt like I was loaded for bear and we ready to fight toe to toe with MS. Any hgihly uncomfortable feelings or sensations did not really rise to the level that I needed pain shots or any assistance at all. Was fortunate because I know others in our group did have some needed assistance. The worse that I had to deal with was tightness in my chest and minor burning in the top of my stomach. Neither rose to the need for any action. Afterward I did urinate blood for a day and half , thankfully that has cleared and looks like my kidneys should be fine.Chemo is hard on many organs so the my medical team is watching and checking everything closely. Upon conclusion of the transplantation I retired to my bed for two hours so that I could participate in my new stem cell birthday. And of course, devour on some Papa Johns's. LOL
To watch the transplantation video please click the youtube video:
https://www.youtube.com/edit?action_reinstate=1
To watch the short stem cell birthday celebrations please click this youtube video:
https://www.youtube.com/watch?v=tkP9lSwOHJw&feature=youtu.be
To watch the obligatory splashing of liquid nitrogen by Dr. Fedorenko click this youtube video:
https://youtu.be/AxYZQov1wW4
Now it was time for the pizza and an early night of a much needed rest.
Yesterday was a long and tiring day here at Pirogov, but a very exciting, bustling, and festive day for our group. We are seeing some patients being discharged and saying our good byes and well wishes to them. Sad and happy moments colliding in the air made for some special moments. Whether the feelings were happy or sad there were all terribly heartfelt and full of optimism for all's futures. If and when some readers realize this endeavor you will feel what is felt in the room and just read the words from this blog. I am not blessed with the prose to make people feel the intensity of the moment.
Let's move on to my day as it was a big day in my life and was action packed from sun up to sun down. Let me tell you I was so worn out and tired at the end of the day I don't think that I could have eaten another slice of pizza if I wanted to. Oh, did I tell you we had another pizza party celebrating my stem cell birthday, a day after celebrating three stem cell birthdays the night before! Wondering if we are creating a ritual to celebrate stem cell birthdays by eating Paaa Johns pizza. That's right Papa Johns, and the best thing is they will deliver pizza to the guard gate. Just walk down and pick up your party pack. It's pretty awesome!!!
Sorry for the sidetrack there, but it was fun to break up some of the monotony of being a patient in another country. Hopefully others will do things similarly. Transplant day was yesterday for me and I felt that things went pretty much how I would have liked to script it for myself. Their team here is top notch and work with high efficiency. Overall time for my transplant was a little longer than the average. This is because it took tree attempts to collect the necessary stem cells. A little over
Million stemmies is their magic number for a person of my weight, The slowdown for the transplant was due to the number of bags used for collection had to be transplanted one at a time for a total of three times. Should all of my collections been taken in one attempt there would only have been one bag needed for the transplant and it would have been quicker. No big deal just a little extra time laying a waiting.
I was warned of all of the possible sensations and feelings that could arise during the transplant. The doctors informed be what to be doing to alleviate any discomfort, inform them of heart palpation's, stomach pain etc. Felt like I was loaded for bear and we ready to fight toe to toe with MS. Any hgihly uncomfortable feelings or sensations did not really rise to the level that I needed pain shots or any assistance at all. Was fortunate because I know others in our group did have some needed assistance. The worse that I had to deal with was tightness in my chest and minor burning in the top of my stomach. Neither rose to the need for any action. Afterward I did urinate blood for a day and half , thankfully that has cleared and looks like my kidneys should be fine.Chemo is hard on many organs so the my medical team is watching and checking everything closely. Upon conclusion of the transplantation I retired to my bed for two hours so that I could participate in my new stem cell birthday. And of course, devour on some Papa Johns's. LOL
To watch the transplantation video please click the youtube video:
https://www.youtube.com/edit?action_reinstate=1
To watch the short stem cell birthday celebrations please click this youtube video:
https://www.youtube.com/watch?v=tkP9lSwOHJw&feature=youtu.be
To watch the obligatory splashing of liquid nitrogen by Dr. Fedorenko click this youtube video:
https://youtu.be/AxYZQov1wW4
Now it was time for the pizza and an early night of a much needed rest.
Monday, November 14, 2016
Treatment day 12; Chemotherapy is complete, preparing for tomorrows transplant, excellent video by stem cell brother Brian. (Please watch)
Well now that I have completed the chemotherapy regime my immune is dying and will be non existent in a day or two. This is a critical time for me to be extra vigilant about bacteria and viruses. My body will be highly prone to illness. As such, I will be in complete isolation until my blood levels come back up to a level my doctor is comfortable with. My understanding is the time period is somewhere between 6-10 days.
Diet will play a big part in protecting my body. No fresh vegetables, nuts or fruits. Everything will need to be cooked and cooked well. Processed foods are actually preferred as there is less chance of contamination. Personal hygiene is also very important, use a lot of hand sanitizes, anti septic wipes, and try as hard as possible to not touch your eyes and or mouth. Those are great sources to introduce germs into a low immune host body.
Protecting my body is paramount following the transplant tomorrow. Following the transplant I feel the biggest risk to my health will be an infection. An infection on its own does not sound all that scary. Just run down to the clinic, get some antibiotics and all is well. Not so easy for a patient with a compromised immune system. Even the smallest fever can be deadly or end up in the ICU (and lots of pain). And if not caught almost immediately cause death.Without a solid immune system an infection can become systemic quickly and antibiotics could be rendered useless.Therefore I will be checking my temperature three times a day. Should the number that Dr. Fedorenko alerts me to is reached, it is straight to the emergency room. We are told to be assertive to the ER that I am a transplant patient with a fever and a compromised immune system and need IV antibiotics immediately. Kind of alarming stuff huh? But that is not the time to be timid. My life may be on the line. Personal experience from sepsis has me on high alarm so I am not fooling around with it. Both my Mother and a Grandmother passed away from sepsis. They did not have a compromised immune system as I will be contending with.
Transplant day is right around the corner now. Preparation this morning included getting my hair cut to the scalp. The dome doesn't look as bad as I thought it would. Ha!
Transplant will take place in the afternoon. As scary as the last paragraph sounds, I am not nearly as concerned with the transplant procedure. Once we get started it will take about 45 minutes because it will be done in three parts. This is because of the difficulty that we had during aphresis. Aphresis took three attempts to harvest enough stem cells and as such they need to be transplanted individually. I will be awake and talking to the doctors and nurses throughout. One of my stem cell brothers will video the transplant and I will post it on my blog. Mostly I will feel that this transplant is a defining moment in my life on several fronts.
Diet will play a big part in protecting my body. No fresh vegetables, nuts or fruits. Everything will need to be cooked and cooked well. Processed foods are actually preferred as there is less chance of contamination. Personal hygiene is also very important, use a lot of hand sanitizes, anti septic wipes, and try as hard as possible to not touch your eyes and or mouth. Those are great sources to introduce germs into a low immune host body.
Protecting my body is paramount following the transplant tomorrow. Following the transplant I feel the biggest risk to my health will be an infection. An infection on its own does not sound all that scary. Just run down to the clinic, get some antibiotics and all is well. Not so easy for a patient with a compromised immune system. Even the smallest fever can be deadly or end up in the ICU (and lots of pain). And if not caught almost immediately cause death.Without a solid immune system an infection can become systemic quickly and antibiotics could be rendered useless.Therefore I will be checking my temperature three times a day. Should the number that Dr. Fedorenko alerts me to is reached, it is straight to the emergency room. We are told to be assertive to the ER that I am a transplant patient with a fever and a compromised immune system and need IV antibiotics immediately. Kind of alarming stuff huh? But that is not the time to be timid. My life may be on the line. Personal experience from sepsis has me on high alarm so I am not fooling around with it. Both my Mother and a Grandmother passed away from sepsis. They did not have a compromised immune system as I will be contending with.
Transplant day is right around the corner now. Preparation this morning included getting my hair cut to the scalp. The dome doesn't look as bad as I thought it would. Ha!
Transplant will take place in the afternoon. As scary as the last paragraph sounds, I am not nearly as concerned with the transplant procedure. Once we get started it will take about 45 minutes because it will be done in three parts. This is because of the difficulty that we had during aphresis. Aphresis took three attempts to harvest enough stem cells and as such they need to be transplanted individually. I will be awake and talking to the doctors and nurses throughout. One of my stem cell brothers will video the transplant and I will post it on my blog. Mostly I will feel that this transplant is a defining moment in my life on several fronts.
- I am fighting a foe who has had the upper hand on me for 18 years unabated
- I am throwing counter punches back at this foe
- I am fighting back at an invisible disease that others cannot see but I know only too well
- I strive to live my life with the best quality of life possible
- I refuse to just whither away into invalidity
- I love my family, life, and humanity way to much to just give up and do nothing
- I have learned a lot about myself and others during this journey of 18 years (some very good some not very good)
- I am strong enough to take charge of my own health care, to research, seek multiple medical assessments and recommendations. I have seen many doctors and taking many different medicines,
- Come to the conclusion that I am perhaps my own best advocate for my health. Which brings me to fly half way around the world to seek the best possible treatment for my illness. Not an easy decision or thing to do. But that is what a determined person does.
Here is my message to Multiple Sclerosis:
GET THE HELL OUT OF MY WAY I AM TAKING YOU DOWN!!!!!
I would love it if my readers would please watch this video of my stem cell brother Brain Melton.
Brian was interviewed by a local TV station in California about his trip to Moscow for his MS treatment. Brian and I are on the same floor two rooms apart. He gives an excellent interview and the TV crew did an outstanding job of covering HSCT. Bravo!
Click the link below and another drop down menu will allow you to link directly to the video
Click the link below and another drop down menu will allow you to link directly to the video
http://abc30.com/health/fresno-man-goes-to-extreme-lengths-to-fight-multiple-sclerosis/1606948/
Today was Brian's stem cell transplant. The procedure only lasted for 7 minutes. Watch the transplant in its entirety.
https://www.facebook.com/brianjackleman/videos/10209990388870319/
Today was Brian's stem cell transplant. The procedure only lasted for 7 minutes. Watch the transplant in its entirety.
https://www.facebook.com/brianjackleman/videos/10209990388870319/
Treatment day 11: Final dose of chemo. YEAH!!! & A simple description of how HSCT works against MS
Today marked another milestone. Final does of chemo has been infused into my body. Now it just needs to continue its job for me and my doctors. In a couple of days the dirty deed of knocking my immune system for a loop should be done and my body ready for the stem cell transplant. It seems to be that the clouds are parting and I can see a world in front of me that is MS free. It's just waiting for me and I am anxious to make that trek and let the beautiful light shine on my face. :-)
I decided to add this simple description of how this treatment works for MS patients like myself. Many of you have been reading the blog for awhile now and I believe this will help to give you a pretty good handle on what is going on, when, and why.
I decided to add this simple description of how this treatment works for MS patients like myself. Many of you have been reading the blog for awhile now and I believe this will help to give you a pretty good handle on what is going on, when, and why.
SIMPLE DESCRIPTION OF HOW HSCT WORKS
This treatment is designed to reset your immune system and halt the progression and activity of multiple sclerosis. A very simple description has been attached by many to describe how HSCT works. It has been described as a “re-boot” and in many respects this simplistic explanation is perhaps the easiest way to understand how the procedure works. In the same way that you re-boot your computer when it is playing up, HSCT re- boots your immune system and restarts it so that the malfunction is repaired and it works properly again. Your new immune system has no cell memory of malfunction and no longer attacks your nerves (myelin) so that your body has a chance to repair the damage previously inflicted! No more MS!
HOW HSCT CURES MULTIPLE SCLEROSIS
HSCT affects a cure for MS by either completely (myleoablative) or partially (non myleoblative) wiping out the memory of the bodies immune system. This is achieved by effecting a change of the body’s overall T and B-lymphocyte (antigen binding) collection thus making autoimmunity inactive and consequently causing the body’s immune cells to become “antigen naive”. This results in restoring immune self-tolerance. Ultimately this stops the underlying MS disease activity & progression and is where the “resetting” the immune system phrase is coined. After HSCT is performed the body then has a chance to repair or reconfigure adaption to existing neural damage without the hindrance of ongoing disease activity and progression, often resulting in improvement of existing conditions and ongoing recovery of lost function.
Chemotherapy is used to destroy the T- and B-lymphocytes of the body which carry the faulty memory so that virgin cells which are unprogrammed, may replace them. These are generated by the bone marrow. Successful HSCT is entirely dependent on the chemotherapy aspect of the treatment, which is why simply injecting stem cells into the body does not render the body’s immune system self-tolerant. It is imperative that the chemotherapy destroy the bad cells before the newly harvested virgin cells that have been produced in the bone marrow be reintroduced to the body to get the new immune system firing on all pistons!
STIMULATING PRODUCTION OF STEM CELLS.
Injections are given twice a day for approximately 4 days in order to stimulate production of stem cells. This process, which causes extra stem cells to be produced, is known as mobilization. This is a very straightforward process and mild bone pain if experienced can be alleviated with over-the-counter painkillers.
COLLECTION OF STEM CELLS
Collection of stem cells is a process called “Apheresis”. Some pain in the hip has been reported but in most cases it is a pain free procedure. Blood is withdrawn through a catheter and circulated through a cell-separating machine, which separates and collects white blood cells, including the stem cells. The remaining blood cells are returned to the body at the same rate that they were removed. After collection the cells are frozen and stored under special conditions until they are needed for transplant (reintroduction to the body).
ADMINISTERING CHEMOTHERAPY
Administration of chemotherapy takes four days. This will wipe out the existing immune system. Analysis of the blood will be used to evaluate when the system is adequately prepared in terms of “wipe out” for the stem cell transplantation. Once it has been determined that this has taken place and the body is effectively devoid of its previously malfunctioning immune system, isolation will begin and only attending medical staff will be allowed access to minimize any possibility of germs entering the sterile environment while the immune system is effectively non existent.
PERFORMING THE STEM CELL TRANSPLANT
Once chemotherapy is completed the previously harvested stem cells are returned to the body. It is similar to a blood transfusion. People have commented on symptoms that include nausea, diarrhea, cough fever, chilling and often a headache. Medication is provided to decrease these effects. It is worth remembering the associated discomfort is short lived and the trade off at the end of the day is incomparable in terms of what it offers! The frozen stem cells are thawed in warm water quite simply and infused back into the body.
THE ENGRAFTMENT PART OF THE PROCEDURE
Engraftment is the word given to the process when the harvested stem cells that have been reintroduced to the body begin to grow (engraft). This usually takes between one and three weeks and confirms that the new immune system is now producing blood cells as expected. Aching in the bones, lower back thighs and pelvis has been reported during this phase, but the new immune system will be totally devoid of memory of any MS! Once the new system is back to operating normally the blood count will rise and the white cells in the blood will begin to resume their job, which is to fight off bacteria and prevent infections. Shortly after this happens the hospital releases the patient, but it must be remembered that the immune system will remain compromised for some time. Caution must be observed in terms of exposure to any sort of illness for the next year at least.
THE RECOVERY PHASE
The complete recovery phase is acknowledged as taking twelve to eighteen months. Interestingly in the same way no two people have exactly the same symptoms from MS, recovery works in a similar way. Some people have reported seeing continued improvement long after the procedure. They claim that improvements have taken place as long as 5 years post transplantation. Depending on the type of MS diagnosed prior to receiving treatment, results can vary considerably. Please see “what to expect” in the menu under ‘About HSCT’. What has been acknowledged more recently is that excluding the small percentage of people that are considered “failed” (approx. 15% – 25%) HSCT has been shown to halt disease progression of MS in all types of the disease. The best part of getting HSCT is finding out that the procedure has been successful and underlying disease activity has indeed been halted. The icing on the cake is experiencing improvement and often reversal of pre-existing symptoms, some or in the case of the lucky ones – many!
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