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!!!

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.

• 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

These is just a small sample of things that future HSCT patients can think about and add to your repertoire of filling in empty time. From my perspective keeping the mind in a good place is paramount to healing and recovery. In some small way this post maybe will help others find their "happy place" while recovering here.

My blood numbers are tracking course just as Dr. Fedorenko was expecting. No surprises are good surprises.

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.

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.

• 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

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/

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.

 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!

 

Treatment day 9: Chemo round 2

Chemo rounds start around 9 am. We are given infusions with the chemo to help wash the chemo out of our bodies after they have done their thing. This is done to help protect our organs and bodies in general. No need to keep the poison wandering around damaging other things unnecessarily. The net result of this is extreme urination. Don't plan on going on any long distance travelling trips after one of these. Ha! It gets so bad that sometimes I just feel like staying on the toilet and keeping peeing rather than walking back to the bed just to have to turn around and go back to the toilet. j/k But it is a lot of urination to wash out the chemo.

One of our group members is having a difficult go at it with the chemo. Brian has had pretty severe vomiting and nausea. He's taking the maximum amount of anti nausea medication but still is not feeling top notch. I can only guess that it may be taking the intensity down a little. Hopefully he will be feeling much better today. He was pretty much bed ridden all day yesterday. That is very un Brian like. Today will be his last day of chemo and i am sure he is dying to complete that phase of treatment.

Brian is 1 day ahead of me on the chemo part, I finished my second day of chemo yesterday. Very grateful that i have had no deleterious effects of the chemo. "knock on "wood" I don't want to jinx myself and be projectile vomiting all day today. The group as a whole has really handled the chemo extremely well , with the exception of poor Brian. Hope his worst is over.

We are now on the cusp of our group members going through the transplant itself. Feel the excitement building within the group. My opinion is that transplant marks the riddance of our disease attacking our neurological system and we will view our body with a new beginning. Its a very exciting, emotional, and hopeful feeling that is hard to describe just how intense and personal it is.

There is not a lot to add to todays blog as we all are sleeping (resting our bodies). So not a lot of activity going on with the outside of our bodies. The insides are working overtime and all for the good of the big picture. Will be getting pictures of the upcoming stem cell birthdays as there will be a few back to back.

I've decided to ask the group, if they don't mid, if I put a post of each one of them with their bio on it. I would like to have one for my record and the readers will then get to meet them also. See if i can't get that done in the next day or two.

Treatment day 8: Chemo begins

Quite a relief to have finally collected the necessary amount of stem cells through aphresis. Three rounds of aphresis really took a toll on my energy level. Think that I slept 20 of the last 24 hours. Regardless of how I received the stem cells or how long it took to get them. I have them. They are in the bank so to say. After my immune system is obliterated we can deposit them back into my body for my body to rebuild a properly functioning immune system. WOOT WOOT

Preparing my body is still under way. This morning I had a new neck catheter installed. It's a little lighter and smaller.

 Should be more comfortable than the behemoth that was installed for the stem cell harvesting. This new catheter will serve the purpose of deliver meds, steroids, and chemo. Received my first round of chemo mid morning today. The doctor told me that I will get a second infusion this evening. Overall there is four days of chemo needed to obliterate the immune system. In talking to other patients it seems that the chemo is tolerated quite well. If someone has nausea it is quickly remedied with some anti nausea medication that is highly effective.

The hospital here does not have a wide range of foods to eat. It seems to be the same thing over and over. Sure would like to get a variety of things to eat. Here is a smattering of the typical meals we are served.

For a stemmie birthday
party we went to the local
market and splurged for
some delicious cakes!!!


YUMMY!

Treatment day 7: Aphresis, Aphresis, and more Aphresis

Aphreisis has become my bane in trying to move along with this treatment. Today was my third round of aphresis. Quite often a person will need one round of aphresis to collect enough stem cells for the treatment. Two million stem cells are required. Each attempt to collect stem cells through aphresis is a 4-5 hour sitting. Thankfully its not painful or uncomfortable, just boring and playing the waiting game. Today was my third day and things were getting uncomfortable as now the time is adding up by being bed ridden for three straight days. Turns out to be a minimum of 15 hours of laying prone, that is after a nights sleep. But, I persevered and collected the necessary amount of stem cells to start with the chemotherapy portion of treatment tomorrow. Am very grateful to finally treat the defective immune system and start to build a new one from afresh.

One negative effect that I am having from so many aphresis attempts is that I am very fatigued. Slept a lot today and a deep sleep it was. Think that I will be starting chemo already being a little low on energy. Good thing the chemo treatment will only last 4 days.

Had one minor issue show up today. The catheter that's inserted into my jugular vein began slowly leaking after my shower. The doctor and nurse re bandaged it before it could turn into a much larger problem. This evening they will be removing that catheter as one that size is no longer required. Tomorrow they will install a smaller catheter for delivery of the chemo and other drugs, Should be a much more comfortable catheter.

Not really seeing too much of the group lately. Everyone is moving along with their treatments. Sarah & Elena are now in isolation. I think Patricia is about to enter isolation. Brian and Espon have begun their chemo and have had their second dose for the day. They both told me that they feel weird and drugged from the chemo. Guess that is to be expected. Sasha and I will both start our chemo tomorrow. Because of everyone's schedules being a little different we are not seeing each other as frequently as before. Thankfully we all have messenger to use to communicate with one another. It helps just to have a little communication at the very least.

Was very relieved to have the big catheter removed from my neck tonight. Nobody was available to film it for me. Two days ago I filmed stem brother Brian have his catheter removed so I will use the video from that removal for illustrative purposes. They both went pretty much exactly the same.

Watch the video here: https://youtu.be/STCTmDkqAac

 This should give you an idea of what to expect from the catheter removal procedure. It is not painful but it is a relief as it is somewhat uncomfortable to wear around, especially for a few days.

Another new catheter will be installed in my neck tomorrow. It's a much smaller one and should be more comfortable. From this new catheter I will receive chemo, steroids, and a variety of medicines. I like the fact that there will be fewer needle injections as a result.

Not really sure how much I will be able to keep up with my blog during the chemo phase, but I will try my best. Wondering how much energy I will have to stay on top of things. I'll try my best to keep everyone informed.

Treatment day 6: Lots of activity here yesterday and some milestones were met

We sure had an exciting and action packed day yesterday. Sarah had her stem cell transplantation in the afternoon.The group pitched in a put together a stem cell birthday party for her. It was an extremely  emotional and happy day for all of us. I really like how Dr. Fedorenko performs a ceremony for the patient to have a special recognition of being reborn with a new immune system. He will award the patient a medal pin and then ceremoniously spill little liquid nitrogen on the floor. It the liquid nitrogen that had kept the patients stems cell frozen while awaiting to be re infused into their body. It is a tremendously touching moment.

Sarah will soon be headed off to isolation for a week or so, just depending on how her blood levels respond.There is not set time on isolation. Brian and  Espon will get new PICC lines in their necks and begin chemo this afternoon. I am running one day behind them as I did not get enough stem cells yesterday in my first attempt. Dr. Fedorenko said that 25% of patients will harvest enough in one attempt. Guess I am not in the top of the class, just an average C student. Ha! If all goes well I get the neck catheter out later today and will start chemo tomorrow. I am back on the aphresis machine for another 4-5 hours today. Hopefully this will do the trick and give me the number of stem cells that I need to move to the next step.

As it turns out I did not produce enough stem cells today for the necessary allotment. We will try again tomorrow, however I am really close to having the full amount. The first day they harvested 900,000 stem cells and today they added 800,000. So I am at 1,700,000 and only need to be over 2,000,000. Should be a lay up to complete in the morning. Then I can finally move forward with the treatment. First thing for me to look forward is to get this large neck catheter removed from my neck. It will be replaced with a smaller one that should be a little more comfortable. The chemo will be delivered through that smaller catheter. Then its the big moment: hair cut! HaHa! For an older balding guy it is not too traumatic. Feel terrible for people with a full head of hair to deal with this issue. Hair is an important part of a persona. Diseases like MS can kick a person in so many ways. This is just one small example of its insidiousness.

Brian, Espon, and myself was able to go for a walk a grab a quick lunch this afternoon. Anastasia recommended a nice restaurant about 3 blocks from the hospital. Very nice setting in the restaurant, which was mostly authentic Russian food. I at Borsch soup for the first time and really like it a lot.

 It felt to me that it was difficult to have a lively conversation as we looked like zombies from :The Walking Dead". Seems to me that we were all worn out from the last few days of treatment. Felt like I stumbled back to the hospital and slumped on the bed. Slept for a few hours in a very deep sleep. The slumber felt good, but I felt bad for missing a stem cell birthday celebration. Elena had her party as she completed her transplant this afternoon. Congrats Elena!!!! I want to do my best to attend every stem cell birthday while I am here. Elena was kind enough to share some of here authentic Russian candies with me

Things are moving along with the treatment for everyone. Pace is picking up and I do see any signs of it slowing down. Some more patients have been moving in as the finishing groups are leaving. Our group has Brian and Epson starting chemo tomorrow. Sasha and I should finish harvesting tomorrow also. Then the four of us will be on chemo for the four day duration. Sarah has been moved into isolation now. Patricia has been having a little bit of a hard time with the harvesting. I need to go down and check on her as I haven't seen her all day today. I saw her husband briefly when we returned from lunch.

All in all our group has a family feel to and I suppose most groups that come through here do. Being here without a good group would definitely put a damper on the experience. Speaking only for our group I can say that I am very lucky and fortunate to be with others that are so approachable, compassionate, and kind. I truly love our group and feel that we want nothing but the very best for one another. And of course, we have the same mission on this trip. We want our life and health back and it is easier to accomplish this with support and love, whether it is near or far. Right now, right here, we are our own support group. It's something that I'm very happy and proud to part of. Would rather not be anywhere else in the world right now.









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Treatment day 5: Sarah's Transplant video and her Stem cell birthday party, my stem cell harvest

Busy day today for sure. Was awoken around 6:45 am to prepare to harvest my stem cells for the upcoming transplantation. Pretty exciting as I am more than ready to get this transplant over and head down the road of recovery. We started off by hooking me up to the aphresis machine to separate my stem cells from the blood. First funny event for the day happened when I decided to break protocol and post a picture of the aphresis machine on Facebook. Have you ever had your phone make an auto correct and put something really funny, stupid, or inappropriate in comparison to what you are trying to convey? I have. And it happened this morning. I typed that I was being hooked to an aphresis machine and it changed it to a aphrodisiac machine. BWaaHaaHaa. Goofy thing.

The whole process of the stem cell harvest was a real walk in the park. Just lay back and let the machine run you blood through the aphresis (separator) for a few hours. It only took me 3   They now /have harvested stem cells, but we won't know if the have the required amount for a person of my  hours to collect the volume they needed. We won't know if there are enough stem cells until it is tested because it is determined by the body weight of the patient as to how many stemmies are needed. Should there not be enough then I will need to repeat tomorrow. It may not look like a lot of stem cells, but I am hoping their are over 2 million stemmies in there.

I am hoping its enough then they can remove the (pain in the neck) catheter. Just kind of joking about the pain in the neck because it really didn't cause me to much angst. I've heard some others did have some difficulties with it. Like so many things with this disease and treatment it is a very individualistic situation.If enough stem cells were harvested for me today then I will have the catheter removed late this afternoon or early evening. All in all the catheter insertion and harvesting was a very mild procedure and almost completely pain free. I can tell that it looks a heck of a lot more intimidating that it is in real life.That doesn't mean some people will not have a tough time with it. I didn't and am grateful for that.

This evening stemmie sister Sarah will be receiving her stem cells back that were harvested a few days ago. She has finished her 4 days of chemo and ready for the transplant of her stem cells and let them build a brand new immune system. One that will no longer attack her immune system as the defective on was doing. We are all excited for her and there will be a little party in the common room. Dr. Fedorenko has a ceremonial presentation for her that we will record and post so others can so it also.

We have two new patients checking in to the hospital today so hopefully they will be able to participate in the stem cell party for Sarah. It would be great for them to have a positive experience on the first day here. I'm sure there will lots of smiles and laughter. And we are going to be eating cake!

Sarah honored me with the recording of her stem cell transplant. She did brilliantly throughout the whole procedure. She now officially has a brand new immune system, One that should discontinue to attack her nervous system unnecessarily. WootWoot!!!

Watch the link of her transplant. It is very short and only takes a couple of minutes. She handled the transplant like a real trooper. Very happy and proud of you Sarah!! Celebration cakes tonight.
Click the link below. Another link will drop below and click the link on the new one to be taken to the video.

https://www.facebook.com/sarah.blagbrough.9/videos/10210504086414720/

We then had the stem cell birthday celebration along with enjoying some cakes. Dr. Fedorenko likes to perform a ceremony with presenting a small gift to the newly born and pouring of liquid nitrogen on the floor. Please enjoy this video as well.

https://youtu.be/xIIoTpPsu5o 

Treatment day 4: Medical treatment is getting a little more invasive and a little more intense

Several of us began to have some back pain from the steroids and stem cell stimulation medicine last night. Dr Fedorenko was able to provide us with medicine which provided us with very quick relief. Stem cell stimulation can cause bone pain as the stem cells are leaching their way through the bones. I've read that it is fairly common to have this issue with back, hips, and legs. Thankfully it seems to be quite mild for all of us. Today I did not really have any pain just some discomfort. I took two Tramadol thinking the pain would build during the day. But, to my pleasure it did not so I did not take any more medicines.

Received the morning dose of the steroids. Before I had an opportunity to do anything else I was summoned from me room, Led up to the third floor and was prepped for the insertion of the neck catheter. Purpose of the neck catheter is to remove the blood that is carrying all of the newly generated stem cells from your body to run through an aphresis machine to harvest the stem cells. The aphersis machine works similar to a dialysis machine. The difference is a dialysis machine removes human waste from the blood by filtering the blood. After the blood is filtered it is returned to the patient and is clean blood. What I will have done to my blood is to essentially separate the stem cells from my blood and is collected so that it can be returned to my body when the time is right. Importantly the stem cells must be frozen during the wait or they will not survive.

Wanted to take a moment to explain why I am have a neck catheter installed and what the point is of doing something this this. When it comes time to harvest and return the stem cells I will dive into the details a little more. I snapped some pictures of my stem cell brother Brian Melton, with his permission of course. The procedure was exactly the same for both of us and they were both completely uneventful.

To put things into perspective here is the size what the catheter looks like is that actual size. It will run down the jugular vein right up to the heart. Brian mentioned that he felt some heart palpitations during the insertion and the doctor told him it normal and not to be concerned.

 Actual size of catheter removed catheter from Sarah

 Brian receiving local anesthesia before insertion

My finished product. It looks way worse than it was. Not really painful because of the local anesthesia. Just felt some pressure. After the anesthesia wore of there was some tenderness and stiffness, however it was mild to say the least.

I decided to add one more picture of Bryan's catheter being inserted.This illustrated how the catheter follows the guide down through the jugular vein. The doctor had to push fairly aggressively to get the catheter into proper position. A person needs roughly 2 million stem cells per 1 kg of weight. Well pot belly Ken here weights 109 kg. So I need a boat load of stem cells. We will have to see how well we can produce stem cells or we may be doing this a couple or three days. Sarah was able to hit her number in one day. Dr. Fedorenko told me that 25% of patients can complete in one day. More on this topic tomorrow as we get underway.

Tomorrow Sarah with have her stem cell transplant after we are finished with the harvesting of our stem cells. Dr. Fedorenko has a way cool tradition her for celebrating a patients transplant. He calls it a New Birthday and is considered year 0. Brian, Espen, and I purchased a Birthday cake for Sarah. (Truth be told the birthday cake is kind of for us too because we are looking for any old excuse to eat flavorful food, ie non hospital food) LOL Forever now Sarah will two birthdays to celebrate each and every year!!! Should be a festive event. I'll take some video and copy it in the next post.

Couple of quick pictures of our hospital food to give you a flavor(less) idea of our cuisine. Honestly though its not all bad. I brought a handful of spices to spruce things up a bit. Found the boiled apples to be tasty. I like to sprinkle cinnamon and sometimes I add sugar. Their soups are fairly good also. They do not come with salt and pepper so I brought my own. Sometimes I add some Rosemary too.
BTW, these are two separate meals. Portions are fairly small so a person should eat all of your food or you will remain hungry until the next meal.

Well I am off to bed, it will be a big day tomorrow. During aphresis tomorrow we get the displeasure of wearing a depends diaper. We will be chair bound for 4 to 5 hours and cannot take a bathroom break.Ah...technically we can take a bathroom break, that is what the depends is for after all, we just can't walk into a restroom like a dignified adult. :-)


 

Treatment day 3 steroids creating a comedy routine within our group

Last night my doctor increased the Neupogen injection as he is ramping up to the desired dose.

Started the day off with another routine infusion of steroids. Shortly afterward our internet went down. Nooooo! We lost our connection to the outside world. Seems that we have become totally dependent on the internet. Oh well, it gives us a good excuse to do a few other things. Some people went to the Red Square, St. Basil Cathedral, and the Kremlin. Others stayed inside and rested. I decided to take a walk to a new market to continue to prepare for isolation. Dr. Fedorenko says that getting some exercise after infusions are a good idea. Steroids make a person overly excited, moving a lot, talking a lot, and just being funny (or annoying maybe?) LOL

A steroid induced conversation would look something like this. Totally fictitious conversation, just illustrating what it would sound like.

Patient 1: inhales and says very quickly without taking another breath

IsurelikethehospitalhereandthepeoplethedoctorisrightontimeforeverythingthatIneedandIreallyappreciateitIwishwecouldgettastierfoodthoughIwonderifitwillsnowtommorowWhatisyouredss? (inhales)

Patient 2 inhales and says very quickly without taking another breath

IknowwhatyoumeanDidIevertellyouaboutthetimemyopticneuritisflairedupduringtheworldcuplastyearIwassomadbutitreallydidntmatterbecausewewonSureamgettinghungryIsthereanythingtoeataroundhereDoesanyonehavefoodinthefridge? (inhales)

Patient 3 inhales and jumps in by saying very quickly

 IlikefoodtooDidyouknowthatwehavethreekidsages161824theyknowhowtoeatfoodlikecrazyIveneverseenanythinglikeitinmylifeIdontknowhowpeoplecaneatthatmuchfoodandnotbesuperfatHasanyonenoticedthatthereishardlyanyonehearoverweightIwonderifitisbecausetheyeatsuchsmallportionsorisitbecausethefoodissoblandDoesanyonehavefoodintheirroomseriously?

Just imagine if someone was watching a comedy ping pong match. Looking left then right and back to left all while laughing at the entertaining ping pong match. Well that really was what my wife was doing during our steroid induced conversation. She was thoroughly enjoying herself and we were completely unaware. LOL

Our group seems to get along quite well. Tonight several of us ventured out in the city and went to a restaurant for dinner and a couple of drinks. We ate good food, had more steroid induced laughs, unwound from our medical treatment, all in good fun. I think these pictures will illustrate just that,

Tomorrow we will receive another steroid infusion in the morning. But things will change very rapidly from then on.Treatment will get a little more intense. Shortly after the infusion we will have the neck catheters installed to prepare for the stem cell harvesting. A couple of days after the harvesting is when we start the chemotherapy. Then will be isolation, so you can see that the treatment is ramping up. So far I do not see anyone getting anxious about what we are doing,

Would like to point out an observation that I have. This is only my observation so it may not be 100% accurate. But what I am seeing in our group is a very determined group of individuals that are very well informed of the treatment were are receiving. We all seem resolute in our decision to receive HSCT with the intent to maintain our quality of life and by some off chance recover some of our deficits. Knowledge is power and I feel this group has the knowledge to make a very good educated decision. I. really proud of each and every one of them. I like to think of them as my stem cell brothers and sisters.

Treatment day 2 Hospital pictures & more

Not much to talk about today. Fairly slow day in terms of the treatment. Last night was a little bit negative in that the steroids and Neupogen gave me insomnia to the tune that I did not fall asleep until 6 am. Just stared at the ceiling without feeling sleepy at all. Not even a little. Did take a sleeping tablet at 3 am when I was given the second Neupogen shot. Didn't help, so the Dr. told me to take two tablets tonight instead of only 1. Hopefully it will help.

Had another steroid infusion in mid morning that was uneventful. Which is a good thing! Bernard and I walked down to a store to pick up a few more items. First time I had been at this store. Its closer to the hospital so it is nice and convenient. A little small but had mostly what we were looking for. Will probably make another trip there to get some items for some of the patients who are unable to leave the hospital. Its a very close knit group that is anxious and willing to help each other. Get the impression that is the norm here at A.A. Maximov Hospital. Certainly is getting to be a family type atmosphere among ourselves. Kinda feels like everyone will do whatever to help another and do it without question. We've not talked about this yet as a group, but that is unequivocally how I feel. It seems other peoples actions validate this to me. Wanted to mention this for any future patients coming to A.A. Maximov. Do not agitate over being here alone if you do not have carers attend with you. There is a built in carer group within your group. Wonderful experience to say the least.

Our group is well represented by a diversity of countries. I may not have this exactly correct, however the point remains that we have patients from all over the world. For those that speak very little English we use Google translator and have understandable conversations. The group consists of patients from 2)Norway, 3)Australia,1) United Kingdom,1) Ireland, 2)Russia, and 2)America. Starting Monday there will be some new arrivals and I am unsure of what country they will arriving from.

Should anyone be interested in the schedule of HSCT I decided to add this page. We received this paper upon admittance. This document is a brief overview of the schedule for HSCT treatment at A.A. Maximov Hospital in Russia.

Some information about the doctor that the hospital is named after and I have the impression that he is a major figure in the world of stem cells.

A.A. Maximov Hospital in Moscow, Russia. Named after Alexander Maximov, some consider to be the father of naming the term "stem cell". He and his family fled Russia in 1922 and moved to Chicago and continued his work there until his death. They changed the family when moving to Chicago from Maksimov to Maximov. Pulled these bullet points from a web page online that gives A.A. Maximov his due for his work in the stem cell field.

1908: A Russian histologist, named Alexander Maksimov, is the first to propose the term "Stem Cell". Maksimov proposed the term during a congress of the hematologic society in Berlin. He was the first to hypothesise the existence of haematopoietic stem cells.

1924: Alexander A. Maximow identifies a singular type of precursor cell within the mesenchyme that develops into different types of blood cells. The cells discovered, were later revealed to be mesenchymal stem cells.

Read more: http://www.stemcellsfreak.com/p/stem-cell-history.html#ixzz4P9jFYRB2

Photos of the facade at A.A. Maximov Hospital.

Small chapel on the grounds here.

 Later tonight I will receive two more shots of the Neupogen drug. This time I will be taking 2 sleeping tablets with the hope that I can get a full and restful night of sleep.

Our group is planning an outing for dinner tomorrow night. Should be fun and entertaining. Its going to a positive experience for the people that have been cooped up a little longer than the newer arrivals. Psychologically should benefit us all. Things like this reinforce to me that we are gelling into a informal stem cell family.