KEITH'S JOURNEY TO MOSCOW TO RID HIMSELF OF MS
Hematopoietic Stem Cell Transplantation for MS
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Has it really been three years?

10/10/2016

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It is truly amazing to think that a full three years has gone by.  Wow, how does time fly... 
I have really been contemplating how to put to paper my thoughts and experiences over the past three years.  At the end of the day, I'm just not sure how to go about it, so I will simply start writing and see where this takes me.  
Of course, after three years, the million dollar question is how am I?  Personally, I am great, MS wise, it leaves a bit of room for improvement.  So how have things progressed? I will take it back to six months post HSCT and start from there.
During the first year post transplant, everything went according to the scheduled recovery. My blood work slowly returned to its normal values and with, that my energy slowly returned.  It was not always a smooth road though and with that I will segway into the first area I wanted to discuss.  There is a debate among people who have had hsct whether they should have a hematologist or a G.P. follow them post treatment.  For all of you listening, I would like to chime in on the subject. So what is the difference you ask?
Your general practitioner will typically order a cbc (complete blood count) along with TSH, T3, T4 etc.  These are pretty good indicators for general blood health and give a fairly good global picture of how the leukocytes are performing post transplant.  That's great, isn't it??  Well, yes, except when you bring in the expertise of a hematologist, he/she will not only check all of the regular stuff as above, but also every subset of blood type there is.  As an analogy, it's kind of like if the GP checks out how North America is doing as a whole, the hematologist also looks at how  the individual cities that comprise North America are performing.  Why is this important?  When I first transferred to my hematologist (a transplant specialist) my global blood work was looking really good.  I was surprised when he got my blood work back, that several of the subsets of lymphocytes were still yet to come back to normal.  They have all since then and look really good, however I would never have been the wiser had he not checked it all.  Secondly, as in about 10% of post transplant patients, I had a protein show up in my blood work that isn't typically supposed to be there.  Now, what's the big deal about this protein?  Isn't that just going to make me look more like Arnold in his glory years?  Well, when first found, this scared the living you know what out of me.  Many sleepless nights.  I had to do blood tests every 3 months as we watched and waited to see what it was going to do.  Thankfully, it stabilized at a low level and as long as it stays this way, it's not a problem.  As I say, it happens in about 10% of hsct'ers and should just fine in the long run. However, it needs to be monitored!  I don't care how many 'doctors' we have in our hsct forums that like to give out health opinions, safety first!  Get checked by a specialist who can guide you safely through the years following your transplant.   That's my rant...moving on...
Now, onto MS.  For the the majority of the first two years, my MS was actually relatively stable.  No new lesions on the MRIs and outside of the recovery from the treatment, I feel I was doing quite well.  Over the past year, however, my MS has reared its head and let itself be felt again.  It has again, hit me in the same manner as it did before, targeting my legs and gait for the most part.  I do use a cane for doing walks outside of the house.  (I never used any supports of any sort prior to treatment).  My spasticity, which I honestly feel has been a bit worse since the three month mark post hsct (steroids wore off), has been awful for the most part.  I am back taking baclofen, fampyra ( for walking) and copaxone.  Why copaxone?  Simply because it has one of the longest running safety profiles.  Can't say  I enjoy the daily needles...
So in a nut shell, am I worse than before hsct? I can now say yes and that things are now changing again and while the transplant slowed my MS for a while, it has now come back...crap...shit...fuck... 
The next question I get is would I do it again?  This is likely the question I have thought about the most over the past few years.  Of course, knowing that it did not work, I would tend towards no, but who knows where I would be if I hadn't.  Would I be worse?  Further disabled?  I will never know the answer to that so a tough one to answer.
I think I would simply like to pass on my thoughts so if in some small way it helps those considering this treatment.  I would summarize it as this...this treatment treats inflammation.  There is no doubt it is the most effective treatment in the world, however, if you don't have inflammation, it is much less likely to work.  Not that it won't...I know personally of people who didn't fit the ideal criteria and have had wonderful success. That being said,  it is less likely.  If, however, your MRI's constantly show all those glowing enhanced lesions...game on.  That's what the chemo targets,and that is the demographic that all of the research says it works best for.  Believe the stats.  Your body does go through a lot for this (as well as many other components of your life), so my suggestion is, that if you are not a prime candidate for the treatment think long and hard.  You may not like the decision you have to make, but it may be the correct one.
As for me...life continues on. My three wonderful kids and beautiful wife help me navigate these waters every day.  I am still working as a chiropractor full time, but even that may eventually have to give.  And if and when it does, I will still do my best to keep moving forward whether with legs or wheels.  I maintain a positive attitude and while there is always those days you don't want to come out from under your sheets, I try not to allow them to come over me too often.  Life has a lot to offer, it just may be in a different way than I originally planned.  
Laugh often, love always, live life to its fullest!
Love from Ottawa.
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6 Months post treatment and going strong!

9/4/2014

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     Incredible to think that it has now been over 6 months since my life altering trip to see Dr. Fedorenko in Russia.  It truly feels like it was so long ago.  There are times when I ask myself 'did I really do that?!'  With that being said, all I have to do is look in the mirror and see my now thick, wavy hair and realize 'oh yeah, I certainly did!'
     So the burning question for so many people is how am I feeling?  Was it successful?  What has improved?  All great questions and I will endeavor to answer them all for you.
     Overall, I have to say I am feeling quite well.  My energy has returned for most days, which is a good thing since I went back to work starting in early January. I certainly still have up and down days and the chemo fatigue will still surprise me by kicking in out of no where.  I can be great from 6 in the morning until mid afternoon, then out of no where be dragging my bottom for the next couple of hours.  The good thing at this point is that once you can identify it for what it is, you can adjust your day a bit to accommodate it and it diminishes often quite quickly.  
     As I mentioned, my hair is now back and full!  Little different color with some grey in there too!  Whaaat?  Maybe it's because I turned 40 today, but I'll blame it on the chemo!
     Relating to my MS, there have been some subtle changes in some departments, less so in others, but no progression.  Things that have improved are no bladder and bowel urgency and some areas of paresthesia (sensory numbness) that I used to have are now gone.  No more MS hug either since the second week back to Ottawa.  Good riddance!
     Gait changes have been minimal, but I certainly have the confidence to walk a farther now.  I do not notice my drop foot on the left to nearly the same extent, but I do still find my gait gets quite sloppy after about a km.  It is an area that I am going to be working on going forward.  
With going back to the physical demands of my job so early, I have to this point been quite hesitant to work out.  That has all changed since the six month mark as that was the personal benchmark I set out for myself to achieve before I started to push.  Now that we are there, I am on the eliptical every second day, stretching, and doing physio.  Very quickly, my energy has improved and I feel much stronger.  I have always been an exercise junky, so it feels so great!  Nice to be back in the game!
     After treatment, I did my best to try to eliminate all of my medications as well.  I am no longer on any DMD's (disease modifying drugs), amantidine, and use only 5-10 mg of baclofen a day.  On the advice of the new physio I am seeing (who specializes in MS), I may try to regulate my baclofen a bit better as she feels a lot of my gait issues are currently tied in with my spasticity.  Hopefully with the balance of stretch, strength, cardio and proper meds, I can get back to moving properly again!  I told her my ultimate goal is to run again....something to aim for:)
As for was it a success?  I had my first neurologist  appointment this month as well. So far, EDSS is stable with no progression!  I've always said, I took on this treatment to stabilize and any imrovements obtained were a plus!  So far so good and I will be working on those improvements in the months to come....stay tuned!
Love from Ottawa!
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Day +61:  HAS IT BEEN TWO MONTHS?

25/11/2013

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     I can't really comprehend how two full months has gone by since my stem cell transplant!  Sorry to all those who have awaiting an update.  As always, I am flattered and taken aback by your caring comments and wishes for continued healing
     I can truly say, it is wonderful to be back in Canada!  As much as I felt safe and in great hands in Moscow, nothing is like coming back to the comforts of home.  It  was quite a reunion with my wife and kids at the airport.  I actually held it together for the most part, but I think there may have been a few tears of joy on the plane home!
     So where are we after two months?  Well, as with most people, the first couple of months has been a bit of a roller coaster.   In the early weeks of being home, my gait was much improved thanks to the steroids but as they wore off my spasticity slowly returned.  I still experience the left foot drop, but find my ability to walk longer distances without it becoming a problem is improving.  
 I have good days, followed by not so good days.  In general, however, I feel that every day I am getting better and better.   MS symptoms are a strange animal and every person with the disease will tell you the same.  I had two days about a month ago where my symptoms were absolutely terrible.  I was fatigued, a lot of leg spasms and heaviness.  I suspect it was a reaction to my over doing it physically ( I 've never sat still well) but boy did I pay for it!!  Then, as if nothing ever happened, I awoke during the middle of the night, and it was gone!  Very bizarre!
     My energy levels are slowly improving each day.  I have to respect the fact that I am still anemic (low red blood cells, hemoglobin, and hematocrit).  While the treatment was aimed at destroying the white bone marrow (Leukocytes), there is collateral damage to the red marrow (red blood cells) as well.  Every two weeks, my MD monitors my blood work and so far we are heading in the right direction. 
     I suppose the long and short of it is that I am recovering, but it is a slow process.  The chemo is pretty serious stuff and I continually have to remind myself not to get frustrated by my body as it has only been two months.  Not a long time when you consider the amount of recovery that has to take place.  I am going to return to work on a part time basis in a few weeks to test the waters.  I figure it is a good time to try it, followed by a nice long break for the holidays!  I am very much looking forward to a bit of normalcy in my life!
     In terms of the MS, no new symptoms, which is a good sign.  I have always maintained that I hoped for remission and if I get some improvements that is a bonus.  While some experience improvements early on, I still think it is too early for me to tell what may be gained. 
I should also mention that for the first time in years, I am on absolutely no medications!  No disease modifiers, no anti fatigue meds, and no anti spasmotics.   What a great feeling!
     My days are filled with gentle exercise, rest and recovery.   Each day is better than the last and I look forward to all that my future holds.  I will do my best to update everyone at the three month mark!  Until then....
All the best from Ottawa!

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DAY+16: DISCHARGE DAY

11/10/2013

23 Comments

 
What a wonderful day here at the Pirigov National Medical Surgical Centre.  Why you may ask??
Today is my official day of discharge from the autologous hematopoietic stem cell transplantation program.  Complete blood biochemistry was drawn early this morning to ensure that all parameters were functioning within normal limits.
TODAY'S FINAL BLOOD VALUES:
Hemoglobin: 108
Leukocytes:  11.62 (mildly high, but not unexpected over the first week of recovery)
Platelets: 300
All other biochemistry, coagulation tests,  ALT, AST, creatinine, calcium, uric acic, blood sugars, electrolytes, all within normal limits.  Upon examination, Dr. Fedorenko did question how much fatigue I am experiencing, which is quite high right now.  He explained it was a two fold reason.   One, chemotherapy and rituximab still working in my system, and two; that I am still pretty anemic after the therapy.  One of the saving graces of this lymphoblative or non-myeloblative HSCT regimes, is that it is relatively sparing of the red blood cells and hemoglobin...but only to an extent.  They are still reduced to about 60% of their normal resting values, but this should recover quite well over the next month.  With that, comes energy and a bit more pep in the step.  So what helps with fatugue?  How about a huge slow acting steroid shot in the bottom...sold!  Did the trick!
Since all testing came back normal today, I also got to say goodbye to my sublclavian line which has been hanging off my right collar bone for the last month!  Check this out!

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Just to clarify what it is you are looking at.  You can see the dark blue catheter being held by the nurses hand...that portion to the right was external, had three ports which were used to take blood, use IV's etc.  The light blue portion to the left (about 8" long) was inserted into the Subclavian Vein.  The reason, is that whenever a medication or fluid is injected, it is immediately perfused throughout the body due to it's proximity to the heart. 

We were able to escape for a trip to a local store where I devoured two ice cream sandwiches and came back to the hospital to await Dr. Fedorenko and Dr. Julia's marching orders.  I have been provided with strict instructions regarding medications, foods that can be eaten or avoided and general lifestyle guidelines.  I can expect symptoms to temporarily get worse for the first few months after treatment.  This is understandable, given all the physical stress that I have put my body through.  
    But the most important message you are left with is, exercise, eat well, do your physio regularly and live life!  They all say that even if treatment is not 100% successful in the conventional way, if you live by these facets, you've already won....100%
I'll leave you with a few pics from today and on a very high note!

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Some sunshine on a fresh bald head...feels kinda great!

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Enjoying some fresh air!

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All star head nurse Galeena

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Dr. Julia, myself, and Dr. Fedorenko

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Mom, Dr. Julia, myself and Dr. Fedorenko 

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Still one of my favorite pictures of this magnificent hospital!

We are gearing up for our return home early Monday to reunite with our loved ones.  To all of you who offered your thoughts, prayers, support, emails, etc.....thank you, thank you, thank you!!!  This experience has been difficult, but accomplishable with the love of others.
I will likely take a break from blogging for a bit.  Most of what occurs from here on in is measured in months, not days or weeks.  I will do my best to send regular updates, likely after a month or so, as my body takes time to heal and regain some of it's old strength and stamina! 
One last time, on discharge.....Love from Moscow!
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DAY +15: Discharge tomorrow!

10/10/2013

9 Comments

 
Wow!  What can I say, other than I cannot believe it has been almost 5 weeks since my journey here in Moscow began.  I have mixed feelings being at this stage of the treatment as well.  Yes, the medical treatment here was second to none, I have felt 'reasonably good' the entire time through the process and the staff and doctors are second to none in the world.  Why the mixed feelings?  Because in all reality, while the procedures are done, now is when my body actually starts the healing process.   This will take time, patience, and yes, more time.... 
    We have now drawn up a new rebooted blueprint for my immune system to follow, one that in essence should be self tolerant.  Many of you who have known me for many years will not even have noticed the subtle changes that have happened within my body and capabilities.  Now, over the next months to several years, the anticipation is that left unchallenged, some of the nerve damage that has happened in both my brain and spinal cord, may start to heal.  And with healing, comes function.  Will I be able to run marathons or play men's league hockey anymore?  Anyone's guess.   Would I love the opportunity to feel normal to be able to run after my kids to get to the park....hell YES!  This is why I made this decision to come here at a 'relatively' early state of disease to try to optimize quality of life going forward.  
    Each patient who undergoes HSCT reports various markers along the way post treatment.  Often symptoms get worse for a few months, before very subtle changes take place.  Every day must be appreciated for what it is and the challenges is will bring. Take the good days when they show and celebrate, take the bad days in tow and chalk them up to just being a bad day.
Today was better than yesterday, pushed a bit longer, walked a bit further, but I can definitely feel the dexamethasone tapering and the effects of all these meds working their way out. 
Dr. Fedorenko will review all of my final blood chemistry with me tomorrow and review my plan of action for follow up in Ottawa with my physicians there.  All I can say ultimately is that I truly feel blessed for being here with the superior care I have received.
I will update you all with the final analysis tomorrow.  
Until then, love from Moscow!
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One last pic prior on the day the isolation doors were finally opened!

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DAY +14:  dAY AFTER RITUXIMAB

8/10/2013

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Today will be a two part post as the blood work has been drawn, but will not be received for the next couple of hours.
Funny story regarding yesterday.  I know I filled you all in on the narcoleptic attack that lasted the entire 6 hours of Rituximab infusion, just that the story did not stop there.  I was able to have a quick bite to eat, then sat on my bed thinking I would send off a few emails, get caught up, etc.  Problem is I kept drifting in and out of consciousness to the point where I finally said enough is enough, hit the lights, it's time for bed (a dubuious task to convince yourself of when you have already slept away your day).  Well, apparently, it was the right move, because I did not shift again until 8 AM today!
I have not slept 17-18 hours in a day since I was a teenager!  It made me chuckle to myself as Dr .Fedorenko kept telling me with my stem cell reinfusion that I was looking younger by the minute!  Maybe there is something there, but we won't get too excited yet:)
Today will be all about getting the body moving again, trying to break down the cobwebs and pushing the envelope to within reasonable limits.
I'll publish more once I get the blood work back in.  No bone pains last night either, which was a definitely plus!

Blood Values for Today:

Hemoglobin slightly up to 108
Leukocytes holding at 21.78
Platelets 342

Dr. Fedorenko has assured me that the values of the leuks will continue to fall, with the next big set of blood chemistry tests being Friday.  Not as much purpose in performing them each day as we just have to wait for my body to settle down into normal limits, which takes time.
    On Friday, we will review all of my translated charting and subsequent medications, supplements which he recommends I continue with upon my return to Canada.  This will be followed up with regular appointments over the next coming months with my GP to ensure things regulate as expected.
    Tough day getting around today, although as usual I did push with several walks.  This is partly from total lack of exercise and movement yesterday, but likely more because now I have a secondary agent working through my body breaking down other specific components of  my immune system.  The good thing...is other than tapering down on meds, we are on the right side of the treatment regime:)
We will see what another night with good sleep brings.  Each day opens new horizons!
Love from Moscow!
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Day +13:  RITUXIMAB INFUSION

8/10/2013

3 Comments

 
Today was the to represent the last of 'major' drugs I receive during the course of the HSCT process.  This is called Rituximab, which is a mono clonal antibody used to deplete any of the extra B cells which may have eluded the chemotherapy  portion of the treatment.  While it is not technically a chemo drug, it does pack some punch with it.  It has a very good safety profile with it, with the most common types of side effects involving histamine reactions.  So to counteract any of this, first and foremost, you get your normal dose of steroids (which are already on the taper for me) and an hours worth of antihistamine drip.  
    I should preface by saying that last night was not a good night sleep, 2 hours, here, 2 hours there, so between that and the increased exercise I threw at myself yesterday, I was not a ball of energy today. 
    The process of rituximab infusion takes minimum of 5-6 hours, up to several more if the person is reacting with any allergic symptoms.  Mine started about noon.   It's all about slow and steady.  So the lovely head nurse Galeena comes in, gives me the steroids, antihistamine, etc then hooks me up to the Ritux....Ever gone to the dental surgeon for procedure and they say count back starting from ten and you usually don't make it to eight?  Well, lets just say I woke up long enough to scarf a 2 pm meal, then back asleep until 6pm!  Crazy...must have switched the bottle with the elephant tranquilizer!  Wow, did that feel good.  Not to worry, the doctor apparently checked in on me no less than four times while I was in full drooling mode.  No concerns just making up for lost sleep I guess. 
I have always been fortunate in my lifetime to not have to take more than a handful of any type of medications, so no surprise these things are doing what they are supposed to do to help me out here!
Last big one today!  Very pleased to have it done.  The next week will be plenty of blood work, weaning meds, getting my conditioning up, and hopefully getting this Subclavian line out of my neck at the end of the week or weekend!  Cant say I'll miss it! 
All the best from Moscow!

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DAY +12:  ENGRAFTMENT CONTINUES, ALL SYSTEMS WOKING FINE!

7/10/2013

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It is very difficult to believe that I am now at this point in my journey.  Over 4 weeks have gone by, and now we are looking into the final stretches of infusions and medication weaning.
Last night was similar to the one before, in that about 3 am I started to experience right scapular and chest pain, which seemed to continue more into the lumbar spine.  Intensity wise, only a 2/10.  Since I'd been through it the night before, I simply took a couple analgesics, Skyped my wife and kids at 4 am (which works perfectly for their bed time back home), then got back to bed once the pain was gone.  Really a non issue.  Makes it easier when you can identify it as what it is when it's happening.  Interestingly, a prior HSCT patient here contacted me to tell me it was exactly the same presentation she had had.  Same places, high intensity...

So what happened overnight?
Hemoglobin is at 103 from 100
Leukocytes are at 24.5 from 23.7
Platelets are at 320 from 267

Not huge jumps in the leukocytes as these should continue to normalize over the next week. 
Dr. Fedorenko has checked all my blood enzymes, liver tests are all within normal limits, so now tomorrow we get to move onto the next phase of care....Rituximab.
Rituximab is not  a chemotherapy drug, it is called a  monoclonal antibody.  These are mono specific antibodies made specifically to a certain cell.  In this case, Rituximab is used as an antibody to clean up any extra or aberrant B cells that may have worked their way through the chemotherapy agents.  Consider it like a safety net, to be sure no autoreactive bad guys got away through the first round.
The IV session takes somewhere around 5-6 hours and is done very slowly and controlled, The reason it is done so slowly is to be sure that the body does not have any type of allergic reactions to it.  Antihistamines are administered throughout as well, so I think in the big picture, it is just going to be a long, slow day.
We have begun half dosing all steroid infusions every day and will continue to do so while being monitored through the rest of the week.  As well my 'puck bag' full of broad spectrum antibiotics, etc, will start to lighten as my immune system is now at the point where it should start to carry a bit more of the load (and get learning what's right from wrong....properly!)
    The day was definitely slower on the rise this am, , but in fairness, yesterday, I believe I moved more than I had in the past week combined.  We were able to get out for several more (longer) walks today, followed by the necessary rest afterward.  Amazing, again how the body let's you know what it can do, then says that's enough.  I likely did three times the exercise today, and felt great, and needed more sleep.  Each day will get better and better and the conditioning will come back as long as the limits are respected.  Helps to have a mom who is a physiotherapist and calls me out on it saying 'too much, time to sit'.  Every patient who has undergone this procedure, will attest to the mantra....'push too much and you set yourself back....just find that right balance of patience and perseverance!'
I look forward to a major milestone tomorrow!
Wishing you all health and healing from Moscow!!!
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day +11:  ENGRAFTMENT AND THEN SOME...

6/10/2013

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After an exhilarating day yesterday, where I was elated to have my isolation restrictions modified and finally able to walk around the ward a bit, I was in a very good head space.  I have always maintained through this entire process it requires the person to be 'in the moment' at all times and don't go overboard, as recovery is on a time line.  It was a day of a milestone victory, and I celebrated by walking a bit more, listening to my body and resting appropriately.  Everything as usual according to plan....
Until about 11pm last night.  I had finished watching a movie, some emails, etc, when I noticed a bit of an ache emanating from my right scapula.  At first, I figured, bad posture, muscles are aching a bit, nothing to worry about, so we'll just monitor it.  Over the course of the next hour, however this dull ache became increasingly sharp, then radiated to the front of my right shoulder and right chest region.  The pain was now increasing  regardless of my body position, now up around a 5-6/10.  Was I really concerned?  No.  However, being what HSCT is with immunosuppression and chemo, I thought for once in my life I would be prudent and ring the nurses bell and hang my head in shame. 
I had already taken my own vitals, blood pressure was good, no fever, only mild pain with deep breath but the nurse called Dr. Nakita at midnight to ponder a few more questions with me.  To his credit and the staff here at Pirigov, he did not hesitate and showed up to examine me. 
They ran an ECG, to make sure the heart was good...no surprises all fine there.  Many vials of blood work ruled out a thrombosis (blood clot) and that there were no underlying infections in my body (which was my primary concern.)  He administered a nice bolus of analgesic into my Subclavian line, and sure enough, after an hour, the pain subsided and I was able to get comfortable enough to get some sleep at about 2 am.  Again, I was never really all that concerned that there was anything ominous happening as all of my other body signs were, and have been good, but it was very reassuring that this staff know what procedures to do and make sure that patient health is never compromised.
So, enter Dr. Fedorenko this Sunday morning after travelling 18 hours to Estonia to present research to bone marrow specialists regarding the extensive studies they are performing here, and with his usual smile and warm approach, he comments to me about the engraftment pain I had experienced last night.   He had already reviewed my file from the previous evening and knew everything looked great.  He then asked if I'd like to see my blood work from this morning? 

Today's Blood Values               Yesterday's Blood Values
Hemoglobin: 100                        101
Leukocytes:  23.7                        8.43
Platelets:  267                             185

My Leukocytes shot through the roof last night with the engraftment!  Normally there is some overcorrection early on, but considering the normal range for Leuks is 4-10...23.7 is a bit high.  THERE IS ABSOLUTELY NO REASON FOR CONCERN WITH THIS.   Just another reason why doing this type of procedure where they perform them by the hundreds is helpful.  Experience, experience, experience.  Some patients overshoot up to 30, before dropping back down.  He says it may take a few days to a week for the big correction to happen, but it sure does explain the sharp aches I had.  Leave to a Moore to do nothing half way!
Today, I awoke with no pain, eager to get outside...and yes, sorry to all of those in Ottawa who have a grey day, but for the first time in weeks....it's sunny in Moscow!
Did several very slow trips around the grounds, taking breaks and just soaking in the sun.  Not only have the skies been grey, but I haven't been able to be outside to enjoy them.  At one point, I just stood for 20 minutes gazing up feeling it reflect off my albino scalp (may need sunscreen tomorrow:)  How great is that!
Anyway, it was just a refresher for myself to stay in the present and deal with things as they show up.  It has been my mantra since I've been here, and will be for the next few months too.  Listen to the body and learn.  Feeling great again, looking forward to a good rest tonight!
Everyday is another step forward! 
Health and healing from Moscow!
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DAY+10:  NO MORE ISOLATION!!!

5/10/2013

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Ok, while not out of the woods or completely healed, etc, I am going to take today as a bit of a victory, as today was the first day where my total isolation requirements were dropped and I was able to stick my head out of the doors of Suite 328!  Boy does that feel GOOD!!!
My first clue was when the nurse came in to do my blood draw this morning wearing only a mask (not full body gown, gloves, etc.) and was pulling in IV poles from out of the IV suite.  I've had one dedicated to my room since I went into isolation, which was kept sanitized but never removed. 
Dr. Julia appeared just after breakfast to let me know I was cleared to leave my room, not the isolation unit just yet,  and always donning a mask, but this meant being able to move the legs a bit and have some human contact with mom again.  What a wonderful feeling! 

TODAY'S BLOOD COUNTS            YESTERDAY'S BLOOD COUNTS
HEMOGLOBIN 101                        106
LEUDOCYTES  8.43                         6.04
PLATELETS    185                            127

I find it amazing how the body will innately tell you when things are different.  We all receive these cues, and perhaps people with MS are just better at listening to them, but immediately once I stood up today, I knew things were different.  I 'felt' like my blood flow was better, a bit more clarity, deeper rest...little things.
So how did the day progress?  After celebrating and saying hello to everyone outside of Suite 328, I walked the length of the hallway (about 100-150FT?) back and forth about 4 times, sat and rested, and repeated.  Nice and slow, just to get the blood moving where it hasn't in about a week.  From there...shower, cleaning routine, removing another 20% of the hair on my head and face, then a 20 minute nap where I think I must have been hit with a tranquilizer!
Awoke fresh, then at it again.  10 routes up and down the hallways ( and when I say routes, I'd be considered in the 'slow lane' at the old age home amongst the walkers), Sat for a bit, had lunch, then a solid 45 minute deep sleep.  Cut and paste a couple more times and you get where this is going.  This is all going to be about re-establishing physical ability, within the respected confines of what my body will let me do.  There is no benefit in over doing it, as my body will simply not handle it and fight back.  That being said, do nothing, gain nothing!
I am so very happy to have the next few days to be able to get this machinery up and running again.  We'll try to get that hemoglobin back up and firing again now that there is some more blood circulation to the extremities.
Peace, love and freedom from the Isolation Ward in Moscow!!!
Picture
Geeky pic, but still makes me laugh with the bald head, mask, and sterile monk attire:)
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