My 5-year post-HSCT report: March, 2019 - I'm SO Not Dead Yet!

67.

Бо́гу моли́сь, а добра́-ума́ держи́сь.  

Trust in God, but steer away from the rocks.
 Literal: Pray to God, but hold on to your good mind.

March 1, 2019 - Nearing my 5-year post-HSCT anniversary

That's me with my husband, Jack, arriving in Hawaii last summer. Great fun, and included my entire family of 14 - one of our annual family trips (my Christmas gift - I truly will do anything to keep from having to shop in a mall!). 

I think it says a lot about where I am, enjoying these extra years I have because of HSCT. I have lost 3 friends in the past 12 months, all of whom had CIDP as i did, and began with it about the same time. I was the only one who did HSCT. It has been so devastating to watch those CIDP friends not make it, and others continue to get worse over time. And I do know that there but for the grace of HSCT go I. 

Treatments for CIDP are rough. IVIg, at first a miracle, takes its own toll in time. I had serious problems and side effects from it in 2014 when I made my own decision to go to Moscow for HSCT.  

I do not believe I would have had these last years without HSCT.

It has not been simple nor without health issues, true. My post a year ago outlined the most serious post-HSCT issues I've had. My lung issue is resolved for now, which was the most serious. I do have scarring in my lungs from that (Cryptogenic Organizing Pneumonia). It is associated with HSCT, but primarily for patients who undergo donated stem cells, and rare in autologous, or our own stem cells transplanted, so not so common at all. Still, if you develop a chronic cough, it's a Dx to outrule if you are a post-HSCT patient. It's deadly. I am not dead yet!  

In fact, my lungs were healthy enough to undergo full anesthesia twice in recent 6 weeks, both related to a rather nasty kidney stone which finally was removed about 12 days ago. Doing fine!  Yes, some of the medications that graph directly back to that 2011 flu shot and all that came after it have a side effect of causing kidney stones. This is my 2nd in 2 years, both requiring surgery. Still, I am not dead yet!

I'm so "NOT DEAD YET", I leave in a few weeks for another month in Europe, to be thrilled by watching my granddaughter fall in love with Paris (and London) for the first time. She missed our earlier big family trips to both, sadly - but this is our year to make those memories together. 

I've watched my older grandkids excel in school, and turn into teenagers, and learn to drive. I've watched the little ones learning to talk, adding brilliance after brilliance. They are all my pride and joy.  Look what I would have missed, I'm quite certain, had I chosen to not go for HSCT. 

DO IT NOW!

If you're fighting one of the many autoimmune diagnoses that are proven to be mitigated by HSCT, do it now! The earlier in your disease progression you take this step, the less residual damage you will live with. I wish I'd gone earlier. I still have problems with pain in my feet, legs, hands, and numbness and altered sensation that is a result of the demyelination of sensory nerves. I am grateful that my motor nerves and muscles seem more responsive and I am able to live a full life. Some things linger. Most unseen by the world. My superpower is denial, and I ignore as much as I can and just get on with living my best life.  This is the year I will turn 70.  And I'm not dead yet!  (smile)

66. Update: At the 4-year mark, here's how I am:

66. At the 4-year mark, here's how I am:

Well, a lot of time has gone by, and I'm still here. I still do not have CIDP, but I think there are other things that it's important to add here to the blog in case others run across it in their search for their own cure.

First, would I still do HSCT knowing all I know now?  Yes!  In a very real sense I think I would not have had this past 4 years without it. The effects of IVIg were very dangerous for me in that final year before I went to Moscow (aseptic meningitis; brain inflammation; migraines; exceedingly high post-IVIg blood pressure).  

So, even though it has not all been a smooth sail since, it's still me out here (more or less) doing the things I love; spending time with the people I love; making memories.

This is me last month, walking my legs off in Europe for the entire month, enjoying every minute (almost - still have such pain at night). 

People speak of a roller-coaster healing period, and of the side effects they find themselves dealing with post-HSCT from the procedure, itself.  This is the subject of this blog post at the 4-year mark. I think today is, in fact, 4 years to the day I was at neutropenia, began my new immune system in the isolation of Pirogov, in Moscow, under treatment by that wonderful man, Dr. Denis Fedorenko, and his amazing staff.

This is what's happened since:

1: AVN  (Avascular Necrosis, or dead bone)  Both hips. This is related as a bad outcome side effect of the high dose Prednisone used during the chemo process, I've learned, and I'm far from the only one who ended up with new titanium hips after HSCT. I had my left hip replaced in September, 2016, and my right replaced in late January, 2017.  Hated to lose mine. They didn't have a bit of arthritis on either one, even at my advanced age of 67.  At 1+ years post, both are doing well and are only a minor inconvenience in that I can't cross my legs, can't sleep on my side without pillows between my legs to support the center-line and 90% restrictions to keep them from dislocating. So far, so good.

2: Immune system didn't fully recover. I remain too low on important IG levels and after some working it out, I now do IVIg 1 day a month, just 35mg to augment my own levels. Mine rest at around 225 against a normal of 700-1600, so I really do need the supplement to help me keep from catching everything that passes through.  I will say, it's not a bad trade-off.  I was on 45mg 3 days out of 21 before HSCT, a much higher and more frequent dose, and at this lower dose I seem not to have any of the negative side effects that drove me earlier to go for HSCT.  So this is a good outcome for a relatively unusual low IG level problem that is not so unusual among post-HSCT people.

3: Microscopic Colitis. This insidious problem is associated with surgery, and appeared for me after the 2nd hip replacement surgery. Really came on within a month of that surgery. I was not yet doing the IVIg replacement on a regular basis, but had done a couple months ahead of surgery to try to be sure I didn't get infection during the surgical procedures.  They tell me this is of unknown etiology, can be autoimmune, not necessarily. They have not quite figured it all out yet.  At the same time I was boing through all the testing to determine the cause of gastric problems I had, I also began coughing some and having a shortness of breath. So when they investigated that problem, the microscopic colitis took a back seat.  It's still an issue right now (see later note: current)

4: Cryptogenic Organizing Pneumonia, an interstitial lung disease - no cure, and the only treatment is high-dose Prednisone (Yikes! I get AVN from that, don't I?).  The cough turned out to show on an MRI as "ground glass opacity" rather profuse in both lungs. That was Dx'd in late May, 2017, following a lot of tests, final of which was biopsy of lungs (in which process they collapsed both lungs).  This is how my lungs looked (the hazy gray areas are the ground glass opacity, something that can leave scarring):

I can tell you this past year has been a tense and troublesome time. I was told this stuff would be the end of me. I still am not certain if they might be right.  BUT, I did make it to Europe last month and walked and walked, remember.  So I'm fighting it all.  Sure, the flight over was a bit dicey with a too low oxygen level and a racing heart beat, but I did better on the flight back with my intense fitness program while there.  Treatment started end of May, 2017, 60mg Prednisone daily. Rough! All the typical issues of Prednisone to deal with except the predictable weight gain (Actually, I've lost 35 lbs total since the onset of interstitial lung disease - finally, a side effect that I can be grateful for since I'm now back to my normal pre-CIDP weight and that makes me feel better in many ways.  But, other issues abound, many unseen but felt (hyper-anxiety, sleep issues, skin and etc., side effects galore (leaky blood vessels that do this to my skin):

 Since I worry about AVN with Prednisone, and my shoulders are both giving me problems (MRI scheduled this week to check right one for AVN - hold a positive thought, please!), I was hopeful of getting completely off the Prednisone. After 7 months on it at 60mg, began tapering in January, 2018. Went to 40mg for a month, then to 20mg, then to 10 and to 5mg just before leaving for Europe late February.  Tougher than it sounds.  And once I got to 5mg, I could tell my lungs were impacted again in some way. Traveled anyway. Got home and tried to taper further, but really just couldn't. 

Once I got to 5mg, the microscopic colitis returned, and below 5mg after I got home from Europe, came back with a vengeance. What it shows up as is really just diarrhea.  Bothersome! Yet I thought the way I was feeling was to do with the drop in Prednisone, and almost let things get too far gone before I insisted on some medical help. 

Dr.s ordered blood tests and other images, and within 45 minutes of the blood tests an ER Dr phoned me to say I needed to drop everything and go immediately to the ER.  My potassium level was so low, I was actually into heart failure.  A hometown friend's husband just died a couple months ago, at a youthful 60, and turned out it was also too low potassium. His heart simply stopped.  I was lucky. I got to the hospital and spent 3 days on IV bringing up my potassium levels. They did a contrast CT of lungs to check for blood clots (because I'd done the international flights recently), and instead they found ground glass opacity in my lungs again. Slight different in the way it looked, and the reading said it is indicative of heart failure.   

It's been a rough couple of weeks, actually. Trying to decide if I'm going to be around or not. But by now I'm a bit convinced that the heart failure signals in my lungs had to do with the acute potassium crisis, and perhaps does not represent a return of the Cryptogenic Organizing Pneumonia after all. Still, Dr. put me back up to 20mg Prednisone, told me I can't travel to altitude above 3000 feet, and slightly crushed my spirits.  

We're working on it!  You see, if my lungs remain impacted and I must stay on higher dose Prednisone, then there is no way I can have the one medical procedure I've needed for a long time which has nothing at all whatsoever to do with that 2011 flu shot, or with the Guillaine-Barre/CIDP it gave me, nor with the HSCT I went through to cure it.  I have a lot of degenerative damage in my lumbar spine that needs work, needs 6-level laminectomy at least - old auto accident when I was just a kid of 17.  

So, a lot can follow HSCT. I think you have to really study, know your medical situation and truly lead your medical service team (Drs) in your healing process post-HSCT. YOU have to know more than they do.  They work for you. And things can be fragile and troubling. 

My goal with this post is not to frighten people away from HSCT. It is only to let you know that it's not a party. Not a free ride. Not a given that you won't have some complications of varying intensity and degree following the very serious procedure.  You probably will have some.  I hope you get along great. And that, should you have a few hiccups along the way to great, you will get on top of those quickly and thrive throughout.  

Okay, that's my 4-year progress report.  I've got my entire family coming along with me to Maui in late June - that's 14 of them now.  Have had one more grandson since HSCT, and when I look at his sweet little face, I can promise you I'd go through all of the HSCT again to be certain I'd be here to meet this little darling, and to know him, his big brother (who lights up my life like crazy!) and all his cousins and the rest of my family.  Life is good.  

Here's that sweet little grandson, Ryan, who recently asked the same question I've been grappling with of late re this health stuff:  "All gone?".  I am hopeful as I write this that I'm not quite over yet, and that "all gone" is not the answer. Time will tell. I'm going to just keep right on living every single day. Same as always.  You, too!

What if I had not done HSCT, and had not ever lived to meet this darling little boy:

"All gone?"

Thanks for following my story. And my best wishes to you as you get through your own.  Be well!

Susan Dean

65.  Full circle - Definitive Proof I No Longer Have CIDP  - WOW, huh!

Бережёного Бог бережёт.

The Lord helps those who help themselves.  Literal: God keeps those safe who keep themselves safe.

I picked that Russian saying because at this point in time anyone with autoimmune disease really has to be their own best friend, help themselves to knowledge, research, and usually pay their own way to get their HSCT done, once they realize that's their best hope. My parents used to repeat the English version of this saying throughout my childhood, and I did not grow up thinking things would be handed to me, nor that just sitting back and praying for something was the way to go. To get to HSCT, you must be willing to take action. And "healing" is an action verb, too.

_________________________________________________________________________________

I think it's pretty telling to note that I spent my 1-year anniversary of my HSCT procedure's new birthday, April 29, when I meant to write in this blog again. But I was enjoying myself in Berlin, Germany, seeing it all on foot (yes, it was exhausting) amid a 6 week trip through Europe, UK.  A solo trip, buying antiques and visiting places I love, I found my stamina was only slightly off pre-HSCT normal.


I met Gwen Higgs while there and so enjoyed her company and guide day in the Cotswolds. She's wonderful (another HSCT/Moscow friend, though she went for her MS). I spent time with Linda Martin, who joined me in London for a few days to catch up. My friendships with these others who have also gone through HSCT are so special to me!  Linda had HSCT for CIDP via Chicago, Dr. Burt's program, and was my mentor. I love these women!



Here I am, several weeks ago, enjoying a family trip to Washington DC with my kids and grandkids. I'm the chubby one far right with short (chemo) hair. Missing just one granddaughter, we had so much fun together exploring US history. We toured everything - even an impromptu invitation to tour the Pentagon with a Lt Col. who got off the Metro with us. There were years not so long ago when we had to forego this annual pleasure because I was just too sick, unable to walk, had no energy to participate.  I got CIDP.

BUT. . . .


Today is a RED LETTER DAY for me.  I've waited quite a long time since my last post. I thought I'd write at the 1-year after HSCT point, but I was in Berlin then having fun and just didn't get it done. I spent 6 weeks wandering Europe, celebrating my recovery, and truth be told, some of it made me a little worried perhaps I still had some low-level CIDP going on. A very scary thought and one I kept pushing to the back of my mind, along with the blog update - for that reason. Just wanted to be sure to post positives.

In fact, it takes a long while to truly get over the chemo and bone marrow assault that is HSCT. I found it more daunting than I'd expected.  I had found the actual month of HSCT much easier to get through than I'd thought, though, so rather expected to just be find after it. That first year has it's ups and downs. You feel pretty good and then some little infection will slam you and you have some recurrence of the old symptoms of your autoimmune disease.

There's a FB group only open to post-HSCT "veterans" and lots of others write of the roller-coaster (as Phoebe named it) of recovery, so I knew from them that it was pretty normal.  You seem more vulnerable to illness, which makes sense since your own blood levels and immune system is a baby, rebooting over time. Quite a few had problems with recurring UTI, and I was also among those. I've had 2 nasty upper respiratory "bugs" that were hard to fight off. Both were following my extended travels, and both because my IG levels remain too low. They're coming up, but not as quickly as I'd wish.

When your IG levels are slower to rise after HSCT, they advise supplementing with IVIg. Not in the high dose I was on for CIDP, but some to boost my immune system to avoid getting ill. I did one 45g IVIg ahead of my 6 weeks in Europe and didn't get sick at all. I didn't ahead of a Caribbean Cruise and then again recently ahead of my big family trip to Washington DC, and both times I came home and was sick as a dog for 2 weeks.  Lesson learned: IVIg supplements for 4 months, 45g per month (about a half day plugged in) and just keep living my life. Another 6 weeks in Europe coming in Autumn, and I'll be all prepped for it with prophylactic IVIg. Hopefully soon that will no longer be necessary at all, as my own IG levels continue to rise into the normal range.

Normal IG levels:  700-1600.  Mine currently: 423.  So we're working on that.

But why is it a RED LETTER DAY, you ask?  Well, because today I had the lumbar puncture to test for protein in my spinal fluid (CSF).  You might know or remember from earlier in my blog, that protein, if way too high, is the definitive test result for diagnosing CIDP. The process of demyelination of the nerve's myelin sheath that causes disability, produces high protein levels in the spinal fluid.

Here's what I just got back from this morning's spinal tap (other than a backache):

36 - mid-normal range.  
This is proof positive I am cured of CIPD. Imagine the huge smile on my face today, getting this news.  

What you intend to accomplish, you can!  Don't take your diagnosis of CIDP or other autoimmune illnesses as a death sentence, or as a proclamation of disability.  YOU can take on this enemy and battle it into submission. All it takes is the will to act in your own behalf, and the desire to have your life back. 

This blog and many others can be your guide. Contact me if I can help you in any way. I am happy to be in position now to truly pay it forward.  

I consider this my final blog post. I am cured. 

I will return now to my very active life, grateful every day for all the many people I learned from, followed, trusted on my way through HSCT. 

And not the least of those is this elegant brilliant kind man, Dr. Denis Fedorenko,  Moscow's Pirogov Hospital, Moscow, Russia. 

He saved me!  

64.  Ups, Downs. . . a Few Loop-the-Loops, Such is the 1st Year post-HSCT, and toward a "no moss" year ahead. . . 

Вре́мя -- лу́чший до́ктор

Time heals all wounds.                  Literal: Time is the best healer.

But also:

Видна́ пти́ца по полёту.

A bird may be known by its song.                             Literal: The bird is known by its flight.

Three months have gone by since last time I posted.

I spoke just a bit too soon in my last posting. I was so thrilled to see my blood cells hit the normal ranges, I completely overlooked the one very important one - IG levels. And turns out when I asked to have that tested, I learned that with a normal range of 700-1600, mine were only returned to a rather disappointingly meager 225.

Before I knew that, though - So thrilled was I, in fact, I booked a few lovely trips to celebrate my 1-year immune system birthday (1 year from the date of my stem cell transplant 'zero' day, or the day my stem cells were re-introduced to my body to begin their work.

Since a 225 isn't anything to depend upon in fighting off either bacteria or viral infections, I realized my folly.

So what to do? Well, I'm about to go for my 2nd IVIg 'booster' of immune globulin from others to augment my own while it continues to populate and climb in the rankings 'til it gets to that magical "normal" range.  My new Dr, a hematologist/immunologist I really like, is helping me with the details of those booster infusions and hopefully my own IG levels will come up over time.

Meanwhile, I am going for IVIg at about 3-week intervals, or at least a day or two ahead of travel.  Little enough when considering all the treatments/Rx of the 3.5 years of active CIDP.  But it did feel like a set-back and I'm still a bit cautious. Can you say "germ-a-phobe"?  I fight the urge to stay in, not go into crowds. I am working on that.

Travel is the balm of my soul:

My husband and I just returned from the trip he gave me for Christmas: Miami for several days and a Western Caribbean cruise since we've neglected our experience of that part of the world. If I'd known I was immune-deficient still, I would have opted for another destination. What in the world good is the Caribbean barrier reef if you are not yet able to safely swim in it, dive, snorkel, enjoy that azure blue water?

And in fact, in spite of the IVIg boost, which consisted of 40gr delivered on a single day ahead of travel, I ended up coming home with the virus my husband caught on ship 3 days ahead of me catching it from him.  If I didn't love the man, I'd probably hate him. It was a mean virus. But I will say that I think he had a worse bout of it than I did so I'm thinking the new immune system is working well. I did run a fever around 102 for nearly a week (my normal temp is 96.8) and it really did flatten me. I don't normally just go to bed with a virus, but it made anything but that just impossible. But I didn't die, and now I have only a residual cough. You bounce back pretty well from that post-HSCT weakness that hits with illness.

But I can clearly add my 2 cents worth to everyone's experience of how an illness knocks you flat after HSCT.

There, got that disclosure out of the way.

Now let's talk about the good stuff:

My energy is nearly back after the virus, and that would put me back to pre-CIDP energy levels.

I am healing prior nerve damage, not getting more. I still have more leg/hand pain and numbness than I did when I left for Moscow last year at this time, so I attribute that to the injury of chemo. It is not a party, to be sure. But I feel certain it will rectify over time.

I'm a die-hard optimist, and not only am I certain my CIDP is gone and my new immune system is functioning and gaining ground, I can also say that it has been so so worth it. I have had a good year - even with roller-coaster ups and downs, far better than the 3.5 that preceded it. HSCT was the right decision, and I would advise it to anyone whose health can be restored to them - autoimmune illness sufferers whose disease is in the list of about 26 now being treated with HSCT.

I have grown hair!  YAY. Yes, I have had haircuts even, trying to even it out into something resembling a style. Not quite there but you can see I do have curly dark hair that might be slightly thicker than my sick/CIDP hair was before HSCT. The little bit of gray that frames my temples and face is there, still, but it's not worse than it was before chemo.  LOVE the curl! It gives me a little body I have never had in my hair. Who knew?  I might have had chemo sooner if I'd been aware of how much easier hair with body is.  Now this photo was taken after I'd been really sick for 7 days running, so cut me some slack, please. But you can see I do have hair now - see it comes in before you know it.

In fairness, below is how I looked in January, so it's coming in faster now, too:

Don't worry about the hair thing - it's temporary.  Today I gave away several wigs I'd bought and never did wear. I had one I liked and which got me through all the days that required me not to be bald, but the hair thing has been much easier to go through than I ever would have imagined. It's surprising how your priorities right themselves when it's your basic health at issue. 

A rolling stone gathers no moss:

Next week I have my darling littlest grandson (and his parents) coming for a Spring Break visit. THIS little guy feels like part of my healing challenge because I've wanted to be flying to see him in Denver and just have not had enough time with him. So many things in the way. Fire. Did see him when my Dad died/funeral, of course. And a visit there in the mix. He was ill, then I was ill. Time goes by.

So he's now a whole year old and I've only been around him about 10 days of that entire year.  That's a horrible loss to me, and one I intend to make up for. Look how cute he is by now - far cuter than my hair and he grew this cute in the same amount of time it took me to get HSCT and a bad hair-do.  (smile).

The day after he and his parents go back to Denver, I'm on a jet to Europe with a relaxed happy itinerary of 6 weeks. I think on the day my immune system turns 1 I will be in Berlin.  I've never been to Berlin, so that will be fun!  Looking forward to the trip, and mostly to knowing I can get back to this part of my old life. IG levels - hurry up!  Meanwhile, a little IVIg is just what the Dr. ordered.

I'm taking all my family on vacation this summer. We decided we'd enjoy NYC and Washington DC together this time. Twelve of us - I rented a big house in Washington DC so we can all enjoy each other to the fullest.

We are so fortunate to have one another, and our health.

Be well!  Have a wonderful Summer! 

63.  PEACE!  My Blood Levels Return to Normal!

              “Life did not stop, and one had to live.” 

                                                            ― Leo Tolstoy, War and Peace

Merry Christmas all!  

I want to tell you about the BEST ever Christmas present:  HSCT - allowing yet another person to leave CIDP and autoimmune illness behind - and to live!

Well, at 7 months post-HSCT, I can report that the doubt I had last month is gone. And with it almost all of the joint pain and a lot of the nerve pain. Also gone are all the meds for pain!  Yup! I'm still feeling nerve pain from old damage, but I'm able now to finally let go of even that one Tramadol at night. I haven't had one for 2 weeks. YAY!

Along with those "no more" statements I can tell you that I also have no more side effects from the meds associated with treatment for CIDP.

THAT IS HUGE!  

Let me say it again:  I no longer have the serious side effects of the treatments for CIDP.  No more elevated blood pressure (last Christmas eve it reached 215/195, sending me to emergency room, and that was post-IVIg side effect). I no longer have intense migraine following IVIg, because I no longer have to rely upon IVIg to slow my errant immune system from its aggressive relentless attack on my own nerve linings.

WOW, huh!

And I no longer am tied to an IV pole 3 days of 21, nor unable to plan anything in the 1-7 days following IVIg, in which time it was almost assured I would have a migraine.  I am free! I can walk better.

And get this one:

My energy is back to pre-CIDP normals. I have energy to spare. I no longer drag through my day, unable to function well beyond 5 pm, and I no longer require at least 12 hours of sleep just to get that level of slogginess for the other 12 hours.  This might be my very favorite result of HSCT - my returned energy levels.  I no longer feel like I'm fighting a bad flu or pneumonia every waking moment. I can make plans and take trips again without consulting my IVIg schedule, or worrying that if I stay more than 3 weeks, I'll either have a migraine at the onset of travel, or have further nerve demyelination toward the end of travel. THIS is huge!

I have my life back.  

What a gift it is I have received this year. And I extend my eternal gratitude that HSCT was made available for me in Moscow by my dear Dr. Fedorenko and his choir of angels - the staff there at Pirogov.

I have PEACE after my long battle - at last!  

My blood tests (CBC) have returned to normal. I now have only to allow some more time for old damage to heal. And that's just time.  Just take a look - just got word my liver is fine, organs are all fine - my bloods back in normal ranges:

Just my short posting today - the most important post to date for me.  I am 7 month post-HSCT, and I have beaten my dragon: CIDP. I am whole! 

Merry Christmas to all, and to all - a good, GOOD night!

62. Doubt. . . Yet My Energy Is Excellent.

Без труда́ не вы́тащишь и ры́бку из пруда́.

No pain, no gain.  Literal: Without effort, you can't even pull a fish out of the pond.

Well, here it is, 6 month point post-HSCT.

This past month has been one with some stress of doubt. 

I have had more foot and leg and hand pain this month. My joints hurt and my feet burn and ache like a toothache, all the way to my butt.  It's as if demyelination is still going on. I wonder. I worried. I thought perhaps I need a few IVIg treatments. ?.  I have to admit I felt some doubt. If my legs buzz, isn't that new demyelination?  I guess it's natural to worry some.

I contacted Dr. Fedorenko and his response is that I must just be patient. That this is quite normal for the stage I'm at in healing, and that my good energy and other positives show that HSCT has worked and that it takes at least one year to get to where I will be positive it's stopped my CIDP. And in fact, no one I know with CIDP who has gone through HSCT found it not successful for them. But they do all say that the first 6 months are very up and down.  So that is where I am.

Though I will say that this past week I am having less pain and my energy is, as noted, very very good. I am productive and am doing well with around 8-9 hours sleep at night (or even less). Before HSCT, I was unable to really function well on less than 10-12 hours a night.

The other variable tossed in is that I've tapered off the one Lyrica I was taking each night, and now only do one every other night. That's down from 2 Nortryptaline I used to take before HSCT, down from 5 Nortryptaline I was taking at the onset of my GBS/CIDP. I hate meds! I'll get off everything as quickly as my body will allow it.  So perhaps tapering off is letting more of the pain I had show through.  One Tramadol is really enough to calm the pain as it starts each evening. And in fact I have taken one only 4 nights this week.

I think maybe I'm on the upswing again.  But I wanted to note here that more pain and some doubt might be expected during the healing months post-HSCT.  I will take Dr. Fedorenko's advice and will just let my body continue to heal.  I know it can take up to 2 years for blood counts to get back to normal.

I just got my 6-mo blood tests back. Here's what the WBC results look like graphed with the past year or so. You can really see that they're all over the ballpark since my HSCT in early May. Flat green line is average high levels and dotted green lines are average low levels. I can't tell if I'm dead or not from looking at these. I'm depending upon my good energy levels to get me by. Will have Dr. Fedorenko take a look at these for sure.

And today's results graphed since 1/1/2013 for comparisons:

Близо́к локото́к, да не уку́сишь.

So near and yet so far.  Literal: Your elbow is close, yet you can't bite it.

On to the less important but vital changes: HAIR. I do have a head of hair now. It's not thicker or darker or curly as I was hoping. It's just my hair. It sticks straight up on top, so I'm using mousse to bend it (smile).  I sure do like the ease of it. Swoosh it with some gel and rub it backwards. How easy is that!  But this is how bad it looks at this point, about 1.25" long. The earlier growth seems to me to have fallen out. I guess they're right that your "real" hair begins coming back at about the 4-month period.

One more issue:

I was supposed to be in Paris right now, following time in Prague, Amsterdam, Brugge and Brussels.  But about 2 weeks before I was scheduled to leave I got some weird labs back that seemed to point to an infection. Seemed to me I had a UTI, but the culture didn't prove that out. Meanwhile one Dr. noted I had "Acute Renal Insufficiency" and I just didn't feel like I ought to leave the country if that was so. I think his evaluation over-reacted. I feel fine. I think it was just a blip on the post-HSCT healing process screen.  But it cost me my 6 week trip.  Just as well, I suppose. It was perhaps folly to consider doing that kind of trip at the 5-month point post-HSCT.  But that is evidence of how wonderfully well I felt early on.  And I continue to feel quite well other than the pain that rolls in evenings. And the numbness/weird sensory stuff that presents again now. 

So, I'm writing this from my Rocky Mountain house. I'm sitting here with this room view, with a bright sunny warm Indian Summer day outside. I've been here painting another bedroom; finishing touches here and there. I'm headed home tomorrow. The weather here in the Rockies has been beautiful other than a very cold snap right after I arrived. That cold snap kept me from sleeping one night due to pretty hefty foot, leg, hand and joint pain. So I'm happy to go back to my sunny warm California before the winter rolls in here. 

So, that's the 6-month report. Back to working on the house, and healing from HSCT.

Thanks for following. I wish you all HSCT and the cessation of your disease progression!

61. Two Steps Forward, One Step Back.  Five Months Today Since Engraftment (Birthday)

Близо́к локото́к, да не уку́сишь.

So near and yet so far.  Literal: Your elbow is close, yet you can't bite it.

In the "Two Steps Forward" arena: 


Okay, so here's what I'm apparently working toward:

And I figure if I can grow another 1.5" of hair (and find a really great stylist), thicken it up, lose 50 lbs and 20 years, and get some eyelashes and eyebrows and a lot of plastic surgery, I'm there!  

Sigh.  No, not even then, right?  



Meanwhile, THIS is how I look today, 5 months from the day my immune system engrafted:

At least I do have some hair coming in. Someone told me it would come in thicker, darker, and curly. They lied. However, I'm just happy to see something that isn't completely white like it might have been. My friend who had breast cancer (chemo) got all completely white at age 52, once her hair came back. Looks to me like mine is the same old stuff I had, including the gray there at temples and framing my face.  But enough about hair!

That was taken last weekend when I flew to Denver to play with my youngest grandson, Ben, and see his Mom and Dad.  What joy these little grandkids truly are!  Helps the healing to finally get to hold and snuggle him again, even though he had a tiny bit of a cold. Trusting my new immune system is not entirely natural or easy yet. I find I am a bit germaphobic, though I think that's natural and probably healthy at this juncture.  And frankly, that little boy is so cute, I'd probably hug on him even if he had something worse than a runny nose.  Well, okay, maybe not if he had chicken pox, though.




Let's talk health.

I've been doing remarkably well. I have traveled and been very active and had good energy since getting through with the California wildfire/Mysterious fever/ My Father's jeep wreck, hospital/ Losing my Dad.  Maybe the bit of fatigue I have going is carry-over from those things.  I was able to do all sorts of work at my other house, renovation and redecorating, and enjoyed feeling pretty normal through that time.

My CIDP is arrested.  No new nerve demyelination since HSCT.  None that I can tell, and I always got it if I went more than 3 weeks between IVIg treatment.  I went 7 weeks between last one and chemo, which is when the immune system is stopped, so I did get some demyelination in that time and it heals slowly.  I still have not had much healing of the additional nerve damage that went on the weeks prior to HSCT, so I have a bit more pain in my feet and hands to deal with and quite a bit of strange sensation stuff to ignore.  And I do ignore it.  I might rely on a pain pill (Tramadol) 3-4 nights a week if I'm having trouble quieting or ignoring the burning and pain at night.  A deep hot bath also helps.

I have no side effects from Rx. That's a huge plus!  I am back to my pre-CIDP blood pressure of 118/68 and feel like myself again. Not a single side effect migraine since I had HSCT!  That's huge! I also do not have any sweats and ickiness from Prednisone, and if my face is a bit "puffy", it's because I need to start power-walking and lose these extra lbs I've put on while CIDP made me innactive.

Aches and pains:  I find I went through a period starting at about 4 months post-HSCT where my joints were quite bothersome, aching and felt fragile somehow, like the ligaments might tear. I am certain that is a normal post-chemo issue and have read same from others so I am not worrying about it. I'm just looking forward to when it stops!  I do think it's improving by the 5-month mark.

My most recent blood tests look like this - Dr. Fedorenko and George Goss both said it's nothing to worry about, so I'm not. But aren't I supposed to have some Lymphocytes, etc. by this time?  Ummm. . .

I was interested in how these compare to earlier. Graphed below are the changes in each of my white blood cells. Remember that I had chemo in April, 2014, engrafted May 8, 2014 after HSCT.

And here is my BUN and other tests that show a bit off, too:

HOWEVER, I think they're trending back into the right direction (final 2 test results were from Friday, Oct. 3 and Monday, Oct. 6 and they're coming back to the mid-point a bit which is good:

But Kidney Stuff:  The "Two Steps Back" arena:


Right now I'm tired! 

I am on Bactrim right now for my 2nd UTI. Or perhaps for the same UTI but it didn't clear up last time with 10 day Bactrim Rx.  Some kidney involvement at this point. Last Friday's labs said I had reduced kidney function (only reduced by 10%). So last night an ultrasound and Monday's labs said it's a little improved over Friday. In a couple of days I will learn more, after they read the sonogram. I think I'm okay, and intend to be perfectly fine soon. But right now I'm feeling a bit under the weather. I feel like I'm sick. I feel like a nap every day. In light of the kidney issues, I decided it's a bad time to fly off to Europe for 6 weeks, and so Jack and I cancelled the front end 4 weeks of the trip. I didn't cancel my 2 weeks in Paris in November. I'm a die-hard and I love Paris time!  So if I'm fine by November, I'll be in the City of Lights, and maybe add something on after that.

Без отдыха и конь не скачет.

All work and no play makes Susan a dull girl.  Literal: Without rest even the horse doesn't gallop.

I do love Paris in November! I will think of it as incentive to repair my kidneys. 

And if I'm feeling really well and strong again, kidney report comes back good - I'm sure to add some other destination for 2 more weeks. The possibilities are fun to contemplate. Anticipation! (sing along).

Hmmmmmm. . . . maybe a couple weeks in Italy. I do love Florence! I'd love to drop by and meet Dr. Saccardi, the Dr. in Florence who is also doing HSCT and where I thought I might go.

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CIDP, MS, Lupus, and other autoimmune sufferers info:

Thanks for following. I hope this will reach and make a difference to anyone out there who is searching for true treatment/cure for their autoimmune illnesses, and serve as a guide that will shorten your journey to healing. I took 3.5 years to research HSCT and everything about it and CIDP and what might work. HSCT is the one thing (currently) that really does work.  I'm living proof. I have a wonderful new immune system. I'm just trying to also heal the little issues of chemo - much prefer this to IVIg and CIDP's relentless attack, hands down!



Autoimmune illnesses other than CIDP (which is too rare to even add, apparently) that are helped by HSCT (76-80% full remission rate - they won't use the word "cure" quite yet):

Here is Dr. Burt's list (Northwestern University Hospital, Chicago) which does include CIDP and he's performed many HSCT prodedures on CIDP patients (friends of mine) over the years, probably more than 50 now (CIDP is so rare!).  Far more with MS.

I think I was somewhere around the 48th to 55th CIDP patient EVER, world-wide, to have HSCT. I know I was the 1st CIDP patient treated with HSCT in Moscow. Historic, huh? 
We're all thriving, having regained our lives and health.

And if you're looking at "stem cell", be sure it's got chemo in the mix and is from a sanctioned clinic. If your procedure does not include all these steps, it will not work:

And here is a list of insurers in addition to Medicare who are now covering this treatment for autoimmune illnesses in the USA (list is growing every month, too):

Oh, and I found this interesting:  Blue Cross & Blue Shield of Minnesota even assigned charge codes for HSCT for autoimmune a full year ago. THIS is the future for autoimmune sufferers.

They say 5-8% of Americans have autoimmune illness. My RX costs for CIDP treatment ran $244,000 per year. I am just one person.

Consider that the USA had 316.1 million people in 2013. The costs of maintaining us all is staggering!  So HSCT, since it works, is now gaining approval of more and more insurers. You can see why: (click this line of text to read the full article)