Monday, July 27, 2015

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!  





Thursday, March 12, 2015

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! 

Wednesday, December 3, 2014

63.  PEACE!  My Blood Levels Return to Normal!

              “Life did not stop, and one had to live.” 
                                                            ― Leo TolstoyWar 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!








Sunday, November 9, 2014

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!

Wednesday, October 8, 2014

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.

_________________________________________________________________________________

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)





Saturday, September 20, 2014

60. An Otherwise Bad Hair Day - 4.5 Months Post-HSCT and Healthy!

Бу́дет и на на́шей у́лице пра́здник.

There will be our turn to triumph.


 Literal: There'll be a holiday in our street too
.


I'm going to be uncharacteristically brief. I meant to do this celebratory update at the 4-month point, but I was busy traveling and enjoying a vacation with my husband. Awesome, huh!  ; )


Let's get this part out of the way right up front:

I have one predictable but negative issue to mention:  joint aches and pain.  I have read enough blogs and stories & posts from other post-HSCT patients who also mention a bit of an uptick in this pain in the months after their HSCT and know that it is a predictable post-chemo condition that hits after the effects of the post-HSCT steroids have worn off (that period some call their steroid honeymoon). I'm not worried by it, but I am finding it a bit bothersome and, well - pain hurts.  Worst in my joints of fingers and in my hips, I think, but it shows up here and there.  Okay, that is my one complaint to lodge - and I know it will self-resolve in the upcoming months.

Now, progress:



I know Caravaggio's Medusa (which hangs in the Ufizzi in Florence, and which "no flash" quick photo of which was clicked by me, shown here) might be the ultimate image of a truly bad hair day, and yet what for me might otherwise represent my very worst hair days ever (below) are shown with pride.

At just 4.5 months post-HSCT, I actually have some. And it's almost all dark!  YAY!  Go, hair!


No, wait - let's get right in there and see what I've got going - all sticking up on top, swirling like a newborn in back and growing up at the hairline, at least it is actual hair and it's mine - all mine.  WOOHOO!  I'm no longer a baldie.


Okay, so I can't take a selfie to save me. But you get the idea.  I'll be trotting off to my hairdresser soon to get started on the 'growing it out' series of haircuts, measured off in millimeters. Meanwhile, sans Caravaggio, Medusa me!



But now for the good stuff:
  • I feel great!  AMAZING, huh, for someone who went through chemo and bone marrow transplant only recently.
  • NO NEW NERVE DEMYELINATION. No side comment necessary 
  • I no longer have CIDP!  Wow, huh! THIS PART IS ALMOST A MIRACLE except we all know HSCT is the only way to get rid of it.  
  • I have tons of energy - none of that sluggish exhaustion stuff CIDP is known for THIS PART IS TOTALLY AWESOME!!!
  • I have no side effects from Rx because I'm not taking anything other than 0-1 Tramadol for old nerve damage pain. THIS PART IS HUGE!
And that's not all. Look!  @) @

I've been doing light renovating and heavy redecorating to my old stone house, spent a month away from home to do so - didn't get sick at all and had energy to spare. I'm doing SO well it's thrilling!  And the 170-year old 2-story limestone house with 20" thick walls is coming along, too. We're both built to last and we're tough! 

I want you to know I painted those ceilings and walls - me, the one who USED to have CIDP!  Planned and purchased all the furnishings, put them all in place (with some initial help from my strong son).  I would never have had the energy to even consider doing this pre-HSCT.  Those of you who have a chronic autoimmune illness can fully understand how monumental this is. AND I worked my business while away, too.  Wow, huh!  Normal sleeping hours, no meds or side-effects. Doing things I always loved to do before CIDP side-railed me.







So, I just wanted to stop in and tell you who are still thinking over whether you can go through chemo or who are a bit afraid of all that, or who are still bemoaning the loss of your former healthy life and listening to your Neuros. . . HSCT not only works, it's not horrible to get through. Your hair grows back. Your energy and healthy life count for far more.  

For those who have just found this blog, written by this happy post-HSCT and ex-CIDP person, you will want to drop back and read my journey to wellness. I think the most valuable post is #50, meant to help you understand how HSCT works and why you aren't going to get better until you finally get it done.  

Okay. That's all folks. I'm back to living my life fully again.  I'll be spending 5-6 weeks in Europe a bit later in Autumn.  Yes, I have my life back again. And my hair? Well, it's coming in nicely, thanks.






Friday, August 8, 2014

59. Three Months Today - My Immune System Works!


Арте́льный горшо́к гу́ще кипи́т.

With a helper a thousand things are possible.
 Literal: An artel's pot boils denser.



Thinking of my Moscow time (6 weeks) and of all my friends who are there or just returned, or are soon scheduled to begin their own HSCT (Hematopoietic Stem Cell Transplant) there at Pirogov, or at any of the other clinics doing this amazing life-transforming procedure.  I know some have gone to Dr. Saccardi in Florence, others to Dr. Burt in Chicago. And some are even this moment in process in Moscow with Dr. Fedorenko, where I went for mine.

In spite of Putin's politics, Russia remains a fine country in which to seek your "cure", or to have a 75-80% shot at full remission from autoimmune diseases. Plus it's just a beautiful city - Moscow



Dr. Fedorenko is booked solid for a couple of years, however, so here are some options if you're searching for HSCT:

Dr. Richard Burt, Northwestern University, Chicago, USA

Dr. Riccardo Saccardi, Careggi University Hospital, Florence, Italy (an article about him)

And one of the smartest most supportive and informed people you'd ever want to meet if you've got an autoimmune disease is George Goss, whose blog and site on Facebook are the greatest resource as you begin to learn about this procedure. Here is George's blog:

George Goss, Blog (he had HSCT for MS in 2011 in Germany)

Also look into Dr. (prof) Slavin, Tel Aviv, Israel.

Well, today is the 3 month marker. My new immune system tipped to engraftment 3 months ago today, on May 8th. And I am feeling well, am active and have no problem with any demyelination going on. The fatigue of the CIDP (autoimmune) is gone. Now I only get tired if I'm working too much, which I tend to do.

I have not so much to report that has changed since last post except I am doing well and beginning to grow some hair again. I keep hearing it will fill in well starting at about the 4-5 month point post chemo, so I'm hoping still to get some thick dark curly stuff instead of my normal hair. But so far so good. I did shave it a couple of times early on when it was just kind of white fluffy down-like baby hair. Now the darker hair is beginning to come in.  And yes, I'm tired. You can sure see it in my eyes this week. Feel like I have a little bug of some sort, though no fever so not worrying much. Just a bit under par.  So here's my slightly blurry iPadAir selfie taken just today:



Not that I like having this image posted forever on the internet, but I know you all wonder how this comes into place after your own HSCT.


As you can see, I also am getting eyelashes again after losing them completely about at the 2 month point, just in time for my Dad's funeral, actually, so maybe they fell out over the stress.

Eyebrows, too. Coming in about like before. In all fairness I should tell you I am using Latisse to help grow my lashes and brows. It works!  

For women: I have been told by a few post-breast cancer chemo patients that they all went and had their eyebrows tattooed before they had chemo so when their brows fell out they didn't need to draw them on every day. I've been surprised by how natural they look, and thought I'd pass that along. Some also have eyeliner tattoo, both of which might be a good idea if you do it far enough in advance AND know the tattoo artist's tools are sterile. 

I neglected to post a photo of fingernails last time when I mentioned them, so will post those here. The white line and weird whiteness is nearly grown out now to fill my entire nails. Also ripples remain. Here're a couple images:




Hard to photograph those and show the rippling. But it's definitely there. Pardon me for not having a manicure, too. I'm still too nervous about the possibility of infection and nail salons are one of the worst places, I'm told. So clippers and no polish - that's me.  Healthy, too!  

Meds: I am still taking an antiviral (2 daily) and will continue those until the 6-month point. I am not on antibiotic, though I have taken Bactrim for 10 days for a UTI recently.  Might go back on it because I'm just feeling slightly sub-par.  I take only Tramadol for pain from old nerve damage. NO side effects, and that is an amazing feat and feeling. I'm back to being me, pretty much.

Diet: I'm still being quite careful, though I did order a salad last week when we were out. One of our regular restaurants, they washed the lettuce a second time just for me. It's amazing how much I've grown to love boiled pears or apples sliced on nice heavy grain organic bread, a holdover from my days in Pirogov.  I still don't eat much red meat at all, and no fish yet. But I'm about to expand my rather bland diet soon. 

Work:  I've worked throughout the entire CIDP period of my life, though I know that if I'd worked for someone other than myself, I'd have lost my job that first year with CIDP. Grateful more than ever that I have my own business. It's dropped some over the period I was ill, but we're about to gear it all back up now that my energy is back. Didn't lay off anyone during my 3.5 years with CIDP, and I'm very proud of that. But it was very hard! Now it's fun again.  

Travel: I've just been fleshing out my arrangements for 5 weeks in Europe in Oct/Nov. Jack is joining me for the first part (Prague and Amsterdam) and then I think I will get to enjoy Linda Martin a bit while in Bruges and Brussels. And then it's on to Paris so I can get some real work done.  Gosh, I'm back to really loving what I do!  This is me - come and see what I do:


Projects:  (I add this because with CIDP it was impossible to get projects done - no energy to get through a day, let alone do big projects)   I'm renovating the old limestone house. That's a big project and I would never have had the energy to do it before HSCT. It's remarkable how energy returns almost the moment the chemo stops the old immune system. I love having lots of energy again - feeling like myself.  I'm not Superwoman yet, but I'm nearly there and gaining. I'm doing well!

_________________________________________________________________________________

Another few weeks and I'll have more blood tests and have an appointment with my Neuro. I have just heard that 2 people were successful in getting Kaiser-Permanente to pay for HSCT in Chicago with Dr. Burt, so I'm thrilled to hear that and will pass it along to my Neuro who was not the least supportive. One wonders how the Neuro must feel about not sending his patients for HSCT when it obviously is the only true chance any of us have to stop the autoimmune attack.  I'm so glad I'm 3 months out and healing. 

Oh, I stopped in at my old IVIg clinic.  The nurses were so happy to see me and to hear that HSCT worked for me. I was happy to see them and NOT to sit in a chair for many hours, many days, only to get a few good days from it. And not a single migraine since HSCT, either. Wow, huh!

So, that's the 3-month report. Nothing exciting (thank God!). It's been a kind of rough 3 months. I'm so glad I was healthy enough to get through it all. And still so glad my Dad knew I'd had HSCT and was doing really well. All these years he worried a lot over my CIDP. I only wish he was still around and could see that I'm better and better each week. Sigh.

Thanks again to the man (and his team) that saved my life and gave me back my health.  How do you even thank someone who has done that?  You pass it on. . . .


That's my "lifeguard" who saved me - Dr. Denis Fedorenko. And he's saving my friends right now. 

Do your research. Forget your stupid Neuro's objections. Listen to those of us who have gone through HSCT. Get to work arranging your own. Be proactive!  It is your health and your life.