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.
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.
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.
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.