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. 

1 comment:

  1. Hi Susan
    So nice to read your update on how you are doing. So happy to hear you are doing so well!! In spite of all the bumps in the road I know you have had these three months. You are strong and that is good!!

    I wondered about one thing. I am now one and a half week post my discharge from Pirogov. I got antivirals from Dr. Fedorenko for four weeks, but as I understood what he said, that was what he recomended. Four weeks and nothing more.
    Did he recommend different in your case as I see that you are still taking antivirals at three months? Or is this something you were recommended by your hematologist or doctor at home?