Stem Cell Transplant – on my way
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February 12, 2011 at 9:12 pm
I have been accepted into the SCT program at Northwestern Memorial in Chicago and am just starting to do some fundraising to help me with care before as outpatient and home care after release along with the few medical bills that will surely roll in that insurance will not cover.
I have links that can be followed attached to my site. I will be #18 and part of this study for 5 years. Any financial help is deeply appreciated or you can just follow along. Thanks to all who I have spoke with who have offered there experience’s and given me much hope. Robert
http://www.gofundme.com/stem-cell-transplant-pre-and-post-care
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February 12, 2011 at 9:33 pm
[FONT=”Microsoft Sans Serif”]i had to click on your photo to know for certain that it was you 🙂
i’ve already told you but once again, congratulations friend! i am so happy for you!
alice[/FONT]
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February 12, 2011 at 10:52 pm
Far braver than I am to boot! Will see what can be done?
Go forth and fight the fight fiercely! And,…stop banging your head against the walls?
Truly, wishing best and beyond! -
February 13, 2011 at 1:49 am
I’m not so brave, I’m often in tears. I am more afraid to not be living fully verses to die frankly. Thank you for your kind words and I will prevail for myself and others. Rock on…………….life is short
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February 13, 2011 at 9:28 am
Robert – so happy you are in the program. I look forward to hearing great things about your progress (and hope to see you in Chicago).
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February 13, 2011 at 4:19 pm
Yes Linda you will be there soon : )
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February 13, 2011 at 9:50 pm
Congratulations Robert! I hope to be following behind you shortly!
Take care.
Jennifer
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February 13, 2011 at 11:49 pm
Jennifer, feel free to link up via FB or the blog and keep me posted if you are going out as we may cross paths as I have with 3 others.
Robert
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February 14, 2011 at 6:56 pm
I was SCT #14….had my transplant on September 16. Life is so much better now that I am off those awful meds and have some energy once again. Like you, I couldn’t bear the thought of not living as fully as possible.
Do you have a report date? I will be returning to Chicago March 8 for my six month check up.
Sharon
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February 14, 2011 at 6:59 pm
Sweet! I may be there about the same time but still waiting on a date. Please
email me as I would love to talk to you.[email]rdpfun@earthlink.net[/email]
Robert
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February 14, 2011 at 8:51 pm
Cornblath has had me in a Holding Pattern saying the “mycophenolate is working, the patient cn walk and continues a Routine at the Y”
The pain is NUTS, I don’t sleep and grow weaker and weaker? Granted, I AM able to walk, yet. AND get myself to Baltimore, But I’m not doing better.
Would appreciate your input. BTW- Hopkins a a great Hospital, and the good doctor, VERY informed on CIDP- which can be a negative, if you are trying to tell HIM, lol.
Peace, God Speed,
Eric -
February 14, 2011 at 11:03 pm
Eric,
All I can say is it’s the **** and how much can you take? I crossed my line
and will roll the dice but it is not without talking to 5 to 7 others who have gone before me. Nobody has died in the CIDP program and I hope to not be the first but if I do what can I say? I’m not here anymore. It’s killing all of me now as it stands.I have had over 100 plasma exchange treatments and what the CIDP don’t take the treatment does for what’s left as my legs turn to jello but I get to use my arms a little. Screw it, that’s the best I got so the SCT seems like it can’t be any worse as there is potential for daylight.
Robert:D
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February 15, 2011 at 11:14 am
100 PLASMA XCH!
AND, FOR ME, TYEY WON’T DO 1?
4 YERS AGO I HAD A TETINUS BOOSTER (DR HAS NO RECORD OF IT)ANYWAY, a eweek later my hands wentnumb, they suspected Folate Deficiency, 3 months later I was falling, often.
Short story/long, too long on Prendisone, 2 years on CellCept, I’m gettiing weaker and weaker- while my Dr (Cornblath-Hopkins, internationally known for treatment of CIDP) says he’s happy w my progress- meanwhile I’m on disability, hemorraging money and not able to do chores around my place?
ANYWAY, I gues the MY question is how do you get “them” to try something different???(- it takes 4 perscriptions to get me to sleep (nerve pain/”buzzing”) Ehat I’m “getting” , in so msny words- is I am still walking, can still grip @ 100 psi- So should I be hsappy?
Anybody else have trouble swallowing- like food is dstuck half down my esophogus?
Anyway, PLEASE keer us posted on the Stem-Cell thing- I’ve read some encouraging things from a Dr Peter Calabresi on MS. . .,
God Be With You
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February 15, 2011 at 11:18 pm
Not an expert here, everybody has something different. It sounds like quality of life verses no life (this is where I fall) so I go for it and see. do follow.
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February 16, 2011 at 12:46 am
Hi Robert, I don’t know you as well as these others seems to, but I too have CIDP & CLL. I’ve had the CIDP since 2002. I wish you all the best !!! I pray that this will work beautifully for you, just looking @ your photo, it’s easy to see that you love life, & have alot of life left to live. So Live it with much less pain…… God Bless !!
Janice B -
February 16, 2011 at 12:57 am
Thanks Janice, perhaps this will be the fix for the worst of us. Time will tell and yes I’m ready for life to grow again.
Kindly,
Robert -
February 16, 2011 at 10:37 am
Robert,
I wanted to offer my support, prayers, thoughts to you as well as everyone else as they go through this procedure. You all are truly pioneers in this fight against CIDP. 🙂
Take care,
Tina
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February 16, 2011 at 11:01 am
Thank you dear Tina : )
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February 16, 2011 at 10:19 pm
Congratulations Robert!
Im so happy for you!! Life will get much better!Take care!
Rossana
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