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Old 08-03-2011, 08:47 PM   #301
charlene
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Default Re: Keep me in mind

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Originally Posted by jj View Post
All the very best and glad to hear there may be a bright light in the offing. I hope a brother matches or perhaps an unrelated match.

I only joined the registry in recent years and hope others do so "someday". Someday is Today
http://www.onematch.ca/

Give blood. Fill out your organ donor card.
You'll sleep well and bounce out of bed each day.
Well I'm still working on the latter. Lol

And most importantly, goodluck with the wifi!!! Take care.
I like the CanadianBlood Donor saying "blood-it's in you to give" fabulous! same goes for marrow and .... organs you no longer need or can spare bits of...lol ...sign up if you think so. the life you save may be your own..

wi-fi - that's a whole nuther matter....
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Old 08-04-2011, 12:57 PM   #302
formerlylavender
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Default Re: Keep me in mind

Quote:
Originally Posted by jj View Post
All the very best and glad to hear there may be a bright light in the offing. I hope a brother matches or perhaps an unrelated match.

I only joined the registry in recent years and hope others do so "someday". Someday is Today
http://www.onematch.ca/

Give blood. Fill out your organ donor card.
You'll sleep well and bounce out of bed each day.
Well I'm still working on the latter. Lol

And most importantly, goodluck with the wifi!!! Take care.

I joined the registry in 1993 - a year after I lost my beloved aunt/godmother to leukemia. You had to give a blood sample back then. I've never been called though. Been a blood donor since I was about 20 and, timely enough, just added organ donor to my newly issued federal ID! It's such a good feeling after you donate blood just knowing that someone somewhere is getting stronger because of you.

Good luck with everything, fezo.
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Old 08-24-2011, 10:01 PM   #303
fezo
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We continue to move forward. Three of my brothers match each other but not me. We're still waiting on results of the one other. If that doesn't work it's off to the donor bank.

The doc officially gave me the OK to declare myself disabled and put in for Social Security. I'll be retiring before the end of the year - maybe before Halloween. Came closer to 63 than I might have thought.
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Old 09-16-2011, 04:08 PM   #304
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The other brother didn't match either. We're in teh big donor pool now.

To make it bigger go to bethematch.org and get your self tested. The life you save could be mine!
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Old 10-01-2011, 06:14 PM   #305
Patti
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Hey there, I did join be the match a couple of years ago, and I got a letter in June, of this year saying to contact them right away, because it looked like I was a match for someone. They asked me some medical questions, and said if I didnít hear back from them within 3 weeks, to just assume that they found another donor. I do have some type of arthritis in my knees, but I am pretty sure it is just from childhood injuries. I wish they would have checked my blood because I think it is pretty healthy. I checked out their website concerning the medical qualifications, and I think I pass. I donít know who the person is that I could be the match for. I hope he or she is alright. I do want to donate if I can.
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Old 10-05-2011, 10:01 PM   #306
fezo
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There could be all sorts of reasons they didn't follow up with you. Could be a better match for that person or even just a closer one. You are still in their data bank. If you get a message that you match a 60 year old guy in NJ be ready.....

I'm officially retired with this as of Monday. Going to be a rough patch but once I can get Social Security I'll be OK. I do get a pension.
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Old 11-28-2011, 10:20 PM   #307
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Well, the word is they have three perfect matches for me. They'll figure out which is the best. They'll be putting me through a bunch of tests and we are looking at just after Christmas for the transplant. All prayers, positive thoughts and general good vibes are most welcome.
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Old 11-29-2011, 01:05 PM   #308
charlene
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terrific news! keep us posted when you can and best wishes for a successful transplant.
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Old 02-22-2012, 12:02 AM   #309
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OK, what happened to the February posts?

In case someone who wants to know missed it here was the basic post.....

Well, we have a date. March 19. They put me in the hospital and cut me up the first day. Oddly, no cutting for the transplant or anything. This is to put in a catheter they need. I assume it will be like when they put in my port - they knock you out and you wake up with the thing in there. Then they start chemo to knock out the old marrow right away. There goes my hair. If they want it for wig material they can have it. Otherwise I'll give the younger girls my ponytail and let the barber in there shave my head to avoid waiting that out.

Turns out I am a clinical trial of 52 patients. Not the first time I've been a guinea pig. They give me paperwork with this that lists about 8 ways this could kill me but that is stuff they have to say. That part ain't happening, folks.

My donor is identified only as a 57 year old American male. If he can't do it for some reason the backup is a guy from outside the US about the same age. The backup to the backup is a woman that I know nothing about because one of those first two will work. The way they treat this is how I'd want it. The donor and I can't know each other for a year. After that if we both want it then we can. Their reasoning, which I already had decided on independently for the same reason, is that after a year I'm out of the woods. Wouldn't want to go meet the guy and then have it go terribly wrong.

I'll change blood types! I'm AB+ but the donor (either guy) is O+. As the new marrow starts producing it will be O+. It will also have his DNA even though everything else will have my regular old DNA. Amazing.
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Old 02-22-2012, 02:51 AM   #310
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Hi Fezo,
I don't know what happened to those posts either. You, me, Char, DSR, all our recent posts on this thread just deleted for why? Also,suddenly some of my other posts and some of my recent PMs were deleted. I sent Char a couple of PMs about it, and she didn't do it, and she said that if it was the owner of corfid, that he would have let her or me know.
Don't know what happened. Maybe some hacker nutcase. Seems a little personal perhaps. Strange, anyway.
I changed my password and email, though I never told anyone my password.
I said some good special prayers for you last night. More on the way.
Patti
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Old 02-22-2012, 08:26 AM   #311
charlene
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I can't explain what the heck happened to them but I've contacted Florian about it..
hopefully it won't happen anymore..
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Old 02-23-2012, 10:49 PM   #312
fezo
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FYI - I officially have started a caring bridge site - http://www.caringbridge.org/visit/stevelasala

I had no idea about these folks until one was set up for Jesse Winchester during his cancer ordeal. Glad to see he's back up and running.
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Old 03-13-2012, 08:17 PM   #313
fezo
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Well, this is it, folks. I go in Sunday and start chemo with the actual transplant happening on the 28th. Here goes....
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Old 03-19-2012, 11:24 AM   #314
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Now reporting from the inside. I arrived at Sloan Kettering yesterday. Am set up comfortably as you can when in a room you cannot leave. Two guitars, a mandolin, iPods, computers, etc. I've got three lines feeding six bags going into me but am comfy and listening to stuff I haven't in years for starters. The Kingston Trio at the Hungry i. More than any single piece of vinyl that is the reason I play.
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Old 03-19-2012, 12:20 PM   #315
charlene
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thre you are! my goodness it sounds like you're all trussed up like a turkey at christmas..lol
nice that you can have your music/guitars and mandolin etc. would it have been easier for the docs/techs to just come to your place?
lol
keep us posted..healing hugs from toronto,
char
i have a friend in TOronto having his first chemo today for colon cancer...
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Old 03-24-2012, 10:27 AM   #316
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Default Re: Keep me in mind

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Originally Posted by fezo View Post
Now reporting from the inside. I arrived at Sloan Kettering yesterday. Am set up comfortably as you can when in a room you cannot leave. Two guitars, a mandolin, iPods, computers, etc. I've got three lines feeding six bags going into me but am comfy and listening to stuff I haven't in years for starters. The Kingston Trio at the Hungry i. More than any single piece of vinyl that is the reason I play.
You are in great hands Fez! Sloan really knows after Transplant care so well!...They really know how best to control graft versus host reactions to get them most benefits with the last harm. God bless you and will keep you in my prayers - Bill
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Old 03-25-2012, 11:27 AM   #317
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Fezo, when it comes to endurance and stamina you are an example to us all.

Over the last two days I've gone back read every post on this amazing thread and what you are going through is beyond belief.

The support network you have here on this site has long tentacles and clearly is yet another means of proof just just how powerful music really is, and in this case the music of Gordon Lightfoot in particular.

Whether it be faith in a higher power or any other means to help get you through this please know that it be our wish to see you up and about and hitting on all cylinders once again asap.

RJ.

PS: I'm looking forward to the addition of your recordings to my collection.
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Old 03-28-2012, 09:52 AM   #318
fezo
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Thanks! I'm looking forward to creating new music once through this. I've still got loads of copies of the old CD for anyone that doesn't have it but it's getting time to be serious again after this.

Well, today is the day! They are separating out the cells as we speak and they'll go in me about four this afternoon and I'll be recovering for a year or so.

I've been updating the caringbridge site as I can.

I'll post this once and don't feel obligated as I treasure all the support I have here but if anyone wants to help out financially my family and friends have set up a fundraiser and the site has a donate button. My insurance is god but there's loads of other expenses. Anyway, the site is http://friendsofstevelasala.org/ Thanks for looking.

Man, I miss my kids! I still ahve the two ten year olds - not that I don't miss the older girls but..... Thanks goodness for Skype. I had never used it until a week ago.
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Old 03-28-2012, 07:14 PM   #319
fezo
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Cells are in! Ready to roll. Now we just have to build me a new system!
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Old 04-01-2012, 06:52 PM   #320
fezo
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Lost the hair today.

I'm at the bottom now but today may have been just a little bit better than yesterday. That's how it begins.

Someone had asked for teh direct donate like. Here it is https://www.paypal.com/us/cgi-bin/we...7139403713ca13

Many thanks for all the support.
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Old 04-01-2012, 08:16 PM   #321
charlene
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It's just hair..when it comes back in there's liable to be a surprise! I know someone whose straight light brown hair came in with the most wonderful waves and curls and a deep brunette colour..he was 12 and is now 44 with 4 boys and a fulltime job as an anaesthesiologist. 32 years ago he told his docs at sick kids in toronto that he'd be a doctor when he grew up..and it's just what he did! of course with 4 boys there's a lot of gray in his hair now...lol
We're all thinking about you and sending healing thoughts and prayers your way...stay strong and positive..
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Old 04-02-2012, 01:02 AM   #322
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Default Re: Keep me in mind

Quote:
Originally Posted by fezo View Post
Lost the hair today.

I'm at the bottom now but today may have been just a little bit better than yesterday. That's how it begins.

Someone had asked for teh direct donate like. Here it is https://www.paypal.com/us/cgi-bin/we...7139403713ca13

Many thanks for all the support.
Hi Fez,
You are in a great hospital but you are right. Learn all you can about the side effects of bone marrow transplant and be very focused on both liver and Lungs. Make sure your doctors very shortly after the transplant give you regular lung pulmonary function tests (PFT). If you do have issues you want to get it early and get treated. That said, always keep in mind that bone marrow transplants can and does cure blood diseases. Keep the faith my friend. Please join this group if you have not yet. It is light in the darkeness and there are many people that can help you. - Bill

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List-owner: gvhd-request@listserv.acor.org
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Old 04-29-2012, 07:26 PM   #323
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Well, I am now a month post-transplant and getting better every day. That couple of weeks after they do the chemo are hideous but it improves greatly after that.

What I had was a bone marrow stem cell with t cell depletion transplant. They gave me 7 million stem cells from the donor but nne of his t cells. The downside of this is it up to a year or even longer to build up a full set of t cells which run the immune system. The upside is it eliminates graft vs. host issues. I'm a clinical trial so this is new even for Sloan. I'm always that way medically....
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Old 05-04-2012, 01:51 PM   #324
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Thanks for the new update, Fezo. Glad you're feeling better!

I wonder if your donor is a Lightfoot fan.
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Old 05-27-2012, 06:29 PM   #325
fezo
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Now that's a good question! In a year maybe I can ask him.

Well, I'm a day short of two months post-transplant but here we go.....

I'm doing great! I feel fabulous and look pretty good considering my hair isn't back yet.... The doctor has to keep reminding me that I'm not as well as I feel. I have to build a whole new immune system - as well as a new GI system. The chemo just takes everything out of you but it slowly comes back. The immune system will take a year to get back to normal which results in wacky diet and having to be nuts about avoiding infection but I feel good, I'm playing up a storm (having little else to do) and my inflammatory issues and fibromyalgia are gone because those were autoimmune issues and I don't have that immune system anymore!

Things are looking up!
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