I was thinking about donating blood because mine is O- and kind of rare. Are we able to do that being on Gleevec?
Posted 22 June 2011 - 04:25 PM
Unfortunately we cannot donate blood or organs due to the risk to the recipient. I was sad when I realized that I could not do so anymore.
Posted 22 June 2011 - 04:37 PM
Well that stinks. I was too was wanting to donate my organs guess that's out of the picture. Thank you for the info BethG.
Posted 22 June 2011 - 04:59 PM
I believe the one thing you can still donate after death is your corneas as these are just about the only transplantable organ that doesn't have any blood in.
Posted 22 June 2011 - 05:24 PM
I had an uncomfortable conversation the other day with a co-worker. They were having a blood drive at my job, which I had participated in before I was diagnosed. She had just given blood and was telling me how I should donate. She doesn't know about my situation. Another co-worker was there, who is one of the few people at work who do know. The first one kept at it about how I should go down and donate. I said I didn't think I would. She proceeded to tell me how important it is an how people can die without blood transfusions sometimes. I had to do everything I could to bite my tongue and not respond. It wasn't her fault she doesn't know, but still when I said I wasn't going to, by the second or third time she should have left it alone. How much I wanted to jump up and say "I know how important blood transfusions are, you see I have leukemia and my treatment can cause my counts to dip so low that I might need one to save my life. I also have a lot of friends in that situation who I would like to help if I could. So yeah I would donate, except I am prohibited from doing so". But what good would that have done
Posted 22 June 2011 - 08:44 PM
While your organs and blood cannot be donated for transfer purposes, you can still donate them to scientifc research. You can put that in your Will and should discuss it with whomever is going to be making end of life decisions for you in the event that you are incapacitated.
Caroline (the estate planning attorney)
Posted 23 June 2011 - 06:11 AM
Now that is an interesting concept. I will have to consider this. Ultimately my best case scenario would be that they get donated about 50 years from now and when they use them to teach people, they will be under specific group called "individuals cured of CML"!
Posted 23 June 2011 - 01:45 PM
Hi: Can I ask why you did not jump up and say what you wanted to say. It would teach people to keep their thoughts to themselves, because you never know what the person that your speaking to could be going through. When I was diagnosed, I did not feel like I had to keep quiet about what I had.
Family and close friends knew, and if it ever came up in conversation I did not care if anyone else knew. Thats just me. You must have your reasons for not telling your co-workers.
Posted 23 June 2011 - 01:51 PM
I prefer for people to not know, I don't want people second guessing me at work and questioning my ability to get the job done. More importantly, I don't want it out in the industry that I have this condition. In the event I ever want to switch jobs, I'm fairly well known in my industry and I don't anticipate getting many interviews as the guy who's really good, but has leukemia. We CML'rs come with a pretty high price tag, so I would like to keep that as under wraps as I can.
Believe me I wanted to say something, but sometimes I have to hold my tongue to do what I think is best for the long run. Should I make it to retirement, I'll have a speech prepared
Posted 23 June 2011 - 02:00 PM
OH! I see what your talking about with relation to your working etc. What you said makes so much sense. I guess with me it was different. I was secretary to the doctor who found my CML. The whole office knew what was going on. We had our blood checked every 6 months if we wanted to, and it was a professional courtesy where we did not have to pay anything. We had our own lab right their at the doctors office. It was a good thing for me, because they found it early. I do not think I would have been getting check-ups as often as I did if I was not working right there. I often think how long would it have been before my CML was found. I had no symptoms, and just a routine blood test. Felt a little fatigued, but blamed it on working for 8 Specialists who were very demanding. Everyone has to handle things the way they feel is right for them.
Posted 23 June 2011 - 02:05 PM
There are so many wonderful excuses you can make up to give someone like the wanker doogooder.
1. I just gave blood two days ago.
2. I would love to, but I am on a round of antibiotics for an ear infection and that makes me ineligible to give blood.
3. I would love to, but my last trip to Costa Rica to feed the orphans and dig latrines for the indigent, has left me exposed to malaria, and makes me ineligible to give blood.
4. I would love to, but being bullied by you has changed my mind.
I could go on, and come up with more. but I think numbers 1 and 2 would do the trick...
and according to the red cross:
Other reason someone can't give blood:
1 You've already given blood in the last 12 weeks (normally, you must wait 16 weeks).
2 You have a chesty cough, sore throat or active cold sore.
3 You're currently taking antibiotics or you have just finished a course within the last seven days. (see and I made that one up but it was correct!)
4 You've had hepatitis or jaundice in the last 12 months, or someone you live with has had it in the last 12 months. (like the orphan child from Bolivia that you are helping out)
5 You've had ear or body piercing or tattoos in the last 12 months especially in a state where tatoo facilities are not regulated. (i really like this one, I just had a tattoo on my ass, bummer!)
6 You've traveled outside the country within a year or so to places where certain diseases are of greater risk, such as much of Africa, Iraq, and other places. (my reason number 3)
7 A member of your family (parent, brother, sister or child) has suffered with CJD (Creutzfeld-Jakob Disease). (This one is good! It makes the wanker feel bad, see you poor thing have a family member with a disease)
8 You've ever received human pituitary extract (which was used in some growth hormone or fertility treatments before 1985). (unless you are on the short side, I don't see this one working)
9 You may not donate if you received a blood transfusion since 1980 in the United Kingdom (England, Wales, Scotland, Northern Ireland, Channel Islands, Isle of Man, Gibraltar or Falkland Islands). This requirement is related to concerns about variant CJD, or 'mad cow' disease. (Excellent excuse, you bumped your head on vacation and got a transfusion.............)
10 If you ever had leukemia or lymphoma, including Hodgkin's Disease and other cancers of the blood, you are not eligible to donate. (Well, that one hits a little too close to home huh?)
11 Donors with diabetes who, since 1980, ever used bovine (beef) insulin made from cattle from the United Kingdom are not eligible to donate.
12 American Red Cross does not accept individuals with hemochromatosis as blood donors for other persons at this time.
13 If you had hepatitis (inflammation of the liver) caused by a virus, or unexplained jaundice (yellow discoloration of the skin), since age 11, you are not eligible to donate blood. This includes those who had hepatitis with Cytomegalovirus (CMV), or Epstein-Barr Virus (EBV), the virus that causes Mononucleosis. (Claiming Mono in High School----priceless!)
still more here: http://www.redcrossb...betical-listing (original link was broken)
Message was edited by: jrsboo
Posted 23 June 2011 - 03:08 PM
I don't want to lie so I personally love #4; that would be satisfying on so many levels! But that's just me!
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 23 June 2011 - 04:53 PM
Okay, so the story for next time is that, unfortunately, you are still taking antibiotics for the infection you picked up when you had an intimate piercing done on your last tour of duty in Iraq - and the last time you tried to donate they made you leave the building ringing a handbell and crying 'Unclean!'
Alternatively, stare fixedly at their left ear and tell them that the Red Cross is just a front for an international conspiracy of freemasons and druids who use the blood to control people's minds. Offer to let them see some of your pamphlets. You don't have any with you, but you'd be happy to drive round to their house in the evening with some. Always works for me.
Posted 23 June 2011 - 06:22 PM
Caroline. . .I loved your response! Too funny!
Last time I was in REI, they were having a blood drive going on. The young woman asked me if I'd like to donate. The conversation went something like this:
Lady: Would you like to donate blood? It's a great thing to do.
Me: I'd love to, but you really don't want my blood.
Lady: Sure we do!
Me: No. . .really, you don't. . .I have leukemia.
Lady: Jaw dropped, gulped, didn't know what to say, poor thing. I felt badly about making her uncomfortable.
I don't mind telling people. . been very open about it after my Mother told the world about it in her Christmas letter. . .without checking to see if I was o.k. with that!! But I may try some of your excuses just for fun.
Posted 23 June 2011 - 07:01 PM
I like number 3, that should shut them up! I know what you mean about the job thing. I don't have a problem telling people now that my family and closest friends know but I am worried about getting a job in the future...(unemployed teacher looking for work) Do you have to tell the employer? I think I have to get a physical when I get a teaching job so HR will definitely know and I hope it doesn't keep me from getting hired now!
Posted 23 June 2011 - 08:03 PM
You absolutely do NOT have to disclose your private medical information to your employer. I would recommend not mentioning it before being hired. After you are hired, you'll have to decide if it's of benefit to you. If it were me, I'd wait until I was non-probationary (in most school districts that's 3 years) before letting people know. Keeping costs down is certainly a priority in most school districts now, and non-probationary teachers can be let go with no reason given. Once you have tenure, then you are given due process.
Posted 23 June 2011 - 08:08 PM
That was very funny, I especially your first list number 3
Posted 23 June 2011 - 08:14 PM
Assuming you are in hematological response, a physical isn't going to turn up anything, maybe a little anemia? Now wether or not you have to disclose can be tricky. I wouldn't lead with it in the interview. I think it depends on the situation. If you are out of work I would be less forthcoming. On the other hand, if I was employed with a good job but considering switching, then I would probably lay my cards on the table prior to accepting the offer. The last thing you would want to do is give up a good job with benefits for another job and have them find out you about your situation (many companies self fund their insurance policies) and then look for a reason to push you out. I figure if you are out of work, then you have nothing to lose and if they push you out you can go to dept of labor and try to fight back. If you have a good job and are trying to make a career move then I think you need to put it out there and make sure they are on board with you. Otherwise you could find yourself with no job and trying to pursue a lawsuit; a lot of good that is going to do you.
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