blood & marrow

Pumpkin Positive

William Lyne has been on my mind for the last few days. He’s the 3 year old son of James – known on here as Big Jim1 and author of a thread currently running on here titled “My 3 year old has cancer and what I’m going to do about it”. viewtopic.php?f=30005&t=12848912

I’ve never met him or James but I have a son the same age and I’m grateful that my little lad is fit and healthy.

William’s condition highlights the need for blood donors. He has Acute Myeloid Leukaemia (AML) – people with that condition as I understand it need very regular blood platelet ‘top ups’ to replace those lost to the disease and to the chemotherapy they may have to undergo.

If you want to help William and others like him please consider becoming a blood donor or blood platelet donor and getting your name on the British Bone Marrow Registry

I donate platelets and I’m on the Bone Marrow Register. I donate platelets every four weeks and each donation takes about 90mins. It’s more or less painless and because only the platelets are removed and the rest of the blood is returned to you I can carry on life as normal immediately after the donation – if the weather’s OK I normally cycle home over Dartmoor after donating.

I’m not posting because I want others to think what a wonderful guy I am. I just want to raise let people know that ordinary people can do so much to help others by just giving a little time and a few platelets once a month.

Platelet donation http://www.blood.co.uk/platelets/
British Bone Marrow Registry http://www.nhsbt.nhs.uk/bonemarrow/

raymondo60

I'm gonna do that Pumpkin - I have a Grandson in the USA with a platelet issues (though thankfully not AML- his is called 'ITP') - your post (and by association Big Jim's) has inspired me into action. Thanks and well done.

Pross

I've been on the register since I turned 18 in 1990. In 2007 I was called up as a possible match and eventually donated (via the original method of extracting the marrow from the iliac crest). I would say it was by far the most rewarding experience of my life and it felt like I was putting something back after my wife's little cousin was saved by a transplant a few months before. I also went back a year later to donate lymphocytes (so I know that the patient at least survived an extra year) which I believe is similar to the process often used now rather than the old style extraction. This involved sitting for 4 hours or so with a needle in each arm while the blood was extracted, spun through a machine that seperated the lympocytes and put back into the other arm. Whilst the old style method left me a bit tired and sore for a few days and involved a 2 night stay in hospital I would say it really isn't as painful as people may think whilst the lymphocyte method was virtually painless other than the needles being put in.

I would echo the OPs post and say to anyone who hasn't already signed up to do so. The initial process is only a few very small blood samples to get a rough match.

I also agree on the blood donation (although embarassingly I haven't done this myself for a while now!). My daughter had to have blood and platelet transfers every few weeks during her 18 months of chemo. It was quite an eye opener as I had never really thought about how much blood got used thinking it was only really used in operations and emergencies. I really must find out where I can donate locally, I used to work for a Council and they came to us every 6 months so it was easy.

tim_wand

Like wise, Big Jims boy Williams plight has been on my mind since OP. I ve got a healthy 3 year old girl myself and can only imagine his worry and pain, Been trying to keep the post near the top of the board so its in vision.

My best friend lost his little boy Joel at age six after a long battle and no match could be found, Ever since I ve been on the Anthony Nolan register and help to promote and maintain sessions for finding matches and getting others on the register.

Lets keep this prominent to get William and Jim a result either way.

noiseboyfeetman

Signed up for the platelets, wifes got ITP so thought i'd do my bit.

Gizmodo

I totally support Pumpkin's message, I was a regular blood and platelet donor for the last 20 years and last year needed a transfusion myself whilst on chemo. Don't forget that as cyclists we are at a high risk of an accident and may end up in need of blood (hopefully not but you never know).

If giving platelets sounds too much, then a normal blood donation only takes about 1 hour and men can donate upto 4 times a year (3 for women). It's not much to ask, 4 hours a year to save a life!

Sadly I can no longer give blood, but you can - http://www.blood.co.uk

Big Jim1

Giving blood, saves lives. + you feel very good for doing it.

I used to be worried about fainting doing it, but as I have said in many of my update emails to friends and family that I feel worse after a night on the beer than I ever have giving blood.

Best present you can give that costs nothing but a bit of time.

Great thread!!

themekon

I've been donating blood for over 40 years now I also donated platelets for a few years. Was on the donor register but unfortunately I am now too old.Hopefully I will be able to give blood for a few more years yet.

CambsNewbie

I'd love to give blood however, even though I have been in a monogamous relationship for 12 yrs, and had a HIV test at the beginning of that relationship (negative) my gay blood isn't good enough.. Still makes me angry.

veronese68

I can't due to the treatment I had when I had Hodgkins Lymphoma. But, I used to give blood and would if I could. So I thoroughly applaud the sentiment and thank all of those that can and do.

p9uma

I have been giving blood for 20 years, I have registered to donate platelets, have they contacted me, have they buggery. I'm gonna chase them up tomorrow.

Pross

CambsNewbie wrote:

I'd love to give blood however, even though I have been in a monogamous relationship for 12 yrs, and had a HIV test at the beginning of that relationship (negative) my gay blood isn't good enough.. Still makes me angry.

I can't believe that in this day and age with HIV / Aids being better understood that they still take this attitude. I guess the only way around it is for gay donors to lie on their forms! Surely the blood is screened before use?

shedhead

Hey Pumpkin,

I had a RTA on my bike in 1999 & had to have a tranfusion of 3 pints, now i gave blood for about 8 yrs previous to that. I was told in 2000 i cannot give blood any more as my transfusion was pre 2000 & there is a very slight risk of having CJD from the transfusion, does anyone know if this is still the case where i can't give blood ?

Cheers

CambsNewbie

Pross wrote:

CambsNewbie wrote:

I'd love to give blood however, even though I have been in a monogamous relationship for 12 yrs, and had a HIV test at the beginning of that relationship (negative) my gay blood isn't good enough.. Still makes me angry.

I can't believe that in this day and age with HIV / Aids being better understood that they still take this attitude. I guess the only way around it is for gay donors to lie on their forms! Surely the blood is screened before use?

The blood is screened before use. It's seems you can be heterosexual and have unprotected sex all over the place as long as you only THINK you haven't been exposed to HIV. If you are gay and use protection still not good enough. Even oral with a condom (yuk!) is enough to rule you out.

I don't know 100% but I'd imagine lying on your form is some kind of criminal offence.

The current rules are better than they used to be. It used to be if you had ever had sex with another man you couldn't give blood, now it's if you haven't for 12 months.

AlSee

This really annoys me.
I used to give blood as I thought it the right and simple thing to do.
I received blood myself after a particularly bad (bike) accident and was even more convinced of the need to donate.
Now I find I cannot donate (amongst other things) because I might pass on the CJD that they might have given me.
I can’t even register as a bone marrow donor as you do that via blood donation. Will they even be interested in my organs should I get flattened by WVM?

Pross

AlSee wrote:

This really annoys me.
I used to give blood as I thought it the right and simple thing to do.
I received blood myself after a particularly bad (bike) accident and was even more convinced of the need to donate.
Now I find I cannot donate (amongst other things) because I might pass on the CJD that they might have given me.
I can’t even register as a bone marrow donor as you do that via blood donation. Will they even be interested in my organs should I get flattened by WVM?

Not quite sure what you mean by the bit it bold, do you mean you can't as the bone marrow donation takes blood or because you can only register when giving blood? If the latter then you can register online with Anthony Nolan or the British Bone Marrow Register. If the former this may not ne the case unless someone has definitively told you it is as it does not mention recipients of previous blood donations on the exclusion criteria (for CambsNewbie, it also doesn't specifically exclude gay men)

http://www.anthonynolan.org/What-you-can-do/save-a-life/Medical-exclusion-criteria.aspx

Note that the age criteria is Anthony Nolan's own due to the cost of adding new donors to the register and the actual age limit is 60 - you can sign up until 59 through the BBMR, either route puts you in the same register and Anthony Nolan facilitate all the transfusions. Likewise, women can also be donors.

CambsNewbie

Cheers for that Pross..

AlSee

Thanks for that. It seems that Anthony Nolan rules me out on age grounds.

BBMR says "You must be aged between 18 and 49 years old (registered before your 50th birthday) and be a blood donor." Oh well.

p9uma

Well, I chased them up, partly motivated by this thread but mostly motivated by my best friend of 40 years dying on Sunday afternoon after a short illness with cancer at the age of 54.

Yesterday I went for my tests and I'll find out next week if I am elligable to donate platelets. I was considering doing some kind of charity fundraiser thing for one of the cancer causes, but raising money so 40 % can be spent on directors salaries and plush offices does not sit well with me. I think donating blood, platelets and body parts has a more direct effect on the people who need them, it's also a longer term commitment.

I'll let you know how I get on.

Gizmodo

p9uma wrote:

Well, I chased them up, partly motivated by this thread but mostly motivated by my best friend of 40 years dying on Sunday afternoon after a short illness with cancer at the age of 54.

Yesterday I went for my tests and I'll find out next week if I am elligable to donate platelets. I was considering doing some kind of charity fundraiser thing for one of the cancer causes, but raising money so 40 % can be spent on directors salaries and plush offices does not sit well with me. I think donating blood, platelets and body parts has a more direct effect on the people who need them, it's also a longer term commitment.

I'll let you know how I get on.

Firstly my condolences on loosing your best friend at such an early age, secondly well done for following up on the platelets donation.

For you, or anyone that thinks "but raising money so 40% can be spent on directors salaries and plush offices does not sit well with me" (and I agree by the way), why not fund raise to buy something that the charity needs with the money and donate that.

For example, go to your local Hospice/Hospital Oncology department or whatever, ask them what they need, and how much it would cost. It could be a comfy chair for when patients are having chemo, a wheelchair for when patients are too weak to walk, a drip stand and pump, anything. You then have a target amount that you know you want to raise and none of the money can go to the directors perks.

DrKJM

I thought I was excluded on the basis of some medication I take but this thread prompted me to check the current situation. Guidance for some previous exclusions has changed. Turns out I can start to donate again. If you think you might be excluded because of meds but used to donate it might be worth checking again.

Pross

P9uma, sorry to hear about your friend. I agree with your sentiments about some of the larger charities but there are still plenty of smaller, local charities where the vast majority of money raised goes towards helping people. In my case I try to raise money for LATCH which is a Welsh based charity for children with Cancer and Leukaemia.

p9uma

Gizmodo wrote:

p9uma wrote:

Well, I chased them up, partly motivated by this thread but mostly motivated by my best friend of 40 years dying on Sunday afternoon after a short illness with cancer at the age of 54.

Yesterday I went for my tests and I'll find out next week if I am elligable to donate platelets. I was considering doing some kind of charity fundraiser thing for one of the cancer causes, but raising money so 40 % can be spent on directors salaries and plush offices does not sit well with me. I think donating blood, platelets and body parts has a more direct effect on the people who need them, it's also a longer term commitment.

I'll let you know how I get on.

Firstly my condolences on loosing your best friend at such an early age, secondly well done for following up on the platelets donation.

For you, or anyone that thinks "but raising money so 40% can be spent on directors salaries and plush offices does not sit well with me" (and I agree by the way), why not fund raise to buy something that the charity needs with the money and donate that.

For example, go to your local Hospice/Hospital Oncology department or whatever, ask them what they need, and how much it would cost. It could be a comfy chair for when patients are having chemo, a wheelchair for when patients are too weak to walk, a drip stand and pump, anything. You then have a target amount that you know you want to raise and none of the money can go to the directors perks.

Thanks for your kind words and encouragement.

That's a very good idea on direct fundraising I shall give that some more thought and do some research. I wonder if in this day and age wether folk get a little tired of being asked for sponsership donations? I seem to get asked two or three times a month to sponsor someone to jump out of a plane, or to eat a whole bath full of baked beans, whilst everyone that takes part in these events are doing worthwhile and honerable fund raising, I wonder if I am alone in thinking that I just want people to feck off and stop asking me for money!

p9uma

Pross wrote:

P9uma, sorry to hear about your friend. I agree with your sentiments about some of the larger charities but there are still plenty of smaller, local charities where the vast majority of money raised goes towards helping people. In my case I try to raise money for LATCH which is a Welsh based charity for children with Cancer and Leukaemia.

Thanks for your kind words. I will look into to see what I can do for a fund raising event.

It would appear from my research that donating platelets is a very important and worthwhile thing to do. Each platelet donation can help up to three adults and twelve children, so to all of you reading this if you feel inclined to help it may be worth you contacting NHBTS to see if you can donate.

Gizmodo

p9uma wrote:

I wonder if in this day and age whether folk get a little tired of being asked for sponsorship donations? I seem to get asked two or three times a month to sponsor someone to jump out of a plane, or to eat a whole bath full of baked beans, whilst everyone that takes part in these events are doing worthwhile and honourable fund raising, I wonder if I am alone in thinking that I just want people to feck off and stop asking me for money!

As long as you're only asking for a few quid I don't think many people begrudge that. Make it easy to donate a pound or a fiver and you won't wont have much trouble.

Kendal Black Drop

p9uma wrote:

...to eat a whole bath full of baked beans...

I would pay money to a good cause if someone is offering to do that.

p9uma

Update:

I got a call today from the platelet donation centre to say that I have enough spare platelets to donate. So now I have to make an appointment to go for the first session. So that good news.

Gizmodo

p9uma wrote:

Update:

I got a call today from the platelet donation centre to say that I have enough spare platelets to donate. So now I have to make an appointment to go for the first session. So that good news.

Good man, I'm proud of you.

mattshrops

Had a fair bit of contact recently with a local hospice. If any of you guys or girls are thinking about doing some fundraising then i would strongly recommend you check out your local one. the care given to both the patient and relatives is fantastic , the place is half staffed with volunteers, and to be honest not trying to knock the hospitals- i understand their limitations- but the difference is immense.My dad felt frightened and alone in hospital and once at the hospice he could have visitors all day, better food,constant contact with staff etc etc.


Cambs Newbie I am almost speechless at that.Thats a f@cking disgrace.Needs someone to go to court i guess-ridiculous.

I also had a major bike accident and the blood transfusion left me with red cell antibodies present in my blood-which i believe means i have to have the exact match if i have another transfusion rather than the one type suits 3 usual. Not sure if this counts me out for donating, but i've been meaning to do something after getting my own life saved- thanks for posting i think its time i got off my @rse

p9uma

Well! I am here at the JR in oxford donating platelets right now. I just thought I'd update anyone who's interested.

Pross

Finally managed to get to a blood donor session on Monday evening, it was advertised on all the posters as running until 6.50pm which meant I got there with 25 minutes to spare. Unfortunately I then got told the sessions run on an appointment basis and they didn't have any left! This seems a huge backwards step as there must be lots of people who can't guarantee getting there at a certain time and potential donors are getting turned away. I had donated regularly for years before having to stop for a while and never came up against an appointment system in all that time, why not just have a doors close time advertised for a sensible period prior to the end of the actual session? I haven't managed to find another suitable session that I can attend in the next few months.