Hey everyone! I'm wondering if anyone has any information as to whether or not an AVM survivor can donate blood when their AVM has been "obliterated".
I went to donate blood with a friend today — it's been 6 years since the AVM in my brain was removed, but thought I would do my due diligence and advise the nurse about the surgery. She wasn't sure if it would impact my ability to donate blood or not as I was the first person she had met who had had an AVM, so she called up a doctor who also wasn't sure, but advised against my donating blood. As such, I was left in the waiting room feeling quite disappointed!
I can understand why the doctor advised against it, as the change in blood pressure from the donation could trigger something — however, it has been 6 years and I have nearly no side effects from the surgery (some loss of vision). I'm in good health and had perfect stats otherwise in terms of blood pressure and haemoglobin. I was really looking forward to it too!
I'm curious if anyone had any experience with donating blood after having their AVM removed? I'm quite tempted to go to my doctor or neurosurgeon and ask them their opinion, and if they could write me a letter to say that I am ok to give blood. Donating blood is something that I feel very strongly about, so I would love to try again with my doctor's consent!
If you have any thoughts I would love to hear them :)
Hi Lauren, I don’t think we’ve ever crossed paths here but we have a lot in common…I had my AVM removed in 2011 by Dr Erica Jacobson at St George Hospital and now at Prince of Wales… I think Dr Kwok had been part of her team also and their such a great group of neuros and have hands of God!
Back to your main topic I haven’t heard any issues in giving blood seeing as I’ve had blood tests in the past and never thought anything of it, however it won’t hurt to call the neuro and get their consent…good to see your doing well and to see another Sydney AVM survivor… God bless!
I'd be cautious @ this as well. Your thought @ BP of the area is excellent.
Some AVMs are part of some genetic disorders involving platelets. That is the iron-heavy part of the blood after it has been spun down. Sometimes I have edema, with slightly high level of ESR (Sedimentation rate) so I just never want to mess around with that ratio. For those of you who have had genetic studies, you may very well feel free to donate blood. Ask your doctor.
If you fainted, and treatment caused a big whoosh thru your blood vessels then I don't know if that is safe. Ask your doctor; I would not assume all is well.
If I have a lot of blood drawn, I get dizzy if I stand up too quickly. My husband faithfully donates blood twice yearly, he enjoys a good steak afterward. But in our age group now (60) we may be restricted.
More likely to faint means more likely to break a bone when you have osteoporosis. These are just my little thoughts; maybe rationalizations to justify not giving.
Lauren....Please check with your neurosurgeon also, but I checked with mine via an email and he said even though I had the radiation and the craniotomy, I could donate blood.
Hi Adrian, nice to meet a fellow Sydneysider! I dropped off the AVM support website a little while ago as I was struggling with my mental health, but would like to go to the next local meet-up if I can make it. Do you know when the next one is?
Dr. Kwok was amazing and did a great job with my AVM. I'm definitely going to see a neuro (Kwok has since retired) and ask them about it, as I'm really keen to give back any way that I can!
I guess the biggest issue that I was told at Red Cross is that, because they're taking half a litre, that's quite a fair amount of blood in comparison to blood tests and they're unsure if that could cause a change in pressure. Interesting, but since I've been given the all clear I'm not so sure that the caution is warranted in my case.
Hi Eileen, thanks for the cautionary advice, it's greatly appreciated! Thankfully my AVM isn't genetic and as I'm still quite young (26 this year) and fit and healthy, so hopefully I won't have any drawbacks. I'm still going to consult my doctor and get his advice first though.
Thanks Louisa, I appreciate your feedback! Yes I'm certainly going to check with a neuro — unfortunately mine is now retired so I'm going to have to go back and get a second reference. I'll let you know what I find out!
Not sure I haven’t attended a meeting due to family commitments etc however not sure who arranges them…wow I didn’t know Dr Kwok retired but I would definitely recommend Dr Jacobson as she is fantastic also…I understand the giving of blood vs blood tests is a major difference but I understand the concern as I would be the same & still am with a lot of things… God bless!
I was told as long as mine was active that I could not, which it is. But I don't see a problem after that. I do have seizures however. I admit that I am scared to, because I don't know if any alteration in my medication levels may be effected. I am a member of another support group that is called My Epilepsy Team. I asked the very same question about wether it would be safe for me to give again.
I donated blood after I had my AVM removed from my temporal lobe 20 years ago. I also had two children I have been blessed my vision was damaged but I’m ok.
In the past the blood bank refused to take blood from me because of the seizures. Then, years later they started asking me to donate, but I never have.
I had the same issue at the blood donation center some time ago. Therefore interested in how it ends up for you.
(which reminds I have forgotten to ask my AVM doc about it)