I am 15 months post transplant for Acute Myeloid Leukaemia and doing really well. At my last appointment with the transplant team I was told I need to start venesections to reduce the iron in my blood. I keep being told it is only like donating blood, but I would never have done that in a million years! I really dislike blood tests, and so do my veins, has anyone any advice how to cope with this treatment? I know I have been through a lot, but I didn’t think I had anything else to cope with and I’m very anxious about it, I haven’t even got an appointment yet!
Oh @Suey, it is a lot to take in and on, final straw and all that.
I will copy your post to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses
I suppose what has worked for me is to tell everyone you encounter on the day exactly what you have told us. I am sure they will help you through it.
Also to drink plenty of fluids, preferably some hot drinks and have something to eat first.
Most difficult thing is to try and relax.
Then be ever so kind and treat yourself afterwards.
I have a fair few of venesections in my short days of having blood cancer.
It is very similar to donating blood in that you have a larger needle (sorry to say but it’s true) inserted and you sit there as blood leaves your body. There can be lots of stickers but the worst is the few milliseconds of the needle going in and the removal of the tape!
If you’re not liking blood tests and needles then unfortunately this will be no different but be rest assured this is a form of non medication treatment that is designed for the sole purpose of making you feel better. The nurse are always really nice and I feel if you let them know you’re feeling anxious they will do their best to make it as easy for you as possible. I would definitely advise making it easy for them by making sure you drink plenty of water more than usual, the day before and prior as this will reduce the stress of finding a vein and also speed the treatment up! Take some company or load something to watch or listen to to take your mind off it but I often just chat to the nurses or any patient nearby.
Happy to answer any other questions you may have!
Be rest assured it’s really nothing to be fearful of and fingers crossed once you’ve had the first one and know first hand what to expect any more you’ll take in your stride!
Going through what you have already I envisage this being a walk in the park
Thanks for the reassurance, I will remember to drink plenty!
I’m not worried about needles, it’s blood I have a problem with (ironic to have had a blood cancer!), I have had a life long phobia of blood and been known to faint at the sight of it (mine and other people’s!)
Just another thing to deal with x
Thanks for the support. I will drink plenty and explain to the nurses my fears. I think I am also frustrated because I have just been reduced to 12 weekly appointments, took a sigh of relief and then get told I will be having venesections for at least six months!
Thank you for sharing this and i can see that both Erica & Rammie has given you brilliant support already. I simply wanted to add that if you would prefer to talk this through, we are very much at the end of the phone for you- 0808 2080 888.
I can imagine you must be feeling overwhelmed and worried about this despite what you have have been through, particularly if this wasn’t something you were expecting.
The procedure itself its quite straight forward but appreciate that will be limited reassurance until perhaps you have been through the process yourself.
In case it is helpful in any way this Anthony Nolan webpage highlights the need & process when you have iron overload- Late effects after a stem cell transplant | Anthony Nolan.
Go easy on yourself and remember we are here should you need support ongoing.
Best Wishes, Lauran
The bag is always out of sight and you can always take a spare T-shirt or thin blanket over the arm so you don’t see the pipe. Just speak to the staff of your concerns and I’m sure they will accommodate and do all they can do make it easy for you!
Thanks for all your support, I actually had a good night’s sleep last night.
I had read about people having venesections and was relieved they hadn’t been mentioned to me. I assumed that after countless blood tests my levels were OK, turned out ferritin wasn’t checked between day 100 and 1 year post transplant so I had given myself a false sense of security!
I will let you know how I get on - hoping not to make a fool of myself!
I am sorry to hear you are so worried about the venesections. We all have our fears/phobias and dislikes (mine being severe dental phobia) and a huge part of helping yourself is to admit it and let others know.
I used to be a venesection nurse, and if patients came in to have their first (or regular) venesections, and were anxious we would do our best to reassure them on which ever part they were struggling with. Mostly it is needle phobia. As @Rammie18 has said, the tubes and collection bag are out of sight under the bed, and you’ll be lying down, so can look the other way. You may be the only patient at that time having a venesection, so no chance of seeing others (they may be in a cubicle if they are).
I would recommend taking earphones and some chill out music to relax you and take your mind elsewhere, for the appointment. Explain straight away to the nurse what you are worried about and they can help you.
If your worries continue it might be worth asking your specialist nurse or GP for a referral to a CBT (Cognitive Behavioural Therapist) practitioner to help overcome your fear of blood. This could be very beneficial in your situation.
Please do call the support line if you wish to discuss anything further.
Take care and best wishes, Heidi.
I’m not very fond of having things stuck in me and my blood shooting through but I think I’ve got used to it now that I’ve had so many treatments so don’t get too worked up. I hope you’re able to find a way to get through it stress free.
Hi @Suey, I understand your disappointment, as I’ve gone the same treatment myself. It helped thinking that for once I was being treated without any chemical medicines (as I believe some drugs exist to reduce iron too). When faced with challenging procedures like venesections, I found that practicing breath work and visualization techniques are really helpful. Taking deep breaths and focusing on slow exhalation can bring a sense of calm and relaxation. As you breathe deeply, visualize yourself when you were going through a more challenging procedure in the past. Reminding yourself of your inner strength and resilience. You’ve already shown great determination in your journey, and I believe in your ability to cope with the venesections as well! What about a sleeping mask on your eyes to avoid seeing blood? You’ve got this! Cheers!
Sorry just seen your posts and wished I’d seen them sooner. I have venisection, initially quite frequently and now less. I too was very anxious but it was ok. Like everyone says, drink lots of water, i take water to drink straight after too. I found the nurse was great at distracting me and chatting. Not painful at all. The first time, the nurse may want you to rest a little after, but now it’s all quite quick. I still don’t look.
I hope all goes well for you. I have high iron too and the venisection has helped me to feel less fatigue too.
Thanks @raphael2908, an eye mask is a great idea. I have been practicing deep breathing and it did help last time I needed a blood test so hoping it will make this process easier too.
Thanks @Lynd for your reassurance.
I am still waiting for the appointment, which isn’t helping my anxiety. Also it is almost 2 years since diagnosis and the first time I needed a transfusion (I was completely freaked by that!!)
I’m sure it will be fine, I know I’ve been through far worse on this journey, I certainly won’t be looking!
Suey, you have been very brave/ strong. It is, as they say, just like giving blood. No pain at all. Sometimes i have to squeeze what they call a venisection aid, to be honest, it’s more like a squishy dog toy I hope you hear soon. Always good to rake soneone with you.
Take care x
A little update, had a call from my GP’s surgery to book the first venesection - Monday at noon. I assumed it would be at the hospital so feel a bit more comfortable as there shouldn’t be a wait. I explained my fear and a slightly longer appointment has been made. Hope I don’t make a fool of myself!
Will remember to drink plenty and deep breath.
Thanks for all your support.
Oh @Suey don’t you worry about thinking you are making a fool of yourself, I bet they have seen it all before.
I am impressed that you told them about your fear and that they have booked you a slightly longer appointment.
I would also feel a lot more comfortable having my venesection done at my GP surgery.
Somehow my surgery is so much less impersonal than my hospital.
Yep, keep drinking the water and the deep breaths are in order.
I will be thinking of you on Monday at noon and sending you comforting vibes.
Be kind to yourself.
I did it!
Drank so much water I have lost count of toilet visits this afternoon! Did deep breathing in the waiting room and managed to walk into the room without breaking down. She said I was slow but got a pint eventually! Test in a fortnight to see how much it reduced the iron but think I will have to go through it a few times more. Hopefully I won’t be so stressed next time x
Oh, @Suey you did absolutely brilliantly, I am so impressed with you, you deserve to really celebrate tonight.
Be ever so kind to yourself and keep posting
I found out today that my ferritin only reduced by 20. Another venesection booked for later this month. It needs to reduce by 1000, consultant said maybe 4 to 6 times, I will be having words at my next appointment! Hope the next one does a better job. Anyone any idea if it reduces more the more times it’s done? I’m stressing again! Thanks