I'm feeling really sad, upset, angry and let down, I've just sent a complaint to the District Health Board here in Wellington. I got to my appointment this morning having starved myself for sedation to be told by the Registrar doing the BMB that I wasn't getting sedation and I had to use a Penthrox inhaler instead, despite being assured by the nurse when I called last week that yes I could definitely have sedation and there would be a recovery bed for me. The change to Penthrox was not communicated to me in advance of the appointment, and I wasn't given the opportunity to argue my case. It wouldn't have been possible for them to do it with sedation this morning (which he didn't want to do anyway), I would have had to try insisting and rearranged the appointment. Having travelled all the way from north of Upper Hutt in rush hour, and my husband taking the time off to come with me and bring me home, I felt I was on the spot and didn't have much choice but to do as he said. The Penthrox didn't work for me at all pain wise, despite breathing it so hard I almost passed out, the whole thing was so painful I was still crying out despite the Penthrox. It took way longer than I was expecting and he had to go in multiple times with the aspiration needle to get fluid, 'sharp sting when it goes into the bone, and about 5 seconds for the other one', total lies! I now have another unnecessary traumatic experience to add to my hospital memories, which I was trying my best to avoid after my knee aspiration two years ago. I think my poor husband was as traumatised from seeing me suffer as I was from having it! So much for looking after the patient and listening to their concerns ☹️😥😥
Feeling sad, upset, angry and let down after my ... - MPN Voice
Feeling sad, upset, angry and let down after my BMB in NZ
Hi Wendy, so disappointing that you have had another traumatic experience. And if that is not enough, you also now have a week of recovery to put up with. I hope the next week goes well and that you receive good news when you get the result . Best wishes, Simon
Hi Simon,
Thank you for your kind message. I am going to write to my haematologist too as I'm not sure if they would get to see the complaint I made, it wasn't them doing it but I need to say that what happened was not okay and something needs to change, it happens unnecessarily to too many people and it all depends where you live in NZ. Some areas give sedation as routine and others don't. Plus I want my results before my next appt in October in case I decide to seek another opinion when I'm in the UK in September. Fingers crossed it confirms ET and not prefibrotic or anything worse 😁 It's uncomfortable now but I've had far worse pain after surgery and I'm managing fine with paracetamol and codeine, I just need to be careful not to knock it or sit in the wrong way 😊 I have my own IT business, just me, and it's really busy at the mo so no time to relax and recover slowly 😉
I'm really looking forward to attending the Belfast forum, it was the only one that fell during my visit so my husband and I are taking a detour and flying over to Belfast from Liverpool to attend the forum on the way to our holiday in Wales with my family 😉
Best wishes
Wendy
So sad to hear your traumatic experience.
I am sending e hugs and hope you can put this behind you.
I too would have reacted in the same way too.
Not a fan of pain.
When I have to go to have a procedure I practice my zone meditation.
This helps me, go on the web and look formulaic to help you zone out.
Hope your feeling better soon.
Thank you for the hugs Roger41, I will go and look for it in case I ever need it in the future 😊 but the really upsetting thing is that I was supposed to have sedation and didn't get it, I wouldn't have been in that situation if I had been given it. I was feeling relatively relaxed after being told yes last week, and I don't think I would have agreed to do it without sedation if I had been told in advance and hadn't been put on the spot at the appointment ☹️ I don't see why we should suffer and have to be 'brave' when there is a perfectly good solution for those that choose to use it, they just need to consider the patient's wishes and not bully us into a different option for their convenience!
Hi Wendy,
So sorry that you have had such a bad experience with the BMB. Being promised sedation, and then having the Penthrox instead was a real let-down and inexcusable. You would have felt under real pressure to have gone ahead with it, even though it was not what you wanted.
Regarding the pain, it certainly varies from person to person, and some very lucky ones have little of it. In your case, having to go in multiple times with the needle will have made things particularly unendurable.
I do hope that your healing goes well, and you are soon pain free.
I tried to send you a longer message earlier, but it dissappeared into the ether when I pressed send for some reason, so hope this one gets to you.
Thinking of you,
Peter and Laura
I’m sorry you have had such a bad time. I had to have BMBs every other year over a long period of time. I have tried sedation (no need to fast) and all it does is help you to forget what was done. It doesn’t send you to sleep. As I did not always have someone to come home with me after it I often had to have a BMB without sedation. The level of pain depends on the skill of the doctor doing it. But is is always very painful. A rest and cup of tea after it is a help. Luckily I don’t have to have them so often now. I am attending a leading London hospital and have been under the Haematology Department for 18 years. I have ET and MDS. I do hope your treatment improves quickly .
Thank you Eadaoin, feeling fine apart from the local bruise pain and a bit of aching which is pretty good with paracetamol and codeine. Yes I realise you don't go to sleep with sedation, it's conscious sedation, but most people don't remember anything after it unlike the experience I had yesterday, it's administered by tablet or intravenous here apparently. But I remember the whole thing and they didn't explain that I could increase the effect with the Penthrox by placing my finger over the hole to make it stronger which maybe would have made a difference, who knows ☹️
Oh and the instructions I was sent from the hospital said not to eat or drink for 4 hours before if you were having sedation 
It’s over, Wentry! Nothing quite like the relief after it 🙂I’ve had various experiences from passing out on the first one where I was told “Sit there. We’ll get a doctor down” - no explanation or offer of sedation. Then I moved house and changed hospitals in 2000 and ended up in a hospital where research into MPNs was being done (Guy’s) and the care was so much better. Having said that I have never had a pain free BMB. I don’t think it’s possible because they have to get right into the bone marrow where a local anaesthetic cannot reach. The important thing is the result and I hope yours is the best ever.
Yes it is over but I can't say that relief was my main emotion 😂 Once I'd got over the initial trauma and my head cleared, it was mostly anger at the fact that someone was able to overturn the decision to allow me sedation, without discussion and without giving me a valid reason, other patients did have sedation that day I found out yesterday. For me this is now more an issue of patient's rights and empowerment, we shouldn't be put into a position where the agreed plan changes at the moment of the procedure with no warning. Also I wasn't given the correct instructions to get the most effective use of the Penthrox, that is just incompetence or lack of care. I just want then to understand the mistakes they made so that someone else doesn't have to go through the same I did.
I fully understand that it can't be pain free, and I know it still causes distress during the procedure, but most of those who have the conscious sedation don't remember it afterwards, and that must be preferable surely if it's possible to achieve. I guess it may still not wipe it out completely for some people but they should at least be allowed to try to achieve that to minimize distress afterwards.
Wendy
That sounds awful! Why on earth didn't they give you a double dose of local anaesthetic, then you would have only had to cope with the pressure, feel for you, have had traumatic hospital experiences myself.
Regards Carole
Thank you Carole, true, maybe that would have helped. I wrote a complaint to the hospital yesterday but not through the formal channels at this stage just through their 'contact us if you want to tell us anything'. They said it could take 20 days for a response, so I managed to get hold of my haematologists secretary, and through her have sent a long message to my haematologist about it too. It was nearly 4pm when I sent it so I wasn't expecting a response from him today, but it will be interesting to see if and when I get a reply and what he says 😉
Wendy, thinking of you and hoping the memory will fade fast and the results of the test be VERY clear. Praying for these very things right now. x Jan
Thank you Jan, ME TOO! Though I honestly don't think that memory will fade much any time soon 😏 I'm so hoping that it's not inconclusive, I don't think I fancy doing it again right now 😂 I will wait to see how the hospital and my haematologist respond to my complaints.
I feel like that Registrar should be made to sit with me and go through a restorative justice process to make him understand just what he did to me, and make him realise that patients are real people who can come back to bite him if he doesn't respect our wishes and treat us seriously and with kindness. At least I got a reasonably good night's sleep last night having made those communications (just woken up as I'm in NZ), I kept reliving it the night before for half the night 😢
Wendy x
I must confess, it took me weeks to get over the shock of having it done. I’m fearful of needles at the best of time. I don’t believe they will want to retest you. I pray you will soon feel restored, physically and emotionally.
Jan x
Thank you Jan, it was actually me that requested the BMB, I'm one of those that prefer to know as much as possible about what's going on, oh well 😂 I thought the bruising pain was pretty mild yesterday, but on waking up today it's obviously like when you overdo it with exercise, and your muscles hurt far more second day 😂 All good now with a dose of paracetamol and codeine 😄
Wendy x
What about using something like a gel for localized pain. That helped me a lot. Volteral? I hope each day gets easier. I think the trauma in my head was worse than the pain in my hip and then the pain in my hip only reminded me of what I had to go through with. We are such complicated beings. 😉 Actually, I seem to recall they said to wait until the wound healed over before I put anything on it, locally. Check with doc. Jan x
Hi Jan,
I'm all good regarding the wound it's not bad at all, it feels more like glute muscle pain or a trapped nerve, but perfectly bearable, not very painful at all with the odd painkiller. It's a lot less painful than I was expecting. I'm not supposed to use NSAIDs due to blood pressure issues and low clotting factors so I try to avoid using them where possible, plus they give me stomach pain, even the gel if I use too much, it is still absorbed apparently Yes the memories and our minds are our own worst enemies sometimes 😉 The wound is only like a spot, I don't think he cut it at all, I've left it free from plasters or anything once I took off the plaster I came home with and it's not being irritated by my clothes and doesn't seem to be leaking at all 😁
Wendy x
Hello. I saw your post and felt compelled to respond. I have been seeing a heamotoligist due to high platelet count of 591. I was referred by my doctor and been put on baby aspirin and wait and see approach adopted. I have read horror stories about having a BMB, and when I got an appointment through to have one, I got myself into such a state, that I cancelled it. I next see my heamotoligist on July 19th, and will probably be told I need one to diagnose ET, which they said will be the likely outcome. They only offer local anesthetic at my hospital in northampton, in the UK. I asked for sedation, but they said they did not offer this. I am so sorry for your poor experience, and like you, I would have gone along with things too in your situation. Best wishes, sarahjane.
If I have to have another BMB I think I will visit the pub first. Just an idea!
Nice idea, do you think they would treat a drunk person? 😂I don't do well with alcohol these days it makes me pretty ill unfortunately, tricky to decide if it would be worth it ha ha 😉
Hi Sarahjane,
Thank you for your kind words, I think I would have tried to go elsewhere if I'd known they weren't going to give me sedation, unfortunately I had no warning and was quite relaxed about going thinking I was getting it 😏Could you ask your haematologist or GP for a prescription for something like Lorazepam, they use that in tablet form here for BMBs in other hospitals in NZ rather than the intravenous version? Then you could take it in advance as long as you have someone taking you and bringing you home? You would need the dose that is used as an amnesiac for minor surgeries rather than the dose for someone on it daily as a normal med. I would try and find somewhere I could do it privately if they refused me sedation next time, I should be able to claim it on my health insurance but there may not be anywhere private in Wellington that performs them, but I would fly to Auckland if necessary! I'm sure with a private service they would give you plenty of whatever is needed to keep you comfortable 😂
They did bloods again straight after my BMB on Tues, got the results today and my platelets are the highest they've been at 748 but it does seem to go up and down a bit month on month, so it's still watch and wait, but I wanted to know more and get confirmation of ET rather than early something else so requested the BMB myself, I'm JAK2+. I stopped aspirin since Saturday for a week as I have a tendency to bleed, but I've only been on it 3 weeks anyway despite being diagnosed last year, as my clotting factors were low and I'd had haemorrhaging the last 3 times I had surgery, so they were quite cautious about prescribing it for me. We're seeing how I go with it, all okay so far I think though I do seem to have more bruises 😏
It's up to you if you have a BMB they shouldn't force you, many people choose not to, but I wanted to know as much as possible 😉 Do you have any of the gene mutations like JAK2? They can test for those with just a blood test, you don't need a BMB for that 😁
Best wishes,
Wendy
Oh so angry for you. You are a pawn. As you say you take what they offer you or leave it. What is the health system out in NZ?
Hi Wyebird,
I had a good response to my complaint so hopefully it won't happen again 😉 The NZ health system is pretty good really, we pay for consults with our GPs, but prescriptions are free for the family after a certain number of items which I usually hit mid way through the year, $5 an item before that. Hospital treatment is free, as is treatment for accidents (or subsidised if the cost for the GP or physio etc exceeds the allowance). We don't have all the drugs approved yet which you do in the UK, so Ruxolitnib has recently been approved for MF stage 2 onwards, but Pegasys hasn't been approved for funding yet, it was recently approved for Australia so hopefully it's just a matter of time...
I guess worst case I could come back to the UK and wait 6 months to requalify as I have dual nationality, but they'll probably change the rules and I'd rather not do that unless it was absolutely necessary.
Hopefully I won't need another BMB for a long time!! 😜
Cheers,
Wendy
I have had my expectations so completely blown out the window every time I see a specialist. It is so very hard, I don’t know how I am supposed to think or what I am supposed to expect. I have never thought of myself as ‘entitled’ but humanity has changed so quickly that I suspect this is what has happened. I am now trying to ween myself off any expectation of basic compassion from any kind of medical professional (I very much suspect that it’s different with nurses). Strange and lonely times, I’m not sure if there is sense in this but I imagine it may help.
On the other side of the coin, I was recently done a big favour by a receptionist at a Dermatology clinic, at my appointment I brought her and the doc a mini token of my appreciation which I left with other staff members. The receptionist called me the next day, so lovely……
Go figure.
And best of luck with your next trial 😢 Wentry, it may just work out well, fingers crossed for you, dear. And remember that NZ is a little behind these other worldly changes so have faith….maybe???
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