I’ve just had the experience of going to an important consultant appointment accompanied by an MPN buddy. Not an official, matched by Maz, buddy, but a fellow member of this forum who lives not far from the hospital and who just came along when I asked her. . It was totally different ftom , and very much more productive than, the occasions when I’d had to go alone. She helped me stay on track with questions I needed to ask, and generally kept me sane! Huge thanks.
Amazingly, I left with an agreement that the consultant would organise an MRI scan to check on troubling potentially neuro symptoms, a blood film test to assess current MF status, and a blood based ( rather than BMB based) update on genomics. As I’ll be having to change hospitals and consultants ( present chap retiring from NHS after 40 yrs) it’s important for me to have updated results that I can download from the Epic system and literally take with me.
Consultant also agreed to write to my local GP and ask them to monitor full blood count fortnightly to track the effect of increasing the frequency of EPO injections: 30k weekly was too much , 10k weekly ( the next lowest pre filled syringe dose) was too little: so we’re trying 10 k every 5 days to see if that keeps my Hb at the lower end of the normal range, where I feel most comfortable.
I have PMF, so quality of life is what its about.
I left the hospital with fresh supply of EPREX as agreed- (only one month of Rux, not two, as pharmacy was low on it. )
And feeling that I’d been listened to, and had been a genuine partner in the process. I couldn’t have done it on my own. I’d ‘ve got frazzled and distracted and likely lost my cool
Thank you,
Written by
Rachelthepotter
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Glad to hear you had a successful appointment. It is great that you had someone who could accompany you to ensure a positive outcome. It sounds like you have a very good plan in place to effect the transition in care to a new provider. With good planning, you can ensure that you transfer to a hematologist with the MPN expertise you need.
That is awesome! My mind goes blank when I see any of my specialists! Had I not sent all those articles and stuff prior to my appointment who knows what would have happened. My husband comes with me to MDA and helps some because he is calm, but I bet having someone like you took could more questions answered! Sometimes I just stay quiet because I am afraid. I know that is silly for a grown adult, but it is true! So glad your appointment was a success!
great news, it’s usually useful to record the consult on a phone, it’s amazing how different the content can sound when you listen back to it a few times especially if one is stressing out during the consult
Also I like to start writing a list of questions at least a week before the consult, then when it’s complete re write it in priority order before the consult
I tried to record an appt on my phone, Onc/Hema said NO. That was unexpected. I like your suggestion of writing down the questions as you have them. And reprioritizing the morning of. Using the Google Keep app is helpful and easy to reorder.
Any doc that says no has something he/she is insecure about. You could just keep the phone out of sight as on top of handbag or pocket, it works :-), you could practice at home recording the TV to check its recording ok , there can be background noise in a pocket
In most cases not Dr's decision, hospital/clinic policy.
Twelve states (California, Connecticut, Florida, Illinois, Maryland, Massachusetts, Michigan, Montana, New Hampshire, Oregon, Pennsylvania and Washington) require all parties to a conversation to consent to recording. In these states, recording an encounter with a physician would not be allowed without the physician’s consent
obviously it wouldnt be allowed without the physicians consent, also I suspect most of us on this forum are not from the the US
we need to remember the reason for the consult is to give the patient the best help possible and that can include in most cases allowing them to record the session
I've often recorded in the past, particularly helpful if you get a foreign Dr with poor English. Sometimes you have to listen back about 3 times before you get what they said.
Indeed , even when the doc has perfect English I find I hear something different each time I listen, also I find if one listens to it months later it can have different impact as we learn more about ourselves
It’s wonderful that you found someone from this site to go with you. I have brought family members as well as my partner to important appointments, but it’s not the same as having someone who knows exactly what’s going on and who knows the right questions to ask. I also try to keep a journal of my symptoms so I don’t forget when they ask me.
It’s really good to hear from you & I’m amazed at how much you accomplished in just one appointment! Tremendous results. And you were so wise to bring a buddy. Katie
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To go onto meds or not?
Energy costs and inflation going through the roof and now the NHS finally gone to pot!!
Day +28 and longing to go home 
