You may be aware about my ongoing struggles to get progress with my possible AFib after my scalding accident in June.
I was referred for an Echocardigram and a 24 hour monitoring tape plus a cardiologist appointment. I never received appointment letter and so chased the cardiology department up. Oops the letters hadn't been sent. I knew that appointments had been made because my CLL consultant told me. Had Echocardigram and tape but never got any results so again chased them. No one had any idea where the results had gone but my lovely consultant eventually got them, thankfully all clear. Still waiting for the cardiology appointment so began chasing this week.
I rang my local hospital, recorded message asking which department I wanted, Cardiology said I, ten minutes later another recorded message telling me to call admin at York. On it goes! After sticking with it for 20 minutes I got a human. After checking she said my record was marked case closed but no reason. She has agreed that she would check and call me back. I am laying bets that the appointment letter/date which I was never told about (like the others) and therefore I didn't attend caused the case to be closed. Currently 31 weeks wait for an appointment after referral from GP/consultant. Good job, I am not ill. Watch this space.
xxx
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hi Alice, sadly this is not unusual with our health service, I am still waiting for results from ct scan from August 14th, I have asked my Gp practice but they say they have not been sent the results and receptionist told me if it was anything serious they would have informed me which I told her was not good enough, but she just shrugged her shoulders 😤. As regards cardiology appointments, I waited 6 months for a 3 month follow up after my HA and only got that because I phoned hospital to ask.
oh no, so sorry to hear this, even if I did nervously giggle in a couple of points. It’s enough to increase any one’s stress level!! Must say my cardiology haven’t been so bad in London. Got an echo for end October. Said I couldn’t make that date so got one for next week 🤷♀️ They are just trying to fathom why blood test on my heart is showing high levels. Interestingly over 10 years I had a Halter (?) for three days. Asked to take it back on Boxing Day. They confirmed they would be open, but alas were shut. Took it back next day and reception asked what they should do with it. I asked they found out what to do, as I was out of patience. Never did get results!!!! And that’s over 10 years ago. Anyway hope all comes good for you. Take care
Our healthcare system in the US has its challenges. When I signed up for Medicare, I went with a supplemental plan that 1) paid for everything Medicare covers but didn’t pay in full (except for meds outside of the hospital) and 2) allowed me to choose any doctor that takes Medicare.
So far I’ve only met one practice that didn’t take Medicare.
This allows us to choose our medical team and basically fire those we don’t trust or like. That part of our medical system I like!
When I start treatment, if as part of the trial I am assigned the new drug (Pirotinib), there will be no cost. If I am to take the older drug, Ibrutinib, it will be the full out-of-pocket cost each year until 2026 (?) when the lower out-of-pocket cost goes into effect. ($2000).
That part is not so great. But, health care is expensive and not everything will be great it seems.
You are potentially eligible for drug assistance even in a trial. If not the entire drug, then the copay at least, perhaps. It's just, medications that are FDA approved are generally not paid for by a trial. Start with the Imbruvica website for patient assistance if you get that arm, then move on to copay assistance if you don't happen to qualify.
I’m having the same problems. After being taken into emergency resuscitation with Covid and rapid heart rate I was referred back to gp. Hospital instructed gp to refer me for echocardiogram and 24 hour monitor. After continuous chasing I was told the waiting list was so long as they were short staffed. I had the echo privately and managed to get the monitor on the NHS. I don’t hold much hope in getting the results for the monitor. In the meantime I’m having to take medication as a precaution which may not be necessary.
sorry to hear about the issues your having seeing a Dr .I have no clue what AFiB is norwhat your other condition is . I t have only seen my Dr while I was in the hospital late Feb and early March . Since that time I have had too video conversations with him for maybe a total of 5-8 minutes .I have took numerous blood tests and 3 or 4 catscans since that time in the hospital spoke to an assistant who arranged most of the tests .I put my faith into what they tell me but no one answered by questions about my urine which smells 10 feet away ,finally after being a nuisance another assistant told me my organs are fine and there’s no reason for the smell .I was told to ask my referring physician what it is but I don’t have a primary Dr .It would seem to me that someone should refer me to a urologist as well as explain what the test results are .I haven’t a clue expect comparing it to what I read online .I feel for you since it sounds like someone should see you immediately.I can only give you my prayers and hope your concerns and problems are addressed soon
Could you be dehydrated? You should drink sufficient liquid for your urine to be a pale straw colour. Also if you are male maybe get your prostate checked.
I don’t know if the fact that we are experiencing these same frustrations world wide is any consolation - unfortunately it’s not only in the medical area - with so much technology I think we lost the human touch to try and fix a problem when the technology goes awry - and that does not take into account the amount of wasted time sitting at the phone until your are connected or waiting on the line only to have the call dropped and having to start again ….
With all this technology I would have assumed better more efficient service and the opposite is true - If we don’t fit into the prearranged menus of services then it’s a problem - So much for our protests that each of us is diffent and our Cll presentation may not fit one of the choices …
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Covid at last!
Dr & Haematologist say no to second pneumonia jab 
Probably nearing treatment -some questions 
Worried about the numbers about to start FCR
