My long-time Rheumatologist made this referral last week after NHS ECHO & ECG reports + blood tests finally led to Dx, after years of various tests & monitoring. Just posting now incase anyone here knows how long I’m likely to wait having already got these results & been officially put on this urgent referral pathway specifically to my CUH rheumatologist’s named colleague consultant at RP.
Just out of curiosity I checked the RP website which says non urgent waiting times are 3-5 months
Our experience of urgent referrals with Papworth is that you'll be seen withing weeks rather than months although my husband is already under & monitored by Papworth. When he needed an urgent ablation the EP said he wanted it done by 6 weeks, 6 weeks later he has his ablation. When they wanted him to have a CRT-d fitted they said they wanted to do it within a few weeks, it wasn't urgent & he had it fitted within 2 months
You could phone them, they're really incredibly helpful and so friendly to speak to, they may even make the appt while you're on the phone with them, you could also discuss going on the cancellation list. We had to phone them a couple of times yesterday & they really couldn't have been more helpful.
It really earns it's reputation as being a leading heart specialist hospital, we're very grateful my husband care is with them.
Good luck 👍
Many thanks: exactly the feedback am hoping for 💞. Glad your husband is getting this calibre of attention
Will phone them this coming week!
Reason am being vigilant on this is that late last autumn my GP referred me on urgent cancer pathway. I was familiar with that timescale so started asking questions of both my GP surgery & the hospital clinic when nothing happened. Turned out my referral had been ‘waylaid’ for no good reason. I learned a lot from that!
Wish8ng you & your husband good luck☘️
I totally get your vigilance, my husband is where he is health wise because the local hospital 3 times missed the fact my husband was having a major heart attack, the GP also missed it as well.....until he went into cardiac arrest!! When I think it's appropriate I don't stop being pushing until I'm satisfied I've made myself heard! I'm also incredibly polite I hasten to add. Fortunately/unfortunately I've not had to do the so much these days as he's well looked after but that's because his health has deteriorated quite a bit.
I hope your cancer treatment was successful, my husband's cancer diagnosis was delayed due to COVID, so I do understand why you're concerned.
Good luck 🍀 🤞
Thanks so much….am v grateful…these serious ‘glitches’ seem to be normal now.
Me too: “incredibly polite” the other thing I try to do is ask questions with gently enquiring innocent tone of voice when pushing…sometimes I wonder if a course @ acting school might be really useful😉.
Had meant to ask you: when I phone to check this urgent referral is being in processed, should I ring the secretary of the consultant my rheumatologist has specifically referred me to or should I ring the general switchboard, or some general appointment line?
Thanks for asking: that urgent cancer pathway finally did result in a prompt series of appts & treatments - several therapeutic OR procedures with tests etc + am staying on with the clinic watchfully waiting so 🤞. I was taken v seriously by a wonderful team led by a really lovely surgeon. So…
Am curious whether your husband or anyone you've encountered is Dx malignant hypertension? Seems to be quite rare, but am 71 with infant onset lupus + other immune dysfunction & connective tissue disorder illnesses, which apparently can lead to MHT
Take care, both of you 💞☘️
I'm afraid I've never heard of that condition before, your health does sound very complex. You could phone the BHF nurses helpline number, they may be able to advise For a chat with a cardiac nurse, contact our Heart Helpline at 0808 802 1234, open Monday to Friday from 9am to 5pm. Learn more at: bhf.org.uk/informationsuppo....
If you have the cardiologist secretary's phone number then I would phone him/her, my husband always phones direct & has been lucky enough to be given an appt after speaking to her.
Good luck, I hope you get the info you need 🤞
Hi. I'm from Australia so won't comment on waiting times except to say I'm so fortunate to be in Oz, and to have private health insurance. Regarding the 'probable malignant hypertension', this can cause heart failure, a stroke and other serious complications. At the very least you should be on antihypertensives (to bring your blood pressure down) and should have your blood pressure, other symptoms and signs monitored, and regular blood checks e.g. for kidney function while you are waiting. I hope this has been organised for you?
Thanks very much. Are you Dx with MHT?
Although am new to cardiac medicine etc, have read enough of the officially published r3cent lit to understand your points. Thing is, as I partly explained just now above to next adventure, am 71 & a v complex case with multiple rare infant onset multisystem comorbidities. So am in tertiary care & secondary care with multiple hospital clinics & SOMEHOW, despite me reporting signs & symptoms + being tested in various ways etc, none of my long term tertiary & secondary care clinics connected the dots until my rheumatologist asked my GP get an ECHO done last June….i’ve been chasing that ever since.
Part of the complexity of prescribing for my probable MHT is that for a few years have been & still am on longterm high dose scleroderma protocol daily sildenafil (150mg/day) + low dose losartan (25mg) for severe Raynaud’s ischemia reperfusion injury (can’t help wondering how that influences my LVH & this MHT) with my feet at high risk of amputation…so a lot of thought will need to go into medicating these heart etc probs. Anyway, an Acute Care unit respiratory consultant has just raised my losartan to 50mg daily…so….do you know this paper which notes it’s crucial to medicate MHT cases v cautiously
ncbi.nlm.nih.gov/books/NBK5...
Further more, there’s real likelihood of lung clots but due to childhood onset Antibody Deficiency Disease, am seronegative for all my autoimmune Dx (including infant onset lupus) so Dx-ing antiphopholid syndrome is tricky + made more so by routes other than blood t3sts because am allergic to iodine contrasts.
Fortunately am with a good team in Hospice palliative care, categorised End of Life, so am able to feel relatively calm & covered for however this plays out
Grateful for your interest from down under!
PS yes, thanks, my kidneys are always well monitored & doing ok we think…same goes for liver etc. & my blood is regularly checked by my collection of consultants. Currently: NTPROBNP 4-500ish, troponin 29, urea 8.5, CR hovering just above NR, cholesterol 6.04. To complicate matters further, have had some variant of intestinal failure & been surviving on nutrition only from prescription Elemental Diet (Nutricia E028) orally for approx 8 or 9 years, also well monitored. I’m Dx hypermobile Ehlers Danlos, but paternal line’s manifestations inc severe heart disease question possibility of Marfan etc
You certainly are dealing with many concerns, [some of which I have a little understanding of, as my elderly mum (92) has scleroderma with pulmonary hypertension and other complications. She has previously been on sildenafil. We both get Raynaud's and I have looked after (as a GP) people with small vessel ischaemia necessitating finger/toe amputations. I've had temporary heart failure after a misunderstanding with medication some time after having my aortic valve replaced for a 2nd time.] I'm very sorry you are suffering with these things and all the added complexities of iodine allergy etc. It sounds like your doctors are doing what can be done, with increasing the losartan a good decision. It should reduce your blood pressure while also protecting your heart.
I hope you have plenty of love and supports.
Seems to me you’re a dear! Can’t find words to say how much your comments are helping me… & in several diff dimensions. + the gentle kindness of your well informed, & experienced acknowledgement is greatly boosting my morale. Thank you for explaining a bit about your mother (92 is a great age with these conditions, no?!) & your own considerable health challenges
wishing you & your mother all the best 💞🍀
Thank you so much. It is midnight where I am now, so I can sleep with a smile on my face. I hope life is kind to you 💞🦘
That is quite good. My husband had an ablation there waiting for 3 months. Our local hospital, St George’s, the wait was over a year Good luck Marilyn
Pay for consultant 
Worried 
untreated unstable angina
Teeth out FINALLY !!!
Aorta Acending Aneurysm 
