Support thread for those awaiting medical appts,tests and surgery

[ohyouBadBadkitten]

It seems that there is probably rather a lot of us who are impatiently waiting to see consultants, have tests or waiting for surgery. So a thread for you to vent in or post your 'hooray's'

me. Am waiting to see my cardiologist. been a bit of a catalogue of delays and getting lost in the system. I have a wonderfully supportive gp who has just calmed me down after me losing the plot a bit when I found I wasnt on the appt system.

How about you?

I'm coming to the end (hopefully) of my one woman attempt to bankrupt the NHS.

At the end of November 2011 I had an aortic valve and root replacement (12 days in hospital), with the added bonus of a pacemaker added after surgery because I developed complete heart block.

I am waiting for:

An appointment to see an electrophysiologist (type of cardiologist) to sort out atrial flutter arising from my surgery.
Cardiac rehab
Test results which have not been relayed to myself or my GP (which prob means that they are clear but I still want to know).

I have:

An appointment to see a neuro-opthamologist (May 2012)

I should be waiting for an appointment to sort out my awful warfarin periods, but I can't bear to tell my GP that something else is wrong .

Before my op, I would rarely darken my GP's door, and that's how I liked it.

warfarin and periods - you poor poor thing. Well worth going to see the gp about that one. if you end up anaemic that would only complicate things further.

I know I've said on another thread, but it must be a massive thing for you to come to terms with and it is all relatively recent really. Its probably going to take time to come to terms with it all.

Why are you seeing a neuro-opthalmologist?

Hi,
I've had and waiting for so many things. I've got a consultant for nearly every area of my body.
This year, operation wise, I had an emergency op in jan which was to take my appendix out and a burst ovarian cyst .
And Currently waiting for more spinal surgery, and surgery on my breasts.
I have so many chronic health conditions and have been through so much.

Does anyone else have to have central line in neck or femoral lines in groin instead of normal lines in arm/hand/feet? Because access is so severely bad.

Been on waiting list for spinal surgery 31 weeks now.....

nightmare reeny. I have no experience of central or femoral lines but hopefully someone will come along who has. You must be so fed up.

I've had lots of central and femoral lines,, they are more painful than normal lines to put in. Just wondering if others have got that bad severe access too.

I am a little anaemic, my Hb was 9.8 last month so not too bad.

The neuroopthamologist is embarrassingly not needed IMO. I was having episodes of losing all or part of the sight in one eye for 5-10 minutes. This has happened since my early 20's, but rarely, so I had not ever told a doctor. Last month it happened 3 times in 10 days, including on the day I saw the surgical registrar for follow up. That day it happened as I was driving, so I did mention it but may have missed out that I was driving. He then decided that I had been experiencing TIAs, so fast tracked me to a neurologist. She said that it was unlikely that it was a TIA, but that my symptoms were different to my normal migraine with aura (flashing lights in both eyes), so referred me to the neuro-opthamologist.

When my GP heard about this, she rolled her eyes, said she would have diagnosed migraine, and that this was only because of my medical history. The reason why I am slightly freaking out about the echo results that I have not been given is that the technician hinted that I have a PFO. This is found in 1 in 4 people but is implicated in migraine with aura and stroke in young people. So I keep wondering if I'm at risk of stroke. I may have to deal with warfarin periods, but I'm kind of glad that I'm on the drug because it does cut my risk of stroke.

So that is why I really want my echo results to either be given to me or my GP. Before my surgery, I had a really good cardiologist who I always felt safe with. She was a great communicator and understood my condition more than anyone else in the country, not to mention seeing me safely through two high risk pregnancies. I was really hoping to be referred back to her at my 3 month post op check. The only downside to her is that she must be in her 60's, so will probably be retiring soon.

Much to my dismay, the registrar said that the surgeon wants to keep me on her books. My surgeon is lovely, but super busy. She is in theatre all day, and is very hard to pin down. Anyway, her patients are much sicker than me, I'm basically better, so I will see a registrar. A naughty part of me wonders whether to call my cardiologist to get my test results.

I'd been waiting for the past two months for heart surgery... then finally got given a date today: for next Tuesday As I type I am combing the pre-operative decolonisation wotsit gel into my hair.

I can so relate to the getting lost in the system. NHS structures don't deal well with younger people with multiple health problems.

And I really don't know how to deal with the emotional aspects of it all. Even setting foot in a hospital give me panic attacks, and now I'm going to have to be doing it several times a year for the rest of my life. I wish I had the consolation of knowing that the surgery would help me feel better, but I've been told several times by the consultant that this is merely a 'risk management' (ie stopping-me-dropping-dead) procedure and that I will probably just need to learn to leave with this level of overwhelming fatigue. Except that I don't think I can... even though I know that others (ie poor BackPack, whom I just want to scoop up and cuddle) cope with far, far worse.

ooooh, a nice medical thread. I'm just off to bed (ill) but will add myself and pop back another time.

Have IBS or something.

So far have had a colonoscopy, endoscopy (bit too much stomach acid but nothing awful), stool samples, blood tests and antibiotics.

Next stop is a CT scan. And they're going to test for coeliac again as they can't find the first test results .

And I'm getting a scan for ovarian cancer just in case we're missing something awful.

Currently waiting to see neurologist again, have so far had two lung surgeries, bad post op infections. I have neurosarcoidosus.
Was fit and healthy a year ago, now lots of hospital appointments, but still feel in limbo land. Neuro symtoms were a lot better but then
They started reducing the steroids and bam they ve come back, respiratory consultant has but me on methotrexate until neurologist can see me.
Dp still off work as I'm still not able to care for dc's
Sorry on a ramble

Eek Reenypip I had a central line put in my neck for my surgery, after I had been given a premed injection of morphine. I thought that was traumatic, how does anyone do this without being out of it on drugs?

blimey breastmilk - this tuesday coming? I hope it goes well, what are you having done? it must be miserable having to face permanent adjustments. I hope it is the conultant being overly pessimistic and that it does help you feel better.

largeglass, this is a perfect thread for a ramble. you are another one who's life has changed so drastically in a short time. Makes me feel very grateful that once I have my op it should sort me out.

meglet, I hope they get to the bottom of it soon. not fun to be in the middle of tests while poorly.

madsometimes - I hope your echo results magically appear very soon.

kitten Yes, this tuesday. But whereas I'm terrified, I'm at least glad the waiting is coming to an end. I'll get through the next few days by control freakery and valium drinking coffee and getting organised. A friend who's a GP has also said that she thinks the consultant might be avoiding optimism in case I utterly lose it with disappointment.

Do you have any timescale for when you'll get an appointment?

Yes, I've had test results which have gone astray too.

Always worrying...

hopefully within a couple of weeks as long as things havent gone wrong, like it looked like they had before my gp reassured me that it should be ok.

have you much to get ready?

Not really. I?ll not be able to get out for 4-6 weeks after the surgery, but have lined up about 6 months worth of paperwork that can be done from home because this is a recession and others might want my --job?staying busy helps me not to get too down about things. I?ve made memory boxes for the DCs (two people I have known died after the same surgery with the same condition as mine...) and I just want to add in a letter each telling them how much I love them. Writing those letters is my task for tomorrow.

Oh I seem very piffling compared to you ladies who are going through so much. I am awaiting some biopsy results after a gastroscopy - I have inflammation in my stomach and multiple erosions (which I think are like ulcers) - no reason to suspect they will be bad but I will be very glad when I know everything is alright. Just over a week until the results.

Meglet - funnily enough while they were investigating me they did an ultrasound and found an ovarian cyst which needs watching - not because it looks dodgy, there's no mass inside it but because it is a little larger than they like. I had no idea I had it! GP and radiologist said it isn't causing the type of stomach pain though. Are you on omeprazole? I have doubled the dose now and it is definitely helping. Do PM me if you want to talk stomachs

an unmumsnet {{{hug}}} breastmilk. I hope today goes very well. Whilst it is good to prepare please try and stay as positive as you can, I know its easy to say that from the other side of the screen but there are sometimes when you have to trust that all will be ok.

daffodils - gastritis is no fun at all - very uncomfy. If you test positive for h. pylori then it should take a load off your mind I'd have thought.

have just doubled up on my omeprazole as my meds are making my tummy sore. Thank goodness it exists!

Yes it will! The antibiotics for H.Pylori sound awful though! I have to take regular anti biotics (when I have needed them in the past) in four low doses a day as the twice a day ones give me a bad stomach.
Have you taken the H.Pylori course of ABs?

I've not! - only read about it here I looked into it when dh was having tummy problems, he was diagnosed as gastritis - no known cause in the end. In the end the doubled omeprazole did the trick and he is fine now. I dont think it will be pleasant in the short term but well worth the results in the long term.

Daffs doesn't sound piffling at all. You sound in pain. One of the things which gets me though is eating pretty much what I want.

kitten Thank for the illicit hug!

How's everyone else this morning? I'm heading off to the Post Office to exchange a too-small dress for DD I bought online. Feels like embarking upon a journey up Everest but well, the sun is shining and there's a coffee shop at the destination...

Good luck in your mountain climbing Thank goodness for the coffee shop! If you are utterly knackered you could always call a taxi for getting back.

Well I am very of your sunshine because it's peeing with rain here. We are doing the obvious thing for a rainy day, going to the seaside .

Any wheelchair users on here? And what do you use it for?
I'm in a wheelchair because of my incomplete spinal cord injury and other spine problems. I have some feeling below my waist, but not full sensation.
I can use crutches to transfer.