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?

OYBBK - I also feel as if I am dragging myself through each day. Just trying to get to the end of term as I work much less in the school holidays. Hope you hear something about your job soon. It is a stressful time. What about a phone call to the secretaries or departments for the tests? Even if they can give you a vague idea it would be better than knowing nothing.

I will keep you company with being emotionally wobbly especially about going to work! I really should go to bed!

hope it goes well today gingerwine :)

I'm not quite sure who to call about the tests - would it be the referring consultants secretary? I'm working extra today (not through my choice) but I could do it tomorrow.

Hi everyone
I'm feeling quite good at the moment, just waiting for the ablation call now. The electrical cardiologist had said late June, but realistically it's going to be July. That's fine

Ginger, I hope you have a good day at work today. I'm sure all your colleagues will be delighted to see you back and well hopefully you will be plied with tea and biscuits. Amazing that you can do this so quickly after the rough time that you have had.

OYBBK, the referring consultant's secretary would be the best person to ask about the timetable for your tests. She will at least know if the test requests have been sent, and where they have gone to. Then, if necessary, you can chase further, but hopefully you will not need to. I'm sorry that you are struggling so much at the moment. I know that there's little you can do about waiting for appointments, but your work are being very naughty not telling you about your contract. It's the last thing that you need.

Pavlov, how are you feeling this morning? I hope you got through your dh's birthday celebrations, even if you did need the help of major painkillers to do so. Great news about your dd's fracture anyway. Is your dh being more supportive now?

Hope everyone else is fine too. How did the test go yesterday, Mharhi?

Backpack, I'm so pleased that your new surgeon is working out well for you, even if you do need to travel 2 hours to see him. Sometimes it's worth travelling for the right doctor or treatment, although it will become a pita as you get bigger. A neurosurgeon with an interest in managing pregnancy sounds just about perfect. Amazing the difference of opinions that your two surgeons had. Perhaps the previous surgeon didn't feel confident managing a pregnancy, but he should have referred you for a second opinion. I'm pleased that your GP did that instead.

ginger enjoy your feet and nail treatment. I really could do with some of that. You need to spoil yourself once in a while, especially when things have been ultra tough. Good luck tomorrow.

I feel much better. Have slept most of the afternoon and feel quite groggy. Slept for some of yesterday but tried to stay awake for DH, got up in the evening and had a naughty glass of wine with him to celebrate his birthday, he was waiting for me to fall asleep! The drugs are helping but wiping me out.

I can walk 'ok', there is some pain in my very lower back, and sciatic pain in my right leg, but not crying out pain, and I can walking almost straight, for much longer than I could yesterday, but I am careful, and I have this vague fraudulent feeling now, like its not that bad after all. Then I remember that I am tanked up on drugs and that should I not be taking them, I may be feeling very different. I have moved around the house and not done much, other than make a drink, and just stand and chat do DH while he sorted the kitchen out. I am so worried about it going backwards again.

However DH now thinks that because I am now mobile, I can go wondering around a reclamation yard, after sitting in the car for 30 mins, so we can look for some things for the house [shock[ i put him straight on that one. But, I do have to drive DH to work then take the children to school and nursery tomorrow, as he starts at 9am (does not normally do so, he usually does the school run outward bound), and then I have to pick them up and collect him from work again, so, I might walk to the shops (5 min walk, prob take me longer) and see how that goes, as if I can manage that I will be ok, but if not, he will have to call his work and arrange to go in later and do the school run and I will have to sort out someone to collect them. I think, if I am drugged to the eyeballs I will manage it though, come home and straight to bed.

Life goes on though doesn't it, and we cannot just stop the things we have to do, but find ways to manage them. I think this is what I am finding the hardest, I just want to go to bed, and wake up when it is all better, and that cannot happen.

I know in a couple more days I will mostly mobile again and can reduce my drug levels significantly, but the fact that it can, and will happen again for absolutely no reason makes me so scared.

The kids re really affected by it, they are playing up for daddy, scared to know whether to hug me, DD is older ad is looking after me a bit and I don't want her to, I want to be there for her. And DS is afraid if hurting me now . he is only 2.5. But this afternoon they will come hom from nursery and as I am feeling much better they are going to get HUGE hugs even if it hurts a bit.

pavlov - having to keep going is one of the hardest aspects, but you must still do your best to take care of yourself.

Mad - that sounds like a good plan. I tried her just now but she finishes at 4pm, so I'll try tomorrow. If your house is anything like ours at this time of year it'll be July before you know it!

the tilt table test waiting list is 6 months!! Which is bloody outrageous! I am so fed up of scraping through struggling with faintness and tiredness. Also found out that because of the bank holidays and holidays that the consultant and sec. had ( which is fair enough, they are allowed holidays!) the referral letters probably didn't go out until this week.
I've phoned the tilt table chaps secretary and let them know that I'm available for cancellations.
I can't believe that I just need to keep going on and on like this feeling rubbish :(

Oh, one amusing thing. Tilt table test seems to come under elderly care?!?

OYBBK and

You have been messed about far too much. I'm glad that you have asked for a cancellation, but I also think an email to your new cardiologist could be in order. Just tell him how unwell you are feeling, and if necessary explain about how this is affecting your chances of having your contract renewed at work. I bet your cardiologist had no idea of the six month wait. 18 weeks is supposed to be the maximum, and that is far too long.. Have you got another appointment scheduled with him, or is he waiting until all your test results are through?

What about the TOE? Is the wait for that less? I know that when I had it, the wait was only 2-3 weeks the hospital I'm seen at. Just a thought but could your GP see if other hospitals have a shorter wait for tests, or do you think your cardiologist only wants them done at the hospital that he's based at? I understand that both TOE and tilt tests need a cardiologist, so I do understand why they have a long wait, but even so your patience is being tested too much.

Six months?? My goodness kitten, you have been waiting so long already.

I had the tilt table test done as an inpatient with less than a day waiting... I'd been admitted somewhat against my will one afternoon last year when I was feeling particularly dizzy and ill. Given the amount of time you've been waiting, and given how rubbish you really do feel, I think it'd be fair and appropriate just to go to A&E the next time you feel especially bad... whereas they may or may not admit you and may or may not be able to do anything on the spot, the ECG may show something of significance which may aid diagnosis and/or bump you up the queue.

Hi again. I think I'm feeling a bit better. Still getting pains and still exhausted, but finally seeming to manage with work and the kids. And I took DS for his next set of jabs today, and even managed to stay calm in the waiting room. That's progress...

Mad, apparently the cardio is aware of the wait. The sec said that when I pointed out that he wanted to see me in two months. He did say at the appointment that there was no point in seeing him until after the tests but she implied that this wouldn't be the case. The TOE she said should be within the month or 6 weeks.

When you think that it was jan that I was admitted to hospital and theyve still not got a diagnosis, never mind treatment, something is not right. I'm not sure how to proceed. I think that I might go and see a gp and ask what them to be my advocate. Only of course I don't bloody have a gp at the moment, so I'll just have to see a random one from the surgery. The hospital don't give out email addresses of consultants. I could see if googles has it. It all feels so impossible.

If I do get a particularly bad day then perhaps I ought to go to a&e. Mostly though when I sit down I feel ok so it's hard to justify.

OYBBK, totally crap
I can understand the hospital not giving out direct email addresses of consultants, but surely their secretaries should have a departmental email. Having said that, my GP surgery does not have an email for patients to communicate with GPs, but you can send a fax or a snail mail.

What has happened to your lovely GP that chases things to great effect? Has she left?

I would definitely make sure that you see the cardiologist again in two months. Have you secured an appointment date? Hopefully you will have had the TOE by then, which should have determined if you have a hole. Sod the tilt test, if they can't do it in a reasonable timeframe, it's not your fault.

You are right. Six months and still no diagnoss is quite shocking.

BM, great news that you are feeling a little better. I'm so pleased that you are back at work, and able to look after your dc . I know you're not 100% there, but so much better than a few short weeks ago.

My lovely gp has gone on extended leave. When she comes back she won't have a named patient list. Seems rather strange to me.
I've not secured a date with the cardiologist. They seem to give them out about two weeks in advance. So, no booking any form of summer holiday until last minute I think. I agree on the tilt test. It's ridiculous. I've given in and ordered some compression stockings to see if they help.

The more I think about it, the more :( I am. It's not fair.

Hi again- well had the CT enteroclysis what a traumatic experience. Had a tube put down using X-ray, through the nose to the small bowel, using a sort of wire through the tube. But when all set up in the CT scanner, the docs can't put in the cannula as I was dehydrated from not drinking, they tried lots though so am all bruised and battered. Finally they had to do the scan without the intravenous contrast just the gastrogaffin stuff into the small bowel- when it was over they left me in the machine and went off to look at it to see if it had turned out OK! I was lying there thinking, well the light's off now so it must have stopped and I'm not going to do it again if it's not clear because of the radiation! I did get a cup of tea after and was a bit shaky but the lady radiologist who helped me was nice and saying things like, I can tell it hurts you're doing great, it made a difference. I wish I'd asked about the result though, I just kind of staggered home, been trying to ring the surgeon and meant to get all call back today. I don't want to just turn up for the op next week not knowing what's going to happen first. I hear you mention the secretaries can be useful about test results, maybe I'll try ring and ask her. It's hard isn't it, I don't want to always seem like checking things but it's good to be aware too.

For the op I have to turn up at 7.30am next Tues. Am hoping there'll be beds- I was supposed oto have this a few weeks ago and when I got there all was ready but no beds free. later, beds but no theatre slot. Argh! This time I think a bit more planned though, I notice I have to go to the pre-assessment place rather than SAU which is good at the SAU I find hectic and stressful. like a kind of casualty extension.

Think we all deserve a glass of wine with our painkillers! I have a strange dream where there's nothing wrong when they do the op and everyone thinks I've been making it up and are cross with me for getting in was of another op. Don't know what that's about. Finding it a but hard with DH, think he thinks I'm self-absorbed (probably am but not usually like this) whereas I just want to be alone- in a wierd way it's quite nice to be on a restricted diet just things like soup and milkshake, quite easy, can justgive the children something easy and he can cook himself something quick (probably why grumpy)

Anyway I've waffled on but wishing you all well.

well done for getting through it :) it does help when you have someone kind.
So now, you need to rest lots and take good care of yourself in prep for next week. I hope it all goes ahead for you this time round, you must be feeling very tense.

mhari what a horrible experience, well done for getting through it and thank god you did not need it done again, good luck for next week.

I am on another self absorbed threat about lumbar stuff, and I posted a post about meds which you lovely lot might know about. who prescribes your meds for your specific conditions? if the Gp how do they know what meds to give for what? my gp gives me the standard pain releif and I am hearing lots of other meds might be more beneficial/help with specific pain and I am wondering how on earth my GP would even know/consider these/whether he would if I don't mention them/what else I am missing as he told me once you can't slip a disc coughing! how would he know to try amytriptiline for nerve pain etc. my osteo cannot medicate, it seems unecessarily complicated to not just have one person who can deal with all aspects of my back issue, diagnose, guide through exercises, pain releif etc.

Had to come home early due to the going faint not going away. Was very rubbish. Then found out TOE isn't til 3rd aug.
Going to phone gp and consultants sec later and do some badgering.

Hi,
OYBBK - a year?????? That's utterly ridiculous. Definitely go and see a GP. If your favourite one is away maybe it would good to get to know another well anyway. I don't suppose the 18 week wait covers investigations but all the same can't help thinking it's the sort of story that you would read in local paper or something. At least the TOE should be done sooner. If I were you I would ring the cardiology secretary and let her know as soon as you get your TOE date, so she is aware. It obviously makes sense for you to have had at least one of your investigations before you next see him, and it does take a while for results to filter through in my experience.

Mharhi - that sounds pretty horrid. Well done for getting through it. Now you can concentrate on getting prepared for next week. I had a sort of nesting experience before mine as I really wanted to come home to a fairly clean and tidy house so I wouldn't be annoyed by piles of ironing I couldn't do etc...

Pavlov - your GP should have a pretty comprehensive knowledge of different painkillers. To be honest the most sensible advice I have had about medication has come from my GP. My neurologist seemed more interested in links between hole in the heart, migraine and stroke than in my actual symptoms! I take amitriptyline for nerve pain and also for migraine prevention. (initially my symptoms were thought to be due to severe migraine). In fact it was my GP who started the amitriptyline as neither of us could get hold of my neurologist. We talked through all the different options and both felt it was the most sensible choice. It did stop my headaches and i feel less migrainey but I do still get some nerve pain and we have discussed changing to pregabalin or something. I have been too scared to try as it took me a long time to get used to the amitriptyline and I don't want to go through 6 weeks of feeling really awful again. Perhaps once I am fully over my op I will feel more brave!

I had a busy day yesterday. Went to GP to get my fitness to work note and decided to mention the odd sharp pains between my shoulders and left side of my breast bone I have had for a few days. If I hadn't just had my op I would have thought it was muscular but I'm pretty sure it isn't. It was a different GP , young keen and very enthusiastic - she must be new. Anyway she sent me for an ECG and faxed a letter to my cardiologist yesterday. Cardiology secretary has rung to say she will get the Consultant to look at it today. All very pro active! I was amazed. Then I had my orthotics appointment which was fine, and to finish my hair and nails are looking lovely. Having a slightly quieter day today. Work was ok, only did paperwork and am very part time still but it might make me feel more normal I suppose.

to everyone else.

Cross posts OYBBK, sorry you're not feeling good again. Go for it, make those calls! Good luck.

Some slightly better news, phoned the consultants sec. Date for consultant appt is set for 10 days after the TOE :) so at least I know where I stand. She said if I get the TOE pulled forward to let her know and she'll try and pull the consultants appt earlier too.

Gp appt on Tuesday. Not one I've seen before but that's ok.

Feeling much less faint too than when I came home, which is splendid! And dh and I have decided to book a holiday for after the consultant appt for something to look forward to. No idea what though - normally we go hiking and camping in mountains. Don't think that is a terribly good idea this year! But I'm not a beach person either. Fancy something lovely and warm with interesting animals.

That sounds much better. You have a plan and can sort a well deserved holiday.
Must be the day for good news as consultants secretary has just called and they want to see me on Monday. I think that's good although as I'm typing I'm now worried that they are worried!! I guess as they have intervened and my symptoms are new they need to be sure it is not a complication. I will try and stay calm!

oybbk horrible for you to feel like this, esp when trying to get on with work and not being able to. A holiday sounds a good idea. I personally like a beach holiday, but not sitting on the beach sunbathing, rather, kayaking, bodyboarding, rockpooling...all the things I can't do right now either! I hope you can find something to inspire you that is safe to do.

ginger my GP is so not pro-active! he is the opposite. It is like he wants anything for an easy life. Although, he did happily prescribe me drugs when puking throughout pregnancy so maybe he will surprise me i doubt it. My nurse friend has suggsted amytripiline for nerve pain and has been mentioned on another thread, so I might talk to him about that. Also, not enjoying the side effects of codeine, which includes headaches and blockages. I want to talk about tramadol for the acute periods. I am aware it will floor me but so does 60mg of codeine which I take at this type of time. I want to talk about options that can help sustain a normal life while keeping my pain at bay., as we all do eh?! I will go back asap to discuss. Once my fuzzy brain can locate my dead phone...and charger...

ginger that is quick! funny isn't it that it is normally so slow we presume the worst when they are efficient, rather than that they are, well efficient! Keeping my fingers crossed it is just coincidental and nothing to worry about, but definitely best get it all ruled out right now.

OYBBK, so pleased that you have secured a TOE date, and a follow up with the consultant. I know it's not as soon as you would have liked, but better than not knowing the date. A holiday somewhere interesting sounds like a lovely thing to do, and to look forward to after all the horribleness that you have put up with recently.

Ginger, good luck for Monday. Try and enjoy your weekend, and keep busy, easier said than done I know! Mhari, all the best for you for Tuesday. I shall be crossing my fingers for you. I'm sorry that your CT scan was was so horrible, but it is nice to know that the radiographer was kind and thoughtful. Pavlov, Ginger is right that your GP is the best person to advise on pain relief. If you do not click with him, are there any other GPs that you can see?

Ginger - it is good to be seen so soon, try not to worry about it. They are probably just being safe.

So where should I go on holiday.
Kind of thinking I'd like to go to Yellowstone park. It is warm, it has cool stuff to see and it has bears. It shouldnt involve too much hiking. It also has good hospitals (I guess!) I might propose it tonight at dinner and watch dh go pale!

It would be lovely to be on holiday- hey a holiday while waiting for results etc would be good distraction, find it can be a bit hard when looking after the children when distracted, the patience.. thank you for kind remarks and my feelings are with you giong through these things.

Pavlov just a thought would you be able to get referred to a Pain Clinic? I think there is one in the hospital perhaps maybe that would be helpful if he is not very proactive.

Have been trying to get CT scan results today no-one will give it to me although it's been done- rang the secretary and the radiographers, am worried am like a nightmare patient! Wishing I'd asked more on Monday but think they need to go through it first so probably would have been too soon.

It's not knowing that's hard. I find at the hospital, sometimes they can be a bit well not so understanding about you wanting to know stuff, like you should just turn up and not ask but be told, a bit sort of old-fashioned. It would be good to be involved- I know they're the 'experts' but with some things the more you know and feel involved in the decisions can be empowering in a way.