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?

HI.

I know I was going to leave MN but I need support at the moment. So I need MN and people on this thread :)

Well today I was called into the hospital (I had high pressure symptoms) I was sent in the original hospital, I was full of anxiety and quite upset but I agreed to go in as I was so ill with vomiting most times I turned my head alongside the sore neck and headaches.

I went in and I had 3 attempted at LP's, the last attempt was so close to getting the spot, but I jumped with pain and the needle shot out :( so I could very nearly say I had a LP under Local anesthetic only but unfortunelty can't :( So as I needed a LP done I had to get it done under Xray. The opening pressure was 30 (normal 14) I got the fluid drained to 14 it shot back up then I got it drained again (this went on for nearly 30mins) the closing pressure was 29, the DR ended up with 5 bottles of CSF and a lot on the bed.
Afterwards I was told to lie flat for 6hours this was at 5:20pm
A surgeon came to see me and he explained my options to me and I have to think about them and go and see him in 8ish weeks. I'm currently feeling just the same as the pressure was pretty much the same :(

I've read the RNIB site and I'm getting some papers sent to me explaining sight loss etc. The original surgeon is going to rush counseling through for me (I'm under "his" care again as I had the choice of staying the way I am or going to see him)

I hope all is good. I'm just going to catch up on the posts that I have missed. It seems like a lot.

I ended up lying flat for 90mins as I couldn't take no more lying flat and watching DP and DD drinking and eating.

I know I have said I hate this hospital but when you are desperate for treatment you take it from anywhere, luckily/unluckily (I've not decided which one yet) my original surgeon is a specialist in both Illness's.

Kitten Thank you for recommending the RNIB even though I knew about them I never thought about signing up to them.

Mad I posted on the RNIB forum but I burst into tears when this man who is losing his sight messaged me :( its so unfair why do people go blind? I'm getting information sent out to me and there is a group ran by RNIB near me which I'm willing to attend when I'm strong enough, I need to be strong now but I'm just think of blind people and cry :( what use will I be at the group?

Breastmilk I'm wanting to start a thread asking for people but I'm just not strong enough and everytime I start to make a new thread I can't go through with it. I know I'm being silly but its so hard, I can cope with the pain the LP's, the surgeries but not make a thread.

slipperandpjsmum Hi and welcome to the thread :)

there is loads more posts to catch up on but my vision is getting bad so I will carry on reading tomorrow. :)

Have given in and requested an assessment from Adult social services team. Maybe they can help me. I hope it's not horrid like last time, care company was shite and then they stopped the help in a quite aggressive manner causing me to full on panic.

Great big (gentle) hugs to everyone. The weather is bloody killing me.

Hi Backpack, it's good to see you back here. Sorry to hear the LP went so badly, if anyone told me I needed a LP I would totally freak out, so your reaction ounds perfectly normal. It's awful that you need them so often.

The weather is doing me in too.

I'm also being done in by dd1's behaviour. She flies off the handle at the slightest thing. Last night she spat in my face because she couldn't get her phone to work. She was due to have a sleepover at a friend's house tonight, but I have said no, because actions must have consequences. She is still going for tea, because it is not fair to punish her friend. Last night she screamed for one hour, and got so frenzied that she started hallucinating. I thought at one point that I would need to call an ambulance for a mental health assessment. Luckily she calmed down in the end. Obviously this happened when dh was out.

I suppose no-one ever said being a parent was easy.

Backpack, if you go to the group and all you do is cry, that is absolutely fine. It is perfectly ok to be the one needing all the support as you adjust. In time you will be able to repay by offering your own support. The lp fiasco sounds like a nightmare. I'm so sorry they didn't help.

Well done rabbits. At the outset, tell them that your big concern is that they don't suddenly stop your treatment without a proper wind down and care plan. Remind them what happened last time. Then part way through remind them again.

Mad :( it sounds like you had a horrendous evening last night - you must have been at your wits end. If its any consolation dd just burst into tears because I talked to her for too long

Dd went on an outdoors school trip today, and felt quite unwell (nauseous) on the coach. She has come home, and is wrapped up in a fluffy dressing gown, with a bowl by her side. Another girl was actually sick, so we may be about to be a vomiting house. She doesn't have a fever, but at least it puts her behaviour last night into context.

I hope her friend isn't too disappointed. I will have her over for tea next week, so that should placate them both.

Ahhhh, so she could have been coming down with something. Poor kiddo. There seems to be loads about at the moment. I hope she makes a rapid recovery (and doesn't share)

It's gone all quiet here. Is that a good sign? Are people out doing real life weekend activities? Or hiding?

I finally made it back into work as in, in person rather than via email. So tired. So, so tired. But I did it.

Well done for getting into work. I know tiredness very well, but hopefully you will get into the swing of things. Try to negotiate working part of your hours from home, if at all possible.

I've had a super quiet weekend, apart from taking dd1 swimming on her own this evening. I thought we could do with some one on one time doing something enjoyable, rather than the confrontations that we have had lately.

I got yet another appointment through the post yesterday . Yes I am the reason that the NHS is crumblimg I'm not quite sure what it is for, but I think it is to see my usual cardiologist, which is one that I requested because she calms me down. Unfortunately, it is late June which is about the time of my catheter ablation, so I will need calming down before this. I think that is where this thread comes in because I am not feeling very calm about it at all.

Oh well done BM :) do pace yourself though.

Mad, funny, apts must be like buses, none come for ages then they all come. We will be here for you whenever you need us.

I phoned the consultants sec, to find she was on annual leave, so Ill try again tomorrow. This weekend I've taken care to rest lots and have been able to admire the weather models. Not looking forward to work tomorrow though. Busy day.

backpack sorry it all sounds so shit. LP sounded a nightmare. Glad the RNIB are proving to be supportive.

breastmilk hello. I was out lastnight, was good fun {hungover] well done for making it in to work

I had my appt on Friday. Lung function down from 71% to 56% - not good. Got bloods taken. Been reffered for lung ct scan and allergy skin prick tests. bloods for every possible test on the form plus anca and ana whatever they are!!

Hope you all have a good week :)

Dd1 was sent home from school today because she nearly fainted. It was during a whole school photo, so she had been standing up for quite a while. Luckily the school nurse was there, so she was observed well. The nurse said that her pulse dropped to 50, and that she appeared vacant and clammy for 30 minutes. She recommended taking her to the doctor today, so we are off to the GP this afternoon. She is wrapped up in a duvet and seems fine now. She's annoyed because she hasn't missed a school day since September, and wanted us to refuse to collect her. I had to explain that school doesn't work like that.

I think fainting is not that abnormal for teen and pre-teen girls. I remember fainting during assembly at a similar age. However, dh says that I cannot use myself as a model of good health .

Mad, whilst fainting isnt uncommon, I think it is very sensible to get your dd checked out. i hope the appt goes well.

giraffes, thats a bit poo! Hopefully the tests will come up with something nice and simple that you can eliminate.

Been a bit round in circles today. Phoned the new consultants sec. She was quite easy to talk to. Said I was on the system for a routine appt but couldnt say when it would be. put me through to appts who said yes I was on the system but not dates and no wait times available. So (after multiple trying to get back through switchboard) back to the consultants sec, who said it would be about 6 weeks. i asked her if that was 6 weeks from my referral that was a month ago or 6 weeks from now. She couldnt tell me. She said urgents were within 6 weeks and routines after 6 weeks.

so, good job I'm feeling well really, but we are supposed to be going away in June, and I dont know whether to book it or not.

I have done a chat thread, and there do appear to be quite a lot of fainters about. Dd1 does have low bp. I feel a bit of a fraud demanding an emergency GP appointment, but I suppose the school nurse did recommend it.

OYBBK I do not think that you should hold back from going away on the off chance that you get a hospital appointment. Personally, I would book a UK break, but if you can get insurance, then the world is yours.

Mad I'm sorry you're having such a rough time of it with DD1 at the moment. I don't think you were OTT getting an emergency appointment.

kitten I agree... honestly, do not not not cancel or postpone your holiday. The chances of the appointment being scheduled for whilst you're away is miniscule... and if it happens, you will be able to ring and rearrange the appointment. I think you need the holiday as much as the appointment. I'm sorry you're still getting the run-around.

Talking of which, tomorrow is 6 weeks since my surgery. I was told when I was discharged that I would be given an outpatient followup for 'around 4-5 weeks but definitely within 6 weeks'. I haven't received an appointment, and I somehow doubt that unless I chase it I will. I would not be exaggerating to state that every single one of the 'follow-ups' I've had with cardiology in the last three years has been either lost in the system or delayed. And this time I'm tempted just to let it go. I mentioned it to the GP and she said she coudn't see any reason why it couldn't wait another six months or so.

Dd1 has low bp (90/60), so that is probably why she fainted, in combination with her age, growth and hormones. The doctor said that her heart sounds fine, and given that she has annual cardiology checks, she is happy that all is well.

Breastmilk, I'm sorry but I think you need to chase your follow up. You are clearly lost in the system, and if you haven't been sent an appointment now, you will not get one in 6 months either.

You're right. But I just feel as though... well, how the am I going to manage doing all this chasing every few months for the rest of my life? This is the fifth time in three years that I have been told of the need for 'essential' follow-up only to discover either that I'm no longer on the database or that my notes or test results have been lost. I'm tired of always having to do the chasing. Sorry to swear, but I just cannot handle it. And when there were several mix-ups about the date of my surgery and associated prior appointments (which wasn't even one of those five occasions) I emailed PALS for help, and ended up with an angry phone call from the cardiology manager. I am well aware that I am handling it all very badly indeed. But I resent being treated as though it's all my fault for having too rare an illness at too young an age, and that it's all too distressing for the hospital staff to cope with...

That must be a relief Mad. She does have low blood pressure though!

BM, I agree with Mad. Im really sorry, but once again you must chase. I am sorry that it is so hard.

She was quite stressed at the doctors, so goodness knows what her bp is normally. The GP did say that children's bp cannot be compared directly with adults. She also said that if dd1 hadn't sat down when she did, she would have fainted. Given that she was standing on a raised platform at the time, that could have been a domino effect disaster.

She's fine now, and looking forward to school tomorrow but very about the situation. In the photo, she is sitting with the teachers, instead of her class, and is the only child doing this. She is very annoyed that of 500 plus children, she is the only one out of place.

In her situation, I'd probably have been . But as her friends all start to hit puberty, many of them will faint at school too. Maybe there's the street cred in having been the first.

I'm sorry about my slightly teenage strop earlier. Yes I will chase the appointment.

In her situation, I'd probably have been . But as her friends all start to hit puberty, many of them will faint at school too. Maybe there's the street cred in having been the first.

I'm sorry about my slightly teenage strop earlier. Yes I will chase the appointment.

I have just chased my TOE appointment. The whole procedure sounds completely horrid, and should take place in the next 3-4 weeks. I was secretly hoping for a 3 year delay.

I have also checked that dd1 is on the paediatric cardiologists list, and she is for August.

Now I have faced some of my demons....

I had my sigmoidoscope this morning. They found a polyp which has been sent away for testing. I had hoped I would find out what was going on today, instead I am waiting again and I feel really down about it all now.

oh cripes Mad - well best to get it over and done with I suppose.

Slipper, it will probably be ok, almost all polyps are. Do you know how long you need to wait?