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?

That's ace mad :) you are getting much closer to answers. I hope they all have a good attack of common sense tomorrow.

Any suggestions on how to get rid of the ring marks from the ECG? I look like I've been hugged by a dirty octopus and they won't come off. The hosp ones lasted about 2 weeks despite scrubbing and scrubbing and I don't wish to repeat that, esp as one is above t shirt neckline height. Dh has suggested Meths!

Sorry, I've never found a way of getting rid of the ring marks :( I know it's warm, but I think you might just have to put something over your t-shirt.

But if it's any consolation, I am currently utter covered in them too. The GP this morning even removed a few electrodes I'd not realised I was still glued to.

Not feeling well this evening. Don't know why really, can't work it out. But I was really struggling to do anything at all for the kids (not that I can do much anyway, with half my body out of action) and it's getting me down.

No suggestions I'm afraid. I had massive sticky plaster marks on my legs after my pacemaker insertion, from some kind of monitoring equipment - my arms had too many needles going into them . They took about a month to come off fully. You could try alcohol I suppose, isn't tomato ketchup supposed to remove every stain known to man.

You need acetone for the removal of ECG pad sticky stuff (proper nail varnish remover will do). Although obviously not near any wounds.

Keep battling on x

Splendid sagger, will try that, much better than Meths (silly dh)

BM are you running a temp? Drinking enough? Lol at finding the electrodes. It was the stickies under my boobs that I lost.

It worked splendidly well Saggars!

For sticky marks try putting on a layer of antiseptic alcohol hand gel. Leave for a while and then rub gently. Good luck!

Good advice... however, all of the nail varnish remover in the house is acetone free and I don't have any of the hand gel

But I would have needed to wait until DH was around anyway... I can't reach. I had ECG leads all over my back and shoulders and ankles and wrists as well my across my chest.

I'm about to try and get into a bath, the first since surgery. Loaded on painkillers and with my mobile to close at hand.

Feeling a bit glum and worried this afternoon, a friend picked me up to meet with another friend for lunch. Got breathless and wobbly over the short distance. What if nothing can be done? I need to get back to work, I'm on a one year contract (school) and they will be renewing contacts soon. If I don't go in after easter I'm worried I won't have a job in September. I can't bear to become unemployed again.

Oh kitten.. I'd offer you an illicit hug but I might stick to you... really can so much relate your fears of the nothingbeingabletobedone and the nonrenewalofcontracts. But honestly, you're a long, long way away from both... and so early into this that it's impossible yet to know whether or not you'll be back at work after Easter. Is there anything the school could do to make your job more manageable? Legally, they are obliged to try...

School have been brilliant, really accommodating but until I can get a handle on the going faint/breathless there's not much more they can do really. Still, you are right, it's 2 1/2 weeks away and perhaps the cardiologist will be able to sort me out. Hard not to fret.

It is really hard not to worry, when you have work to think about. Definitely raise your concerns on Friday. I'm sure once you get your treatment done, you will be back to full fitness. The question is how long you will have to wait for this.

Once you know more medically, then you can go to your manager and keep them informed. I'm sure that if the school know when you will be likely to return to work, they will be more sympathetic. They are not going to want you back until you are well.

No you are right mad, they wouldn't want me like this, I was causing more hassle than I was worth. Have you heard from your consultant after today's meeting?

No, but not surprised, because they do not have a track record of getting back promptly.

I'm feeling really embarrassed about the whole multidisciplinary case review. I wanted my echo results, but I certainly didn't want all this fuss . Writing to my GP would have pleased me, but I wasn't given any choice about it though.

Equally, though, the multidisciplinariness (is that a word?) may have minimised the fuss... otherwise, your echo results could have spent months bouncing around between departments. But such meetings always take me back to the primary school playground, and the endless amounts of preteen angst which got generated by little huddles of girls whispering together about the strange one hiding in the cloakroom...

Hope they get back to you tomorrow Mad.

Hope you are feeling better Breastmilk.

One of my staples burst out of my last night Thanks DP for knocking my head during the night so I spent the day getting patched up, There seems to be a bit of problem so I am now on Anti-Biotics. I need to go back to the hospital tomorrow for the Neuro Surgeon to check, If there is an Infection I will be kept in. I've really had enough. It hit me more when I found someone who I knew has died of this illness on Sunday :( She has been through the same as me (body rejecting shunts etc) and she has a year old little girl who has now lost her mummy.

I asked the Surgeon who I saw today if I could die from either illness and the answer was "it's not the illness that kills patients its usually the problems that come with it"
I just hope a cure is found sooner rather than later,

Hope everyone else is doing good.

:( backpack. Hang in there. All you can do at the moment is take one step at a time with the determination that you will get through this.

I'd really hoped that the newest shunt would just heal up and work... I'm sorry you've had yet more problems. Really praying you are infection-free.

I'm sorry too about the women who died. I don't think the surgeon's response was hugely constructive, either. My consultant is master of the obscure euphemism for death.

But if determination counts for anything (and all the research says it most definitely does, regardless of condition) you have every chance of getting through this.

I'm OK. Lots and increasing amounts of pain and finding not being able to cuddle DS all utterly frustrating, but I'm determined to get out of the house today. Maybe for a coffee, if nothing more original.

I've just had a discharge summary and notes through from the hospital. They go back a few months... I don't remember requesting them, but I can believe that I did.

Really tough reading. Lots I don't remember happening, saying or being told :(

I think everybody gets a discharge summary, but notes going back over months is unusual. I read my hospital notes when I was in. For the last few days of being in, I was feeling quite well, and so was bored. I found them quite interesting but was a little when I read that when I was pregnant with dd1 I said I would have an abortion if necessary. Dd1 is 11 now, and it was hard reading that. Luckily, my lovely cardiologist encouraged me forward in my pregnancy. Dd1 was a very much wanted and planned baby, but I think the risks must have just terrified me.

I still found that reading my notes was helpful because I am a control freak, evn though parts were upsetting.

My notes also record some fairly awful pregnancy-related conversations

I suspect either that I had a moment of control freakery and asked for the notes or that the consultant, knowing my control freakery, offered. His notes can be particularly because he is so meticulously detailed that my notes read almost like a transcript or screenplay... to call the discharge summary a 'summary' was something of a misnomer as it provides a blow-by-blow account of the surgery, the hospital stay and then everything everything everything which preceeded it. And I was so out of it on stress and valium that there is so much that I would normally have remembered but didn't.

Backpack I hope that your appointment today went well, and you are infection free. You have had far too much to put up with.

OYBBK All the best for tomorrow. You have had a long wait to see this cardiologist, and I really hope that he or she comes up with some answers, and a non-geological timescale for waiting for procedures.

I don't think I have ever had a Discharge Summary,

My appointment today went ok. I saw one of the DRs and he thought the infection was serious as I started to feel like I have flu. So he called the Neurosurgeon whilst he was theatre to come and give a 2nd oppinion.

The Neurosurgeon came and took one look at the wound and asked to speak to the DR outside.

When the Nuerosurgeon came back in he said he is confident there is no infection and the flu feeling is my body getting used to the new lower (normal) pressure and the fluid being able to move where it should. The Low Pressure feeling is also the normal pressure feeling, so no more energy drinks or it can cause overdraining.

I asked him if I can die off this illness or complications, I was told I have more chance of winning the lottery. I told him about what the other DR said and my Surgeon is not happy and he is going to have a chat with them and ignore the comments.

The Surgeon is also hopefull that this shunt will last a year or more as I am doing well and seem to be coping. The longer it lasts the more chance I have of going into Remission. I was told this 2 years ago so I don't hold out much hope of me being "cured" but I will see what happens.

This was the last time I will be going to that hospital as my Surgeon is going back to the normal hospital, I'm pleased I will getting treatment back in the normal one as it is much nicer and nicer nurses :)

OYBBK Hope you appointment does well for you tomorrow