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Support thread for those awaiting medical appts,tests and surgery

999 replies

ohyouBadBadkitten · 16/03/2012 18:13

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?

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RabbitsMakeBrownEggs · 12/04/2012 09:12

Hello. waves

I get sore gums all the time Bad, I tend to tell the dentist that I think it's related to my other health problems, so they go easy on me. Indeed it does seem to run in that pattern, if I get a kidney infection then my mouth also gets sore, and I have a harder time brushing and cleaning them. They seem quite sympathetic then. They also let me have locals for basic work, since it hurts so much. Being ill can definitely have a real impact on your mouth's health.

I had a day out yesterday, with a helper from the children's centre and a mobility scooter at Twycross Zoo. Can't tell you how nice it was to be there and join in with the kids, without completely overstretching myself. Although I am feeling absolutely crap today, sore, weak muscles all over, and contemplating cancelling my appointments today. Supposed to be seeing the Job Centre for disability advice and getting into work, then opening a bank account to go ahead with sorting out my debt. Got Homestart in first, so I'll see how I feel after that.

Hope you are all well today? x

Madsometimes · 12/04/2012 09:59

Hi Rabbits,
I'm glad you had a good day at the zoo. Even though you have tired yourself out today, it's still worth doing these things. We all need to have a bit of fun, but it does sound like the spoon theory is showing itself in you today.

Good luck at the hygienist today OYBBK. Are you taking your dd too? I always find that when I have the children with me in the dentist, I have to play down my own anxiety and pretend that everything is great.

Have you got your echo tomorrow? I hope it goes smoothly and if you don't get the results there and then, that they are given to you fairly quickly. Hopefully you will get your EP appointment through soon too. Although I'm feeling wobbly about my appointment on Monday, I am looking forward to finally getting my echo results.

ohyouBadBadkitten · 12/04/2012 10:34

I hope she is feeling kind today Rabbits. I'll have to tell her what medication Ive been on so hopefully she will be in a good mood (eep! Im such a wuss when it comes to teeth stuff) Lovely that you could get out but its a pity that you have to pay for it like that the next day. As mad says, I reckon it is good to get out even when the cost is high. I hope your appts go ok.

Mad, dd doesnt want to come. boo hoo! She is 12 though so I dont blame her. I have got my echo tomorrow. Last time I did get my results there and then. Hopefully it will be the same. I really hope your appointment with the EP goes ok. It will be good to know where you stand. I can understand your wobbles though.

I've got to try and find out what happened to the blood tests I had done at the hosp 2 weeks ago. Apparently the gp hasnt been sent a copy. Consultants secretary is on annual leave, back when Im planning to back to work, so we get the whole trying to get hold of her in the short break I get in the morning in a crowded staff room. She is so hard to get hold of :(

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ohyouBadBadkitten · 12/04/2012 12:55

I survived! Did think I was going to be told how terrible they were as it seemed so brutal when she was doing them but at the end she told me my teeth weren't too bad at all Shock

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RabbitsMakeBrownEggs · 12/04/2012 13:34

Glad it wasn't too bad. Did you find any bloods yet?

My dentist did a very bad face when he checked my gums, I'm booked in for two hygiene appointments and under strict rules - brushing three times a day, flossing twice and using a special mouthwash twice - even though I was fastidious with twice daily brushing and flossing. I'm just too run down, despite taking vitamins and probiotics to try and boost my immune system.

Four fillings too, I suspect that consoling myself with chocolate recently has had an effect, as I had mini-cavities which he said will only get worse. Doh!

Homestart have been excellent, told her I was going to cancel appointments and she put on a taxi for me instead, so have spoken to the job centre and had my advice from then. The disabilities advisor has said that with my health fluctuating so much at the moment, it's likely I would be on ESA, but with being on IS I have another fourteen months before that becomes necessary. In the meantime she's given me some information and put my mind at rest about how the support works for getting back into work.

Homestart also told me to pop into the council so I did that too and have started an application for a Discretionary Housing Payment, to help with my rent as I've been struggling to keep up financially with all the adjustments I need to make when I am ill. The library is in the same building so let the kids have a half hour there and spoke to someone about a bus pass, apparently I need to be getting high rate mobility DLA to qualify, so fingers crossed my claim comes back with high, because getting myself around is one of the hardest things and costs me most.

Got so much sorted (using the bare minimum of spoons, lol) and now I need to go lie down with my constant companion, the hot water bottle. Going to sleep the rest of the afternoon to try and conserve energy for tomorrow. We're at the farm with Homestart. I'm hoping I can walk around, but if not I'll take a book and make a space in the cafe while the kids get taken round.

Madsometimes · 12/04/2012 14:38

I took a trip to the library this afternoon, and there was a nurse there offering free health checks, cholesterol, bp that kind of thing. I walked past her very quickly...

ohyouBadBadkitten · 12/04/2012 14:42

No bloods - theres nobody answering. Will leave a message on consultants sec phone tomorrow. I am getting so peeved at how tricky it is to talk to someone at the hosp. Grrrrrr.

Your apts sound really positive (unlike your dentist) well done! I hope the rest helps this afternoon.

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BreastmilkDoesAFabLatte · 12/04/2012 17:59

Hi again Smile

I really should visit the dentist whilst DS is under 1 and I still get all the maternity exemptions. Strange how my phobia of doctors doesn't extend to dentists. I don't even really fear the tellings off (when I get stressed I brush my teeth ten times a day, and it apparently does show) nor the potential for pain.

My next challenge: an evening out Shock. The last time I did this was on December 16th 2010, which even back then was such a rarity that I remember the date. I'm going to watch a video at a friend's house, and the host really couldn't be more supportive but I'm terrified. Terrified that they'll know I've had the surgery and will make shite and nasty jokes about it. Terrified that they'll not know and will have a go at me for pretending to be tireder than they are. Terrified that they'll be kind and I'll not know how to respond. Terrified that I'll collapse with exhaustion.

kitten If I don't get back here beforehand, good luck for the echo tomorrow Thanks I'll be thinking of you...

ohyouBadBadkitten · 12/04/2012 18:10

I hope you have a good time! They would be really rubbish friends if they are mean or mind if you get upset.
Tell you what, if you go to the dentist for me next time then I'll go on your night out (not sure that is really a fair swap Confused )

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Madsometimes · 12/04/2012 18:29

BM Have a brilliant time tonight. No-one's going to be mean tonight. Get dressed up, go to your friends, have a glass of Wine if allowed, and enjoy an evening with no responsibilities.

If your friends are too sympathetic, and you think you are going to cringe, or cry, then gently remind them that yes, you have had a rotten time lately, but that tonight is for having fun and forgetting all about it. When you get tired, just get a cab home. You can always use your baby as an excuse, because most people with young children do get their sleep interrupted, so being tired is fairly normal.

LargeGlassofRed · 12/04/2012 20:11

Sorry I havent posted in ages, I keep reading everyone's posts but never get round to posting back.
I saw the neurologist on Tuesday and he's referred me to the royal free, which I'm glad about.
I've been really struggling with my breathing and cough so rang the gp's this morning and they couldn't get me in till next thursday!
So I thought sod it,
and went to the walk in Nhs clinic, the doctor sent me straight to a and e and told me off for leaving it so long.

So I've been admitted :( so far today I've had 2 ECG's a chest X-ray, lots of bloods including arterial gass's
They think it's pneumonia, have temp and raised infection in blood.
Just hope I'm not in too long.
Sorry once again for the moan.

LargeGlassofRed · 12/04/2012 20:12

Oh and a contrast ct to rule out clots, which it did thank goodness.

ohyouBadBadkitten · 12/04/2012 21:17

Thank goodness you did go in LGR. Do you reckon it is the same bug the dt's had? You probably got yourself run down. Have they got you on any meds yet?

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Madsometimes · 12/04/2012 21:19

Well done for going to the walk-in clinic. When you are better, I would let your GP know that that the receptionist refused you a same day appointment. Most GPs do hold back emergency slots for people who cannot wait, so it would be interesting to know if there really was no way for you to be seen for a week. I know I have said it before, but it is scary how pushy you sometimes need to be to access treatment.

Sorry you have been admitted and had to have so many tests. I had a ct scan with contrast and was a total wimp about it Blush. I hope your twins are better from their chest infections. I suppose it's not too surprising that you got sick after dealing with such poorly children.

BackPackBackPack · 12/04/2012 21:45

Good Luck with the echo tomorrow Kitten.

Sorry you been admitted to hospital LGR. Hope you feel better soon.

Enjoy your night out Breastmilk.

LargeGlassofRed · 12/04/2012 21:48

Thanks mad and kitten, yes probably same bug the dt's had but they think it's gone more bacterial because of bloods and temp.
I'm on iv and oral antibiotics so hopefully they ll kick in soon.
Dt1 still coughing but no temp so keeping a close eye on it.

LargeGlassofRed · 12/04/2012 21:49

They said also because I'm on high dose steroids and methotrixate my immunity is crap.

BackPackBackPack · 13/04/2012 00:21

hope you get better soon LGoR

I'm just waiting for a call from my Surgeon. He is away until Monday and there is apparently no other Neurosurgeons in the hospital.

I still have bad Sciatica and my GP recons he can feel a lump at the wrong side of my spine also when anyone pressures on my right side the Sciatica gets worse Confused My GP has tried to contact a surgeon and there is none apparently In my records it says I will not see my previous surgeon under no circumstances even in an Emergency I have been put on Pregabilin as that can sometimes help.

I cant move without with either my legs going from under me or getting a severe pain so I can't move much. It takes all my time to get up the stairs to go to the toilet or vomit I also vomit pretty much all of the time I smell food

Hope everyone else is doing good.

LargeGlassofRed · 13/04/2012 04:42

Oh no backpack I hope you get the call, I was on pregablin for a while it is a good painkiller.
Can they not give you something for the sickness? It must be awful being sick all the time.
I was moved to another ward at 1.30am and there is a lady with the loudest snore!

LargeGlassofRed · 13/04/2012 07:37

Sooooo Blush embarrassed just wet the bed, it's happening more often
Now but have been too embarrassed to tell the doctors.
I'm only 38 ffsake!

ohyouBadBadkitten · 13/04/2012 08:44

Those drugs would def knock your immune system down! Dont be embarrassed at wetting the bed, you arent well at all and they will be very very used to it. It would be a good time to discuss it with the docs though. Naughty snoring lady! (did you see my hospital thread about the lady with the imaginary cats all through the night?)

backpack, have you asked for any anti-emetics? Are you keeping enough down to keep your electrolytes up? (Im wondering whether things are being exacerbated by dehydration..)

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Madsometimes · 13/04/2012 09:25

I spectacularly wet myself the morning after dd2 was born. I had been on a drip all night and got up to go to the loo. Instead all this fluid flowed out of me, and I had absolutely no control or feeling at all it was just like the Little Britain sketch. Everyone on the ward just looked on in horror Blush. A physio came to see me a few hours later.

OYBBK I didn't know that you had a mad cat lady when you were in. She could have kept the lady next to me that was looking for her dog all night long company. Good luck for today. Hopefully you will get your blood results today, along with your echo.

Backpack All the best. I hope your GP gets hold of someone soon, even if it means going to another hospital. Perhaps your surgeon will be back on Monday, because most schools are back next week, and maybe he is tied to school holidays .

Rabbits, have a great time at the zoo today .

BM I hope you enjoyed your much needed and deserved evening out .

BreastmilkDoesAFabLatte · 13/04/2012 09:35

My goodness... I go out for an evening and everyone else is Shock

LGR Honestly, none of the nursing staff will bat and eyelid at your wet bed... as kitten says, they're used to sick people and don't tend to judge according to age. (When I was in hospital when DS was very little, he pooed all over my bed and the nurses kept telling me that I shouldn't be ashamed to admit it though I did point out that I'd moved on from the yellow baby poo stage myself soon after my mum stopped breastfeeding me--) But I hope that you get better and home soon. I agree with mad, it's worrying that you couldn't get a GP appointment.

BackPack :( :( Can you just lie as still as possible... it would be awful if you fell again and knocked the shunt. It sounds as though you neeeeed a surgeon before Monday if at all possible. Beyond yours who is on leave and the one you don't want to see, there must be another option, even though it'd probably involve more travel. Has the pregablin kicked in yet?

BreastmilkDoesAFabLatte · 13/04/2012 09:40

Oh and yes, the night out went well... I feel silly, now, for being so nervous. Kind, friendly but not over-concerned people, fantastic film and a lovely glass of wine.

And this is the 500th post on this thread :)

Really, I cannot find words to express how much this thread has meant to me. You all supported me so fantastically through the surgery and reassured me that I'm not alone in my fears and showed me that I'm not the only one who seems to have to endlessly coordinate medical systems and be a bit over-pushy for the treatment I need.

And Flowers especially to kitten for starting this thread. I hope today provides either the reassurance that your heart is structurally alright, or straightforward answers to some of your symptoms.

ohyouBadBadkitten · 13/04/2012 10:13

:) thank you. What a lovely 500th post! I'm glad you had a lovely evening :)

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