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 cant take ibruprofen or any other NSAiD until i know for sure that my kidney function is working ok as they can impair kidney function, and if function already not good, can make it worse! And I have been eating them by the bucket load since xmas (although not recently, hardly take any painkillers/anti-imflammatories as they are making me feel/behave horribly in terms of moods). I need to speak to GP, but cannot as its now the weekend, and the reason I know is because I have increased back pain, need to take some anti-imflammatories, and happened to read the dosage of DDs ibuprofen as she is unwell (does is different for supermarket own brand to branded names it seems), and it has a warning, so obviously I googled.

Could I have caused my kidneys to mess up and that is why the osteo seemed to think I should be in some kind of pain? Gp said no concerns because bloods were fine last year, but I did not eat millions of NSAIDs then...

Now, I am worrying. I know its probably all absolutely fine. But I also read that tehnically a kidney fusion is still two kidneys. And also that if one kidney is working well it will compensate for the badly working kidney and bloods would show normal kidney function (but that is based on two kidneys and I don't know if I have one or two!).

Sorry ladies. You gonna be sick of me soon.

I hope everyone is having an ok weekend start and there is not too much pain to be had on this thread. Wishing you all positive painfree vibes x

I won't get sick of you Pavlov. And thanks for the painfree vibes... I've been in a lot, lot less pain the past few days.

I have also arranged a first birthday party for DS next week. It was initially planned to be a very gentle, simple, low-key cake cutting with a few quiet friends: we now have 30 children coming , plus all their mums, plus Kolin the Klown doing balloon sculpting with a ukelele. I have obviously now completely and thoroughly lost the plot.

How's everyone else?

thats insane! hope it goes well!

DD has just broken her arm. She is 6 next month. She is in a LOT of pain . my back/kidney stuff is on the backburner for now, its just going to have to sort itself out as I am needed elsewhere.

Sorry to hear about your dd, Pavlov. That's not a nice thing to happen in half term for her and you. I think lots of cake always helps broken arms, or maybe ice cream. I hope her pain is control is improving, poor little Pavlov dd.

Sorry to hear about your DD pavlov.

Hope you see the consultant sooner then 14 weeks BM.

I'm doing OK at the moment. I'm back at the hospital on Friday to see about another LP. I never had one last week as my pain was not to bad, its still the same now ~(if not better) so I don't know if I will get another LP yet.
As it takes nearly 2 hours on a train to get to my Surgeon I'm going to ask him if it will be OK to do phone call appointment unless I need to come in as the morning sickness has started and mostly everything makes me feel sick.

Hope everyone else id doing OK.

I have been feeling really quite jittery about not knowing when my ablation is going to be . To make things worse, I just got a call from the hospital offering me a date, June 22nd. I had to turn it down, because my dh is away on a holiday, and there would be no-one at home to care for me, plus I would have the children to look after. Also, my period is due on June 20th, so I would have declined the date anyway. I thought I would be offered another date, but the person just said that he would call me back at another time.

Sorry to moan, but I'm fed up. I don't want to be waiting for appointments, and if I have to wait, then I want to know when they will be. I really just want all this to be over, and by this I don't just mean the ablation, even though that is what I mean. I can't put it into words, except that to say that I discovered in late June 2011 that I needed surgery, that happened 5 months later, and now nearly 7 months after that I'm still not quite right, and I want to be. I'm also scared.

And breathe...

After my moan, I want to say that Backpack I'm really pleased that your pain is manageable. Morning sickness is horrid, so you have my sympathy there.

BM, I'm glad that you are feeling a little better too. Good luck with the birthday party, Kolin the clown and his ukulele sounds brilliant. You don't often hear ukuleles now. I would say don't overdo it, but the party you have planned will exhaust anyone, so just go with it.

I hope everyone else is having a good half term. OYBBK, hopefully some test appointments will start coming through this or next week. Ginger, are you back to work soon? Good luck if you are. Hello everyone else I haven't mentioned.

Hello! I haven't been on here much recently, things are difficult managing the severe pain, symptoms from chronic health conditions and my active 13 month old toddler.
On a positive My boy has his picture in the mother and baby magazine July issue :-) on the funny picture page.

Not sure if I'll be back on before my op, I go in 13 days then it's the day after.

I know it's super difficult being a mum with health problems, so many challenges, ups and downs. Stay as strong as possible, keep smiling :-)
And if you need a cry, have a cry x x x x x x x x x

Mad I'm so sorry... you've been just phenomenally patient and philosophical about all this waiting for so long. I don't blame you for being upset. If I was child-free and illness-free I'd offer to come and stay to make the date possible. I hope they offer you another one soon. And that, more to the point, the ablation sorts your heart out so that you're no longer living with all this waiting and uncertainty and fear.

Pavlov How's your DD? How did she break her arm?

Reeny I'll have to have a look and try to guess which one he is

I'm all ready for DS's birthday tomorrow... all clutter relegated to spare room upstairs and cake iced. I'd wrapped all his presents before I went into hospital in case I died and just want to spoil him because he's had less of me than he should have this year, even though DH is a fantastic dad and our childminder is great. DS is a lovely, lovely little boy, really peaceful and contented and gentle... I keep looking at him and wondering, how did someone as neurotic and stressy as me produce a child so calm? And tonight I'm, just sitting here feeling very fortunate that I've had the support around me to be able to have had another despite feeling so ill.

How are things with your DP now?

BM, I would have declined the date because of my period anyway, but thanks for the hypothetical offer .

I did the same thing with presents at Christmas, for the same reasons . I was so organised, doing my Christmas shopping in October and early November. I remember filling up my basket with toys and stationery in October, and the shop assistant asking if I was planning party, and being amazed that it was Christmas shopping. I never did get around to writing cards though, so not one got sent. Dh had far too much on his plate to do them. It was strange going into hospital at the end of November, and coming home in December to a house fully decorated for Christmas. Dh even got the children to do handmade decorations, bless him. Our partners mostly do a wonderful job in difficult circumstances.

Have a wonderful time at ds's party tomorrow. I hope the weather is good for you all.

I think I'm now as tired as I was the evening after giving birth.

A fantastic day, though. Thanks.

Hello can I join you? I've been reading a bit.. it's stressful isn't it the waiting, I'm finding it tricky trying to entertain the children over the half term while awaiting an op at the local hospital. It's quite urgent, sort of, but it's so hectic there and they always seem in a flap which doesn't help with the stress! For example I got called in but there were no beds, although was prepped then sent home. Got a new letter yesterday with date Tues 12th June and panicked as had to have blood test first, no spaces at GP's to have it- they just called and booked me a cancellation then as i was on the way the hospital rang to say, sorry they'd given me the wrong date it's the week after. I have to keep on touch with the surgeon's secretary, the schedular, the GP and her secretary, that's not counting the scary appointment booking lady at the hospital (rang her last week to check is ok to have 3 CT scans in a row 'the radiation' and she got all cross asking if it wasn't good enough having the tests- I think they are just so busy)

Anyway also have a scary sounding test this Monday which is where they put a nasogastric tube down and put fluid into your small bowel and also put you through the CT scanner with the liquid into your vein at the same time. Spoke to DH as a bit scared and he gave the helpful and so emphatic advice "Well they can always knock you out can't they, don't they anaesthetise people to do that if it's tricky?" Made it feel so much better

So I've been googling CT scans and the radiation and how similar it is say to being so many miles from Chernobyl and how many X-rays is in each one... must stop doing such stuff is no help to anxiety!

Best wishes to all of you, this thread is so long it would probably be tricky to get know you all well but it's good to have people who understand and are going through similar.

Welcome And sorry you need to be here, so to speak.

It is stressful, I agree. And it's easy for even the most thoughtful and empathic people who work in hospitals to lose sight of that, simply because it's an everyday job for them. And the scary ones at the end of the phone (I've had them too) tend to be hired for their efficiency and organisational skills rather than necessarily their interpersonal skills.

Have you managed to get the bloods organised for the 19th?

Hi no, I'd better make an appointment for that actually, thanks for reminding me. It's called a 'group and screen'. If there are no appoints at the surgery i can always go to the blood room at the hospital though and wait there apparently (where they are very efficient at taking blood I hear!).

Yes I spoke with my Gp about not taking it personally when they can seem rude, it's just they are trying to fit everyone in I guess.

Hope everyone else who is going through similar is managing ok over the half term- so far today we have been out to the kids showing at the Odeon which was cheap but they put the wrong film on a PG which left the toddler terrified although he has now fallen asleep which is a bonus, bless him!

Hi Mhari,
All the best for your test on Monday. It doesn't sound terribly pleasant, but hopefully the reality of it will not be too bad. I have stressed over tests many times, only to then be cross with myself for the time wasted worrying. In a sense, your husband is probably right, in that if the test is very distressing, then it would probably be done under general, or at least under sedation. His lack of sensitivity is probably just to mask that he is feeling helpless.

I've only had one CT scan, but from now onwards I will have one every other year. I am concerned about the radiation too, especially because I cannot have MRI scans.

We have had quite a nice half term. We just came back from a one night stay in a country house hotel for a friend's silver wedding anniversary. I beat my husband around a children's assault course, which was nice .

Hi mhari, welcome :) it doesn't sound pleasant on Monday. Hopefully it won't be as awful as it sounds. Once the tube is in your nose, then hopefully that's the worst bit over. I hope it goes well.
It does sound like your hospital is rather harassed.
Will try and catch up with the rest of you later. Dinner is ready!

BM DP and I are taking things slowly at the moment but we are getting there. My Surgeon had a chat with him on Friday and told him that he specializes in Pregnant woman and Neurosurgical problems and majority of them have OK pregnancies and healthy babies at the end.

At my Surgeon on Friday he did a LP and the pressure was high (37) but as I couldn't tell it was that high hes going to have to do fortnightly to monthly LP's. I had slight headaches but not really bad. He drained the pressure to 12 and I feel just the same. I asked him to do another just to be sure but he couldn't as he had drained the fluid.

The Surgeon is also concerned about where the Shunt is lying in my abdomen. He believes it will cause problems in later pregnancy. He tried to move it from the outside but the magnet wasn't strong enough to move it to much. He thinks that the reason it keeps failing as instead of going just a little bit in my abdomen it goes in a lot and too deep. As I get bigger with the pregnancy the shunt might be pulled out of my brain and dislodge elsewhere. So I will be getting Ultrasound scans on the shunt site just to make sure it is not getting pulled to far.

I have finally been took off all medication now instead of being weaned off them, the Surgeon just stopped them all instead of Paracetamol. I need to see my Neurologist on Monday to see what meds I can take during pregnancy as the Surgeon doesn't really know if there is any.

Hi Mharia and good luck on Monday hope it all goes well.

Hope your DS had a good party BM.

Hope everyone else is doing good :)

So this is the new, good surgeon Backpack? It does sound like he is thinking things through. How do you feel about being medicationless?

Mad, I really hope a new date comes through for you quickly.

Pavlov - how is your dd doing?

yes this is the new Surgeon. He is very nice, hes the only one who has been able to get LP's done straight away.

I'm a bit fed up being without Medication as I've put up with all of the side effects and the Pregablin was just starting to work :( Never mind, I suppose its better not to be on any for the baby :)

hey sorry i have not been on. its all been go.

1. DD broke her arm attempting high monkey bars thinking she was bigger than she actually is. broke both bones in one wrist. luckily, a buckle break and an slightly angulated break that will both heal on their own with soft plaster cast and no further intervention. but, it has been a frought time, what with them just recovering from chicken pox each child. No sleep in this house.

1. Just got the news of DDs arm being on the mend well, and that day I threw up, followed by sore nerves, muscles and joints, got a bug which also make my back feel more sore. so. I, feeling rubbish, swept some rice crispies from the kitchen floor, first sweeping movement and one of my discs went. OMG. it hurt. slowly over this saturday it got worse, by yesterday morning I could not walk, or move without crying. I am now mostly in bed hopped up on 60/1000 cocodemol plus 50 diclofenaic plus 2mg valium. It is ok to move now and I can get up and walk for a short distance, but once I have done that and stood for like 1 min it hurts and I am screwed again. Could not move this morning again after 8 hours without drugs. Off work for a week and DHs birthday today is screwed and while he is taking care of me, it is not really loving care, but dutiful, gutted that his birthday is ruined type of care. He is going through the motions of what has to be done. He has had enough of caring for me I think, and as it is his birthday, its just made it worse. I am tired, very tired from the last few weeks and he made a comment yesterday about my mental wellbeing, almost seemed he was suggesting I was making this up/making it worse because I am so tearful/over-reacting. Might explain why he was not running to drag DS off me when he is hanging off my neck this morning before I had any drugs. Or why he was not in a rush to get me a slice of bread so I could take my meds and stop being in such pain I could not bear it.

1. still no news about my kidney. but. I have heard that disc problems can be exacerbated by not drinking much water, so by me increasing my water intake I can help both my disc problem and my kidney thing too.

I am so so so fed up. I can't, can't think that this will be forever now, but its going to be isn't it? managing low level pain for 6 months followed by a week or two of crying in agony and being in bed. I am normally so active. And I hate taking drugs, they don't make me feel good. I feel irritable on them, and woozy, and I am just so upset about it all. Sorry. its all me me me.

I will read the other posts and give you all some support in a minute, once I have composed myself. again. for the millionth time. In tears a lot at the moment.

mharhi I am a new one too. I winge a lot sorry in advance

BM how did the party go?

Hi ladies.

Welcome Mharhi and I hope today went ok and you are now back at home taking it easy.

Back pack - your new surgeon sounds very good. It's so much easier when there is a clear plan. I hope it makes you feel more confident. Hope the morning sickness is not too bad. Must be daunting to be without medication, but I suppose it will also give you an idea of how you feel without it. I would love to be able to stop some of mine but am also scared of how I will be. I can't wait to stop the blood thinning stuff as I think it is the reason I am so tired, not to mention the bruises! Still a couple more months to go on that though.

Mad - how frustrating about your ablation appointment. Hopefully you will get a new date soon. I remember my period was due about the time of my op and I was really worried about it, especially given the amount of heparin they were planning on giving me. Luckily it came early and was all done. Fingers crossed the new date is better timed.

BM - how are you doing? Sounds as though you did a great job for your DS's party. What was all that about not being able to cope? You did and you can. Many wouldn't ice a cake themselves when not well, let alone organising a party. Good for you.

Hi to Reeny, OYBBK, Mumface and Pavlov.

I am ok mostly. Very tired. And a few silly aches which I can't work out whether they are important or not. I am popping into work tomorrow just to do paperwork etc.. Meant to start properly next week. I also have an orthotics appointment on Wed to help with affects of stroke on my foot. Treating myself to having hair and nails done too this week as I feel I deserve it.

{hugs} Pavlov. You've had an extraordinarily rough spell. You wont feel like this forevermore, you just need to be super gentle with yourself.

Ginger wine, you def deserve it. You are setting a good example for us all. :)

Bit wobbly emotionally here. Don't have any dates for my tests yet and still waiting to hear if work will renew my contract - am going to have to start looking for other jobs very soon if they don't hurry up. Still other stuff going on, so anxiety is rearing its head. I am so tired and dragging myself through each day.

One day I'll post a happy post!

Oh Pavlov, I'm so sorry. Just checked back in and realised I crossed posts with you earlier. What a rubbish week you have had. I am sure it can only get better and will not always be like this. The problem is it is so hard to see any light at the end of the tunnel when you are in pain, full of worry about unknown medical stuff and basically don't know how long you will feel like this. I have a friend who has had some terrible back problems and 7 months ago was in agony and really struggling. It has taken a while but she is so much better now it is hard to believe how much she was suffering then. Really don't worry about moaning. I have only joined this thread a few weeks ago and I have done my fair share of moaning. That's what we're here for. Hopefully we are not all having a rubbish time on the same day so there should be someone who can help try and keep you going. Hope tomorrow is a better day. And if it isn't we will still be here.