Support thread for those awaiting (and undergoing and recovering from) medical appointments,tests and surgery: PART TWO

[BreastmilkDoesAFabLatte]

This is a continuation of this thread, started a few months back by ohyouBadBadkitten as "a thread for you to vent in or post your 'hooray's'". Everyone is welcome, regardless of the nature or duration of their illnesses and whether or not they have a diagnosis. The last thread dealt with a real diversity of long-term and acute conditions, as well as many of the mental health challenges and fertility questions commonly associated with them.

We should probably add the standard sort of disclaimer about not necessarily being qualified or insured to offer proper medical advice, which means that if your symptoms start to sound a bit scary you'll get a few of us rather assertively shoving you in the direction of your local A&E department. As madsometimes puts it, "A&E for Mumsnetters would have Boden medical gowns, Farrow & Ball paint schemes and fruit shoot free vending machines selling organic elderflower presse. Pinot Grigio would be dispensed at wine o'clock. There would be public information posters warning about the dangers of googling Dragon Butter... the injuries resulting from Friday night threads would be quite horrific." However, we all know the reality of medical emeregncies to be signifiantly more stresfull than that, so if it's not life-threaningly urgent, we'll hold your hand and chat and support and speculate on the basis of the reasonably half-informed knowledge gained by our own life experiences.

Welcome. The kettle is on...

Oops! Been away too long again. Lots to catch up with!

Burning - I'm sure you are not a loony but I do get what you are saying about worrying about what your GP thinks. If I were you I would just stick to facts about symptoms. Some families are just unlucky and have several different problems. Please try not to worry about what others think. Try and work with school to help your DD get to school as much as possible and hopefully people will just understand you are a concerned mum.

Backpack - I don't know what to say. [Hugs] from me. I hope your better eye is coping and that things improve in your left eye. How are things pain wise without any meds?

Reeny - lovely to hear from you. What a time you are having. At least you have a date for the next op. I really hope that brings you some relief from the pain. Will have a look for Real People magazine.

Pavlov - well done for getting through work. So hard to concentrate on things when you are in pain and others reactions are often hard to deal with. Sometimes I feel that I don't want anyone to ask how I am at work as I just want to pretend that all is ok. On the other hand sometimes I feel a bit cross if people don't ask! They can't win really!

I have managed work again this week and it was ok but I am glad to be able to rest today. Unfortunately I still have that annoying pain in my chest and back and so I have been a good girl and have rung cardiology as instructed. Even though I know that they will want to do a TOE next. I could really do without this at the moment as there is loads of end of term school stuff going on!! It sounds so silly to hesitate as it is my health but there is so much to organise for the DCs at the moment! They said they would ring back probably today....

Wow, Reeny, you are so stoical after having such a difficult recovery from your op. Great news that you finally have a date for you spinal op.

Pavlov and Ginger, brilliant that you are both managing with work, albeit with difficulty. Ginger, good luck with the TOE. I hope that if you do need it, it will be scheduled at a convenient time, and not with a enormous wait.

Today I saw my cardiologist. It was an appointment that I had scheduled myself, because I have known her for 13 years, and was feeling quite overwhelmed. She was quite surprised to see me . All the people I have met that have had heart surgery have been referred back to their cardiologist, but it seems that my surgeon keeps her patients. So, my cardiologist is not my cardiologist anymore. I'm quite sad about that, she is lovely.

She was very nice though, and to be honest most of the things I wanted to talk about weren't heart related at all. She is technically a geneticist, and lots of my questions were about dd1. Others were about daft stuff like periods. She did say that she would see me again if I wanted to, but I don't think I will. I'm not sure how good the surgical registrar will be for the non-heart aspects of my condition though.

Did you get the call ginger wine?

I'm not surprised you feel a bit sad about it mad, it's a been a long journey you've had together.

Mad - 13 years is a long time. How lovely that you can just talk to your cardiologist about stuff. Sad that you won't be her patient but I sense she would happily give advice or see you if the need arose. Who looks after the non surgical stuff now - your GP?

Hi OYBBK, how are you? Yes I did get a call. They want to do a TOE and preferably this week. Not a lot of time to fit that in! Can't see that happening really. Should I be worried? Am starting to get a bit panicky now, imaging something has gone wrong and I might have to be admitted at short notice. Stressing about how on earth DH will know when to take DCs to all there school stuff and other things. Eeeeeeek! Help!

Gingerwine - if you let the school know what is going on, then it really doesnt matter if things go a bit pear shaped with respect to timing and belongings. Most important thing for him to remember is to get the kids fed at lunchtime. I'd be prepared for being admitted but try not to expect it, hopefully they are just being very cautious. This week though - thats only two days left and as you cant eat for 6 hours or something before it, it probably wouldnt be until tomorrow at the earliest.

I'm muddling through ok thanks - Lots of stressy things going on at the moment which is not great for my hr but I'm forcing myself to eat decent amounts and drink lots of fluid. Will be glad when the next couple of weeks is over!

Ginger, best of luck with your TOE. Is it going to be tomorrow? I'm guessing not today, because of the fasting. Your dh will surprise you, he will rise to the challenge I'm sure. Probably best to make a list for him, about what days PE kits, musical instruments etc need to be bought in. I'm guessing that you did that with your ASD closure anyway.

As OYBBK said, it may be best to prepare for an admission, but it is unlikely because your symptoms have been on-going for many weeks. I suppose if they have suddenly taken a turn for the worse it may be different. Anyway, how horrible for you to have this hanging over you.

My ex-cardiologist said yesterday that she thought dd1 would be a good candidate for a drug trial that they are doing. They are using losartan type drug, which is an established medicine, to see if it is a better therapy than atenolol. Dd1 can't take atenolol because she has a history of wheezing, so if the therapy is proven it will directly benefit her. It's a double blind randomised control trial, so no guarantees that she would be in the treatment group, but she is still young enough to benefit from the results.

I'm hesitating because I think that being in a clinical trial may involve more hospital check ups for her, and possibly blood tests. She would go ballistic if she was jabbed, and isn't too keen on hospitals! If I was eligible, I would certainly join it, and think it is the least that I could do for my previous doctor. Making such decisions for children isn't quite so simple.

OYBBK - Roll on to the end of term. Hopefully the summer holidays will bring you less stress.

Still no phone call! They are running out of time for this week I fear! Whilst I don't really want it they have now made me so scared I want it done now! I was really chilled and calm until yesterday. Last night I woke up at 4 after a terrifying nightmare In which I had awful pain and couldn't breathe. I have busied myself with lists this morning, just to keep my mind off it. Ring phone ring!!!

Hope you all having a better day.

Oh no, Ginger. Don't stress about this. If you are worried, then call your consultant's secretary and ask if you are going to be done tomorrow. It's not unreasonable to want to know, because not only will you need to fast, but you will need someone to drive you home (and you will be going home, I'm sure of it). Not to mention getting things in place for collection of children from school etc.

ginger have you had a phone call yet? or spoken to anyone? any idea what is going on now?

will post more later when children are in bed, but am lurking and reading x

No phone call and no answer from consultants secretary. No point worrying now then as yet more school events to attend tonight. Me in one direction with DS1 and DH in other with DS2! I will see how I feel tomorrow morning. I could always ring first thing and not have breakfast til after just in case I suppose, but I do like a cup of tea in the morning!

You've certainly got plenty to keep you occupied this evening then! I suspect it won't be tomorrow now, they are probably scrambling to find a time to fit you in. Either that, or perhaps your consultant has decided it can wait a little. Not nice for you.

Hello again. This thread has gone quiet, hasn't it?

I've just been so caught up in all that has been happening with Aillidh, and have seen others of us over on the threads praying for her. I've been so challenged by it all, and so devastated to hear that she's now dead. I can't begin to imagine how expat must feel - really, I don't think I could bear even to try and imagine it - and am now suddenly realising how fortunate I am. However ill I've been, I'm so grateful that it is at least me who is ill rather than DD or DS. But I know that it's a case of there-but-for-the-grace-of-God-go-we, as leukaemia is sadly far more common an illness than most of what I've been through...

How's everyone else?

Like BM, I'm extremely sad for Expat and her family. It's desperately unfair, and something that shouldn't happen. A devastating illness that has overcome a beautiful little girl, and left a gap in a loving family.

I hope everyone here is well. I know that LGR is due to go into hospital for tests this week. Good luck with that, a bit of a pita coming so soon after your wedding. I hope the tests are not too unpleasant.

Backpack, you are still in my thoughts. I hope your pregnancy is going smoothly, and your doctors are helping you with your sight and pain to the best of their ability. Good luck with the kidney scan. My experience of high risk pregnancy is that the doctors are extremely thorough, so hopefully if there are any problems, they will be picked up quickly.

Ginger, really hoping that you get the call for the TOE early next week. I hope you have managed to relax this weekend, or at least keep busy with your hectic schedule. I have a few events next week where I have to be in one place for dd1 and another for dd2.

Hi to everyone else that I haven't mentioned too.

Mad you are saying far more eloquently what I am struggling to put into words.

Mad, when is the date for your ablation? How are you doing?

I feel like an utter nuisance and annoyance at work now, everyone is running out of energy/ time/patience and today I was feeling particularly faint. One colleague is great although I know that he must be feeling frustrated with having someone like me. Other colleagues were really snappy today even though I was doing my utmost best and don't whinge but got on with things as best as I could. I know that I'm letting them down and I'm using all my willpower to keep going, but it's not enough to be doing a proper job. Roll on the end of term.

Only two more weeks to go, OYBBK, and then you get a lovely restful holiday. Did you decide where to go in the end? We've already had our holiday, so it will be staying here and at my mum's seaside house for us. I quite fancy a day trip to France too.

My ablation is on Friday, so not too long to wait. At least panicking about my period means that I'm worrying less about the procedure . I have to be at the hospital at 7.30 am, and the plan is to travel there on my own on public transport (6.30 am set off - yikes). Dh can then take the children to school, walk the dog, and collect me in the afternoon when I'm finished. I can't drive for two days, and need to avoid lifting and vigorous exercise for a week.

It will be nice to be fixed, and not to be waiting for appointments. It should be just routine follow up from Friday - once a year surgical review, and twice yearly PM check Ignores ablation follow up and PFO, because these will be fine

Hello again.

Yes I've been reading and praying for Aillidh. It is just so unfair. And hard to know what to say. I also feel so lucky to have my DCs and cannot imagine how they must be feeling.

Hope you're ok Mad, you seem to have a good plan for Friday. Hope you're period is either early or late and not a problem on the day. My cycle has gone completely up the spout on the clopidogrel and very heavy too. Do you have to reduce your warfarin or anything before surgery? I'm sure all will go smoothly.

OYBBK - nearly there. Time to start counting down the days. You will have deserved your break after such a difficult year.

I have my TOE on Thursday this week. Found out first thing Friday morning. Unfortunately had really bad pain in between my shoulders and in my chest on Friday afternoon. So much that DH took me to A and E as I was in agony. I am normally pretty stoical so I think he was really worried. Anyway ECG and X-ray were fine and after some lovely codeine the pain eased. In view of TOE already booked they were happy for me to come home with more painkillers til then. Honestly don't know what this pain is but it is horrible so just want it to go away. Keep trying to convince myself I am imagining it but I really don't think I am. Nurse didn't seem convinced that it was imaginary either. Also have a sore eye and the optician says my cornea looks swollen and some cells are 'not working properly' which is rare until old age apparently and can cause the cornea to go completely cloudy and need corneal transplants, although it might just be temporary and he wants to keep checking to assess. Great! Just another part of me that is falling apart! Sorry to moan!

Hope everyone else is doing ok.

Hi Ginger, yes I need to reduce my target INR slightly, from 2.5-3.5 to 2.0-3.0, ideally 2.5-3.0. When I tested today, it was 2.8, so I'm right where I need to be at the moment. I've resigned myself to accepting my period if it comes. I did ask my cardiologist if she thought I would be reasonable asking my GP for norethisterone. She gave me a YABU - Ok, she was a lot nicer than that, but did the talk about how everyone will have seen similar and worse. She's right that messing with high levels of hormones probably is not the best thing to do just before being immobilised for an op. I'm definitely premenstrual at the moment, so we shall see.

You have been having a bit of a nightmare. So sorry that the pain is increasing, that must have been really worrying for you and your dh. I know my dh hates anything medical that he can't control. He really didn't enjoy being my birth partner because he was helpless to take my pain away.

Good luck for this Thursday, the test isn't unpleasant, and is over with quickly. Let's hope you can be given an answer there and then. I really pushed for immediate feedback after mine. The doctor said I would be too dopey to take in the results, so I said to give them to both me and dh. Actually, I didn't feel dopey at all. Your cornea thing is just to test your patience. You must have thought Oh ffs, I don't need this.

Ginger wine, try not to worry about your eye too much, if they were worried they'd have referred you up to the hospital I think. Have you still got the chest/ between shoulder blade pain? It must have been frightening. I hope it goes well on Thursday. Mine is in just under 3 weeks time, so I'll be interested to see how you go.

Mad, aren't periods a blood nuisance (scuse the pun!) last thing you need to be worrying about. You sound pretty organised for Friday. Are you going to be ok going up by yourself? ( I take it you have to fast do you?) would a taxi be a good plan instead? < worries>

Hi, yes Mad you hit the nail on the head. I just don't need something else to worry about. Actually this morning my eye feels a little better. Going later to see optician. Hopefully it has settled or he was muttering about referring me on. I know it's a minor thing really but it was just the last straw last week.

I still have my pain although not as bad as Friday. Taking codeine but only in the evening as it makes me woozy and I need to Look after DCs etc... I am in at 7.30 on Thursday and home sometime in the afternoon! I have childcare sorted first thing but think I need to sort an after school plan too just in case we aren't back in time. The letter suggests a fair amount of waiting around afterwards. Hope I am early on the list! I will let you know how things go lovely MN ladies.

Right, off to work for another day of pretending all is ok!!

OYBBK, I will be fine on the tube. Yes I will be fasting, but only from the night before, so I have enough reserves to skip breakfast. I will also be before the main rush hour. If, however, they put me late on the list, then extreme grumpiness shall ensue . I think the daycase patients go early, and the ones being kept in are later. I guess they want us day people out of the door ASAP, which suits me. It would be nice to have dh with me, but I suspect he wouldn't be allowed to stay, so he might as well be at home where he can be useful.

Ginger, your hospital obviously likes patients in at stupid o'clock too . Fingers crossed for first on the list and light sedation only, so you can get home early. Hope the eye test is improved today, and you get your Oscar for actinglikeeverythingisok at work.

I've never been very good at the actinglikeeverythingisok... just not very good at acting, basically. But yes, I do know the feeling of arghwhatnext... so ginger I do feel for you. I hope the TOE goes smoothly.

I'm in a fair amount of pain again here. I suspect it's simply related to the sleep deprivation of DS having had a run of dreadful nights insomniac little sod and I'm aware that others live with far greater pain than this but I had really believed that the Prozac had it sorted :(. I'm supposed to be out and about with work doing things which involve lots of walking around at the moment, and walking hurts. I don't know whether to attempt to push on through the pain, or whether to try and rest as much as I can...

I don't have to go to the hosp until 11am! I am going to be very late in aren't I.
BM if walking makes it worse rather than better then I'm not sure it is sensible to be pushing to keep going. I think you need to try and get to the bottom of what is causing it tbh.

Mad, at least your dh will be kept out of trouble with his list of things to do :) and you know that the dc are going to be looked after well.

Gingerwine, good idea to have child are sorted for later in case you are super woozy after the sedation.

Ok, so my eye is officially better. Really wish he hadn't mentioned words like endothelial dystrophy last week as it was just unnecessarily alarming. It is more comfortable too. Back to dealing with the main issue at least.

Stupid o'clock is about right. We will have to be up seriously early to get there and park etc... I have sorted after school children arrangements and am secretly hoping for more rain as then DS1s sports day will be cancelled so he will be out of school at normal time which will make life easier.

OYBBK - your hospital clearly work on a different time frame to mine and Mads!

BM - sorry to hear you are in pain. Any long term pain is hard to deal with and made worse if you don't understand or know what's really behind it. I'm not sure whether pushing through is the answer, but that's difficult if it's part of your job. Sleep deprivation won't help though so I hope DS has a better night tonight.

Managed to fool people I think. Busy day so that kept my mind off things although the back pain is very hard to ignore.

Hi to everyone else.

On the one hand, it's good that the optometrist was on the ball, but really he could have asked you to come back for another check without wrecking your weekend
Pita that you need to miss ds1's sports day, I shall do a rain dance on Thursday, although judging by our summer so far, maybe that will not be necessary.

For the TOE, my hospital was more like OYBBK's - my appointment was at 10 am, but delayed until after 11. I was soooo grumpy because I was starving, but I was home in the early afternoon, so maybe you could be too.

BM - Sorry that ds is being a pickle. My two were both horrendous when they were teething, in fact dd2 didn't sleep the night until she cut her afternoon nap at 2 and a half. No wonder you are shattered at work, very young children are physically demanding, and your job sounds like it is too.

Feeling a bit wobbly tonight. Tomorrow night is very busy (school stuff plus scouts) so I have just had a long bath and done the shave. I think I've taken enough off, if not I'm sure they will attack me with an NHS razor.

I'm ok if I don't think about what is going to happen, but as soon as I think about catheters going into my groin or the burning, I'm less ok.

At least tomorrow is busy.