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?

It's been a couple of days since we heard from LGR :(

Still in hospital :( my body is crap at fighting infection.
They re repeating the chest X-ray and bloods tomorrow, praying the pneumonia will look better.
Lovely to catch up on everyones news,
Glad your dd's weekend went well mad
Really hope work goes well tomorrow badkitten how's your back now? breastmilk
backpack really hope your sickness is better, thanks got the support re peeing the bed, haven't done it again thank goodness but something up down there recently.
I've been waiting to be moved to the respiritory ward all day, what's the bet the minute I go to sleep they'll move me.

Good luck today Mad.

LGR you poor soul :( I really really hope that the news is better today. Utterly miserable for you. Which ward have you been on til now?

Back is still grumpy, but manageable thanks.

LGR MNing from your hospital bed in the middle of the night shows real dedication to the cause . I really hope your pneumonia goes soon so you can get home. It's nearly impossible to get a good nights sleep on a hospital ward.

OYBBK also showed similar dedication with her mad cat lady thread done in real time. It did make me smile, especially when OYBBK was wondering if the confused lady was in fact looking for her. All the best for work today .

LGR Oh no :( stilll in hospital. Everything crossed for today.

And all my love to mad for being free from atrial flutter at today's appointment.

And to kitten for her return to work.

And also to BackPack for the surgeon getting in touch and providing some answers.

How's everyone else on here? Reeny?

I've always specifically ensured myself never to have internet access in hospital... have always worried that I'd post disinhititedly scary or desperate stuff and then send endless frantic emails to MNHQ asking for it all to be deleted and then getting phone calls from all my family saying they've read what I've been posting...

I'm back at toddler groups this week, with my mum coming to help get DCs in and out of pushchairs and on and off lap. Not been to any of them since before February half term. Eeeek. Back is hurting still, too.

it kept me sane BM!

I did it :) first day back and it was fine. It was a good day to go back as there was lots of conversations about holidays so my return didnt stand out so much. I think a few people expected me to be completely back to normal and i had to say to a couple that although I'm feeling a lot better than I was Im not sorted out yet.

This time last week I couldnt have imagined being well enough, its amazing how things change. I could manage everything i would normally do (albeit with a little less energy and zoom and i needed to sit down for a bit at one point)

Hooray!

I hope the toddlers groups go ok. Its good that your Mum can come, hopefully she will be able to shield you a bit from any awkwardness. might be worth talking to your gp (I know you hate going there!) to see if they can give you something for it. I'm not sure that anything like an osetopath would be sensible yet.

Hope you get home soon LGR.
I've think internet access keeps me sane when I'm in hospital.

Pleased your first day back at work was fine kitten.

I've still not had a phone call back, but why wouldn't surgeon call me as he said last week" I HAVE. got people who are deing not just YOU on my books"
My dp is going to give him until tomorrow them he will phone him. The good mews is I finally was able to go to the toilet without collapsing its still painfull to move but with my do help I can walk short distances.

I've been looking into other neurosurgeons who will treat my illness hopefully it will be 3rd time lucky :)

last month not last week, I was talking to DP at the same time ass MN

The neurosurgeon sounds arrogant backpack :( you really do need someone who respects you. It is good that you can get to the loo, I hope it's a good sign. How is your eye sight doing?

I'm back home. I'm still in flutter, it's been four months now so I do need treatment. The doctor has booked me in for ablation under local anaesetic. It will take two hours, and he anticipates it to be quite simple. He did say it will hurt during the burning, but this will only be for 15 minutes. He said I will be offered a date in about 8 weeks, unless a cancellation comes in. If I anticipate that I will have my period, then I can ask for another date.

I forgot to ask about the risks (probably a good thing) or why I need treatment given that I have no symptoms. I did ask about my echo. He was surprised that no-one had given me the results, but was at the case review. I am being referred for a trans oesophageal echo yuck to assess my atrial septal defect, and am going to see yet another cardiologist . The hospital rang when I was out to offer an appointment, but refused to tell dh what it was about. They said they would write to me, or I could call, but didn't say what department. I tried the generic appointments line, but they were no use. I'm guessing it was for the TOE, but I'm not going to chase that!

OYBBK, I'm so pleased that today went well. You do seem to better off not on the meds. I'm glad I haven't been put on amiodarone. I think I'd rather have a short blast of discomfort than long drawn out side effects of medication.

Backpack Good luck searching for a new neurosurgeon. My experience says that surgeons are not the best communicators.

Essentially, I'm feeling OK about today. I could have asked for the ablation to be done under general, but it was not the doctor's preferred option. Dh would have been cross if I had chosen a higher risk option just because I was scared. I will certainly be wibbling nearer the time, and needing lots of hand holding. I will also be wibbling about the TOE, I have a feeling that I will throw up.

Well I finally got a call back, the Surgeon is going to get me into clinic with another surgeon in June or July When I told the secretary how ill I am she said "ermmmm but surgeon said thats when hes free"

My eyesight is a tiny bit worse I see double at the moment and can only really see if I look a funny way (just the same I was when I was first diagnosed) My eye surgeon has been contacted but as he is at 3 hospitals it could take a while. I have left a message at the one I see him at.

I have emailed another hospital to ask if they treat my illnesses hopefully someone will get back to me :) .

Mad :( at the DR saying it will hurt :( I find when they say it wont hurt it really hurts so I just want to wish you luck and hope it don't hurt too much.

Mad I'm really sorry :( not what you were wanting, I know. We will hold your hand in the lead up to the ablation. I'm guessing that, if you had asked about the risks involved with the ablation and/or why you need ablation on top of pacing/warfarin, you would have been given some sort of explanation about why an ablation is less risky than leaving the flutter untreated, possibly in relation to the ASD/everything else. But I just hope that you get the appointment for the ablation and the TOE smoothly and soon. Did he explain why the 'assessment' of the ASD? Might they be looking towards more surgery?

BackPack No, you cannot wait that long. But by saying that you should be able to wait until June/July... I mean, what is the surgeon implying? That the shunt is OK after all for now... or that there's nothing he can do about the pain? What does your GP think? If nothing else, it seems as though you need better pain management, if only as an interim...

The GP is concerned as there is a lump on the left side of my spine (where the shunt sits) so he told me to contact the surgeons through my sight deteriorating and this lump especially as the nerve pain is going from my neck down to my leg. The GP believes I need some sort of scan to make sure things are right as the nerve pain is worrying, if I'm not sorted or better by tomorrow my GP said he will be admitting me to hospital, obviously I'm not better. My GP sent faxes to the surgeons last week about it all.

The surgeon apparently does not know whats a matter and apparently he can't get me in to see him earlier then June/July.

I just don't know what to do I was ok until I knocked my LP shunt out of place :( now all of this has happened

As much as I'm at my hypocrisy in saying this, it seems to me that being in hospittal might be the best place. As much as being in hospital is grim, it may at least keep you out of danger and/or get you treated faster... really, you don't sound safe at home with all the falling you've been doing, and given that they won't want you blocking up a bed for the next few months, you should be able to see a relevant surgeon or at least an appropriate scan whilst you're there.

I agree with BM that hospital may be the best place for you. I think your GP is being very clever admitting you. You have a complex and unusual condition, and your GP has been left in the lurch trying to manage it without backup. It's not fair on anyone, so by admitting you, it means that the hospital doctors need to do their jobs put a plan into place.

Maybe you will be doing some short term bed blocking. The fact is that you are a young woman and you should not be as sick as you are.

Mad, that is a bugger. I'm sorry. It's rather a long wait too. about the burning bit hurting yuk that you need a TOE we will be here for your wibbles though. Lots of hand holding!am glad though that you don't have to try amiodarone, better to try and avoid that one.

{{{hugs}}} backpack. I agree too, I think you need to be in hospital I'm afraid.

I've done an ablation/TOE thread, because lurkers often get frightened off by threads with 500 plus posts. Well I do.

OYBBK I think my consultant likes to play it straight, and not say that it is painless when it isn't. He also told me that my pacemaker procedure would hurt as much as a dental procedure, and he was spot on with that analogy. I don't want you to be frightened, because I know you will probably be having an ablation too. He did say that he would give me plenty of morphine for the pain.

Are you going to chase your blood/echo/EP appointment later this week?

I'm going to chase the blood test results on wednesday. (its easier for me at work then ) The echo I think is a bit soon and as for the EP he did say he was busy and it could be a while so I'm not sure when to chase that.

Good idea to start another thread.

I also believe I need to go in. Dp is phoning my go tomorrow to get the paperwork to get admitted, I will be going to my local hospital which we can see from the house. I don't want to go in but with the surgeon being the way he is I need to do something.

I keep trying to think of something that I've done to cause him to change. I can only think about last year when I was severly depressed and he got psychiatrist to the ward and i shouted at him. But he was ok until last month I know in not the easiest patient but I can't think about what I've done wrong, I've kept every appointment done what he's asked.

I did apologise last year and he said "its ok"

Sometimes backpack we think we have caused a problem with others when actually it is nothing to do with the relationship, but rather that the other person has other stuff in their lives. It could be that the surgeon has stressors of his own - perhaps he is feeling overwhelmed with something in his own life. Being a professional doesn't remove the human reactions to stress that we all have.

I hope today goes well, if you can, let us know what happens.

I'm just waiting for a GP to come out. Apparently it will before 2pm, if I am still as bad he will arrange transport to hospital. I feel a little bit better but I still can't stand up :(

When I phoned for the GP the receptionist told me to phone the surgeon and ask what the problem is. I did that and apparently its because the Surgeon is at a loss at what to do with me :( I explained what is happening and so I'm just waiting for a call back. I did speak to the official secretary today and she has been good in the past and got things done for me.

Hope everyone else is doing ok.

:( if your surgeon is struggling then he needs to refer you on to someone who can help. I think there are some who really really specialise in certain areas.

I spoke to the consultants sec. today. The consultant has the blood test results. I've asked her to send a copy to the gp (who was supposed to get a copy) and she said she would fax it over. Was rather surprised to be having a helpful conversation!