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Original poster

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?

OP posts:
BreastmilkDoesAFabLatte · 30/03/2012 15:59

*cannot refer to EPs

Original poster
ohyouBadBadkitten · 30/03/2012 16:01

I'm sure that's true BM (Shock I left you off my summary, how are you????)
But when the cardio was telling the on the phone I'd need an ablation, I hadn't appreciated that I would have to see a further person and it would have been nice if he could have sorted that out before I saw him. I guess the system doesn't work like that.

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BreastmilkDoesAFabLatte · 30/03/2012 16:10

Yes, unfortunately the system doesn't work like that. I had a similar experience of not realising that I needed to be passed from general to specialist cardiology services. And just to warn you (you left me off your summary and obviously hate me, so I might as well be the harbinger of bad news Grin) the EP to whom you're being referred may require another 24 ECG and/or any other tests you've already been through. Sorry.

I'm having a mood swing approximately every hour, so how I am is probably an impossible question to answer anyway. In pain, though, basically. But grateful to be alive and enjoying the sun.

Reenypip · 30/03/2012 16:19

Wednesday op cancelled. Rearranged for next Monday. Just been cancelled.

BreastmilkDoesAFabLatte · 30/03/2012 16:25

Oh Reeny I'm so sorry. Sounds like an awful time you're having of it all at the moment.

Original poster
ohyouBadBadkitten · 30/03/2012 16:44

:( reeny.

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Original poster
ohyouBadBadkitten · 30/03/2012 16:50

Thanks for giving it to me straight BM. So what you are saying is that this could go on forever.... how on earth do I plan anything? I have no idea whether I can go on holiday in the summer (why didn't I ask him, that was on my list!) if I am feeling well ( can I even get insurance?)

Sorry that you are in pain. Cling on to the sunshine (that sounds awfully cheesy Grin)

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BreastmilkDoesAFabLatte · 30/03/2012 17:08

If I were in your position, I would try and plan everything as though this wasn't happening and to go on holiday if you feel well enough to do so. The British Heart Foundation have an advice line dedicated to travel insurance... I haven't used it, but have heard several people dvise on it.

But of course, such questions can only be determined by the level of risk you feel comfortable with taking. And with, given that in your case the risks are fairly indeterminate, the ability you have to withstand uncertainty. In comparison to the rest of the medical system, nothing in cardiology is particularly low risk... but given the litigious culture we live in, if today's cardiologist had thought you in imminent danger, he would have taken care specifically to advise you against booking a holiday (or returning to work, doing the weeding etc) whilst waiting for the EP.

Madsometimes · 30/03/2012 17:23

Reeny, I cannot believe that you have been cancelled again. What a ridiculous situation Sad.

I would certainly have cancelled an appointment to learn self catheterisation if I was on my period. I pretty much need a toilet within 5 minutes reach on heavy days.

OYBBK, you will be able to get travel insurance, but expect to pay a premium. You may well need to shop around, because there is a huge variation in costs. It is a good idea to include your travelling companions covered on your high risk policy too, otherwise if you need to cancel then you may be in a situation where you are covered and they are not. Their premium will be higher than average, but shouldn't be too high.

I got insurance last year when I was waiting for heart surgery. I was very high risk then, so you should be able to get cover. Ironically, we did need to cancel our holiday, but not because I was sick. Dd2 caught norovirus, we were going on our first ever cruise. Not a good combination, but we got her to our GP quickly for a medical certificate, and they did pay up.

Original poster
ohyouBadBadkitten · 30/03/2012 21:25

You two are a wealth of knowledge, thank you :) I won't book anything yet while I see how the land lies. I am one of life's planners, but I'm going to have to try and aim for a bit more spontaneity in life!

Super tired tonight, it is probably from the tension of waiting for the appt.

Very much appreciate all the kind words and support. Thank you all.

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BackPackBackPack · 30/03/2012 22:27

Reeny sorry about the DR's cancelling the surgery.

I'm also looking for travel insurance but as the same as last time I cant get it :( or they ask for just about the same money the holiday would cost just to insure me Shock so it looks like either go away with no insurance which I can't risk or stay in the uk. We were going to go away for DD's birthday. Hope you get insurance and it is not too expensive OYBBK

Hope everyone else is doing good.

I feel a bit ill today. I keep getting double vision and my head is starting to feel heavy again I can also feel my shunt twisting, I'm hoping it is just the shunt getting "comfy" as it will be serving me for the rest of my life so it needs to be comfy as my life is going to be a long one.
I know my vision is deteriating badly and I am expected to lose it soon so that is another thing altogether.

I am back at my GP's on Monday as he is going to look into things to see where my depression is coming from and he is thinking he will stop me self harming I have been self harming since I 13, I'm now 24 so I doubt that is going to happen

My hair is starting to grow back at the front where they never shaved my stubble off to do the other surgery so I'm happy today as I can see hair :o DD is loving it and keeps saying "Mummy fluffy, Daddy fluffy to, i love mummy fluff" I'm hoping the back will catch up or I will look funny :o.

Hope everyone has a good weekend :)

Rochele · 31/03/2012 01:39

I'm now at the emergency because of feeling weak and light headed maybe from crying and worrying to much. They are trying to see if I loss too much blood because of the embryo transfere. I thinks it's to early to tell if I'm pregnant. It's only been two 12 days. I'm going crazy.

BackPackBackPack · 31/03/2012 03:19

Hope you are ok Rochelle.

Im going to take my Tablets Gebapantin it knocks me out for over 15hours then I wake up but not "with it" I am seeing my GP on monday to get took off them. I will be put on Preglabin (sp)

I'm suffering a bit at the moment as it seems like my shunt is twisting more and more. It really hurts and it is making me bend over in agony. The same thing happened the first time I ever had a shunt and they had to go back in and lengthen the tubes so it could move around. I'm hoping it dont come to that but I'll mention it on Monday :) They will legthen the tubes under a General Anesthetic and I will be able to see the Surgeon do it.

BreastmilkDoesAFabLatte · 31/03/2012 08:13

I once got so freaked out by the cost of high-risk travel insurance that I went on holiday without, even though I was pregnant at the time too and had to hide my bump from check-in staff

Rochele... got everything, everything crossed for you and hoping and praying. Certainly, the amount of pressure you're under would be enough to make anyone feel weak and light-headed, so I'm glad they're looking into it for you.

Backpack... somehow in all of this I missed that you were only 24... I'd vaguely assumed you were a bit older, simply because of all you've gone through. So yes, the shunt needs to get even more comfortable. And whereas the GP may be being a bit idealistic or wishful-thinkinglike in hoping that he can single-handedly stop you from self-harming... people can and do stop, even after 9 years and even after having done it for so long. But given the pressure you're under, in the same way that people often find it hard to quit smoking when they're stressed, you might find that now isn't the easiest time to try and stop...

Original poster
ohyouBadBadkitten · 31/03/2012 08:35

backpack, as BM is saying, self harming, is not a great way to cope, but it is a way and you need to find someone who can help with that. I think that it is much easier to deal with the SH side once the stress side is more under control. I hope the gebapantin has helped you to get some rest.

Rochele, I hope they could give you some reassurance and help last night.

How is everyone doing this morning? Im feeling a bit low, but I am trying to take some of my own advice and not look too far into the future, I might end up making myself glum for no reason as things might improve massively. Would be quite nice if summer would come back, this cold gloom is a bit grim.

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BreastmilkDoesAFabLatte · 31/03/2012 08:52

Good morning. Suddenly all cloudy here, too...

Today is the first time I'll be on my own after the surgery - and in effect the first time for a least a month Shock [terror]

I tried last night without painkillers and woke up in agony. Well, at least I tried...

Original poster
ohyouBadBadkitten · 31/03/2012 08:59

that is a bit scary BM. I reckon you'll be ok though, how are you going to tackle the day? It is going to seem rather quiet!

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BreastmilkDoesAFabLatte · 31/03/2012 09:02

I was initially planning another bath, but I think I'll have that whilst DH is still around. I'm just going to sit tight and read and/or watch DVDs. Not attempt anything. And ask my DH to ring me at hourly intervals.

What are you doing today?

Original poster
ohyouBadBadkitten · 31/03/2012 09:16

a bath isnt a great idea by yourself! Sitting very still sounds like a splendid idea! How long will you need to be rooted to the spot?

Perhaps a garden centre this afternoon, the one positive thing out of all of this is my obsession in getting the garden sorted out, seems to be my way of coping.

Tomorrow, perhaps church, if I'm brave enough.

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LargeGlassofRed · 31/03/2012 09:24

Hi all very quick one, dt2 was admitted yesterday so stuck on the children's ward, had about an hours sleep last night. He has a chest infection and sats very low, so been on oxygen since we came in.

Original poster
ohyouBadBadkitten · 31/03/2012 09:26

oh no LGR :( you must be utterly on your knees. I hope they can get on top of it quickly. Make sure that you are eating and look after your self as best as you can. {{{hugs}}}

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Original poster
ohyouBadBadkitten · 31/03/2012 10:20

Ermmmm, not sure this is good. Felt unwell and shivery, checked pulse was44 so just did blood pressure/hr monitor. Bp fine, 127/78 but heart rate is 47. Going to take it again in a few minutes.

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Original poster
ohyouBadBadkitten · 31/03/2012 10:49

Back up to 59 dh has given me a hot water bottle and some decaf coffee and I feel somewhat better. That was odd. Was contemplating a&e.

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BreastmilkDoesAFabLatte · 31/03/2012 10:51

kitten The advice given to me was that if my heart rate went below 50, I should go to A&E. Even if you feel OK (and you will be OK) I should go, especially as Saturday morning will be a quiet time... an ECG taken with such a low HR might speed diagnosis and might bump you up the waiting list.

LGR big big hugs to you and DT2. Can't imagine how exhausted you must be.

BreastmilkDoesAFabLatte · 31/03/2012 10:52

Crossed posts. I would still go to A&E, TBH.