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?

Phew. Backpack, I was beginning to worry that something dreadful had happened to you.

Glad the lumbar puncture worked, though such a drastic measure for pain relief . How long will it keep you pain free for?

I had Pizza Hut cravings whilst pregnant with DS. DH is a total anti-junkfood fascist, but I did order the odd takeaway whilst he ws working late.

kitten I wasn't being serious about the allotment... gardening just isn't really my thing. It just really upsets me that (sexualised euphemisms aside) gardening is seen as a such a stereotypical pursuit of both old people and cardiac patients... there are keen and skilled gardeners of all ages, and young people with heart disease too. Though in saying that, I am still praying that this will all be just a brief interlude for you, and that you can be straightforwardly ablated and off amiodarone.

For a "normal" person it can last 14days, but the most mine has ever lasted is 48-72 hours. For some reason my pressure builds up far to quick. It is really the only thing that works for pain relief as too many pain killers cause more headaches so DR's tend to do LP's and frequent pain killers.

I also hate the constipation from pain killers . If you are suffering phone your GP or Surgeon and ask for Laxatives. I usually get them as a precation when I have had a General.

My DP normally hates Fast Food but he loves Pizza Hut

How are you feeling now Breastmilk?

Breastmilk. That is my full intention!

I'm hoping nobody else is awake. Just woken up from a nightmare. Unmentionably terrifying thoughts.

:( BM Tis a horrible hour. I hope things seem better in the day time.

Daylight. How's everyone doing?

Just after I sent the last post, DD ran in for a cuddle and the pain became suddenly excruciating. I rang the hospital terrified, and they reassured me that DD is far too small (2 and absolutely tiny) to do sufficient damage to harm me... and then DS (9 mo and even tinier) kicked my scar.

I've just seen the scar for the first time. Well, it's not my first scar and I doubt it will be my last. And others have worse.

Just had a call from the CM. DD is totally in meltdown. Have started thread in chat asking for advice...

Just got my rehab appointment through. I see a cardiac nurse at the end of April. Rehab is supposed to begin 6 weeks after surgery, mine will be 5 months. Just as well that I have been disciplined about exercising...

Still, I'm very glad that I have the appointment. It's one less thing to wait for.

Hi all,
Ive only briefly looked over the posts from people.
Breastmilk, Glad you were able to go home so quickly after your op.
Sorry to hear your feeling very down at the moment. I think most people with chronic illnesses have periods of being down. I get it too. Maybe even the anathestic could have had an effect too.
With all of it combined it is difficult trying to keep feelings and mood at a 'normal' baseline or elevated.
Im still trying / learning to deal with it myself. Of course there will be times we are really down, we have reasons to be. I try now to be happy, and find enjoyment in the smallest of things.
Some days, I'll hear birds tweeting outside and I smile, I breathe in the fresh air, I feel good to be alive and part of nature.
Some days I may do the same thing but I feel so disconnected and alone.

I don't actually know what mood I'm in right now, I feel I could swing either way. I don't even know what I'm saying lol...think that may be the medication. So I'm sorry if I've said anything that doesn't make sense or is odd.

Does anyone get times like that? From side effects of medication or even just health conditions, or combination, can say / do things and your not actually sure if you've just said / done what you did?

Mad glad bout the appointment. I hope the wait wont havee made things harder.

Reeny yes, I feel like that a lot.

I'm so hugely, inexpressably grateful for all the support shown to me on this thread. But I'm back in the headspace of not trusting myself to post anything at the moment. All I can hear is screaming in my head, and all I can wish for is the unmentionable.

End of April Mad? That's a bit rubbish. Have you suggested that you could be available for a cancellation? ( prob wouldn't help)

BM, one day at a time, you won't always feel like this even if you fear that might be the case.

reeny, that could so easily be your medication scrambling your brain. You are making sense at the moment though :)

I have had a lovely day, sat in the garden with a book and then a friend. I have seen a toad, a few bees, a ladybird and a June bug. The magotty dead blackbird was a bit grim though. All in all, a day that made me glad to be.

Just switched on sports relief, and it's triggered off a thought I've sometimes thought about. Young carers.
I need lots of help to do every day simple tasks, my partner and mum help me. (my mum is getting older she can't always do it, plus it not fair relying on my partner do much as it is bringing him down)
But what am I going to do about my boy when he grows up? I don't want to put that on him.

How old is your DS?

I can relate to your worry, even though I don't need as much physical care as you.

It amazes me what some kids do, and how much they can cope with, and then scares me, the cost...

kitten You sound uplifted and uplifting...

He's nearly 11 months old. I know I'm already thinking about it. I actually did think of it too before I got pregnant too.
When he's older enough maybe I could suggest a young carer support group to him if he ever needed to chat to other young people about having a disabled parent.
I know it's a while yet, I just wonder how I will be able to keep a check on him and how it affects him. Maybe I could ask the school he will go to, to bring any pointers to my attention if they notice anything.
A few years yet, but I can't help think about it and try be prepared or have an idea how to deal with it.

Even if it's little things like dropping something I can't reach, or needing a drink but unable to get it. Do I just not ask him? Just leave it.

Or things like a meal, or if I have a fall .
Or worse if I become seriously unwell suddenly.

Of course I would never expect him to do personal things, I'd get my mum to help me wash myself or my partner.

I think reeny that as he gets older you will find the right path for him and you.

How is everyone today? Am going to attempt a garden centre. (cue dramatic music) I reckon that I can just sit down on the edges of the stands they use. Bit worried about queuing but dh can do that for me.

Hi all,
Well done for attempting the garden centre, badkitten hope it's not too busy.
reenypip it's amazing how children cope and adapt, my eldest is very helpful he's always asking if ii'm ok. The only time they've had the odd moan is when I've missed school shows etc or because I can't drive at the moment, it's hard to get them to places.
mad glad you ve got your appointment, crap that's it's so far off, and you've waited so long though.
breatmilk hope the pain is getting better and your managing to rest, not easy when you have little ones I know.
I went to see Anne last night with my mum and dd's coped pretty well till the end couldn't keep my balance as so many people moving and shoving. Really thought I was going to end up on the floor had to grab onto a wall and wait for everyone to go, then because it was late and I was tired walk back to car was awful like walking on a moving ship.

Very difficult end to your evening LGR.

I made it got rather concerned when I had to sit down before I'd even made it to the plants! But after that, I really paced myself, sat down lots. We abandoned my planting plan as it was too hard work to find what I'd envisioned, so I just chose plants that I liked the look of :) dh has been under my watchful command this afternoon, while I sat on the ground and put plants in the holes he dug. So all in all, successful.

kitten What a brave day for a garden centre trip... must have been heaving! Glad you managed... are you going to try and get back out into the garden again tomorrow?

largeglass Equally... sound like a brave outing. I know that feeling of trying to keep going when so tired and finding it hard to keep upright.

reeny It'd be good to hear how other mums with older kids approach the sorts of questions you're asking. I get the impression that there are a lot of people on here with much such experience.

I'm finding the pain levels decreasing and am becoming more mobile, though my left arm is still very stiff. Depressed, though. But then, I've always been depressed :(

I had a wonderful day today. I met up with old university friends that I haven't seen for 17 years. It was just like old times, really lovely to pick up where we had left off. I did have a an allegedly decaf cappuccino that made me feel a little wobbly, but I ignored it and the feeling passed.

Dd1 is out seeing The Hunger Games with friends this afternoon. I know that I'm going to have a hard time getting her to bed tonight. I really dislike the concept of those books, but she has assured me that everyone in her Y7 class is going, and she really really wants to go. As she has already read the first book, at least the film will have no nasty surprises. Dh is out tonight, so I'll be going to bed early, probably with dd1 beside me.

I found the hunger games book ok mad, not as brutal as I'd feared. Dd really wants to go and see it, but she's not gone to the cinema with friends before, and although I am happy, she is not quite so brave as its a train ride (and a longish walk) away. Lovely to meet up with friends :)

BM we got there quite early so it was not desperately bad going in. Utterly heaving by the time I'd chosen the plants! Am glad the pain levels are decreasing for you. Keep hanging in there.

My husband's mum had MS, and her form progressed rapidly, so she was in a wheelchair before he was born. This was in the late 60's, when disabled people were not supposed to have families. The doctors told her to terminate her pregnancy, but she refused. Needless to say, she went on to have an uncomplicated pregnancy and labour, and delivered a healthy son. She already had two children that were 10 years older, plus a supportive husband.

Dh did have to help around the house a little more than average, mostly things like running shopping errands when he was a teenager. He certainly did not resent it. He just loved his mum, as any child does. For him, having a mum in a wheelchair was totally normal, and his childhood was happy and stable, which is more than many people can say. As parent, if we can provide those things, then we have done our jobs well.

Mad comforting words about your MIL... thank you. And yes, I'm familliar with the 'alleged decaf' phenomenon... whereas I usually find caffeine really helps my heart (nice excuse at least), during pregnancy I found that it made me quite dramatically vomitty. I remeber at one point having to make a hasty exit from a Pizza Express because their latte was only pretending to be decaffeinated.

I was looking up old friends online this afternoon, just to keep myself busy. And I learned that a friend I'd not seen for about 15 year has just died, of a serious yet treatable illness which killed her because she's living in a country in which the medical care just wasn't sufficient. Reading that made me feel so sad, and yet so grateful...