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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 · 05/04/2012 21:16

Backpack

Madsometimes · 05/04/2012 21:34

That's a really difficult one for me, Backpack. I had children knowing that my condition was genetic, and that I had a 50% chance of passing it on. My dd1 has my condition, and dd2 is unaffected.

I do feel optimistic for my dd1's future though. There are medications which slow the progress of the condition, and the surgery is much safer now than it was 20 years ago. Hopefully dd1 will not need surgery for another 20-30 years, and even then it should be valve sparing because she does not have the bicuspid aortic valve that I had. I do feel guilty when dd1 gets frustrated with her appearance or lack of sporting ability, but I know that she is beautiful and that very few people ever become sports stars.

In the end it is a difficult and very personal decision.

BreastmilkDoesAFabLatte · 05/04/2012 21:44

Mad Thank you for such a brave, honest answer Thanks

[emergencychocolate]

BackPackBackPack · 05/04/2012 22:49

Breastmilk

BreastmilkCrucifiedALatte · 06/04/2012 13:10

Oh Will you excuse me a rant?

I've just seen myself naked again. And now that the swelling has gone done... well, it's all now even more visible than straight after the surgery.

Happy Good Friday :( Shame it was only nail marks that Jesus redeemed as fashionable.

Madsometimes · 06/04/2012 20:51

Rants are fine, that's what this thread is for.

I'm back home from my break. Yesterday I did far too much, and needed a nap at 6 pm Blush. It's nice to get away and nice to be home.

BreastmilkCrucifiedALatte · 06/04/2012 20:59

Well, I'm aware that your scarring etc much be far more visible than mine. Thanks for having the generosity of spirit not to spell it out...

I'm glad you're safely home. Will your DH take over for the weekend to give you a bit of a rest?

BreastmilkCrucifiedALatte · 07/04/2012 14:07

It's quiet around here this morning. How's everyone doing? Busy and full of energy, I hope...

Original poster
ohyouBadBadkitten · 07/04/2012 15:43

Lol at full of energy!

This morning I lost the plot Blush dh did the shopping. He had bought some fairly random things we didnt need and missed out somethings we did but the icing on the cake was I'd written down 'malden salt' for a salted caramel chocolate tart im making tomorrow. he bought sainsburys rock salt. He said the salt I'd asked for was flakes. So he chose the one he bought Hmm I yelled at him (I never shout), he yelled back and went back to the shops while i sobbed. I wasn't really yelling at him for being such a doofus though, I was yelling at my frustrations of not being able to go shopping myself and handing over the control to someone else.

Had a better afternoon :)

How about you BM?

OP posts:
BreastmilkCrucifiedALatte · 07/04/2012 16:14
BigFatSpider · 07/04/2012 16:47

Hello folks :)

10 days post-op for me now and just about coming back to life - run out of the good stuff (tramadol, oxycodone and cyclizine) and just about coping with OTC meds, but recovery not much fun. Managed a quite spectacular fall a few days ago, lost my balance on the crutches, twisted as I fell and destroyed a plastic storage box, gouging a 10" laceration from hip to buttock. Worse thing was I was trying to get off the commode, so had to wait on the floor for DH and DM to come and rescue me as I lay flat on my back with my knickers round my ankles... Blush Not dignified.

Anyway - off to catch up and see how you're all doing - sending happy thoughts :)

Original poster
ohyouBadBadkitten · 07/04/2012 17:03

Welcome back BFS :) nightmare fall! Which was worst hurt? Your pride or your body?

BM, how dare the tescos chap deliver the wrong chocolate? Shock I think it's hard being the dh in these circs, I have to remind myself that it is hard for dh too, I'd hate to be in his shoes having all of the worry and having to handle extra stuff. I'd def rather be in my position than his.

OP posts:
Madsometimes · 07/04/2012 17:14

Hi BigFatSpider, I'm glad you got through the op well. I remember you were concerned about the GA. I hope the anaesthetist mixed a lovely cocktail of drugs for you Grin.

Ouch, your fall sounds really painful. Accidents are the last thing you need when you're not 100%. Lack of dignity kind of goes with the territory, but it doesn't make it any easier.

BreastmilkCrucifiedALatte · 07/04/2012 19:01

BFS Welcome back :-) I'd offer you a hug, but it might be a tad painful.

I'm really sorry about the fall... IME such loss of dignity tends to magnify the pain by at least a factor of ten. Are you managing with the crutches OK now?

Madsometimes · 08/04/2012 08:50

Today I'm feeling a bit down because my skin is just terrible and has been for the last few weeks. I have always had acne even though I'm nearly 40, and it is as bad as it has ever been. I'm aware that this month I have had a hormonal shift, but I don't know why. I've been having 25 day menstrual cycles since surgery, but this months is longer, and more like my normal cycle. Unfortunately my pre surgery skin is back too Sad.

Original poster
ohyouBadBadkitten · 08/04/2012 08:51

Happy Easter everyone :)

OP posts:
Original poster
ohyouBadBadkitten · 08/04/2012 08:52

:( mad, that is rubbish.

OP posts:
BreastmilkCrucifiedALatte · 08/04/2012 13:47

mad I'm sorry. Really something you don't need.

Happy Easter to everyone too [busmile]

BackPackBackPack · 08/04/2012 20:29

Happy Easter everyone [busmile]

:( mad.

How is everyone else doing?

I'm not doing to good I fell down the stairs again [buangry] and now my Sciatica is playing up [buangry] I was supposed to go away for a few nights with DP and DD today but as I can't walk through Sciatica I can't go and we have had to cancel.

Madsometimes · 08/04/2012 20:46

Oh Backpack that is completely rubbish. If anyone deserves a few days away it's you.

I was just having a whinge earlier. I'm fine, I slapped on loads foundation. I'm not really one for wearing makeup, but it does boost confidence on bad skin days.

Original poster
ohyouBadBadkitten · 08/04/2012 21:30

Not good backpack. Is there anything you can do to make the stairs safer? I'm really sorry about your trip away.

I'm ok. Went to church this morning. Sat through a lot of it but it was nice to go. Lovely dinner and have been lying on the sofa vegging out.

OP posts:
BreastmilkCrucifiedALatte · 08/04/2012 21:35

BackPack Really sorry about the cancelled trip... as Mad says, you neeeeeded it. Is there anything special and less mobile that you could do at home tomorrow instead? A really nice breakfast in bed, or sparkly toenails? Not the same, though, I'm aware.

I'm getting down about everything here. I ended up perhaps unwisely telling DH's colleague that I was upset by the way she ridiculed my illness (she actually said a lot more than I mentioned here) and she has now retaliated by telling every possible mutual acquaintance about me and the surgery and about what a vile and evil bitch I am. I feel as though I must either never leave the house again or must never speak to another human being again. But then I've probably always felt a vile and evil bitch. My friend told me that I was before she ended our friendship just before the surgery, too.

And I'm supposed to be back to work on Tuesday. I don't feel ready, can't bear the prospect of interpersonal contact, am afraid of the consequences of taking more time off yet am simaltaneously afriad that by going back before I'm ready I will upset someone else.

Rant over. I'd just wanted to feel miraculously better for Easter, I suppose. I've been ill for too many years and I desperately long for an end point that I know will never come this side of heaven.

BackPackBackPack · 08/04/2012 22:03

We have had another bannister put on after my last fall (the reason the LP shunt failed) I was told if I couldn't manage the stairs it means moving from the house, We have only been here 6weeks tomorrow and I love my home I don't want to leave it :( We have put our mark on this house and made it our home instead of private landlord's that we have been used to, its lovely to walk in and see our colors and our furniture.

I found make-up boosts my confidence. Pleased your feeling better now.

We are going to play board games and have family time and keep the doors locked so no-one bothers us. We have all of the nice food for the few days away so were going to have a few days stay instead :) DD has piled all of the board games up that she wants to play.

Breastmilk I don't know what to say I'm [bushock] how someone can say that to you. Don't hide away because of her hold your head up high. You are really not a vile and evil bitch you are a loving caring women who is an inspiration :)
I understand how you feel about wanting to be better, you will be soon just don't let other people drag you down. If you do upset someone when you return back to work if they are true friends or know you they shouldn't mind. If they do f**k them. If you feel not ready could you work from home or ask your consultant if he will do a letter?

BackPackBackPack · 08/04/2012 22:14

Just to add we now have two banisters on, One on either side of the wall, every stair is covered by the new banister as the workman put it on.

Madsometimes · 09/04/2012 11:37

Bakpack I'm glad you have made some adjustments to your banisters, so hopefully this will prevent any more falls.

BM I'm sorry that you are so down. If you do decide to go back to work tomorrow, try and phase your hours back in slowly. Lots of people who have had my op start off with four hours a day, and then gradually increase them as they feel stronger. I have the greatest respect for anyone who is able to work when they still have young babies and toddlers, even those without health problems.

I know you are worried about snapping at well meaning but tactless colleagues. No advice really to give here, except that I find that developing a thick skin helps. You could gently remind Carpet Bowls people that you are not 80, and that the underlying causes for heart problems in young people are quite different to the elderly. However, you would probably be wasting your breath, so ignore, ignore, ignore.

Whether you go back to work or not, try and get out for a walk every day for at least 20 minutes at a brisk pace. Build it up to 40 minutes over the next few weeks (preferably without the buggy to push). First of all do walks on the flat, and then add in hills for extra challenge when you are ready. I found that walking really did help my physical recovery, and was good for my mood too.