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?

Backpack I'm so sorry about DP's gran. Given the extent to which your family have let you down, I can see why you regard her as your own. I'm so sorry.

Ginger Welcome! We'll all be rooting for you tomorrow. I also find hearing the quantification of risk a tough one... it just leaves me feeling so powerless. But all the research does show that a positive attitude does make a difference in keeping risks to a minimum. I'm a horrendous control freak too, especially before surgery or other medical procedures.

Thank you ladies.
backpack - so sorry about your DP's granny. How are things today?

madsometimes - yes definitely a control freak. All lists, clothes, instructions sorted now. It's sunny here so a good day. Going out for some tea with DCs later, then some tv to keep my mind off things. Can't imagine I will sleep that well tonight. Any tips on how to get some sleep before surgery anyone?

BM - perhaps I should change it to 99% chance of not needing open surgery or having a stroke. Silly statistics - no help at all really.

Great to find a thread like this, just what I needed. Thank you for your support.

The night before my recent surgery, I found myself at the hot chocolate machine at the local all-night garage... when I got home I realised that there was no chocolate in it and that I'd therefore paid £2.50 for tepid milk, so I had to go back for another chocolate orange. I don't know whether I slept much, but I had some calm and thoughtful music I find really meaningful and inspiring playing on repeat.

Anything on TV/DVD/iplayer or a book you could get yourself utterly absorbed in? I find cooking relaxing too, but my guess is you've already been doing plenty of useful and purposeful things...!

It is hard to sleep before an operation, but doing enjoyable things today is a good way to keep yourself occupied. If you don't sleep too well, then that is not a problem.

Have a nice meal, because you will either be fasting or eating hospital food over the next few days which normally equate to the same thing. Chocolate sounds good, now why do I have a sudden urge for a chocolate orange???

I must be a walking cliche because after my op, I really wanted grapes. Chocolate did nothing for me, but it didn't take long for the taste for it to return.

Backpack, I'm sorry, I really hope she pulls though ok. You must take care of yourself too though.

Gingerwine, I hope things go well tomorrow. Don't stress about sleeping too much, just be kind to yourself.

Thank you both. I have had a big meal to keep me going, although may now be a little room for some chocolate especially as you have both suggested it. Have had a nice bath and now watching a funny film with DH. That's virtually dr's orders! DC's are a bit unsettled but have gone to sleep now. Just made a list of all the people who have asked us to let them know how it goes. Good job phones can do multiple messaging!

Oops! That was meant to say that chocolate was dr's orders! Oh dear. Am losing it already!! Thank you all.

Hi ginger wine, good luck for tomorrow, I'm having an op tomorrow too. Only a minor one though so not too worried.
Had my date through for my breast surgery next month too.

I'm not feeling too hungry but I better force something down me or otherwise I will be heading to the hospital all light headed and dizzy.
Leaving at 6.30am in morning, to get there for 7am.

Hi reenypip - hope all goes well tomorrow. Leaving 6.45 here to get there for 7.45. Try and eat something. I seem to be managing that bit! Will think of you tomorrow.

HI Reeny and Ginerwine good luck today hope everything goes well for you both :) Hope everyone else is doing good.

Granny passed away yesterday morning :(

I'm off too see the Surgeon today as DP pointed out that Granny wouldn't want me to cancel the appointments so I suppose I better go and see them and see what is the plan now. The Duty Surgeon yesterday said that the plan could be cutting the LP out but going straight for the Bolt today. I hope they do a LP first as my head does not feel too bad. I suppose I better wait to see what he says, I need to be there for 12noon, so I would have missed my slot in Theatre which is good news but I also know Bolt's can be placed under a Local Anesthetic and it only takes roughly 15-20mins to place it.

I'm so sorry Backpack :(

I hope it goes well for all of you today.

Backpack, I'm so sorry about your dp's Granny. Your dp is being very brave, encouraging you to go for your appointments when you and he have had such a recent loss. I know the LP and Bolt both sound horrible. Are you still on for the shunt revision on Wednesday or does it depend on test results?

All the best to Gingerwine and Reeny for their ops today. Reeny I'm so pleased that you have finally had some dates for surgery. I remember how long you have been waiting.

I'm so, so sorry about DP's Granny. That your DP is still encouraging you to go through with the surgery... it speaks volumes about his supportiveness. Did he learn some of that from her?

And Ginger, Reeny, too... all three of you wishing you the best for today. Lots love

I'm not having Surgery this week as the Surgeon thinks its not the right time,. He has sent me home to think about what I want and phone him when things settle down. I have been offered Botox (when the NHS has it) to help with the migraines or have something Fusion (I wasn't really listening) which will be given over a few days, as the DR's do not want me on oral medication too long.

I never got a LP either today and I wont be needing one as I am getting a revision but it depends what and when. I'm pleased I'm not getting the tests

Dp is so like his Granny.

Hope everything is going good Reeny and Gingerwine.

Hope everyone else is doing good.

backpack - I'm so sorry about your DP's granny. What a sad time for you both. Good that you are not having anything done for the time being though. Look after yourselves for a bit.
reeny - hope you got on ok yesterday.

Got home yesterday evening after X-ray, echo and ECG were ok. Feel very tired and quite achy and my leg is a bit sore. My right arm and leg are all heavy and achey but that was the side affected by my stroke so I think that is just worse because of having a long day of medical intervention. Was so keen to get home though. Nurses were lovely but there's nothing like your own bed.
Apparently it went fine and they were able to put the closure device in. Was not expecting to have to walk into the theatre with masses of equipment and six big flat tv screens by the table with my name at the top! I assumed they would put me to sleep in the anaesthetic room and then move me! Theatre staff were funny though. Claimed they were planning on watching ER on the tvs!
They used a stiffer 25mm device as it fitted my anatomy better. They had been hoping to use a softer smaller one. I understand why but I am really struggling with the whole concept of having a 'thing' in my heart. Am really emotional and keep crying over my poor husband. Am so worried about the admittedly very rare but very serious risk of it eroding something important! I know I am lucky really but just had enough this morning. Now I've made my husband cry too. Oh dear.
Hope everyone else is ok.

If it's any consolation, I've also I really struggled with the thought of a 'thing' inside my heart too... it's a very vulnerable sensation. It was about 24 hours after returning from hospital that it all got too much for me as well. A mere eight weeks of hindsight feels insufficient really to advise anything... but honestly, it's such early days for you. Just do all you can to go gently with yourself, rest, watch TV, whatever gets you through. Could you send your DH to get you some flowers?

Thanks for the comments off everyone. Thinking of you too.
Sorry about the passing of DH granny.
Hi ginger, I've been quite tearful too.
Just going through a negative patch, fed up all my health problems, never ending.
Mouth/jaw op yesterday, but already have a start of a post op infection :-(
It's very painful, but when I compare it to my spine pain, it's really not as bad and it's just about cope able .
But mixed with all my other chronic health problems it can spark them off on top of things too.
Suppose to be having major surgery next month, but of this infection doesn't clear I know they won't do it.

Although not always on here, I do think of you all.

Hi Reeny Although you don't post on this thread as frequently as some, people do keep wondering and asking how you are... you're always in everyone's thoughts. I'm sorry you're having such a negative patch. And I'm sorry you've got yet another post-op infection. Will it really not clear in a month? Is the next surgery you mention the back op you've been waiting for...?

I'm having my weekly meltdown here. Still getting no further forward in chasing post-op follow-up with cardiology, and now feeling so ill that I'm frightened to be on my own with the DCs. And this morning DH and I were having a very conversation... whereas we'd been sticking our heads in the sand together about the likelihood of me loosing my job, today we began talking not only about that but the possibility of he leaving his job to look after the DCs and I. I should be grateful for his support, I know, but I just feel so :( that I'm failing him as a partner by being unable to look after the DCs without him and by being unable to support his career.

In some desperation, I found the number of the regional consultant dealing with fatigue and pain type issues... I'd been told by several people that she doesn't accept referrals of patients with complex pre-existing medical conditions or being treated by other consultants... but DH and I rang her secretary and asked if she would see me, not for any form of diagnosis or treatment but simply for some advice on anything I could do to prevent my illness pulling my whole family down. The secretary asked me to put the request in writing, and promised that the consultant would read anything I wrote. Does she realise who she was asking? Be careful in saying that or I might send a PhD length thesis complete with a literature review of publishable rigour I agreed to send a brief email, and confirmed that I understood that the secretary was not promising that the consultant would definitely be able to help, and confirmed that I understood the length of the waiting list. But at least said consultant is a female... I really wish I didn't feel so uncomfortable around men in such a capacity, but I can't pretend that I don't.

So, will compose agreed email, will endeavour to keep it concise and will endeavour to omit anything which reveals me to be an utter fruitloop. And I've just finished another whole bar of dairy milk Seven pounds I've gained since this surgery [oink]...

How's everyone else doing?

Ginger, Great news that your op yesterday went smoothly enough for you to be discharged on the day. I can also relate to feeling unsettled by having extra stuff in your heart. It is also overwhelming to get home after all the anticipation and stress of waiting for an op, anaesetic still in your system, all things that you know, but that cannot be expressed in words, so they come out in emotions.

For me, it was needing the pacemaker that nearly tipped me over, because it was not something I had fully anticipated. I can understand why you are feeling wobbly about having a different closure device, even though you understand the reasons for it. The feeling will pass though, especially when you get back to the normal you. I'm sure your children were delighted to see you, although if they are like mine they will expect you to be running around after them straight away.

BM, sorry that you are having a bad day today. I'm sorry you are no nearer being seen by a cardiologist. I can't help but wonder if you have been lost in the system somehow, rather than deliberately not seen, if not by a doctor then at least by techs for testing or nurses. Having said that, my formal post-op check was almost 3 months after my surgery, but I did go in earlier than that for checks and tests.

Reeny, get your gloves on to fight the dental infection. Hope it works out for you.

Tonight I'm going to be free. I don't want to be dehydrated for my TOE tomorrow. It's at 10.30, and I have to fast for 6 hours before, and can't eat or drink for 2 hours after. I hope I'm going to be seen on time all I think of is my belly. I don't think they will see any major ASD/PFO, I can't believe that there could be anything significant that was missed during surgery or previous echos. I'm sure I do have a small PFO, because I get migraine with aura, but not one that is bigger than the other 30% of people with it. I'm more worried about the test being unpleasant or them finding new problems.

Whenever I'm stressed, all I tend to think of is my belly, too... like everything else, I guess it's just a coping mechanism. But two hours after a (hopefully) 10.30 procedure that shouldn't take very long... sounds like the perfect time of day for a nice lunch and a . But seriously, I'll be thinking of you. I think I do appreciate how nervous you must be feeling. Though as you say, the likelihood of them finding anything new must be so minimal.

And thank you for encouraging me to pursue cardiology. I've just had an email with a date for consultant and technician follow-up. Sod's law being as it is, it's the one time of the week that neither DH nor DBestFriend can come. I daren't, daren't try and rearrange... eeek... time to Grow Up Breastmilk. I'll be doing this every few months for the rest of my life, so I might as well start doing it on my own now :( and at least I have valium...

I hope it goes well for you mad. All things being well, this time tomorrow it will be over and done with.

BM, what a positive thing you've done today! I hope that it is fruitful for you. When writing the email think about what you would like from the consultant and make that clear.

Reeny :( have you had the infection checked out - try and get on top of it as soon as you can even if it means being pushy assertive.

Not heard anything still, but I'm doing ok.

How nice the lunch is will depend on if I have a sore throat. The wine will need to be skipped for a few days, not sure how well it will combine with sedatives. Pretty sure I don't want to find out . I have a Spanish class I go to on Wednesday afternoon, and tomorrow is the last proper session, so I'm a little peeved that I'm missing it. However, I don't think going to it half dopey would be sensible, even if we do get home on time.

Good luck with your follow up, Breastmilk. I know how you feel about going on your own to appointments. Tomorrow dh is coming with me, because the letter said that I needed to be accompanied. He had to cancel a work meeting to come though, which is probably why he has moaned a lot about it being a waste of time. Next week I have a tech checkup, and I'm probably on my own for that. Luckily no more checks for a while after that.

I'm glad you are feeling well, OYBBK. I'm feeling well too, despite the fact that my mountain of appointments indicate otherwise.

Hello ladies
Thanks for your support. I know you are right and it is very early days. I am very impatient especially with myself. I will try and relax and enjoy being looked after. DH is being great. And my lovely best friend came round with some beautiful flowers. Some other friends have bought me a lovely manicure so that is something to look forward to. It is reassuring to know some of you also found it hard to adjust to something being in your heart. It's just such an odd concept. Did you have a similar device BM ? Sorry I haven't read all the thread, just some of it as would never have finished it before surgery it is so long!

Reeny you obviously have a lot to deal with so I'm not surprised it can get you down. Maybe you have some post anaesthetic blues too? I have some nerve pain from the side of my stroke but am lucky that it mostly only rears its head when I am tired or have done too much. It is fairly soul destroying though so have nothing but admiration to those who cope with severe constant pain. Do you have some antibiotics for that infection? I really hope you can get on top of it and can get on with your surgery next month.

Mad - good luck for tomorrow. Can't tell you what it is like as mine was done under anaesthetic. I do have a sore throat but guess that it could have been the ET tube as well. Goodness knows how they fit two tubes down there! I am sure they will give you a sedative to help you. I have friends who have had endoscopies and they often could not really remember much of it. I will be thinking of you. Let us know how it goes.

Backpack - thinking of you and your DP