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?

Re: going back to work when on steroids
Just to remember they can cause irritability aggression and paranoia. All in more subtle forms than one realises. And when tailing off one can feel low and achy.

I'm feeling a bit wobbly tonight. I think that BM will understand this, but whenever I have a hospital appointment due, I feel nervy beforehand. My appointment is in a weeks time but I haven't got a clue what the doctor will say. If I'm still in flutter, I think I will be recommended for treatment because it will have been four months. I think my surgeon wants it treated. I need to stay away from google. As the Litte Princess says I don't want to go to hospital.

Sorry I'm not being coherent and I can't even blame it on wine.

Two and a half months into my six month trial of prophylactic antibiotics for recurring UTI/kidney infections and I am on antibiotics for blood/pus in the urine specimen I gave today after I had some pain and burning this morning. I've been on antibiotics four times since the start of the trial, this is in the 2.5 months, so virtually half of it. I have to manage another 3.5 months before we are looking at surgery to remove the offending kidney, at least then when I do get infections, I won't have to try to deal with the pain I get in this kidney, which currently feels like a great big shark swam up and took a bite out of my right hand side.

Bloody steroids mask UTI symptoms until it's bad enough to really notice, by which time I am really sick. But can't have DMARDs until I have some sort of plan of action with my kidney, so have to have steroids to deal with the pain of inflammatory joint disease. Going to see GP this week for a reassessment of painkillers/support as I am slowly getting to the point of not coping with the pain right now.

Hello btw. Needed a whinge. xx

I do understand. It sounds as though you're grappling with not only the fear of the appointment itself but the fear of the unknown combined with the knowing that there is no straightforward or easy answer. I mean, you've said before (I think after your conversation with the cardiac rehab person) that your combination of pacing+beta blockers+warfarin means that you're relatively "low risk" or at least already in receipt of much of what would treat atrial flutter anyway... but I do know that there remains the possibility of getting a different picture from a different person. Are you able to have a glass of wine if it might help?

Thank you too (and to BackPack) for your support earlier.

Thanks for your support BM, and good luck for tomorrow, whatever you decide to do.

Yes, rehab nurse said that she thought my current treatment was enough, but I'm having wobbles in case it isn't, or EP wants a more interventional approach. My treatment is controlling the symptoms, but not the underlying causes.

I start rehab on Friday, and I'm really looking forward to that. What I'm not looking forward to about Friday is that dd2 is going on a brownie holiday to a PGL centre. I'm stressed about that because she can be very dozy. Yes I know it fosters independence and is good for children.

Bet you would never guess that my period has started .

Hi Rabbits and welcome to this thread. Your kidney problems sound like a nightmare, but you're in the right place to let off steam.

Thanks Mad. Glad your period at least held off for that first swim (or did it?)

And hi to funnyperson and Rabbits I'm really that I didn't see you posts last night - I wasn't intentionally ignoring you. I'm just putting the kettle on before DH wakes up. Do have a and keep talking...

I am going back today... or at least, have committed to using the next two weeks to phase back in whilst working from home. Cue scary music. But if I lose my composure at all it can only be via email.

Yes, AF held off until I was back from holiday, so all well and good there. I'm glad you are working from home and not going in for a few weeks. I'm sure you won't snap at anyone in emails but there is the telephone...

morning all :)

welcome Rabbits, good to have you here. What sort of IJD do you have?

Mad whatever the consultant would like you to have done, remember it is your body and entirely up to you as to whether you go along with his thoughts or not.

Afternoon all :)

I have been to see my Opath today and it was bad news :( there is more swelling(papildemia) at the back of my eye and if the Shunt was working fine it should have either stayed the same or at least gotten better not worse :(

I have had another test on my eyes, it shows more scarring and bleeds on the optic disk and my vision is deteriorating. I am not allowed eye surgery anymore as it wont work with the scarring :( So as my sight is going very quickly no more baby for us :( :(

I now have to phone my Neurosurgeon apparently quicker then the 2DRs doing it via letter to tell him the bad news, I'm dreading phoning the NS as I now know there is nothing else for him to do (He was only trying to save my sight). I'm trying to pick the courage up to let him know but I just can't basically my sight is going and there is no help. MY DP even though he thought he was being helpful said "you might aswell get the shunt out as its not helped, you just lost your hair" Its tempting to ask for the shunt out I was told I could if it don't work but that's giving in, I really want the shunt to work.

I hope everyone else id doing good as can be.

Not gotten a firm diagnosis on that yet BadKitten. Being treated with sulphasalzine (when the Urologist finally sends that letter confirming his agreement) and with steroids. Had issues since my first pregnancy seven years ago, got some damage to my right hip and ankle to show it, plus inflammation and other things that apparently tick the boxes for it. Working on the premise that if the drugs help, it is IJD, as other tests are inconclusive. They did think gout at one point, but that's a nope.

Hello Mad and Breastmilk (is that your preferred nickname? LOL).

Sorry to read your difficult news BackPack.

Oh BackPack

I'm so sorry. I hope you can get through to the neurosurgeon ASAP and have a constructive discussion about the shunt.

But please, in your desperation, don't jump to conclude that you'll never have another child. I know it's a complicated situation in every possible way and that you've got a lot to consider in making the decision about whether/when you TTC... but visual impairment is not in itself a reason why you cannot/shouldn't do so. I'm sure there will be mums on here who could offer you advice and hope.

Rabbits That sounds painful, in almost every possible way.

How old are your kids? Are you managing OK with them at the moment?

Please do fel at liberty to refer to me as Breastmilk... I sort of feel as though lactation is one of the only things my body can do properly, so I'm kind of proud of it.

I'm back at work now, albeit from the spare room upstairs. Getting there. It's OK...

Backpack, I think BM is right, don't give up on your dreams. Remember that no matter what happens you are still you with all of your courage and determination. Nothing can touch that, it might just get a little hidden sometimes. {{{ hugs}}}

Rabbits, I have psoriatic arthritis. We've hummed and ahhed about mtx but i am very reluctant because mine is def of the flare/remission variety.

I am def doing better faintness breathless wise. I still have bad moments. ( had to sit down in the multi storey car park on the way back from the cinema yesterday) but I absolutely have more stamina. Dd has been digging out her pond today and I could help her mind you I've triggered my back off but that's prob cos I've been pretty inactive recently. Dd has worked like a trooper, lined it all with sand, we've put the liner in and dd filled it up with the contents of our waterbutt. I am so impressed with her!

We are going to get some tadpoles and then tomorrow or thurs get some water from a wild pond I know. Dd is researching plants to buy. She also wants to make a hedgehog house?!

Backpack I am very sorry to hear that you had bad news today, and I also hope that your neurosurgeon can be contacted. Like BM said, do not make any hasty decisions about having more children. There are blind and visually impaired MNers who can help you. WannaBe springs to mind, and I am sure there are others

OYBBK made an interesting comment up thread about interventional treatments or even just tests, and how it is your own body, so you make your own decisions. I know that this is how it works in theory, but IME it is different in practice. I find that the HCPs explain the risks and benefits of treatment options in such a way that you feel like you have no choice but to go with their preferred option. Of course, they are the experts, and so their opinion counts heavily.

It's kind of the same experience as when the gas man fixes your boiler or the garage has your car. You may be presented with a range of options, but actually the decision is made for you.

They do weight it heavily mad but i guess what I'm saying is that ultimately it is still down to you. You can choose to accept that they may well know what is best and go along with it or you can choose to follow your own path. I think it is important in chronic illness to try and make things into positive decisions ie i choose to follow this very difficult thing the doc is asking me to do because I believe he thinks it will give me the best chance.

I think it is just a way of framing how you see things. I'm a bit crap at following that though!

And then there comes the question of what to do when doctors disagree, or recommend the opposite from one another, or when test results appear to show contradictory things... or when medicine just does not possess suffiicent knowledge to be able to provide clear answers or straightforward recommendations.

Medical science is inherently and fundamentally uncertain in tht it bases its so-called 'knowledge' on the empirical 'evidence' of what has happened or what has worked in 99% or more of cases in the past. Some of us will always fall into the 1% of patients for whom the test results don't seem to make sense, and some of us will always fall into the 1% for whom the standard treatments don't work. And when faced with that 1%, doctors can only be guided by their rationale, their experience, impression, intuition or best guess. And it's at that point that doctors will tend to disagree with one another, throw around various options or to leave things open to their patients.

Personally, I prefer a doctor to tell me honestly 'I'm not sure I can help you but we could do X or Y' than to suggest 'Let's try Z, it might work'... but I'm aware that's just me, and talking openly about the risks of my own death doesn't really faze me. But I think any skilled and compassionate doctor will understand each patient sufficiently to sense how directive or discursive he/she would like him or her to be, and what will most make the patient feel most positive about the decision made.

I think the gas man (or woman?) analogy is a good one. I just tell them please to get on with whatever they think will get me into a hot bath as soon as possible. Around 99% of the time, it works. But then, my boiler doesn't have a 1 in 100 000 medical condition with an unknown progression rate...

I would very much prefer a consultant to be honest too. The thing that made me trust my eye surgeon completely is when I told him I was scared and his very straightforward answer was 'I would be scared too.'

When they fudge around with the truth or don't tell me straight, that is when i don't trust them.

I find it difficult when doctors disagree or change their mind or say 'there is a remote chance you have condition x there fore I think you should go on medicine y which is for condition x'

Gosh 1 in 100,000! I'm quite common with my 1 in 5000 .

Medical risk is a horrible thing to think about. My surgery had a 3% mortality risk, but my aneurysm had a greater risk than the operation. Therefore although I had a choice not to be operated on, it was not much of a choice. My children visited me the night before my op, and once they left I cried. Then a few days later, when I was on the other side, I was helping other ladies who were crying before their operations. I still think of them now.

Having been through that, I have little appetite to face risk again. Given the choice, I would wrap everyone I care about in bubble wrap . Unfortunately, that is not possible and I have to face risk, whether it is medical procedures or children going on activity holidays.

or them going back to uni with a bike but no bike lights, bike helmet, or sam brown belt

Not much of a choice . My goodness. I can imagine seeing your children off the night before was one of the toughest things you'd ever, ever done.

I was probably fortunate in that rarity made it impossible accurate to calculate me any sort of percentage mortality risk. Numbers of any sort now terrify me.

Or in my case, crawling behind the sofa whilst I'm not watching. I guess it only gets more nerve-wracking with age.

These fears and anxieties about results/ops/pain/never getting out of hospital/what about my children/will these medicines work/how do I prepare for the risk of death are such an important part of any illness yet doctors don't really have a clue about that side of it.
Its because medical school is very factual and diagnosis and treatment orientated. There are a lot of facts to learn and get right. The best teams have specialist nursing or psychologists on the team who can be a bridge, assuming of course that the nurse is compassionate and caring and not just a manager on the climb. But best of all are the others going through the same thing. I too found my peers in hospital on the ward supportive and supported them.
Anyway lots of research shows that people who are ill can overestimate their own risk, and that those who are well underestimate their risk of illness, particularly cardiac illness.

After a bit one has to realise one is not dead, has somehow muddled through yet again, and move on with (wonderful) life and a few more tablets. Thats my approach.
The body takes time to heal, but generally speaking, these days, with the doctors help and a bit of rest and help and hugs from loved ones, heal it does.

Funnyperson you are absolutely right about risk perception being skewed by experience, illness or personality type. Underestimation of risk is a real problem in the young, and the results are seen on the roads when they get behind the wheel of a car .

IME the psychological side of having treatment in hospital was quite neglected, because the focus was on the physical. I think that is a shame, because cardiac depression is well documented, but I suppose funding constraints mean that it is a lower priority. It did contrast strongly to my experience after childbirth, where there was a strong focus on early identification of postnatal depression.

Interesting! Can you link to any of the research which says that. It sounds very true, and I'd love to have a read...

I think it's probably back to questions of risk, too. Most of the emphasis on PND is based upon the perception (which is largely disproven by research) that women with PND are bad mothers and will neglect or harm their children... people with depression associated with medical conditions and/or surgery are likely to be a danger only to themselves.

But I think it can be possible to find emotional support for oneself within the hospital system, though it does require being sufficiently articulate to ask, which can be hard when ill. Coronary care were able to arrange for me a side room so that I could have visitors after normal visiting hours, and the anaesthetist agreed to allow some of the pre-op procedures to be done via my GP and over the phone to cut down on the number of times I needed to visit the hospital. And when in the end it all got too much and I begged for a taxi home at 2am, the junior doctor was happy to prescribe as much sedation as it took to shut me up until discharge. But I think what's worrying is that I only got this through asking, and I know that a lot of people in my position would not have been able to ask.

morning all,
how is everyone today? I am being an utter wimp. I've got the dental hygienist this morning. As I've got sore gums I dont think she is going to be best pleased with me.