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?

BM - I've heard sometimes CBT can be helpful - not to cure fatigue but to help people live within the constraints of it. I hope you here from the fatigue specialist soon.

Thanks for helping me see this more positively.

Certainly, with children, it's good to look forward to a significant life expectancy. But at the same time I can't stop wondering, worrying about next month, next week, tomorrow... will I be able to get out of bed? who will be able to help me with the kids when they're not with the childminder? what about work?

The latter is the big one really. In the grand scheme of things, certainly, losing my career is the least of my worries... and unless a miracle happens in the next week or so

I'd love a glass of . But I've had some valium already today and the last time I mixed alcohol with any form of mind-altering medication was the time 15 years ago that I emailed several of my undergraduate essays to Tony Blair and Bill Clinton . If I were to email equivalent such work documents to David Cameron and Barack Obama... the effect on my career... well... at least you made me there.

x-post with kitten... wow... tomorrow! I do agree with you. I must prefer appointment dates provided at short notice, simply on the less-time-to-panic basis. Good luck

I agree, too, that CBT could be really useful. I seem to know half a dozen people training in it at the moment, too... so may be able to find someone who comes recommended.

OYBBK, such brilliant news that you were thought of when the cancellation came up - Your GP working magic with her chasing skills? It sounds like the appointment is well timed too if you are starting to feel unwell again.

It must have been my gp :) or otherwise perhaps I was about to breach some wait list time or something. Whatever the reason, it is good :) does cause a few hiccups in tomorrows plans, but that's just how it is.

BM - that's really good news. I hope the fatigue dr can help you soon. Might be worth letting him know that your cardiology dr says all is ok and not contributing to fatigue. CBT sounds promising. Also I think that chronic fatigue can be managed by a graduated activity programme. The specialist should be able to refer you I suppose.
Your DCs are only little so I can imagine that it is difficult as that is the most physically tiring stage ( we have moved on to answering back and the emergence of Kevin the teenager!). You will cope though. You have so far.
Also be kind to yourself, it will take a while to get over the psychological aspects of this difficult time. I suspect the emotional side of things will only hit me after I know things are better, if that makes sense. Have a tomorrow instead of a Valium.

Backpack - hope you are ok today. I have everything crossed that your IH also stabilises during pregnancy. All the best with you GP tomorrow.

Kitten - great news and no time to worry. All the best for your appointment.

I have had a pretty good day. Very tired this morning so just relaxed til this afternoon when the Olympic torch was heading our way. I went and saw that and even managed to join in with the choir I joined earlier this year when I needed to get out the housed and do something after my stroke. Can't believe I managed that just 10 days after my op. I really thought I would miss it. Was a bit worried about standing in the heat and feeling funny but managed to stand next to part of the stage so I could strategically lean! On the other hand my foot problems are really painful, but I suppose I can't have everything !

Breastmilk that is good news. I also hope the fatigue DR can help. I don't know if it has been mentioned before but have you been referred to pain management? The might be able to help with the pain you are in.

Hope your appointment goes well with you tomorrow OYBBK.

I can't sleep through the pain in my head and shunt in my abdomen as the pain gets worse when I lie down :( I'm so tired but the pain keeps me awake. I'm tempted to take my morphine but I just can't do it. I can't even lie down but I think it will be worth it. My Surgeon said he does not recommend a pregnancy as it could speed my sight loss up and I can't have surgery whilst pregnant as he WILL NOT do it and he is going to speak to my GP as I'm being silly again.

My Surgeon is just like he was last year. I don't know why I agreed to see him a few weeks ago, Yes the other Surgeon couldn't help but he never spoke to me like that. I'm unsure if I want my surgeon to operate on me again. I knew he wouldn't last being all nice. Its MY body if I want this baby I will have it. It might be my last chance to actually see a positive pregnancy test. This baby might change a lot of things, if it does not it will always be loved no matter what, everyone in the family wants this baby, some family members say its a gift from Granny. Granny always wanted DP and I to have another baby before too long just to get some happiness back in the family :)

I understand I could go blind while pregnant and not see my babies face and I would hate that but I could go blind anyways. My body thought this was the right time, so who am I to say its not the right time?

I'm dreading tomorrow incase the GP says its to dangerous to have a baby, I want this baby so much. DP has said I should do whatever I feel is the right thing to do.

I hope everyone else is doing well :)

"My Surgeon said he does not recommend a pregnancy as it could speed my sight loss up ... he will speak to the GP as I'm being silly again"

That is not an acceptable attitude. Irrespective of the merits or necessity or safety of sorting your shunt out, if the sum total of the added risks is an acceleration of your inevitable sight loss then he should not be pushing you towards termination. The law allows women to abort on the grounds of the potential illness or disability of themselves of the foetus... however, the law is based on the 'pro-choice' principle that it is a woman's right to choose. Your surgeon has overstepped his remit, and significantly so. Certainly, he has a duty to make you aware of the risks of your pregnancy. But ethically, he should only be advocating termination if the pregnancy is likely to kill you or if he thinks you may lack the mental capacity to understand what pregnancy entails...

You are not being 'silly again'. You have made a mature and thoughtful and in my opinion a very, very brave decision.

Congratulations back pack! I think your reasons are completely understandable and acceptable.
When I found I was pregnant I was awaiting more surgery and also I had just come out of a long hospital stay after having meningitis. I was so happy and felt so lucky that I was pregnant. Best decision I ever made.

Been in bed and house a lot recently, but I managed to get out earlier and see the Olympic torch :-) I even got to hold it and my baby boy touched it :-)

Not sure what to say about today's appt. it raised far more questions than it answered. Consultant thought that although I do have tachycardia, that needs to not be there, it shouldn't be creating the symptoms I'm getting. He thinks it may be a blood pressure thing causing thoseso i need more tests to find out what's going on before he decides what to do. Then he listened to my murmur and called in an echo technician there and then to do an echo. Technician reported back to him and the consultant then came in with a echo guru who spent forever looking from different angles. Between the 3 of them they spent over an hour looking at my heart. No conclusions but some interesting things apparently showed up that may or may not have been something.

Anyway the upshot is, the consultant thinks the murmur is significant and may be causing my raynauds symptoms, which may not actually be raynauds after all but something to do with my circulation. If its a shunt between the two sides of my heart like he suspects then they can close that. Probably helped that my hands were blue despite there being no aircon available and it was boiling!

I need to have a tilt table test and a TOE, plus possibly an mr.

I was really pleased at first to have a possible solution to it all. Now I'm just and a bit tearful because it's so unexpected. More tests and no early route to feeling better.

Thank you for your very kind post Breastmilk.

Reenypip if you don't mind me asking did you have surgery during pregnancy? I'm pleased you made the right decision. I believe the decision DP and I have made is the right one for us :)

OYBBK did the Consultant say when the tests would be done? I hope they are soon.

I spent over an hour with my GP today. He explained all of the risks but as I have already looked into it all I knew some of them. I have been referred to an obstetrician as I will be classed as a High risk pregnancy.

My GP is unhappy at how the Surgeon spoke to me, the surgeon also told my GP the same, My GP has made a complaint on my behalf and referred me to a new Surgeon who he knows personally.

I was very surprised to get a phone call today to ask me if I could go in to the hospital to see the new Surgeon. This Surgeon is wonderful, he explained the risks of pregnancy and IH. He is also recommending weekly LP's if I need it.

The Surgeon did a LP on me today and he did it on the 2nd attempt under a Local Anesthetic :o I was so pleased with how he managed to do it, I was in the sitting up position instead of lying down so I don't know of that has helped. There also was not a nurse in the room with us, It was just me and the surgeon so I was not so nervous as usually the Dr's and nurses talk it through with each other. He said as the opening pressure was high I will be back in next Friday and we will have a proper chat then unless I need him sooner and he will get me then.

Hi backpack, glad your GP was helpful and also that you have been referred to a new surgeon who sounds like he's a nice person.
No I didn't have surgery during pregnancy.
When I was pregnant I was also high risk. I was at the hospital (pregnancy related)sometimes every day, or a few days a week and sometimes an inpatient. They even offered for me to stay in the whole pregnancy.

This week met with urology department again. As I am still unsuccessful trying to Catheterise myself, they suggested a supra pubic catheter to me. The difference being its permanent and they would make a hole in my belly and connect it to bladder.
But I'm unsure of this at moment. And they agreed to keep an eye on things and wait til my spine op to make a decision. In the mean time, they want me to keep trying.

I'm hoping infection is on its way out, much less painful and looks cleaner.

OYBBK, I'm not surprised that you were feeling emotional after yesterday's appointment. You went in expecting to talk about your heart rhythm, and had a whole load of other things thrown at you. It also must be very frightening when you go for an echo, only for the technician to get a doctor in for advice, and then a second doctor coming in too . It must have been horrible having the three of them gathered around a monitor with you just lying there, perhaps wondering what was happening.

As you know, I was nervous before my TOE, but it was not bad at all. You have an iv for the sedation medication, and also for the bubble test. The echo bubble contrast is just saline, so it does not feel unpleasant. I haven't had an MRI or a tilt table test. I have had a CT scan, and that uses x-ray contrast. The x-ray contrast helps visualise blood vessels, and it does make you feel a little flushed, and gives a strange sensation of needing to pee, which only lasts a second. The strangest thing about the CT is that the injection is done remotely by computer, although you are told that it's being done via an intercom. I think MRI's sometimes use contrast, but I don't know if it's the same stuff.

Your new cardiologist does seem to be very thorough, which is good. If it turns out that you do have an ASD, then as Ginger has shown, it is treatable. It does seem that finally you are not going to be overlooked anymore, which can only be a good thing.

Backpack, I'm so pleased that your GP was encouraging. It's great that you have started off well with your new surgeon. Yes, your pregnancy will be high risk, and a long road to travel, so I'm glad that you now have a supportive team caring for you.

kitten What a day! I'm guessing you didn't get back in time for everything else you'd needed to do?

I'm sorry this is turning into more complicated than a mere ablation-job. But I'm glad that the EP brought in echo-guru straight away... it would have been easy to stick you back on another 18 week waiting list for it.

From what they're saying about possible structural heart defects, though, it sounds as though this may not be the EP's domain. Will he continue to see you, or will you be referred on again?

It seems rather as though you've attained the status of 'an interesting patient' or 'a challenging case'. I don't know if others have noticed this, but I've often found that whenever I develop a particularly difficult-to-unravel medical problem, I've had fewer difficulties with delayed appointments and lost notes.

BackPack Really encouraging that the new surgeon saw you so quickly. The weekly LP sounds a good idea... it's not going to cause any harm to your pregnancy, and should keep your pain levels down. Will you be having to travel long distances to see him?

Reeny How did you cope with the pain during your pregnancy? I can see why they'd offered you to stay in hospital... during both pregnancies I found all the to-ing and fro-ing to appointments exhausting.

Are you any further forward in thinking about the supra-pubic catheter? A friend of mine did have one years back, but I didn't think it was a sufficiently useful anecdote for your thread. All I remember is that she was grateful for it as it removed the need to self-cath (like you, she had tricky anatomy for it) but she did get some pain from the site of the supra-pubic.

x-post with mad (eeek thats four in a row...)

I've had an MRI and tilt table. I think they only use contrast on the MRI if they suspect coronary artery disease... mine was done without. Certainly, though, empty your bladder beforehand... it takes an hour and a half or two hours and if you move a muscle they have to start from the beginning again, but they can give muscle relaxants or sedation if you think you might flinch. The tilt table, though... well, close your eyes and pretend you're at Alton Towers. Can't believe I've had medical investigations she hasn't.

I just hope you can get them all done soon.

Hi
OYBBK - I think your Dr sounds thorough and pro active, although I wouldn't have enjoyed people discussing stuff about me either. It does sound as though he has a sensible plan though and that you are on the way to getting some answers.
When I went for my contrast echo that showed the hole I was really expecting it to be normal, or show a tiny hole that they wouldn't recommend closing. In fact I had a PFO and an atrial septal aneurysm. It was a bit scary to see bubbles crossing from one side to another but it didn't take me long to feel glad that there was something that could be fixed and that doing that would prevent stroke. I then had lots of wobbles about whether closing it was the right thing and if I could cope psychologically with something in there. ( my ideal solution would have been to have it stitched up but by a percutaneous procedure but that doesn't exist as an option - at least not in the UK!)
Less than two weeks later I really do feel ok. Still tired at times but I do feel it was the right thing to do. I can't advise about a TOE as was asleep and have not had a tilt table I'm afraid. I have had MRIs of my head - the only thing I would say is they are very noisy! Not good when I had an extreme headache!

Backpack - I think your new surgeon sounds great and you obviously have a very supportive GP. I hope you are feeling ok at the moment.

Reeny - glad the infection is on it's way out. Sorry to hear you are not able to self catheterise. It is a hard decision to go for a supra pubic catheter. I guess it would be useful to talk to others who have one to find out more.

Hi Mads and everyone else. Can't believe the lovely weather. Hope you all have a good weekend.

Can I ask an AIBU type question? Would you all be honest with me if I'm being ridiculous?

I've posted on this and other threads about how and why antidepressants don't help and don't agree with me - and my GP agrees. However, 15 or so years ago I took fluoxetine ie Prozac which did nothing for my mood, gave me constant nausea and nasty headaches but did give me very significant surges of energy - I came off it because at the time I needed help with mood rather than energy. Am I being daft to consider asking my GP to go back onto it simply for the energy boost? I mean, after two rounds of morning sickness I think I've learned a bit about nausea, and I can't imagine the headaches being any worse than my existing pain.

Am I being daft?

Sorry BM, but I have no idea! That sounds like the kind of thing that you need to discuss with your GP. I'm sure it will not be the weirdest question that she has been asked.

Have you managed to get out and enjoy the sunshine at all? We have been looking at horses in a field this afternoon and dd1 got stung by nettles, so maybe sunshine is over rated.

Not daft at all. It was quite a while ago and may not necessarily have the same side effects now. How long did you take it before? You would need to give it a good six weeks or so to see if it helps I think. I took it ages ago when I was very down after my first husband left ( after an affair - long story, horrible man!). I found the side effects got better and they made me feel generally more positive. To be honest earlier this year I wondered about going on them again, not because I felt particularly depressed but because I though they might help me cope with it all better. I didn't though, mostly because I started taking a different antidepressant in a low dose as it can help migraine, which at the time was though to be my diagnosis.
I also don't think it would do you any harm and let's face it anything is worth a go. I would go and talk to your GP about it.

Thanks for the reassurance. I think I will broach it with the GP, at least.

Last time around, I took Prozac for around four months... so probably long enough to ascertain long-term effects. But back then I was just into my 20s and impatiently unwilling to put up with feeling headachey and pukey - despite my depression I still had the energy for uni, volunteering, endless church activities and a two hour run each morning, so didn't really need the extra energy which Prozac provided. But now, a bad head and pukeyness sound like a small price to pay.

It's got to be worth a chat at least BM.

I've had a cardiac MRI before but he said that one wouldn't show up what he's looking for. No idea why, they used contrast then.

I didn't feel too bad at all when I was having the echo, it was all very interesting and they included me in the discussion and answered my questions. It was all done in a 'this is fascinating' atmosphere.

Wasn't til mid way through the evening when it suddenly dawned on me that it was my heart everyone was talking about. I feel rather shell shocked today, it's been rather a tough week for several reasons.

OYBBK, I'm glad the doctors talked to you during the echo, so it was not too scary. I hope that you are being good to yourself today after your tough week .

A small milestone for myself today and yesterday. The warm weather has coaxed me into wearing tops that show my scar. They are far from low cut, but as my scar extends to the top of my breastbone, it is hard to hide it with anything but a very high necked top. My dsis said I looked fine, and it could almost be mistaken for a cleavage (norkily challenged). I just need to ensure that doesn't burn. I didn't feel people's eyes staring which was good.

That's a brilliant milestone Mad - well done :) that will make a big difference to your confidence.