I have just been diagnosed with Cysts ... - British Liver Trust

British Liver Trust

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I have just been diagnosed with Cysts in both the liver and Kidney. Does anyone know How they treat this condition please.

Gjkas profile image
42 Replies

Really worried about this new diagnosis of having Cysts in the Liver and the Kidney. Also have Cyst on the Pancreas and blocked Bile Duct. Can anyone give me any advice please on what kind of treatment I can expect to be having .I know that I have to go back in hospital in 4 weeks time for an operation .They are going to remove my Gallbladder and whatever???. I came out of hospital about 3 hours ago. But I couldn't take in all what the Doctor was telling me. I would really appreciate any advice.My nerves are just about shot..

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Gjkas
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42 Replies

Hi,

We do have some general infortmation on liver cysts in our publication 'Benign tumours and cystic disease of the liver', here is a link:

britishlivertrust.org.uk/in...

However, we would suggest you find out more about what kind of cysts you have, and the operation they are suggesting. It can be hard to take this information in when you see a specialist, so you could make an appointment at your GP's and ask them to clarify and explain matters. They may be able to access your test results and notes.

Best wishes

Trust1

Gjkas profile image
Gjkas in reply to

Oh Thankyou so much.

I'll be going on the link you gave me right now. Then tomorrow I'll get my Hubby to make an appointment for me with my GP..

They went on about so much at the hospital,i didn't really understand what they were on about. And the fact that one of the Doctors knelt down at the side of my bed and was holding my hand made me feel even more nervous .

But Thankyou once again.

Wishing you a Happy New Year. Gjkas.

Bachien profile image
Bachien in reply toGjkas

Stress can weaken your immune system, please try not to.

Wish you can beat this

Gjkas profile image
Gjkas in reply toBachien

Thanks Bachien.

My immune system must be way down. I've got Chronic Fibromyalgia,Rheumatoid Arthritis,Osteoarthritis and Osteoporosis. But the Fibromyalgia pain have been so bad, im not sleeping properly even though I take sleeping tablets.

I really am Wishing, Wishing, Wishing that i can beat it. 😪

in reply toGjkas

You are very welcome. Hopefully your GP can clarify matters for you.

Best wishes.

PJmars profile image
PJmars in reply to

Write any questions down in case you forget to ask something important 👍

Hi Gjkas

Firstly please try not to stress out to much as we've all be there for one reason or another!,

I too have numerous cysts on both kidneys which my consultant has decided to leave alone for the last 3 years due to there small size in nature. By any chance do you know what size your cysts are?

Re removal of your gallbladder! Again try not to stress to much as these days it's a common key hole operation procedure and if all goes well you could be sent home from hospital the same day if your to undergone an operation. I had multiple small gallstones causing me to have an emergency operation which went well.

My recommendation is to drink plenty of water to keep your kidneys flushed out and to cut out all fatty and greasy foods to avoid any further gallbladder glare ups. In other words try adopting a 2020 healthy life style including some exercise! This was recommended to me 18 months ago and I've managed to lose 3 stone! However I do occasionally suffer with kidney pains when I dont drink sufficient water!

I'm going to say bye bye for now, but would suggest you try your best not to worry to much as we're all here to be by your side!

Happy 2020 by the way

Shropshire Lass ! X

Gjkas profile image
Gjkas in reply to

Thankyou so much for your help and advice. My Gastrointerologist has already told me that my Gallbladder has to be removed. I have numerous Cysts in the Liver as well as the Kidney, also Cyst on the Pancreas and Blocked Bile Duct.

My Mum had the same problem and it turned out to be Pancreatic Cancer.

Bless Her, She passed away 6 months after diagnosis.

I have numerous other medical problems and now this on top. I'm really struggling with it all. Thankyou so much for getting back to me. I really do appreciate it.

Bye Bye for now and wishing you all the best for 2020.😪.Gjkas x.

in reply toGjkas

Hi Again

Seriously try not to worry if you can.

I too have other medical conditions, growths in lungs and liver issues which have yet not been diagnosed! I get results on the 7th of Jan of 3rd CT Scan!

As my medical conditions have been under investigation for almost 2 years now, I've come to realise that worrying only made me feel worse and that its best to try a live your life the best way you can by improving to a healthy lifestyle which has helped me in so many ways, hopefully you'll give it a try.

I'm sorry to hear about your mum and trust your coping ok ?

Well nighty nite my friend and please take care

Love Trish xx

Gjkas profile image
Gjkas in reply to

OOOH Trish, Im really not coping with it all. I still miss my Mum and Dad so much. I've got Chronic Fibromyalgia and Rheumatoid Arthritis. Osteoarthritis and Osteoporosis. The Fibromyalgia pain don't let me able to get much sleep. I'm in constant pain all the time. I've got 2 Heart Valve's that aren't working properly and the Cardiologist said that they can't find a Surgeon that would do the operation anyway because i wouldn't survive it. Got C.O.P.D Angina and Asthma. Also got a 16 cm mixed Haitus Hernia ,Umbilical Hernia and a couple of other things going on. I just feel like I'm falling apart. I'm sorry for moaning and groaning about everything. I'm just so b....y fed up.

Oh,fingers crossed 🤞 for the 7th of January , I hope your scan results are all good for you..You seem like such a caring person.And you have your own problems to cope with.

Nighty Night my new Friend.

You take Care as well. Love Glo.xx.

in reply toGjkas

Hi again

And there was me thinking I had a few things going on and some you've just reminded me off!

I truly understand your concerns now that you've gone into more detail, I wish there was someway I could wave a magic wand and make thing right for you and many others on here who are also suffering! All I know is, life has ways of testing us all for some reason which only the spirits above know why!

Try and hang on in there the best you can!

Love Trish x

Gjkas profile image
Gjkas in reply to

Good Morning Trish,

How are you this morning. My Stomach is playing up. Do you know of anything my Husband can get for me from over the Chemist, just to calm it down a bit. I've got an appointment next Thursday at Gynae. I had a Uterine Prolapse back 14 years ago.It brought my Bladder and Bowel down Had a repair which was good for a couple of years.

Then it came back down again..

Gynaecologist said that he couldn't do another repair because it would involve my Spine and been as I've got Osteoporosis he was reluctant to do it. So we decided that i have a Pessary fitted. I have to have it changed every 4 months. So this is why I'm going to Gynae next week.

I'm not worried about all that kind of stuff. I just can't wait for them to sort my stomach out.

I'm trying to hang on the best way I can. But it's so hard to cope with it all. Things seem to be going from bad to worse.

You know Trish, some of the people on here are so nice and helpful even though they all have their own pain and trouble. One of our Admin gave me some good advice as well. I'm not very good on the internet and I get lost if i have to look for anything myself. But Trust 1 gave me a good link to go on..

Thanks for listening to my moans and groans. Hope that you have a good day.

Love Glo.xx

in reply toGjkas

Hi Glo

Cheers again for your concerning note! Unfortunately I cannot recommend any over the counter medication . I do take Omeprazole twice daily which is great for me. Why dont you put a request into your GP for some medication over the phone? You might be lucky.

I'm feeling ok today which for me is good as I'm up and down these days!

My fingers are crossed your able to get some medication for your tummy!,

Take care in the meantime

Love Trish x

Gjkas profile image
Gjkas in reply to

Trish I was on Omeprazole,but my Consultant changed it to Lansoprazole because he said that it was stronger. It doesn't make any difference .I don't think anything is gonna help,until they sort my Liver and Gallbladder out.

I'm glad you're having a good day today 🤞😚.

If I could get hold of a bottle of Arsenic ,I'd drink the whole b....y

bottle of it. That's how much pain I'm in. OOOOOÒH. 😭😨.Glo.x.

You Take Care.

in reply toGjkas

Hi Glo

Firstly less of this arsenic comment as I'm sure you really wouldn't want to be dessertng your hubby who's been looking after you all of this time so I'm taking this as a flippant comment!

Hopefully you wont have to wait long for your gallbladder removal which you never know may help towards relieving some of your liver discomfort!, Lets keep our fingers are crossed that your appointment comes through quickly.

Well nighty nite

Love Trish x

Gjkas profile image
Gjkas in reply to

Trish they aren't so worried about the Gallbladder now as much as the cysts in the Liver.

Why do you reckon that is.???.

Im getting really worried.

Nigbty Night. Love Glo.xx

in reply toGjkas

Glo

I cannot comment on your cysts in your Liver as I,'m not medically qualified! However I do know that some cysts over a certain size can be of a concern. All I can say is try and keep calm until you hear more from your consultant. You've already mentioned speaking with the BLT team who are better experts in answering your queries than me.

I'm hear to listen and comment when I can, I cannot advise on medications etc.

Please try and rest as best you can for now.

Love Trish x

Gjkas profile image
Gjkas in reply to

Hi Trish, been in hospital twice since I last text you. They were going to try and Lazer the blocked Bile Duct for me last week. But my breathing wasn't very good so they couldn't do it. I was so disappointed😪 because I'd been in there for a couple of days.

I'm having a Pre Admission Assessment tomorrow at Nevill Hall Hospital..

Perhaps I can find out then what they are gonna do altogether.

You Take Care xx.

in reply toGjkas

Hi Glo

I'm so sorry to read that you've been in hospital twice in such a short period of time. I'm sending you good luck wishes for your pre assessment today and my fingers will be crossed that everything goes smoothly.

Love Trish x

Gjkas profile image
Gjkas in reply to

Trish i didn't pass the Assessment.

My Heart is being a bit of a bitch.

Have to have another Heart Scan and then go see the Anaesthetist.

Then they would just take away the Gallbladder and sort the Blocked Bile Duct out.. If possible ???. But

they wouldn't attempt to do anything with the Kidney or Liver..

Thats about it really Trish..

We were in that hospital for 5 hours

just to be told this. 😥😪

They need to just throw me on the Trash Cart.

There's nothing in my body that works properly..What's the point of it all. This isn't just a flippant comment Trish..Im dead serious.!!!!!!

How are you doing. Hope you're okay.. LOVE Glo.xx

in reply toGjkas

Hi Glo

I truly understand your frustration with having so many things going on as you seem to take one step forward and two back.

I think you may be amazed at the difference you may feel once your gallbladder has been removed and your bile duct sorted! Hopefully your liver and kidneys may benefit

afterwards !

I know its easy for me to say but please try somehow to relax a little. Hopefully your heart problem is only something minor that can be rectified quickly with some meds.

I'm ok and my 72 hour bug has now left the room if you know what I mean so I'm starting to feel a little more like myself!

On the liver health front, I'm back to square one, no liver biopsy until another ongoing flare up which LFT blood tests have to back up, so for now I'm now just getting on with life!

I'm sending you strength to hang on in there !

Love Trish xxxx

Gjkas profile image
Gjkas in reply to

Trish im taking one step forward and three steps back.. My Heart Problem isn't minor,i wish that it was 💔.Already on strong Heart tablets.

The Aortic and the Mitral Valve are in pretty bad condition. Neither of them opens or closes properly and the blood is flowing backwards. Causing a swelling in the ???

Forgot what its called,but i know that they are concerned about something to do with an aneurism if it gets any bigger..But they can't get a Surgeon that would do a replacement, because it's OPEN HEART SURGERY and they've already told me that I wouldn't survive it....Oh Shite to it all...

They gotta do something..

Believe me,i am trying to hang on in there..But it's getting harder and harder..You Take Care. Glo.xx

alfredthegreat profile image
alfredthegreat in reply toGjkas

Hi Gjkas,

Sorry for butting in your conversation.

I just wondered if you knew that there are some new procedures happening for mitral and tricuspid valve regurgitation?

It used to be open heart surgery was needed to be able to put things right but in a lot of cases they have used a new procedure that involves going through a vein in the groin and travelling up to the side of the heart and putting clips on leaking valves, this then stops the blood backflowing into the atrium and enlarging the atrium which can then cause further problems.

This procedure is great for those not well enough to be able to tolerate open heart surgery.

I know all this because my wife has this very condition. Hers has not been considered bad enough yet to require them to do the procedure but just lately her symptoms have increased and so she is going back to the GP to say maybe now it's time to sort it.

The procedure is only a half day stay in hospital.

I hope this info may be of some help

Wishing you all the very best.

Alf

Gjkas profile image
Gjkas in reply toalfredthegreat

Don't be sorry for butting in Alf.

I'm grateful for any help and advice I can get. But they have already gone through the groin,and all they managed to do was tear the main blood vessel that they were using and I had a Major Bleed.

I had already had an Angiogram in the groin a few years ago. But when I was admitted 18 months ago my usual Cardiologist wasn't there..I did tell the other Cardiologist that i wasn't to have another Angiogram or anything else done in my groin because it wasn't without risk. My usual Cardiologist and I had already discussed this issue. Well this other Cardiologist said that's okay we can go through the inside of your wrist. When I was taken to the room where they were doing the procedure,That Cardiologist wasn't even there.

It was a young Scottish Man.

So I then told him that he wasn't to go into my groin. Anyway he tried 3 times to go through my wrist. Then finally said that he couldn't do it because my blood vessels were calcified..But within a couple of seconds he went into my groin even

though i told him that he wasn't to.

O.M.G. I had the most terrible pain in my groin,Back, Tummy and right leg and I was absolutely soaking wet. It was my own blood that was going over me. Then all hell broke loose. I found out a couple of months later that the young man that did the procedure had just started down there and I was his 1st Patient...But he wasn't even supervised and the Consultant Cardiologist that i saw first of all wasn't even on the ward.

The Young Doctor that attempted to do the procedure came to see me 3 times to apologise. Even the Consultant Cardiologist apologised to me. But I just ignored him. I could hardly look at him..I haven't been back to Cardiology since because my old Cardiologist have finished there.

My GP told me that Cardiology have been in touch with her twice. because they need to see me.

But Ive got no faith in them anymore....I still have a lump of puckered skin in my groin and i can't touch the top of my leg. It goes right through me,,,all tingling ,like nerves have been damaged....

Anyway we're not all the same and it was just my bad luck to get someone that was new to the job.

Thankyou for your kind words and advice...Hope all goes well with your wife and everything works out fine 🤞. Good Luck to you both. Gjkas

alfredthegreat profile image
alfredthegreat in reply toGjkas

Hi again Gjkas.

Sorry to hear of all that's happened to you.

No wonder you have lost confidence after that fiasco!!

I hope that you will be able to have the procedure done in the future by someone of great expertise.

Could you maybe do some research to find the best hospitals and surgeons to do this procedure and take your findings to your GP?

It was my wife about 18 months ago that made her GP's surgery aware of the fact that this procedure exists.

Alf

Gjkas profile image
Gjkas in reply toalfredthegreat

Oh Alf, to be honest I am just too tired to bother anymore.

I am 76 years old and I have so many things wrong with me. Even the Doctors at the Hospital called me Nightmare or Trouble. Not Nasty or anything like that. I get on great with all of them except those 2 in Cardiology.

I was so active up until the age of 67 and then i didn't know what hit me .

I went in hospital in January and came home in March. The Neurologist took my Husband to one side and told him that what I've got has a 95 per cent Suicide Rate.

That was 9 years ago..

Why on Earth do these things happen ???. Good for your Wife

that she made her GPS Surgery aware that this Procedure exists,

Have your Wife had the procedure done yet. ??, I hope she have and that everything is okay.

Will you let me know how she is getting on.. Thanks Alf

..

alfredthegreat profile image
alfredthegreat in reply toGjkas

I'm sorry about the position that you find yourself in. Life can be a pig and with no explanations!! :-( :-( You've got far more than your fair share, there is just no fair about it!!

My wife hasn't up to now reached the point that her doctors consider that she needs the procedure but just lately her symptoms are becoming more regular. So she will be seeing her GP sometime very soon regarding that maybe now is the time to go ahead with this.

To my mind having read about it all about it and about how quick it all is with very little risk, I think that it's best to have the procedure before any great damage is done due to the atrium enlarging.

We will see what they have to say, if the answer is still not yet we will have to consider the private route.

We only have one life don't we? Until someone can prove conclusively any different! Will let you know how it all unfolds.

Meanwhile I hope that you can manage to keep comfortable and get some enjoyment out of life.

Wishing you the best possible.

Alf.

Gjkas profile image
Gjkas in reply toalfredthegreat

Hi Alf, I agree with what you say about your Wife. Don't leave it until they tell you that ( Oh I don't think we can do anything for you, because we can't find a Surgeon that would perform the operation ) Huh.

Thats what they have told me. I've got an Advanced Notification Letter now,,signed legally by my G.P. that if i have a Heart Attack or anything like that,,i am not to be resuscitate or anything like that. I did have another one as well signed by 2 Cardiologist.But the Cardiologist scrapped that one when I was taken in hospital about 2o months ago.

I remember that it was 20 months ago ,because it was the same day that Prince Harry and Megan got married. I missed the Wedding...

To end on a better note Alf. I had an Email today from the Aneurin Bevan

Health Board to say that they have made an appointment for me to meet up with an Anaesthetist at the Anaesthetic Department in Nevill Hall Hospital on 5th February...I know that I mustn't just think that it's gonna be okay. But at the same time, i have to do some kind of positive thinking because I haven't been able to eat anything,i feel so nauseous all the time,have just felt so dreadful. I've got a 16 cm Haitus Hernia as well. So that could also be part of my problem..Oh i don't know..

Anyway Alf ,,keep in touch. Let me know how your Wife is getting along.

I'll keep you posted on how I am going. Take Care Glo x.

alfredthegreat profile image
alfredthegreat in reply toGjkas

Hi Glo.

That's not great, a hiatus hernia too!!

I hope that your Feb 5th appointment turns out well for you.

More than Your turn for better news!

I will let you know how my wife goes on but expect we are talking quite a few weeks away.

Keep me posted on your progress (hopefully progress!)

All the best in the meantime.

Alf

in reply toGjkas

Hi Glo

Thank you again for the more in depth update on your heart condition which I wish I could comment on or give you somekind of comfort and say alls going to be ok but I cannot say either.

I'm here to listen and to send you as many hugs as you need, just remember I'm here .

Please take care and keep me posted.

Love Trish xxx

Gjkas profile image
Gjkas in reply to

Will keep you posted Trish.

Thanks. 😑.x

Hi GJkas,

I saw your post on the RA site actually as I also suffer from inflammatory arthritis but the rhuemy keep chopping and changing what one I have rheumatoid/Psoriatic Arthritis/ poly whatever label it bloody hurts. Anyway. I also have a diagnosis of Polycystic liver disease which basically means I have lots of cysts on my liver, I also have one on my right and had some on my left which is no more(has shrivelled and refuses to work). Liver cysts are very rare and only about 1% of the population have them but they mostly cause no problem unless they become big and start interfering with parts of the liver like the bile duct or they burst (like mine did last year, thats another story). Make sure you see a gastroenterologist who is sussed up about them or at least in touch with a liver specialist and you should be ok. One thing that is important is to make sure that they keep an eye on the cysts and you go for at least 6 monthly scans, insist on this. You may also find that you will suffer more frequent bouts of indigestion the remedy is to eat smaller meals but more often and I found less fatty foods, no cream, high far cheese etc as this tended to make me queasy.

Otherwise hope you get your op soon as I know from reading your post there is some delay, but isn’t there always ....

Gjkas profile image
Gjkas in reply to

Oh thanks for your advice .Im still waiting to have this Heart scan done before they'll take the Gallbladder out and unblockthe Bile Duct..Have been

My Mum had a similar problem to me..She had a Cyst on the Pancreas,Enlarged Liver,Blocked Bile Duct etc.. God Bless her. She passed away 6 months after being diagnosed with Pancreatic Cancer.

Thats what they thought I had ????.

You know that you can have both types of Arthritis, because I've got Rheumatoid and Osteo etc.

As far as the Cysts go. I haven't got a clue what's gonna happen with them.I didn't even know that Liver Cysts were rare, I've got some inside and outside of my Liver and some on my Kidney as well as the Pancreas..

When I met the Surgeon that is going to do the Operation. She said ( Oh. what are we going to be doing for you Glo.).

She was very nice. But she didn't mention the Cysts to me at all.

When I see my G.P next,I'll have to mention it to her. I get terrible pains in my stomach with Nausea and indigestion. I don't have Butter,cheese,chocolate or anything like that. But everytime I eat anything I feel like I wanna Puke..All this was actually diagnosed last April .I was already in hospital for a different problem when they found it out.

The NHS used to be 1st class, but the last few years it's gone downhill..

Anyway ,Yeah thanks for the info .If you find anything else out please message me,and I'll do the same for you. Gjkas. x

Gjkas profile image
Gjkas in reply to

Hope i haven't made too many mistakes in my last message. We got the Roofers here taking the chimney down because we've got a big leak somewhere up there.

They started at 8.30 am this morning and they're still BANG. BANG. BANGING.

I had a rotten headache before they started. It's bloody killing me now. So is my Stomach..Gjkas

Cysts can occur in or on any organs spleen, pancreas, kidney, liver. Everybody has heard of polycystic ovary syndrome but never realise they pop up everywhere (brain too! ). It is also a genetic condition, my Mum has them but on a milder level so if you have any children it could be worth them mentioning it to their . The cysts tend to start of small but increase as you get older so if your family have young children they need to be flagged as needing scans for suspected cysts. Most cysts are benign but if they become too enlarged they can be ‘deroofed’ which basically means the fluid sucked out and then somehow made sure that they can’t fill again. This is usually performed at a specialist liver centre mine is in Bristol as I live in Somerset. I’m mean’t to be going there at some point as I have a cyst which is 14cm and a bit of a ‘problem’. I’ve got a scan in a couple of weeks so everything crossed things are ok. I have so many cysts it has caused my liver to become enlarged so takes up most of my stomach. It can sometimes cause stomach pains often like you have a constant stitch in your right side. Also one of my cysts will block my bile duct causing a lot of pain but it usually is just temporary. Just daily living with the stupid conditions.

My GP surgery used to be really good I had a great GP he was really good. Kept up with making sure all my routine tests were done and would always speak to me if I called. Keep me in check and not frightened to say no if he didn’t think if a test or medication I suggested was appropriate. But like all the good ones last March left the surgery and haven’t had a named GO since then and it’s basically been utter chaos because they don’t communicate. It’s potluck who you speak or see and they never know your history or what is happening. So many mistakes have been made. I hadn’t had a blood test for 6 months and the beginning of the year felt so ill decided enough was enough I needed to just DIY and got one of the health coaches to see me. Told them how I felt, what I needed, that I was going to be a pain in the bum and managed to at least get some reactions. I have had a few calls from a doctor ringing up asking me nit to keep ringing up as ‘they are very busy’ and I said ‘I will stop ringing up when I am well enough that I don’t need to!’

Sorry for long conversation, get carried away but my girls (dogs) are getting irate as on ipad so have to go. You can write, rant whatever I don’t know if they allow to private message or how to?

Gjkas profile image
Gjkas in reply to

O crikey. thanks for sending me all this information. I didn't have a clue about any of this.

I had 2 Cysts taken out of my head about 20 years ago. I've got another lump not far from where the other 2 were taken out. I suppose that's probably another Cyst. It feels the same as the other 2 used to. It doesn't move and it's quite solid. Don't get any discharge etc from it..i'll mention it to the GP when I see her next week.Shell probably say Oh im not sure. .Oh No i don't bloody believe it.

My Hubby rang up the Cardiology waiting list clerk to ask when I'm gonna be having the Scan. He explained to her that I'm waiting for an operation,but they can't do it until theyve had the results of the Scan.

She told him that she's very sorry but I'm not even on the bloody list.

Where the hell do we go from there.

Im having the operation done at Nevill Hall. But my Cardiologist is at the Royal Gwent. The lady said that she can see my name on the Screen and when I was at Nevill Hall a couple of weeks ago.

She can even see that the Anaesthetist wants me to have a scan before the procedure.. But the Scan haven't been requested...

What the hell is going on. My Hubby's ringing everyone. He's making himself ill over it. He's been sick twice today.

He's had major Surgery on his stomach about 10 years ago. All this is kicking it off again.

Please. Any help or Advice would be so appreciated. Thankyou. Gjkas

Gjkas profile image
Gjkas in reply to

Hi again. My Hubby just rang Nevill Hall Hospital. The department he actually wanted isn't open today.But the Lady he spoke to asked him if she could help him .

He explained the situation to her .She couldn't understand why i had to have the Heart Scan in the Royal Gwent,

when I was actually having the Surgery in Nevill Hall Hospital.

My Hubby said ( Well neither can we.

Everything is so mixed up,we don't know what else to do ).She took our phone No

and said that she'd see if she can find anything out. I hope she can 🤞🤞🤞🤞

Then my Hubby rang the GP. The receptionist said that she don't think that they can help ..But my Hubby said.

( Look i need to speak to the Doctor personally. So id like a callback please )..

Cheeky Sod. Who'd she think she is ??? )

10 minutes later the Doctor rang us up..

She wanted to speak to me. So I started to explain to her what was happening..

That we we're getting desperate.

She first of all said that she couldn't get involved with it..That done it.

I was in a lot of pain and I just went Ape

S..t I said to her what dya mean You're my GP if you can't help me. Who the hell can Well i finally got through to her. Now she's gonna get in touch with my Anaesthetist and find out what'sgoing on. Even she can't see why they can't do the scan at Nevill Hall Hospital because that's where they're gonna be doing the Operation. Oh what a Nightmare.

See, they said that they couldn't help at 1st. But they could. They can and they did. But we shouldn't have to keep on at them for their help..OOOOOÒH.

Another Rant Over. xx

It’s completely bonkers! Nobody is listening or wanting to take responsibility! I get it all the time. If you are seen as a ‘complex case’ (have several conditions) nobody wants to deal with you because its too much work. I mean they are all linked with the same computer system and can access your records in an instant, they have phones! they can email each other! It’s not fair that we end up so poorly and at our wits end to get any kind of result but that seems the only way nowadays. I feel for you (hugs) (gentle but very sympathetic ones) soldier on. I will never let them beat me. I chose when I lay down my sword not them 🤯

Gjkas profile image
Gjkas in reply to

Yes it is Bonkers🤡. Everything was going along pretty smoothly. Until a Heart scan was mentioned. Then it all went T..s up. But nobody seems to understand why im having the Operation in one Hospital. But the Scan in another one.????

You're right, they've got computers. They can Email each other.

They've got phone's. 👣So why the Big Deal.?.Because half of them are too bloody lazy .💤💤💤

Thankyou for your kind words and gentle Hugs.

Im going to try and solder on. But im getting weaker by the day.

Im not a winner, because up until now there's not much help out there for Fibromyalgia. They can't replace these Heart Valve's..But i am a Fighter, So i hope that im still gonna be around when

they finally sort all this out.

I like that.

You choose where you lay down your sword not them..👍xx.

Gjkas profile image
Gjkas in reply to

Hi Crazydog .Thought id let you know .

Apparently the Hospitals had their wires crossed. ( Not the people mind you. )

The Royal Gwent Hospital were waiting for my scan results from Nevill Hall Hospital Durrrr.. But i was actually having the scan at the Royal Gwent and the results had to go to Nevill Hall Hospital because that's where I'm going to have the operation.. The mind boggles .

Anyway I've had the scan done now. So i have to wait for the results to go back to

Nevill Hall Hospital. 🤞 PHEW.

Hi , its been a while since I posted and wondered how you were? Did you get further with appointment for your op?

Gjkas profile image
Gjkas in reply to

Thankyou so much for keeping in touch.

Yes eventually everything was put in place. The Consultant Anaesthetist is giving me the Anaesthetic, She said that id have a bed ready in HDU for after the OP. But then the Coronavirus started up and that put paid to that.

So it's a case of a waiting game again.

I've been in bloody agony sometimes.

But at least i won't have to wait for another Scan ( I hope ).

My Mental Health has been affected badly, because of the pain im in 24/7.

So I've been referred to the Mental Health Support Team.

Don't know what the hell they can do about it. I need help from a Surgical Team. Help for my Tummy as well as my head.

How are you keeping Crazydog. Hope you're okay and staying safe.

This Pandemic seems to be taking over everything. People losing so many Loved ones, just makes me wanna cry.

So many Doctors, Nurses .Bless them.

You Take Care of yourself and Stay Safe. 👍😊

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