(trigger warning - medical neglect and trauma) Hi, I joined this forum 5 years ago aged 44 after I had my aortic valve replaced following endocarditis caused by a late-diagnosed bicuspid valve. I nearly died because it took 8 weeks for any doctor to believe anything was wrong. Then in the first hospital I was initially falsely accused of causing it through IV drug use and bullied while fighting for my life. No apology when they realised it was because of CHD. Then nearly killed by a secondary infection caused (ironically) by poor IV hygiene during antibiotic treatment. In the second hospital they saved my life and replaced my valve. But I was left with PTSD. Not so much because I nearly died of an illness. It was the medical neglect and errors. I'd already been on the sick for 4 years with misdiagnosed depression when this happened. It turned out it had been valve failure with severe regurgitation. I lost a good career I loved and was great at, plus my last potential chance to have kids. Plus my partner. When I had endocarditis he disbelieved I was ill for those 8 weeks too. I forgave him, but he couldn't cope with me talking about the trauma or cope with the guilt, took it out on me, became abusive and we split two years later.
I didn't make a complaint about the hospital because PALS prevaricated and delayed sending my hospital records until 2 weeks before the 1 year deadline. And the pandemic began the same week I received them. So, morally and socially, I couldn't. And the pandemic and being high risk exacerbated my PTSD. No doctor even knew if I should shield. So I barely went out, and was left with agoraphobia issues which took me until this year to resolve.
I've read the ACHD guidelines about access to specialist nurses, cardiac psychs etc. I've never had any of these services. I've pushed, but been repeatedly lied to.
I was told I didn't need cardiac rehab. Tried to help myself with exercise. Then told I had heart failure that would never improve, only get worse, and that I shouldn't overdo it and get plenty of rest. Then told 2 years later that was a misdiagnosis and that it had just taken my heart ages to recover (because of the lack of rehab?) Good thing I didn't really have heart failure. It was 'diagnosed' in a ten-minute appointment with a cardiologist who referred me straight back to GP. Who admitted she had no idea how heart meds worked, didn't bother asking the cardio and told me ridiculous things, like saying the reason I had to take the beta-blocker was that my metal valve would break if my heart beat at a normal rate... 😂
GP also had me on an INR range of 1.0-1.5 for 6 months after the op. It's meant to be 1.5-2.0 because I've got an On-X valve. I was the first of her patients to get one, but even so, surely common sense would tell her that if my INR was meant to be 'normal,' I wouldn't be on warfarin. And after I realised, she agreed it was wrong, but was then waiting for 2 months for someone to reprogram INRStar to rectify it and told me I had to follow its instructions in the meantime. I told her I would not let her kill me and insisted on upping my warfarin myself to try and get above 1.5. She wrote in my notes that I was going against medical advice. Nothing in my notes says it was due to their mistake.
It's a catalogue of errors from day 1. I have no energy to make a complaint. I haven't had a break from researching and correcting error after error for 5 years, it takes all my strength and more, and I have to, so that I don't get sick or even get killed. I've only listed the major ones and a few examples here. And you'd think they'd be happy I was complicit in all their cover-ups by never having the capacity to report things. But they're often actively hostile.
The only cardiac care I get is a two-yearly ECG. My metal aortic valve is doing fine, but the last one said I have mild mitral regurgitation. My GP says that's normal at age 49 and I have nothing to worry about. I've no way of knowing if anything they tell me is true. I've given up knowing or caring whether or not I'm classed as having a heart condition or ongoing cardiac illness. I don't feel like I do. All I'm on is warfarin and aspirin for my metal valve. I eat a very healthy diet and go for walks, never drink. It would destroy my mental health to keep fighting for medical answers so I can't.
I've never received psychological therapy for the PTSD. Because the NHS won't admit I've got PTSD. Because they caused it.
Early last year I suffered medical neglect again. Again, I nearly died. 5 months with no GP or INR tests. I moved home to a small town I'd lived in before and the local GP closed their books the same day. Other surgeries were either also full or refused me based on catchment area. Everyone was aware of my situation; everyone said it was someone else's job to help. I ended up in A & E with an INR of 11 and was in (the same) hospital for two weeks. Until then, I tried to believe I'd just been unlucky. But this time, they knew. They knew I was on warfarin and that no one was giving me INR tests. I was only still on warfarin because they can't add up and give me 3 times as much as I need, and fortunately I hadn't got around to taking the surplus back to the chemist for a while. That episode tipped me over the edge. Actually made me stronger in a way. Harder. I realised I'd actually rather die than suffer the absolute degradation of begging for help for months while slowly bleeding to death (even cutting the warfarin out didn't help once it was too late - I was later told a coagulation disorder had set in) in my bedroom 100 metres away from my local GP with them saying their books were full except to vulnerable patients and I 'wasn't vulnerable' and 111 saying I couldn't go to A & E for a 'period.' a 'period' that lasted *extremely* heavily for 3 months... like, where's a woman with a high INR likely to bleed from... 'oh, you've only thrown up blood once, you can't go to A & E unless it happens twice, no, you can't make yourself throw up just to see if blood comes out, oh, and now you've mentioned that, if you do, they'll know it's deliberate and turn you away... no, rectal blood doesn't count, it might be piles... well, how do you know you haven't got piles?... ' being treated as a non-human. Anyway, I threw up blood again, sent them photographic evidence, and I was in! But 5 months of that, I couldn't go through that again. Mentally.
I managed to pick myself up enough to start volunteering and retraining to prepare to get back into my old career this year.
I was so excited. I actually felt for the first time in 8 years that there was a strong possibility that I could build a good life for myself again! Even if it is inevitably cut short by medical neglect, I can still enjoy myself!
But 4 months ago I developed totally new symptoms and now I have to go for a colonoscopy in two days' time. In the same hospital. I am so scared. I can't believe that just when I was starting to get my life back, this happens. Hopefully I won't have cancer. But I've had to sort out several admin/communication errors in the process so far. Feels like everything they can get wrong, they do. Hopefully they won't mess the procedure up and kill me!
And it's all so socially isolating. I can hardly talk to people irl about it. It makes me feel ashamed even though it's not my fault, because I've lost friends simply because it happened and they didn't know what to say (or didn't believe me?)
I have a few friends left. I've realised it's best not to talk much if I'm really in need or feel desperate, though. Even though I help them out with practical things and listen to their worries. I can share happy things and even small stresses and mishaps as long as I'm upbeat and joking about them, but shut myself away if I'm tearful and desperate about my real problems. It's too big and unsolvable and it wouldn't be fair to treat them as professional help, which is what I really need - but there isn't any! I've tried seeing a couple of counsellors, but can't really afford it, and they're not medically trained, so I'd spend 90% of a session trying to explain what I was even on about, 10% of a session talking about the emotional problems it caused and 0% getting therapy... it doesn't work.
So I need a cardiac psychologist. But when I asked my cardiologist for one, he laughed and said he'd never even met one and wouldn't know where to find one. Surely that can't be true? Anyway, I haven't been allowed to speak to a cardiologist since 2021 when they removed the heart failure diagnosis.
But first I've got to get through this colonoscopy, and any words of support or good luck messages would be so much appreciated. I'm sorry to offload here. If you've actually read this far, thank you so, so much x
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Amikatari
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I empathize with you so much.I have suffered misdiagnosis and poor treatment , or lack of it over the years which contributed to other conditions being triggered.
I work hard on maintaining my trust in medical care but I also double check everything to make sure mistakes haven't been made and have needed to do a lot of research about my conditions over the years to make sure that I get the right treatment and the help I'm entitled to.
It often feels like a full time job but at least things have begun to improve in my care and I have more peace of mind when I get treatment.
Like you I could have made complaints and still could but I don't feel physically fit enough to shoulder the Stress of doing that and realise I could end up making myself more ill by doing that.
You are very brave telling your story and you are stronger than you probably think you are because you are still trying despite suffering these traumas.
I've had several colonoscopies over the years, mostly under sedation but also with local anaesthetic.
First, try to keep positive.
A colonoscopy isn't only used to check for cancers but are more commonly used to check for other bowel and digestive issues. Most things that are found are benign, often if it's not complicated they can do some treatment on the day. If they find other inflammatory issues they may take a small biopsy to be doubley sure that there are no other problems but they will take your medications into consideration.
Hopefully, they did give you a booklet explaining what you should or shouldn't do in the days before your colonoscopy.
If you are taking Warfarin or other DOACs they usually request for you to stop these 2-3 days prior to the colonoscopy to help reduce the chance of bleeding. They usually suggest that you stop taking other things like NSAIDs and Iron tablets too. It's good to remind your consultant on the day that you generally take Warfarin this helps them to take more care and give you specific recommendations about when to start it again, if you take other medications you could list them here in another reply if you want to check if you should suspend taking them or not.
If you are taking medications on the day just take it with a sip of water. It can help to stop drinking anything but clear fluids for 12 hours before.
They usually suggest that you stop using laxatives for a few days ( except for any formula they have sent you to empty your bowel the day before).
They also suggest that you don't eat fibre foods like nuts , seeds , fruit with seeds, corn etc.
This is to make it less uncomfortable when you clearly your bowel and to reduce the chance of you having a lot of stools left inside on the day.
I've always found the procedure straight forward and the staff very considerate when I've been for a colonoscopy. You don't need to go into detail but you should let them know that you have some health related Anxiety and PTSD and ask if they can take that into consideration and if there is anything they can do or give you to help you relax ( that fits in with your other health needs , of course).
You can help make the procedure easier by doing deep breathing exercises in the days before and during the colonoscopy if you are having a local.
Try doing some Kegle exercises for the next few days as well , and in the weeks afterwards. Stronger muscles in that area help to make the procedure easier.
It also helps to relax the abdomen if you have a warm bath the night before and if you feel up to it a shower on the day if it's an afternoon procedure.
You can also help make it more comfortable by using a lubricant like Vaseline for a few days prior and on the day on your rectum to make things smoother.
You can ask for a pillow to put behind your back and I have used a rolled pillow under my waist to make it more comfortable in the foetal position.
It might be a good idea if you ask someone to come with you to drive and give you moral support. A family member or a friend. I know you feel like you don't want to bother them but when you are getting treatment I'm sure they would understand that you need their help this time. All you can do is ask. If no one is available ask for someone to be with you from hospital support and you may want to arrange a hospital lift home because driving isn't easy and public transport is unforgiving.
You will feel quite bloated and sensitive after the procedure . You may have a very small amount of blood in your stool or as you wipe for a few days afterwards especially if they do biopsies but that is normal. Drink plenty of fluids in the days after and eat light meals for a few days,
They may ask you to try to go to the toilet before you leave. You will probably find it a little harder to go than usual for a few days after because you will have a little inflammation but paracetamol can help with that.
When you go to the toilet don't strain.
One tip I was given is to sit and say the word 'idge' repeatedly.
It may sound mad but saying that word causes your stomach and lower bowel to contract helping you to move a stool more easily when you need to be careful about going.
You will hear from them quickly whatever the cause is.
It's probably a good idea to stick to discussing your colonoscopy on this post as that is the procedure that you are about to have but please keep posting.
You could put up another post about getting support for your PTSD or advice about Cardiac Rehab. If you note which area you live in people may be able to give you specific advice about things you can go to and what you are entitled to in your local area.
You can also just post about how your heart condition causes you mental health issues and ask to hear from others whom feel they same and get their advice about what they do.
If you update your profile page with your current conditions and medications that will also help people give you suggestions that fit in with your needs.
It's hard dealing with cardiac conditions , and harder still if you have experienced negative and traumatizing care , but we are here, your hearty friends, to listen and understand when you need to talk about things. Take care and I hope things go well for you , Bee
What can one say, you have been through the most dreadful trauma and it shouldn't happen to anyone I've had great Cardiac treatment but my deceased wife was abused in her hospital
You're alive and still have great opportunities so don't give up
Ask for sedation for your colonoscopy. I'm so sorry about all you've endured, mine is along the same lines but not such serious consequences.
If you have any heart related issues that you have questions about the British Heart Foundation cardiac nurses are a great resource. The number is 0300 330 3311.
Please keep posting, you need somewhere to express your feelings.
My goodness, well done you for getting here, what a trial you have been through. I had to chase my treatment but by comparison have been very lucky indeed, I am now three months post surgery.
What I would like to try and help you with is therapy, my area of work. If you look for a therapist who works with ill health or, that awful term ‘life limiting illness’, you may find someone who has more immediate empathy of what you are dealing with. There is a search facility on the BACP website ‘search for a therapist’ section there are not a cardiology results but there are for ill health.
Therapists will aim to deal with your emotions, their skills should be applicable to what ever your experience. An effective therapist does not have to have your lived experience, or great medical information or awareness, while you initially and understandably may feel more confident if they have, after a couple of sessions you should settle into focusing on feelings and emotions which is really what you want help to be able to regulate. PTSD personally I would look for EMDR but that is often quite expensive and I feel should be part of long term therapy. General therapy can get you a very long way in dealing with trauma, most therapeutic approaches today will focus’s on stabilisation work to make sure you are confident in the present before, if ever, going near actual work on the trauma. MIND offers reasonably priced therapy, it varies from area to area but may be worth investigating in your area. NHS now providing more varied therapy rather than just CBT, recruiting for ‘talking’ therapist now. Worth checking any therapist qualified to a level four as a minimum and working under BACP, UKCP or NCPS or similar national association.
I do hope you will find help and find you can have faith in therapy. I feel if therapists had to know all about their client’s presenting issues they would be less well informed about their own practice. There are a lot of charities that offer therapy, the most important point in selecting a therapist is the relationship you are both able to create, if you find one that does not feel right, move on. Very best of luck.
Hello lovely people, thank you so, so much for your kind and thoughtful replies, I'm so grateful and will reply to you all properly soon. My colonoscopy's actually tomorrow and I was given all the right info in a leaflet about preparing for it with diet etc. They decided that if I need any biopsies I'll have to have another one, because they didn't want to take me off warfarin without knowing if that was necessary.
At first they said I couldn't have any pain relief or sedation at all unless I could find someone to promise them they'd collect me afterwards and stay with me overnight. None of my friends are conveniently so commitment-free and available at short notice. But I said I couldn't go through with it with zero analgesia, and they relented and have booked me in overnight so I can have pain relief and sedation. Thank goodness. At least they're not being cruel and hostile this time, so far.
Now I have to call them and ask if I can start the bowel prep early, because I don't see how I can be simultaneously next to a toilet and also in a taxi for 30 minutes to get there, tomorrow morning 😂 I don't think they thought that bit through, and nor did I, because I've been so busy fighting for pain relief, prophylactic antibiotics, instructions that make sense, an appointment letter that says the actual time and date instead of getting it back to front and saying I'm staying in the night before the procedure and having the bowel prep after it!, an INR at short notice 'Oh, they'll fit you in!' 'No, they refuse, you'll have to fit me in instead' 'But we've not got capacity' 'Well nor has my GP and they reckon you should have told me earlier... ' lol. Gotta laugh!
You lovely people have cheered me up so much. Thank you all for your kind words xx
I'm so sorry to read everything that happened to you and I send a hug 🤗
I had similar experience with the GP and my local hospital, I felt ignored and dehumanised. I was lucky enough because I had means to go private, otherwise my health and quality of life would have been ruined by now. If it helps I can tell you that I made three complains: 2 against GP and one against local A&E for not applying NICE guidelines. The GP had answered to complaints lying and denying everything. The A&E complaint is still on after 6 months and I don't expect much of an outcome. I also spoke to local Assembly Member (I'm in Wales), they don't care, they answer but nothing change and never a "sorry". Don't stress about complaining, it's a waste of time, they seem to be superior to everyone and they decide who lives and who dies.
I also totally understand the feeling of isolation and the exhaustion to keep up with your life and chasing the health system when you are completely on your own. I had pets which I had to give away because I couldn't cope with the thought of having failed them and being barely able to look after myself.
You have done incredibly well so far, considering all the things that have happened to you. This forum is very useful and supportive, you can write us to unwind. I wish I had more pragmatic suggestions but I can only say stay strong, you are not alone!
PS: Mitral valve regurgitation is in no way "normal", some people, like me, have minimal congenital regurgitation which I would have never find out if I didn't have other heart issues and 4 heart scans.
Wow. Yes they say I can start the bowel prep early, but some idiot just told me I had to stop drinking water at the same time as starting the bowel prep. I know that's wrong because the leaflet says to stay hydrated during bowel prep. Then she admitted she didn't actually know and was just making things up and passed me onto someone else. Who told me I had to stop drinking water 6 hours before the procedure but couldn't tell me what time that would actually be, because the procedure is just afternoon rather than a specific time, then said it wasn't her problem. Finally someone who knows what she's doing said starting bowel prep early makes no difference to when I stop water and just to stop water 2 hours before arrival as the leaflet says. Result! Thank you all, it helps so much to offload here xx
I can identify with you, especially at the moment, as I'm wondering whether to get to A & E or the Same Day Emergency Care ward for the fourth time in six months whilst Haematology takes its time to help me since my referral last November. I too feel I'm being passed around and in four weeks I'm due to have an appointment with a cardiologist - which is where I started this current "journey" last November. A few months ago my GP gave me some sort of Samaritans number, but talking to them is not going to help with my physical symptoms.
In the past 21 months I've been very appreciative of the NHS and understanding of its problems, but I'm feeling despair - I can't even have a chat with someone in Haematology because a nurse hasn't been allocated to me, and my last email to it was never replied to, and with the one before I was just told that they "would look after me".
I've just deleted several more paragraphs about myself, because I don't want to barge too much in to your thread with my woes. But you've done the correct thing by telling us about how you feel. I find that writing down my situation helps, especially when providing a summary of my conditions to the latest medical person I've seen. And the replies you're getting are providing you with the sympathy and advice that you deserve.
Sorry to read your post - it sounds like you have had a rough time of it.
I have had two colonoscopies and they went fine. Ask for the highest dose of sedative - It goes from 1 to 5 with 5 being the highest. The first one they gave me was a 3 and it didn't really do the trick. For the second one, I asked for the highest dose - it did the trick alright! You feel relaxed and a bit in fairyland. It was quite fun.
A colonoscopy will find a polyp or two more often than not. These can turn into bowel cancer but they take them out there and then. A polyp can show blood in your motions which is likely to be the reason you were referred.
One other thing to note is that 9 out of 10 polyps DON'T become cancerous. The odds are in your favour.
Sorry to hear all that you have been through. I take warfarin and reading your post, l have to ask why are you taking aspirin? I have been told never to take aspirin with warfarin as it can cause a bleed. Good luck for your colonoscopy and l hope soon that you will have some peace from all of this suffering and life will be a little kinder to you. Take care.
Don't worry, it's part of my anticoagulant regime. The valve I've got (On-X) only requires an INR of 1.5-2.0 and a combination of a relatively low dose of warfarin combined with 75 mg aspirin to achieve this. This isn't based on advice from any of my own doctors, it's from the manufacturer and endorsed by Oxford Heart Centre where I had it fitted, it's based on studies and minimises the risk of clots just as well as a higher INR does, while also making bleeds far less likely, so I trust that bit! Explaining it to hospital doctors is a different matter, though! I just hope no one I see today asks 'What, your valve's made of onyx?' like one of them did last time I was in... 😂 Thanks
Yes, l thought it would be part of your treatment regime, but you are the first person l have heard of that takes aspirin and warfarin together. You live and learn. Glad it’s ok for you and take care.
I'm also on warfarin and aspirin, due to a transient branch retinal artery occlusion while already on warfarin. Warfarin mainly addresses vitamin K clotting, while aspirin works more on platelet clotting (or something like that).
I'm not entirely sure yet whether or not the aspirin is temporary. (The occlusion happened 2 weeks post open-heart-surgery for mitral valve repair and aortic valve replacement, so it may just be until things settle down.)
The warfarin will of course be permanent due to the mechanical valve.
Thank you so much for all the good luck messages everyone! I will try not to post while still under the influence of the sedation but if any incomprehensible messages appear, that will be why No, seriously, I'm overwhelmed by the kindness I've received from you all, you've made a huge difference for me the last few days and I appreciate it so much, thank you so so much! ❤️
They couldn't give me the colonoscopy yesterday because my INR was 2.8. My range is 1.5-2.0 and my test on Monday was 1.8. They kept me in last night to see if they can do it today. The Bridging Clinic woman said I'd get another INR yesterday when she saw me Monday. I had to beg and demand one yesterday. Then they said 'All fine to go ahead.' I asked at the last minute what the reading was. They didn't know. Had said 'fine' for no reason, went to find out and *then* realised it wasn't safe to go ahead.
They sent me back up and the ward doctor said it was my fault for asking for a test, because it would have been safe with the reading of 1.8. I can't cope with such gaslighting. My INR would have been 2.8 either way, the only difference was they knew. Can't get my head around that.
I said how do they normally deal with warfarin patients? 'Take them off warfarin.' Why wasn't that done for me? 'Because you refused to come off it.' No I didn't. They told me they didn't want to take me off it without knowing whether I needed any biopsies. That they'd get me back in if that needed doing and take me off warfarin then. From the start. More than one person said that to me. 'Oh no, it says on your notes that you refused to come off it and it was *your* idea to come back if you needed biopsies.' How could that even be my decision? I'm sure they don't offer unlimited procedures at a patient's whim with no discussion. They never gave me the option to come off warfarin. I would have been happy to.
Bet they'll put on my notes that I 'refused the colonoscopy' too. They tried to make it my decision whether to go ahead. Said 'Oh, you don't have to, not if you're worried. It's your choice.' I said 'No, I would very much like to go ahead just as long as a doctor is willing to state that it doesn't carry unnecessary and preventable risk.' Put the responsibility back onto them. Can't believe they abused the principle of patient consent to try and trap me like that. Obviously no doctor agreed to take responsibility for risking my safety. But they can still write 'patient refused' if they feel like it, just like they did about coming off warfarin, while telling me it was their medical decision that I should stay on it. Scares me so so much that they can give any lies they want the official status of truth just by writing them down. That if I did try to complain it would be impossible because the only evidence either way is their notes. And the more they mistreat me, the more they make my notes reflect that I'm an irrational person and any future doctors would shake their heads, see me as 'That' patient before even meeting me and their treatment of me will get worse and worse. For life.
Thinking about it, it's absolutely obvious my INR would have shot up after not eating for 2 days for the bowel prep. No food = no vit K = no need for warfarin.
I haven't eaten since Tuesday. They refused to prescribe me vit K, said it's dangerous. Not when my INR's way above target it's not. It's the standard treatment for that.
They said they'd give me a glucose drip so I got some calories. Gave me a saline one with nothing else in it instead and then tried to tell me glucose and saline are the same thing and saline contains calories. Obviously I wasn't accepting such rubbish. So I asked what the drip was actually for. 'Oh sometimes people don't drink enough water and their blood pressure drops.' Is my blood pressure low? No. I'd already had 7 pints of water and three coffees in the 3 hours since they let me start drinking again. And they knew that because there's no way to get any drink without asking them for it! Why would I let myself dehydrate anyway? I don't have any kind of disability that would prevent me from being aware of the need to do a basic thing like drinking water or be unable to physically do so! If I did, I'd be such a vulnerable person that I'd probably need to live in a care home. Maybe they're trying to make that the 'official truth' about me, too.
I don't get why they are doing this to me. If it wasn't for my input, they'd have gone ahead without an INR test and if I was injured or killed they'd write 'patient refused to stop warfarin and was aware of risks when consenting to procedure.' And got away with it!
Are they trying to kill me or drive me mad so I can never complain about their abuse dating back 5 years? Seriously!
This will just get worse and worse as my life continues until they cut it short. If hospital's are actually incapable of diagnosing or treating any other medical condition that might arise in a patient on warfarin, where does that leave me?
I'm so scared!
Sorry I'm not helping anyone else here right now, I will if I ever get out of this nightmare. Xx
Two doctors came to see me today, listened to everything, understood and gave me time to consider what to do. I came up with a plan and they agreed.
They're agreed to discharge me back to GP with a letter that I will be allowed to check & authorise and which I've actually handwritten for them - admitting clinical and communication errors were made yesterday that exposed me to an unacceptable level of preventable and avoidable risk and that I now very understandably feel unsafe and unable to proceed at this hospital. And that they fully support and sympathise with my position. And they're letting me stay until they've sorted out my INR because they made it shoot up by telling me to fast without adjusting the dose.
And they're bringing me lunch. Which is my first meal and the only nutrition I've received other than sugar in coffee since Tuesday morning.
Omg. I feel so validated - and strong! I didn't let them bully me, made myself heard and kept myself safe! I *have* come a long way since 5 years ago!!!
Thank you everyone for listening, sympathising and offering your thoughts. It made such a difference writing here ❤️
Thanks no I'm not worried about the INR per se. Only about having nearly been tricked and bullied yesterday into going through with an invasive procedure while it was at a level that made the procedure unnecessarily dangerous!
Maybe I am a bit worried about the INR per se now. 1.8 Mon, 2.8 yesterday and 3.5 today despite no warfarin today 😂 and it's not because they're still trying to work out how sensitive I am to the stuff - I've been on it 5 years and my readings have been in range every month for ages.
Not the 3.5 itself that's the problem as such. More the fact it went up by about 25% in 24 hours even with the warfarin being skipped to try and bring it down! And the fact they refuse to give me a vit k tablet or any green veg to eat 😂
Oh, God, don't even talk to me about hospital food. I'll happily eat anything put in front of me, but I've never seen anything so unhealthy. The only veg they gave me were carrots cooked long enough not to have anything left in them. My wife brought me avocados and bags of pine nuts to keep my vitamin K up.
Oh god that sounds bad! Here they seem to have stopped doing veg! Protein and a carb for main course, and that's all! I'm just about to look on Google maps for supermarkets and greengrocers. Nearest one to walk to, I'll abscond and back in the morning and then sit there munching raw spinach and broccoli all day. Hummus dip. Sundried tomatoes, olives, fresh bread, fruit, I might even stage a peaceful protest by sharing it with my ward-mates! Can afford to after eating almost sod-all this week!
Having said that, my badly-cooked baked potato and plastic cheese was heavenly after being starved for 4 days!
So sorry to hear all you've been through. Fingers crossed🤞. When I recently had an endoscopy and colonoscopy I didn't have sedation so I could leave on the same day. I had Entonox for the colonoscopy which was fine. If I had to have an endoscopy again I'd definitely be sedated(because of the gag reflex, not pain). Good luck with it!
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No, seriously, I'm overwhelmed by the kindness I've received from you all, you've made a huge difference for me the last few days and I appreciate it so much, thank you so so much! ❤️
looking for advice and support x
bleeding internally with warfarin and having a mechanical heart valve 
Being referred for an angiogram and anxious 
second valve replacement 
