AMJ2598

Hi everyone. I thought I would pop this on here, and someone who is feeling incredibly frustrated and let down by the whole waiting process. For context; I am waiting for a gastric sleeve date, after almost 5 years on the waitlist with the NHS based in England. Ironically, I could've paid for private surgery almost twice over with the amount of tax I've paid since waiting! I have been 'at the top of the list' since October last year, and have done everything they have asked of me - kept my weight below my initial weight at the beginning of my consultations; diet change; lifestyle change; everything to try and help eleviate some of my PCOS symptoms whilst I wait. I'm just feeling so ticked off today. I missed a call by a couple of seconds whilst I was driving to work, and had a gut feeling it would be from the hospital I'm having the surgery in. I tried to call back, but typical, it was a number that didn't receive incoming calls. I tried for 20 minutes to get through to the right department (had the phone put down on me when I was put through to the wrong team, and asked to be put back to the switchboard?). When I finally managed to call through to surgery admissions, I was advised that because I didn't answer the phone (despite LITERALLY not having a number directly to call back on), they had already called someone else and given my slot away. Livid and heartbroken do not come close to how I felt today. I am so exhausted of the waiting game, even moreso when there's been several times I've had appointments in person cancelled at the last minute, after travelling 2 hours there and back; cancelled phone calls at the last minute; zero in-person physiotherapy despite being told for over 2 years I would receive them. I now have to wait - god knows how long - for the next phone call, that heaven forbid it's unsafe for me to answer my phone at that point in time. Has anyone else in the UK had anything like this before? I just can't believe they wouldn't give me a chance to call back as I did, or call me again within a couple of minutes. I'm self-employed, and as the spring/summer months approach, I may lose out on a lot of work and earnings with surgery recovery, which is why next month would have been perfect. Any support right now would be great. I'm feeling so deflated and worn out by this.

Hi all. I had my gastric sleeve on 28th March, and very quickly realised something was wrong. I couldn't tolerate water at all, and a few days after I developed tonsillitis. It was severe and believed to be Quincy's, which thankfully after a transfer to another hospital to check for this, it wasn't. However I became really really ill - my temperature was at sepsis level, I was completely dehydrated and on an IV for everything. Tried antibiotics but that didn't really work, which then led the doctors and surgeons to believe it would either be a very nasty viral infection, or I'm being followed up to check for an auto-immune disease. I spent 4 weeks in hospital, and now that I'm home, my symptoms are (whilst better from the pain I had a couple of weeks ago) still very uncomfortable. I have a very angry and inflamed liver which is causing me pain, as well as the incisions of the port site resulting in a very large haematoma, again causing discomfort and pain. The most frustrating thing for me is, whatever caused this, has completely wiped my energy and strength. I can't open a bottle, and I struggle to walk for more than 10-15 minutes without feeling tired and fatigued. I have lost 19lbs since surgery (5 during the month in hospital, and another 14 this week), but a part of me is wondering whether it was even worth it given the ordeal it caused. I just feel very alone in terms of my procedure not being straight forward, and it would be good to hear other stories too. x

Thank you for your kind words - I hope I do regain it, as I feel totally wiped out! x

wow, I'm so sorry all of this happened! That must've been awful to deal with so props to you. I felt like I was going insane with just a month stay in hospital. I have a doctors appointment on Monday, luckily they got back to me quickly today and triaged my referral. They did ask me to go back to my surgical team first, but I had my surgery about an hour away and it's just awkward getting there when I cant drive or use public transport at the moment, which they understood. I also had a feeding tube - not via nose but via a line in my arm - and the nutrition in that daily... the side effects are not pleasant! So I can totally sympathise with you there. They did mention pre-surgery I could potentially wake up with a drain from one of my incisions, which I didn't in the end, but part of me feels like perhaps it would've helped identify the blood build-up, or something else. Another thing similar to your story was they also thought it could've been a leak as something showed up on the CT scan along the staple line. They eventually ruled that out but my health anxiety is just crazy now.

I actually didn't get out until this Monday lmao. I ended up getting really bad, but doctors and the surgeons are unsure as to why. Either a really nasty viral infection or, currently being tested for an auto-immune disease. Very uncomfortable even a month on. A lot of pain from an inflamed liver, as well as the incisions still. Absolutely zero energy and fatigue all the time.

Had my sleeve on the 28th of March. Had a few problems with pain around the port used to pull the stomach out, so stayed in hospital a little longer than usual. Hopefully out tomorrow!

Likewise! Sleeve on the 28th, started my pre-op diet last Thursday. Opted to go fully liquid to help prep for post-surgery, and because I was already on quite a low-cal diet anyway. Good luck!!

I'm 3 days into my 2 week LRD, and to be honest I didn't do anything similar to this, as much as I wish I did! But I was so worried about putting weight back on and not getting to the number I needed to be at, as I have my surgery through the NHS, so I started my liquid diet about 3 days early, and before that for the 2 weeks I knew of my surgery, I was super strict with what I ate. There are definitely a couple of things I really really crave, but I've waited way too long for this to be ruined by myself. I really love Halo Top ice cream as it's lower in calorie than the usual pint of Ben & Jerrys, so I'll be excited to eat this when I finally can. Also, just a very nice sunday roast. Yorkshire puddings. Can't wait.

Hi all, After my prior post regarding the complaint I had - I finally have my surgery date for the 28th of this month, after almost 5 years since my first GP consultation about the sleeve (yippee!). With that being said however, they gave me 4 weeks notice because they now want me to lose another 3.5kg pre-surgery. For context, I was 135kg at my highest, they wanted me to stay below 130kg, and I'm now 124kg. They didn't give me a reason why, I have always had ok blood test results, I'm not pre-diabetic or anything either. The last consultation I had in-person with my surgeon also said 130kg would be fine, so again, don't really understand the change. Believe me when I say, my diet is STRICT. I'm on 1000 calories a day, high protein, super low carb (less than 40g per day easily), lots of water (at least 2 litres minimum), and an average of 10-15k steps per day, with at least one hike per week. I've been doing this for the last couple of weeks, but I am really really struggling to get this last few kg's off beforehand. No sugar - no fruit, nothing. I really think my PCOS is not helping the situation, but I'm really worried in the event I'm not at the 121kg they want. I have been that weight recently, I was down to 119kg this time last year with the help of Saxenda, which I then had to stop taking in June because every pharmacy I could order from were sold out. I haven't been on it since, so the fact I have maintained this weight loss honestly I'm just pleased with at this point. If anyone has any ideas as to how I could lose this last 6lbs or so, I would be greatly appreciative. I've lost 0.5kg so far over the past 4-5 days, but I'm so stressed I'll get to the hospital and they'll turn me away. Thank you! x

Thank you! So far I have lost around 3lbs in 4/5 days so I'm feeling okay about it, but not without struggling for sure. I did email my nutritionist (who is the one who told me this information) to be told she just put it down to 'what she thought my surgeon would want'... very vague.

It’s almost like they’ve conveniently forgotten you’ve lost your pre surgical weight & are just telling you to lose more as per their set playbook. I also love how they’re telling you to lose weight but aren’t supporting & guiding you in how to do it. Where’s their pre surgical diet? Where’s the referral to a dietician?? Like @NickelChip, I would suggest the three shake a day pre surgical diet many are given. Or do two shakes & one meal of 3 or 4 ozs Protein & 1/2 cup steamed vegetables or undressed salad. All the best. So I begin my pre-op diet in just over a weeks time, but to be honest I'm just really worried it won't get rid of the weight I need. My calorie count and nutrition is already so similar to what they want me to do, and I'm still struggling. I have an appointment next week to get some pre-op tests done, presumably weight and bloods etc, and even then I'm petrified if the number is even slightly above what they need, that'll be it. Other than a straight up water and broth fast, I really am stuck on what to do! I will be on all-liquids for the pre-op diet which is fine, but it's difficult to not get hung up on the fact they've drilled into my head that I MUST hit a certain number, regardless of my loss already.

March 28th for me UK based, having a gastric sleeve. 5 years of waiting, therapy, consultations, a global pandemic & a few other issues in the middle, I can't wait for my new life.

Totally agree with the lack of work by MP's similar to yourselves over the pond! I did reach out to PALS, who are the official complaints people for the NHS, and the admissions team at the hospital did come back to me this morning. Felt a lot like many excuses, some not-so-reassuring promises about a provisional date in March (not holding my breath really), and generally just not much else.. alas, we will get there

Ahhh, the lovely tier 3 programme! It took an absolute age just to even be considered for that to begin with, I really feel for you. Then the added issue of thinking you would be aiming for a certain month or period of the year, to then be told last minute it's being pushed back, again and again, is genuinely the worst of it. Being completely honest too, as someone who is self-employed, I just don't earn enough regularly to commit to paying it per month. I was working 6/7 days a week between two jobs and I was barely earning more than 22-ish thousand a year salary until the end of last year. I do have the comfort of earning a little bit more now, but only in the right seasons unfortunately. I did put in a complaint yesterday to PALS, and they very quickly responded which was good of them, but it was conveniently not the woman who caused the stress to begin with. They've 'provisionally' (and I use that loosely!) let me know the 28th of March could work depending on how many others they have to schedule. Just a waiting game I suppose. Thank you for your kind words, I really appreciate it x

Thank you, I completely agree. Common practice usually would be to call the patient on the waitlist at the top (I have been told you are able to refuse a date to be offered another just one time, in the event you have a situation you can't miss in your personal life, for example), and offer the date with 2-4 weeks notice of surgery to begin the liver reduction diet. I agree though, it doesn't take a genius to work out that this way of contacting people is simply ridiculous. What if one is driving again, or it's an inappropriate time to answer a call? I have since found the complaints email for the health service trust, and have sent one off to explain the situation. I would be shocked if this was their policy, honestly, but I'll wait and see I suppose.

Thank you. I honestly have no idea how they would think it’s a sensible way to schedule anything, honestly, I was so shocked I couldn’t say anything to her on the phone. I think I may call tomorrow to ask for a complaints number to be honest. I just can’t understand how that is even justifiable. I’d love to go private and I did look into it, but I had a few complex needs that they advised I go back to the tiered weight management service the NHS offer for help and therapy first. At this point I wish I’d have ignored their advice and booked anyway!