Feeling low waiting all this time wile my life's on hold.

[Sweetcheeks84]

Hi all i had my first appointment 1st September 2015, completed tear 3 now awaiting my MDT team appointment on the 30th December 2016 of which I'm seeing the dietitian, nurse, and psychologist. I have no clue what happens after that will I get my date for my op then or still have to wait longer?
My life is on hold I am no longer working due to health conditions iv always worked an I'm struggling with being I'll an home all the time. This operation is my life line really but i can't help feel frustration and low waiting I know we al have to wait but already iv been waiting 15month. Any advice or info would be amazing thank you xxx

 

[lj_1980]

Hi,

I know how you feel, I had been seeing a dietician for a year when I got referred through another speciality to the obesity centre. My first appointment with them was June 2015! So I am due to see the mdt team on the 10th January and I still have no idea what their decision will be!!!

I have lots of other health problems which manifested after an acute illness in 2012. I am at home all the time too. I think we sometimes have too much time to think. Weight loss surgery may not even help my other issues but part of me is really helping it will! But until I get more info and a decision I don't really feel I can even think about it as an option as i don't want to get disappointed!!!!

So I don't have any advice but just wanted to say you aren't on your own xx

 

[lj_1980]

Just seen on another post you are the l&d as well!!! No wonder our journey seems the same!!!!

 

[FeeBee]

I know I felt like I had my life on hold too. In the end I made the decision to just get on with it and when the op date came I'd deal with it then. I'm disabled and was more housebound this time last year so I know how hard that can be. Everyone seems to think it must be great getting to stay in and watch TV etc, it's only when you have no choice you realise it can feel soul destroying.

Even now I still have periods when I'm not well enough to do much at all and it will always be like that. I deal with it by planning ahead so even if it's just that I hang a load of washing out to dry and that wipes me out I feel like I've accomplished something if that makes sense? If I'm not able to move from bed or the sofa I choose what I want to watch or read rather than channel hopping mindlessly. Maybe you find a strategy to make the waiting easier? The operation date will arrive, ironically when you get your head around waiting and find a way to cope more than likely.

Plus keep talking to us if it helps, we will do our best to keep you sane and if you feel worried nothing happening then call the team for updates. A few of us have talked about needing to be persistent to make sure your referral is progressing x

 

[SAM55]

Hi,

I know how you feel, I had been seeing a dietician for a year when I got referred through another speciality to the obesity centre. My first appointment with them was June 2015! So I am due to see the mdt team on the 10th January and I still have no idea what their decision will be!!!

I have lots of other health problems which manifested after an acute illness in 2012. I am at home all the time too. I think we sometimes have too much time to think. Weight loss surgery may not even help my other issues but part of me is really helping it will! But until I get more info and a decision I don't really feel I can even think about it as an option as i don't want to get disappointed!!!!

So I don't have any advice but just wanted to say you aren't on your own xx

I needed to get my head sorted first as I knew that surgery alone wouldn't work. . You don't mention whether you have lost any weight since June 2015?

I was also housebound for 5 months after swine flu and ME in 2012 so can empathise with being stuck indoors. However, I found ways through it with voluntary work and hydrotherapy and counselling, though it was hard, but worth it.

Hope you get the answer your want.

 

[lj_1980]

I needed to get my head sorted first as I knew that surgery alone wouldn't work. . You don't mention whether you have lost any weight since June 2015?

I was also housebound for 5 months after swine flu and ME in 2012 so can empathise with being stuck indoors. However, I found ways through it with voluntary work and hydrotherapy and counselling, though it was hard, but worth it.

Hope you get the answer your want.

Hi Sam, not sure if you got mixed up here I am not the original poster?
Bit confused by your comments so presuming they weren't meant for me.

 

[SAM55]

Hi Sam, not sure if you got mixed up here I am not the original poster?
Bit confused by your comments so presuming they weren't meant for me.

Hi. Have double checked and my reply was to you as it mentions June 2015 and being stuck at home.

 

[Sweetcheeks84]

Hi,

I know how you feel, I had been seeing a dietician for a year when I got referred through another speciality to the obesity centre. My first appointment with them was June 2015! So I am due to see the mdt team on the 10th January and I still have no idea what their decision will be!!!

I have lots of other health problems which manifested after an acute illness in 2012. I am at home all the time too. I think we sometimes have too much time to think. Weight loss surgery may not even help my other issues but part of me is really helping it will! But until I get more info and a decision I don't really feel I can even think about it as an option as i don't want to get disappointed!!!!

So I don't have any advice but just wanted to say you aren't on your own xx

I have a chronic condition too its awful and I'm hoping all will be okay after my op. Its nice to know im not alone, but can't help thinking so much as iv done al that's asked of me to still not know what they will do next. Xx

 

[Sweetcheeks84]

I know I felt like I had my life on hold too. In the end I made the decision to just get on with it and when the op date came I'd deal with it then. I'm disabled and was more housebound this time last year so I know how hard that can be. Everyone seems to think it must be great getting to stay in and watch TV etc, it's only when you have no choice you realise it can feel soul destroying.

Even now I still have periods when I'm not well enough to do much at all and it will always be like that. I deal with it by planning ahead so even if it's just that I hang a load of washing out to dry and that wipes me out I feel like I've accomplished something if that makes sense? If I'm not able to move from bed or the sofa I choose what I want to watch or read rather than channel hopping mindlessly. Maybe you find a strategy to make the waiting easier? The operation date will arrive, ironically when you get your head around waiting and find a way to cope more than likely.

Plus keep talking to us if it helps, we will do our best to keep you sane and if you feel worried nothing happening then call the team for updates. A few of us have talked about needing to be persistent to make sure your referral is progressing x

Thank you for replying, I struggle day to day I have a chronic condition but it should be helped after surgery. I get told by op ppl how lucky I am to just relax at home but I'm very outgoing well I was an staying home going nowhere is so hard the wait for the decision or conformation is awful. One surgeon said I will be having the op then when I called to ask a few questions the woman was so rude and asking me questions when answering she snapped at me like I was lying. The terrible thing is I don't know who she was or I would complain.
I have only till Friday to wait to find out what's next but its been so long I can't think of anything else I just need to know the plan its getting me down so much. If they give me the milk diet or tasks I'd fight as hard as I can to do it for a date but also for peace of mind.
Its great I can talk to you all it really helps me not feel so alone xxx

 

[FeeBee]

Fingers crossed you get some helpful answers very soon x

 

[Sweetcheeks84]

Fingers crossed you get some helpful answers very soon x

Thank you I really hope so its been a tuff year xxx

 

[lj_1980]

I needed to get my head sorted first as I knew that surgery alone wouldn't work. . You don't mention whether you have lost any weight since June 2015?

I was also housebound for 5 months after swine flu and ME in 2012 so can empathise with being stuck indoors. However, I found ways through it with voluntary work and hydrotherapy and counselling, though it was hard, but worth it.

Hope you get the answer your want.

Apologies Sam I think I just misread it !!!

I have lost 5-6 kgs in that time, I have been ill since 2012 and housebound throughout that unless I use a wheelchair or mobility scooter.

 

[lj_1980]

Thank you for replying, I struggle day to day I have a chronic condition but it should be helped after surgery. I get told by op ppl how lucky I am to just relax at home but I'm very outgoing well I was an staying home going nowhere is so hard the wait for the decision or conformation is awful. One surgeon said I will be having the op then when I called to ask a few questions the woman was so rude and asking me questions when answering she snapped at me like I was lying. The terrible thing is I don't know who she was or I would complain.
I have only till Friday to wait to find out what's next but its been so long I can't think of anything else I just need to know the plan its getting me down so much. If they give me the milk diet or tasks I'd fight as hard as I can to do it for a date but also for peace of mind.
Its great I can talk to you all it really helps me not feel so alone xxx

Good luck today xxx

 

[Bling Babe]

Thank you I really hope so its been a tuff year xxx

Hiya how did you get on today ? Xx

 

[Hannah2]

Hope your apt went ok

 

[Sweetcheeks84]

Hi all well I went I gained as I thought I saw all 3 stooges lol the nurse was lovely but said as I gained they want me to do the milkndiet for a month then the low cal diet for another month and see the surgeon end of March. Which was a huge blow to me because iv been waiting so long and got told last time it should be Jan now its March and then anything from 2-18weeks wait for surgery. So wasn't a happy Bunny, I hvent done the milk diet during my journey as I don't digest food properly with my condition but she is going to talk to the Dr and then call me to let me know there plans from the meeting that evening. I have to have a blood test to see if my liver and kidneys are okay to do the milk diet then do it for a month.
I have to wait for her to call me she said she would let me know that evening (Friday) but she didn't. So I'm still ewaiting for the plan and in the mean time trying to prepare for the milk diet for a month that's going to be so hard but if I have to I will do it.
So to sum it up I'm gutted they are now saying it could be around may June at least for my op so I'm really upset by that.
Also the philologist said I seem to want to push for it to go faster than it is but when your no longer working due to I'll health and my life is on hold till I have my op I can't plan my life. We were going to France in June well now we can't in case we wanted to go away for our birthdays and can't plan that either so much is riding on this op plus the hospital losing me in the system for 3 month made me wait 6 months for my MDT team appointment instead of 3 was a huge frustration. Am I frustrated yes am I pushing for it yes but when nothing seems to be going forward an I'm skint and unwell and things seem to be going forward for most ppl I know who are at the same place I just feel so frustrated an upset.
Sorry for the rant just so upset about it all I just feel like they are fobing me off all the time

 

[jj87]

Seems unfair to push you back just becoz of of a gain. Was it a big gain. Can't seem to understand why they would do this to u. Sorry hun. I hope things quickken up for u x

 

[Sweetcheeks84]

Seems unfair to push you back just becoz of of a gain. Was it a big gain. Can't seem to understand why they would do this to u. Sorry hun. I hope things quickken up for u x

I gained 10lbs since September but most was from Xmas I enjoyed it and figured its once a year but clearly they don't care I can lose that really fast I always do after t problem is because they haven't put me on the milk diet due to my conditions but now they want to try it and see how I do but its a huge drawback I just want to start living again n can't being so unhealthy n big. Ppl my just think I'm big I done it to myself but its because of my conditions n meds that my body stores it.
Frustrated to say the least I'm so upset each day feels like a life time I'm sorry to go on n on its just such a struggle xx

 

[Penelope]

Hi all well I went I gained as I thought I saw all 3 stooges lol the nurse was lovely but said as I gained they want me to do the milkndiet for a month then the low cal diet for another month and see the surgeon end of March. Which was a huge blow to me because iv been waiting so long and got told last time it should be Jan now its March and then anything from 2-18weeks wait for surgery. So wasn't a happy Bunny, I hvent done the milk diet during my journey as I don't digest food properly with my condition but she is going to talk to the Dr and then call me to let me know there plans from the meeting that evening. I have to have a blood test to see if my liver and kidneys are okay to do the milk diet then do it for a month.
I have to wait for her to call me she said she would let me know that evening (Friday) but she didn't. So I'm still ewaiting for the plan and in the mean time trying to prepare for the milk diet for a month that's going to be so hard but if I have to I will do it.
So to sum it up I'm gutted they are now saying it could be around may June at least for my op so I'm really upset by that.
Also the philologist said I seem to want to push for it to go faster than it is but when your no longer working due to I'll health and my life is on hold till I have my op I can't plan my life. We were going to France in June well now we can't in case we wanted to go away for our birthdays and can't plan that either so much is riding on this op plus the hospital losing me in the system for 3 month made me wait 6 months for my MDT team appointment instead of 3 was a huge frustration. Am I frustrated yes am I pushing for it yes but when nothing seems to be going forward an I'm skint and unwell and things seem to be going forward for most ppl I know who are at the same place I just feel so frustrated an upset.
Sorry for the rant just so upset about it all I just feel like they are fobbing me off all the time

It feels horrible doesn't it. I had an experience much like yours. First of all it was my endocrinologist who suggested weight loss surgery. I hadn't even considered it, so I asked for some time to think about things. Then my appointment with him was cancelled by the hospital, and when I chased it up I finally got an appointment 18 months later and when I got there I didn’t even see the consultant but a GPwSI (GP with special interest who holds hospital clinics). So I asked him how to go further on the WLS path and he looked at me as if I had two heads and told me those operations were far too costly. I was so shocked I don’t think I spoke again during the appointment and had to ask my other half what he meant when we were in the car later. Considered a complaint, but went to see my GP instead. He was very happy to refer me on. Then nothing happened so I contacted the PCT and the hospital and found my referral had been lost. They got me an appointment within a month because of the delay and I saw a consultant at the weight management clinic who told me all I had to do was stop using tomato sauce and salad cream and WLS was a terrible idea and would ruin my life. I asked if I was seeing a dietitian and he told me that was unnecessary and just to do what he said and I would be fine. Next appointment several months later, and I saw a lovely consultant who asked why I wasn't seeing a dietitian and that would slow my progress as I had to be seeing one for a year before they would refer me on to surgery. So I was set up with another series of appointments with the dietician. I had about 18 months all together visiting the weight management clinic before I was referred on for surgery. Then I heard nothing for about 6 months until I went to a Bariatric Seminar. This was a group appointment of about 15 people where we saw the bariatric dietician and watched a presentation about the different types of surgery offered. This was in October 2015 and then I heard nothing until I met the bariatric surgeon in December 2015. He was happy to put me on the list and told me it should be within 4 months. Then I was called for surgery on the 22nd of August 2016. Went in and sent home not operated on because the hospital was out of beds.
That was a bad day.
Stayed on the liver shrinking diet (LSD) in total for 7 weeks and finally had surgery on the 5th of September - a gastric sleeve.
Seriously the waiting time was terrible and a lot of the time I felt that I was never going to get there. In fact this time last year I was very low and convinced it would never happen. While I was in the system I always lost weight in between appointments, but only very small amounts. To be honest, about a pound a month on average, I managed to lose 5 stones in total from when I really started to try to lose weight to when I had the surgery. So I went from 25 stones to 20 stones. My weight today is 15 stones and 4 pounds.
Is it worth it? - I am now able to walk a bit and buy clothes in shops that aren't Evans. The recovery from the operation has been really smooth with only one hiccup when I tried chicken and sprouts too soon. I have discovered I get some dumping which is something I can work with. I am happy to be on the other side and able to move forwards. I know I would never have lost the weight without surgery - after all I had tried often enough. So yes I think so. Yes my life was put on hold while I went through the system and yes I was very angry and still am at some of the things I went through. But really I am glad it is done now.
Hope things start to go more smoothly for you now.
Good luck.

 

[Mazza]

It doesn't seem fair but unfortunately these things do happen!

Have you considered going through PALS and complaining?

It's really not on to keep you hanging but at the same time, they want to ensure that you're committed to this.