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Thread: My Introduction & Story

  1. #11
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    Default Re: My Introduction & Story

    Welcome to the forum, Ben, and thanks for sharing your journey. Sorry that you still struggle with pains. you have pushed yourself too long with aweful pains... please try to listen to your body, many times the spirit is willing, but the flesh is weak.

    Can I ask about your gut ? Was is affected by WG ?
    For years I thought I had colon involvement of WG but few months ago I was also diagnosed with Microscopic Colitis, so now I am not sure if and how WG is affecting my colon....

    Please update us how are you doing with this flare (is it a flare ?) Sending prayers.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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  3. #12
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    Default Re: My Introduction & Story

    Quote Originally Posted by Alysia View Post
    Welcome to the forum, Ben, and thanks for sharing your journey. Sorry that you still struggle with pains. you have pushed yourself too long with aweful pains... please try to listen to your body, many times the spirit is willing, but the flesh is weak.

    Can I ask about your gut ? Was is affected by WG ?
    For years I thought I had colon involvement of WG but few months ago I was also diagnosed with Microscopic Colitis, so now I am not sure if and how WG is affecting my colon....

    Please update us how are you doing with this flare (is it a flare ?) Sending prayers.
    Hay Alysia,

    Sorry for not responding sooner, it's been mad in my head for a few months now... nothing new there...

    Yes I am convinced it's all related to WG with my gut although no doctors have said eather way. I have presured a couple to see if they have surspitions but no real reaction from them. They would not say unless there is confirmed medical backing and lack of WG knowledge is not going to help.

    Now my favourite doctor has retired I have been bounced about until his replacement, i have now had one meeting with my new Rumatoligy consaltant and yet to ask him his thoughts but made mine clear when going through my history, i am pleased so far with his reactions. I am planning to interrogate him on his knowledge soon and also pushing to see a vasculitis specialist, knowing I will have to travel alot further for this but worth it I think?

    As I have not been so well of late and the new born, now 5 months old and an eating machine from the land of giants, also having colic bless the poor little thing (really not so little, only fits 12 month clothes for a 5m old). I have been meaning to update you all for a bit...

    My bloods have not show as a flare so not confirmed medicley as a flare by my doctors and the last rumatoligy consaltant was very dismissive unless the bloods showed a reaction/markers, but I am sure I know my body and with struggling 2 little ones and only having time off work for infusions and appointments have not missed a day of work for 8 months, an achievement for me :-)

    I am however booked in for major surgery on the 5th March, only a couple of days to go (arrrŕr) to have the top right lobe removed of my right lung, it had 2 nodules 5 years ago and one has gone completely and the other has reduced from 1.75cm to 1cm but they are concerned about it now and can't rule out cancer. There is no point messing with possible cancer so took the offering of removal. I have been suffering with a bad cough for over a year (still a smoker but almost weaned of the cigs) and will not be a smoker after surgery. I do hope it's not cancer!!

    Also while being tested by all department's in the last 5 months they have still not found the cause of the temple pain, it's not been bad over the last 6 weeks and have just had another CT on my sinuses as ENT want to do some surgery in my nose as the right side is obstructed.... I have had that little camera up my nose lots in the last 4 months, almost as much as a naughty finger... oops should keep that to myself.. so I am thinking about the surgery in my nose but reading in the forum need to find out some more I think and do some more reading... the pain could be stress of my life and/or to do with the big lump in my right nasal passage and sinus related as I am always blocked up?

    I think I will get the lungs dealt with and take a breather to look at options and risks..

    Once in recovery I will look at my medical records a little more on my gut problems and message some bits over to see if you can relate to any of it?


    Thanks for you kind words!

    Ben x







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    Ben


    Diagnosed in 2013


    Never, never, never give up! (Winston Churchill)

    What screws us up the most in life is the picture in our head of how it is supposed to be.... (Not found out yet)

  4. #13
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    Default Re: My Introduction & Story

    Welcome back, Ben, and thanks for the update. Finding a vasculitis expert will be the best.
    As for wg's manifestations in the blood tests, only in 2 of my flares my blood tests' results were dramatic. At others and also while smoldering (= wg activity on low level) my labs looks ok, except for Pr3 or C-anca which were elavated. But some weggies can even be anca negative.
    Good luck at the surgery. When they will take out the piece from your lung, ask them to check it also for vasculitis.
    Sending prayers for easy procedure and fast recovery.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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  6. #14
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    Default Re: My Introduction & Story

    Good luck Ben! We will be hoping the surgery goes well & pray it is NOT cancer! Please be safe & keep us updated


    Sent from my iPhone using Tapatalk

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  8. #15
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    Default Re: My Introduction & Story

    Quote Originally Posted by Alysia View Post
    Welcome back, Ben, and thanks for the update. Finding a vasculitis expert will be the best.
    As for wg's manifestations in the blood tests, only in 2 of my flares my blood tests' results were dramatic. At others and also while smoldering (= wg activity on low level) my labs looks ok, except for Pr3 or C-anca which were elavated. But some weggies can even be anca negative.
    Good luck at the surgery. When they will take out the piece from your lung, ask them to check it also for vasculitis.
    Sending prayers for easy procedure and fast recovery.
    :-) thanks

    Good idea I will ask if they can test it for WG

    Had 2 sugerys cancelled as the hospital were very busy due to a couple of snow storms, i would rather wait until they can give me the care I need properly. They have re-booked me for the 11th of March so only a couple more days to go ;-)

    Still trying to find a WG specialist for my doctor to refer me to long term that's in a sensible traveling time...

    Thanks Ben



    Sent from my SM-G930F using Tapatalk
    Ben


    Diagnosed in 2013


    Never, never, never give up! (Winston Churchill)

    What screws us up the most in life is the picture in our head of how it is supposed to be.... (Not found out yet)

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  10. #16
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    Default Re: My Introduction & Story

    Quote Originally Posted by NatriceRomeo View Post
    Good luck Ben! We will be hoping the surgery goes well & pray it is NOT cancer! Please be safe & keep us updated


    Sent from my iPhone using Tapatalk
    Fingers crossed and will let u know how it goes ;-)

    Ben

    Sent from my SM-G930F using Tapatalk
    Ben


    Diagnosed in 2013


    Never, never, never give up! (Winston Churchill)

    What screws us up the most in life is the picture in our head of how it is supposed to be.... (Not found out yet)

  11. #17
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    Default Re: My Introduction & Story

    Hi Ben.
    Good luck. When you get everything sorted out with your lung, I'd recommend trying to get under the care of Dr Jayne and his team at Addenbrookes in Cambridge. I think it's about 1hr 45mins drive for you. Not sure if that's too far, but I travel from Halifax there and it can take anywhere from 2hr 45mins to 4hr+ if there's an accident on the A1. It's a frequent, long tiring journey for me, but it's the only hospital I trust.
    Diagnosed April 1995

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  13. #18
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    Default Re: My Introduction & Story

    Quote Originally Posted by gilders View Post
    Hi Ben.
    Good luck. When you get everything sorted out with your lung, I'd recommend trying to get under the care of Dr Jayne and his team at Addenbrookes in Cambridge. I think it's about 1hr 45mins drive for you. Not sure if that's too far, but I travel from Halifax there and it can take anywhere from 2hr 45mins to 4hr+ if there's an accident on the A1. It's a frequent, long tiring journey for me, but it's the only hospital I trust.
    Hi Gliders,

    Thanks for that I have seen the name Dr Jayne before in papers I have read and would not have a problem traveling it's just under 100 miles so a couple of hours. I did find some names in Birmingham and Coventry but after the surgery and aftercare I have just had/having at Coventry hospital would want to keep clear as they are clearly struggling as a hospital on quite a few levels....

    My surgery went well and they managed to complete it all through keyhole, they only took about 15% insted of the 35% of the right lung they exspected to take. Recovery has been up and down, on day 5 I got the rigours through an infection but they jumped on that very quickly. Now at home with far too many meds but doing very well ;-)


    I am going to ask my GP to start the process of referring me to Dr Jayne and also ask my rumatoligy consaltant about it, my only concern is will all my treatments move as well? I have a great little chemotherapy centre in Warwick that only takes me 20 mins to drive to for infusions of rituximab every 4 months x2 and class Warrick Hospital as one of the hospitals I like and trust.

    How often do you travel to Addenbrookes and is that treatments and consultations ect?

    I have no problems with Addenbrookes and infact would bring some fond memorys back as I grew up in that hospital. My little brother was the first child in the world to be successfully transplanted with a kidney in the 70's... so have chased my older brother round the hospital many times and enjoyed all the Xmas parties and balls they used to put on for the trusts and charities and invite the family to (more for PR purposes), but I am sure it's changed a great deal.

    Thanks
    Ben

    Sent from my SM-G930F using Tapatalk
    Ben


    Diagnosed in 2013


    Never, never, never give up! (Winston Churchill)

    What screws us up the most in life is the picture in our head of how it is supposed to be.... (Not found out yet)

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