lfu2 As if Wegener's wasn't enough part 3

71 year old male with Wegener's

Monday 28th Nov. Routine doctor's appointment after new antibiotics; had a blood test. Tuesday 29th Nov... not so routine phone call from GP to inform me that I needed to go to hospital and she was arranging a bed for me at that moment... infection was still evident in my lungs after a prolonged course of antibiotics. I, of course, felt fine and had no knowledge of not being well. After failed attempts of finding a bed on the ward, I eventually entered hospital through the A & E Dept. at 5.30pm and was found a bed at 4.00am. They diagnosed me with pneumonia in right lower lung and suspected food getting past my right vocal cord (originally paralysed in the open position some years previously but more or less back to normal now).

I was dealt with by about 8 different doctors; rheumatology and ENT were also involved. I had various tests before being put on nil by mouth by one doctor whom I never saw again..... this eventually lasted for 6 days. The day I was taken off Nil By Mouth, it was lunch time and I was scoured away for a brain MRI ...and when I got back, lunch had been and gone.

Anyway, a Speech therapist checked me out and said there was nothing wrong with my swallowing. My pneumonia infection was cleared up due to trying every medication in their armoury and I was eventually discharged on the Tuesday after 8 days or so.

I recovered at home, not feeling ill but not feeling really well either. My methotrexate tablet had been stopped while on numerous anti-biotics over the previous 4 weeks but I was told to start taking it again. I took it on the Saturday night... with disasterous results, (if indeed it was caused by the methotrexate). I had a night from the depths of hell... I had numerous highly graphic nightmares. I could not get out of bed.... I remember trying to, but my limbs would not work right (if indeed I was conscious at that time). I was fighting with the pillow. My wife could not wake me properly (I was sleeping in the spare room)... she kept saying she was going to call the doctor and I kept saying no. I have never experienced anything like this before.... I was completely out of it.

I eventually awoke. I was at a very low ebb and felt exhausted. The doctor was called in the morning... he said my oxygen levels were low and it looked as if the infection had returned. So 5 days after getting discharged I was back in the same hospital ward again.

I had the original primary infection again and also a secondary infection. I was bombarded with medication and oxygen. X-rays, blood tests etc. etc. 8 days later now, the Friday before Christmas, and the infection has gone. My oxygen levels are in the high 90's and I might be going home tomorrow.

A quiet Christmas beckons.

6 Replies

  • hi ifu2 i really do hope you have a quiet and peaceful Christmas at home and feel much better soon

  • Hi Ifu2, you have had a really tough time, at least you are ok now and ready for Christmas. I havev WG but never experienced anything like this so can't help you unfortunately. I just wanted to say take care and have a quiet Christmas if you can and if anything else feels strange or not right go straight back to A&E. Merry Christmas 🎄 and more importantly take care xxxx

  • My goodness you have had a rough time. I hope all is ok for you for Christmas. Best wishes to you and your wife.

  • Best wishes, enjoy your quiet xmas. Hope you will get better and better every day.

  • I am very sorry to hear that and wish you a better New Years. I am a 42 year old with Wegeners (2 yrs past diagnosis)....which resulted in a Christmas hospitalization in 2014. Hoping you are discharged soon and feeling well enough to celebrate the arrival of 2017 with loved ones.

  • Update....

    I got discharged on Christmas Eve late afternoon and subsequently enjoyed a long family Christmas at my daughter's. It was very special and warm seeing all of the family. After 3 nights of family care I am now home by myself and enjoying my own company in my own house. I am amazed at how weak I am, so taking things very slowly and carefully. I am feeling ok in myself... no more nauseated feelings. As I sometimes comment.... 'another step in the big adventure.'

    The taxi driver who brought me from the hospital rather restored my faith in people, by insisting on carrying my bags to the door; a simple act which made me feel so grateful.

    Thank you for all your comments and good wishes.

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