My WG experience

[Sangye]

(Don't worry about writing too much. Sheesh, look at my posts!)

I've had most of the symptoms your husband has/had. (Minus the scrotum swelling-- wrong gender for that one!)

1) What exactly was he hospitalized for this time?

2) Did they say his pneumonia (on CT scan) looked like viral pneumonia, or "atypical?" Did they describe it as "infiltrates?" It's very common to mistake bleeding in the lungs for atypical pneumonia. It's happened to me a lot.

[DISNEYLADY]

We are having a better day, and just came from the heart surgeon that did the biop. on his glands in his throat. all OK It helps to know others have had similar illnesses. The spot on his kidney that was seen on ultra sound , showed nothing on the CT. All his test come back that he is OK,but now they all say it will take time to recup from the hosp. stay and in bed so long. This he knows from last Feb. when he supposedly had pnumonia. Hope you are have a good day. Hope he is ok tomorrw and FRi. as I go to work at you can guess it. Just a little after retirement job that I love!! He likes to see me go and I'm just a phone call away.

[Doug]

Disneylady- You are welcome. That is what we are here for. It's a form of community service, I suppose, a volunteer job that we take seriously because people dealing with WG oftentimes are in panic mode when they come to this forum. Reasonably enough!

[DISNEYLADY]

Hi all our new friends at wiggies . I've been wondering if others have been sob when recovering. My hubby's lungs are clear and his o2 is 98%, but just a short walk and he is out of breath.. So faf no fever, so thankful for that. I just worry about him. Maybe it is just the left over of being in the hospital for 13 days. Thanks to you all

[andrew]

My hubby's lungs are clear and his o2 is 98%, but just a short walk and he is out of breath..

If he's anything like me he'll get better in time. His body has been through the mill and needs more of everything including good ol' oxygen. That means just a mild amount of exertion will cause SOB. After going through this his body is super-unfit and needs 'training' again to even get through the simplest tasks unscathed

[Doug]

Exactly. I still have some issues with shortness of breath, but that's more fitness now, six years later (almost). Disneylady, you will be witness to what weggies find exasperating sometimes: Your husband will appear "normal" on the outside, but physically, he will be unwell in some real sense of the word. As long as I used a cane, initially, I was a convincing "invalid", I guess, and people would ask if I needed help or exceptions to rules to do my job. Once I could walk a bit of the way without a cane, I was treated as if I were healed, OK, not sick any more. I tried to walk without a cane a long time before I was ready. I'd find myself in situations where I'd get part way to where I was going, but I didn't have the strength or stability to complete the trek. I'm lucky I never fell in those instances. Of course, I would be drenched in sweat by the time I got back to where I left my cane! It takes time to get back into shape after hospitalization. Be patient with your husband. It sounds like he's coming along in good order, but recovery is based to some degree on how much effort the individual puts into exercise, etc. Did you see the entry about the 50 year old weggie who plans to climb Mt. Everest? That's one extreme. The other extreme would be not to exercise or try to walk extended distances. I always said, if you want an invalid, treat a person like one. Attitude during recovery is so critical!

[Sangye]

Disneylady, lung tissue is pretty delicate stuff. It takes awhile to get the tissue to heal well. Also, ctx is toxic to the lungs (ironically) and often causes sob or a dry cough. Other Wegs drugs can do that also.

Between bed rest, unhappy lungs and possible drug side effects, a temporary decrease in lung function is to be expected. It really helps if he can do some simple breathing exercises throughout the day. These are the same breathing exercises respiratory therapists teach you.

1) Take a long, slow deep breath in. Take as much as you possibly can. Then hold it for 3 seconds. Let it out slowly, as far as you possibly can. Hold it for 3 secs. Repeat a couple rounds.

2) Do the same thing, but use a fast deep breath instead of a slow one. (Don't overdo this one or do it too forcefully. You don't need to bust a spleen for it to work! )

3) Do #1 and #2 without the 3 sec pause.

[DISNEYLADY]

AGAIN, THANKS, tHIS MORNING i THOUGHT HE WOULD SEND ME CRAZY. WE ARE IN THE PROCESS OF MOVING, AND JUST BECAUSE HE GOT THE KEY HE THOUGHT WE COULD JUST GET LOADED AND MOVE. WE HAVE A REALTOR IN THE MIDDLE ANDSHE HAS TO COVER HER BUT, AS FAR AS RIGHT TO OCCUPANCY. WELL IT'S 1 AND WE HAVE A LOAD OVER THERE AND ALL PAPERS ARE SIGNED AND MONDAY WE TAKE OVER EVERYTHING, AND IT IS OOURS. I'M SO HAPPY FOR THE OWNER WHO LET US RENT UNTIL CLOSING. HOPEFULLY THIS WILL TAKE A WEIGHT OFF MY DEAR HUBBY AND HE CAN LET US MOVERS AND CLEANERS DO WHAT WE MUST.
HE GETS SO IMPATIENT, AND I CAN UNDERSTAND AS I WAS LAID UP FOR A YEAR AFTER BACK SURGERY. I JUST NEED HIM TO HAVE DO. HE HAS ONE OF THOSE BREATHING MACHINES FROM THE HOSPITAL AND HE HAS GREATLY INCREASED IN CAPACITY, I'M ALWAYS CONCERNED THAT HE WILL PUSH HIMSELF TO MUCH AND WIND UP BACK IN THE HOSPITAL WITH A RELAPSE. tHANKS ALL FOR YOU ADVICE AND ENCOURAGEMENT. SMILES AND SUNSHINE TO ALL

[Doug]

HE GETS SO IMPATIENT, AND I CAN UNDERSTAND AS I WAS LAID UP FOR A YEAR AFTER BACK SURGERY. I JUST NEED HIM TO HAVE DO. HE HAS ONE OF THOSE BREATHING MACHINES FROM THE HOSPITAL AND HE HAS GREATLY INCREASED IN CAPACITY, I'M ALWAYS CONCERNED THAT HE WILL PUSH HIMSELF TO MUCH AND WIND UP BACK IN THE HOSPITAL WITH A RELAPSE. tHANKS ALL FOR YOU ADVICE AND ENCOURAGEMENT. SMILES AND SUNSHINE TO ALL

That's a reasonable concern. Watch how he responds to exertion, and you can help him out by being a nag, if that's what it takes, to keep him from overdoing things. On the other hand- it's seems complex!- let him find his limits. Like any exercise, you have to take things a bit beyond comfortable for there to bea positive effect. Keep in mind that creatinine is a waste product of exercise, so, before he has appointments where that might be measured in his urine, that he not run any footraces the day before. You know the sorts of exercise he might do, so just keep those things in mind.

[katwoman]

I used to be on the ball you know and was so good at my job, but these days its just fog, I am forgetful and indecisive and by early affternoon its ridiculous if you didn't know me you'd probably think I'd had a few drinks - I hate being like this!

I don't even know when I got ill, thats how bad my brain is these days, not sure if anyone experiences the same thing - here I am saying I was sick 02/03 and it wasn't then at all I wasn't diagnosed May 2005, even had to go and get all my hospital paperwork to confirm.

I think the reason I have 2003 in my head is a I went to Africa in 2003 and when I landed in hospital my poor parents were asked by so many people did I pick something up in Africa (oh yeah two years later) - they had to explain it was autoimmune (for people to get it they explained like 'lupus' - not something you catch. Seemed to be the easist way for people to get it otherwise they still thought I caught autoimmune disease) - now I just tell them to 'google'.

Went to doc yesterday and she has taken a heap of blood work (including ANCA) and I see her Tuesday for results. As mentioned on other threads she has no idea, I got another referral to see ENT and she suggested my system maybe used to Bactrim - does this happen?

Anyway, my bosses wife is currently down in Sydney seeing a specialist at one of the major hospitals, she is also sussing out someone I can see - she has always been really good and supportive, which you need when you are juggling WG and trying to hold down a job, which currently is a struggle to keep working fulltime, although I only do 9-4.30.