Germ paranoia

[andrew]

Hi all...
Since being afflicted with this charming disease, I've become quite paraniod about bacteria, germs, whatever you want to call them, especially with being on chemo.

I wash my hands alot more than I did, when I use ATM's I use my car keys to press the keys and I don't drink from public water fountains (especially in the gym) - I'd rather die of thirst than do that. I keep away from sick people as much as I can plus a whole bunch of other things. Am I getting carried away? What changes have you noticed in your attitude towards this? Am I on my own here? :D

[Terri]

Hi,
I find myself aware of germs everywhere, but the things I watch out for the most are unnatural ingredients in food and chemicals.
The year before me being diagnosed I can remember using more than usual bug spray with deet (for mosquitos). I have to wonder?????
Now I try to avoid all chemicals when possible . We don't really know what all is out there.
Sincerely, Terri

[capabayan]

Definitely washing my hands more... I carry some of that Lysol hand cleanser in the car with me. Also, staying away from sick people (and our church's nursing home ministry). Never really used public drinking fountains before, so that didn't change.
Other than that, I haven't really found myself being "extra cautious" - I've always been aware of germs vs. cleanliness, so things haven't changed too much...

[witho]

I am aware on public transport when people around me are coughing and spluttering, and try to avoid being close to babies and young children (who are very good at carrying germs around). Luckily, I'm not the maternal type!

I avoid the types of food that pregnant women have to avoid (raw eggs, blue cheeses, shellfish, pâté etc) but don't really like those foods much anyway, so it's no big thing.

I am less cautious than I used to be - the odd shaving of parmesan (unpasteurised!) and runny egg yolk hasn't killed me yet!

I've always washed my hands even before I was ill, but not obsessively.

I think you just have to find a balance between being cautious and limiting your life too much.

[RCOSSIO]

You are not paranoid...just being cautious. I know I wash my hand and have all sorts of hand sanitizer at work, car and home.

Sometimes I do forget so I have to remind myself.

You know when you start something new the idea of what was "norm" is no longer the case and remember it takes 27 days to break old habits.

by the way it could be worse...Like not being able to enjoy my wine collection or enjoy my 21 yr old Glenlivet or nice cold Foster on tap.

What can I tell you "old habits hard to break" I guess 2-3 years without is not so bad!!!!!

[andrew]

Well all your replies are certainly making me feel a bit better :)


... nice cold Foster on tap.


Mmmm...yes, I haven't had that for many a year. I hear that they make it a different flavour over there than they do here in Oz.

[RCOSSIO]

yeah one word "weaker"...

as soon as I get my permission to drink I will buy me a bottle of King George and invite family and friends and have one glass because I know I will be drunk by just one glass..

enjoy!!!

[marian]

As I have said in my original post, it is my 14 year old grandson who has Wegener's. With everyone else in his family, he is reluctant to discuss his condition. With me, we talk quite matter of factly about what we both are learning about WG. He says that several of his doctors have told him to be very careful about germs and possible infections. He understands that his immune system is suppressed these days and it is up to him to be vigilant. He tells me that he now never drinks from the school fountains nor does he share bottles of water with anyone. I heard him tell his mother the other day that she should know better than to offer him a drink from her water container. He says he washes his hands many times during the day.

I am learning that youngsters deal with illnesses in their own ways. His rheumy has told all of us that he is just like any other kid except that he must take medicine. His doctors have worked out his entire medicine procedure with him and he is now in complete charge of the dosages and when he is to take them. I am very proud of him for accepting his condition (his doctor tells him that WG is a condition not an illness) and being able to get on with his life.

My goal is to do as much research as I can about WG so that we will always know where the most up-to-date research is being done. I want to be informed so that whenever we do talk about it I can point him in the right direction. I hope next year to be able to take him to the next Vasculitis Foundation seminar...that is, if he wants to go.



Marian

[Jack]

Although I'm immune suppressed, I don't take any precautions at all. There are so many opportunities to pick up infections that it seems to be a pointless exercise unless you are going to become obsessive about it. When I was on dialysis, I was super careful with the exchange equipment, but that's about it.

I was quite prone to picking up minor infections until I started to use Co-Trimoxazole antibiotic on a permanent basis. This was very successful, but due to my lung condition, I have to switch to something else on the odd occasions when it does not work.

[Gwenllian]

I go neutropenic every now and again, and infection becomes a BIG problem. The main things I pick up are stomach bugs etc (lovely!!!!), but i'm still not much better with hygiene than usual! I'm so busy with a hectic family life, i just forget. It drives my mother crazy, and she's rushing around after me bleaching/dis-infecting everything! lol. What would we do without our mums? :):rolleyes:

[andrew]

It drives my mother crazy, and she's rushing around after me bleaching/dis-infecting everything! lol. W

HAhaha yes, my Mum is similar. As soon as I walk into their house it's "wash your hands before you touch anything". Mind you, it has ben like that since I was a kid :)

[marian]

I've noticed that Patrick (my 14-year old grandson) does it all by himself. He washes his hands very carefully frequently. I was not with him the first time he met with his rheumatologist, but she apparently had a great affect on him because he is very responsible when it comes to taking care of himself. In addition to frequent washings, he is totally responsible for determining what medications he must take: how much and when. He has it all mapped out when he will be off his medications completely. I'm crossing my fingers that it all goes according to plan.

He has just finished his football season and by the last few games he was playing offense and defense. He said he was no longer short winded after a fairly long run.

He is due in for some tests to look at his lungs. He had a sizable mass in his right lung in the summer but the doctors are hoping that since he is still growing that the new growth will repair the damage from WG.

[andrew]

He sounds like a great kod, Marian! Let us know how his tests go. From the sound of it they'll be positive.

[Luce]

I've just read this thread and it's really helped because although I have been told that my immune system is suppressed at the moment due to the prednisolone, cyclophosphamide and recent plasma exchanges - no one has told me exactly what to avoid. Do I have to run away from everyone with a cold? Should I stay away from public places like supermarkets? I'm currently on co-trimoxazole twice a week to prevent me catching the PCP lung infection but how much protection does this provide for other infections?

I am a little concerned as today I went to meet my 3 year twin nephews who are both suffering from conjunctivitis at the moment - should I be worried that I've come in contact with this infection?

Also, how much do I need to worry if I do catch a cold?

At the moment I'm just taking it easy, wrapping up warm and trying not to get too close to anyone outside of my immediate family.

I am due in clinic tomorrow so will express my concerns then, hopefully the renal registrar I am seeing will have some idea of just how careful I need to be.

Also from a hand washing point of view - my partner has certainly become obsessive about this since I was diagnosed and I also wash my hands far more than I used to and use the hand gel a lot too, especially after handling my animals.

[Jack]

I too am taking Co-Trimoxazole, but I take one every day. I started this about ten years ago now and it stopped me getting a lot of little infections - sinus, lungs, gums, the list went on...... However, I still occasionally get a lung infection that requires a change of antibiotic for a short time. I take no special precautions at all apart from a pneumonia jab and an annual flue jab. If anything, I seem to get fewer colds than most people although it is sometimes hard to tell.:(

[andrew]

I've just read this thread and it's really helped because although I have been told that my immune system is suppressed at the moment due to the prednisolone, cyclophosphamide and recent plasma exchanges - no one has told me exactly what to avoid. Do I have to run away from everyone with a cold? Should I stay away from public places like supermarkets? I'm currently on co-trimoxazole twice a week to prevent me catching the PCP lung infection but how much protection does this provide for other infections?

I am a little concerned as today I went to meet my 3 year twin nephews who are both suffering from conjunctivitis at the moment - should I be worried that I've come in contact with this infection?

Also, how much do I need to worry if I do catch a cold?

At the moment I'm just taking it easy, wrapping up warm and trying not to get too close to anyone outside of my immediate family.

I am due in clinic tomorrow so will express my concerns then, hopefully the renal registrar I am seeing will have some idea of just how careful I need to be.

Also from a hand washing point of view - my partner has certainly become obsessive about this since I was diagnosed and I also wash my hands far more than I used to and use the hand gel a lot too, especially after handling my animals.

Hi Luce...
It's a good idea to stay away from anyone that's obviously sick. I'm always aware of people that sneeze around me or look ill and I do my best to keep my distance but life must go on :)

I too have had the occasional lung infection that requires antibiotics but I must admit, not too many over the years since diagnosis.

The important thing I guess is to be alert, not alarmed. Be careful but don't let it rule your life.

As for those kids with conjunctivitis, be careful :) We had a friend ver here once that had it and I got it bad. It was taken care of by the usual ointment but it wasn't pleasant. It's not life threatening though and won't manifest itself as anything but conjunctivitis if that's what you're worried about.

[Luce]

Ok, so clinic appointment went well today. I start 100mg of oral cyclophosphamide twice a day on Thursday for 6 weeks and they're continuing to reduce my prednisolone dosage every 2 weeks. Also continuing with the Co-Trimoxazole whilst on the chemo and Alendronic Acid all the time I'm on the steroids.

I asked about infections etc and you're bang on Andrew - avoid anyone who's obviously sick. Would have been nice if my sister in law had told me the kids were ill before I visited but ho hum!

I know I'm going slightly off the germ topic now but can anyone explain blood test results to me? My doc mentions them but doesn't really tell me what normal levels are - for example today I was told that my ANCA level is currently 59 but was 327 when I was admitted to hospital. Last time I was at the clinic he said that the figure they use to check the inflammation of blood vessels was 134 when I was admitted but had dropped to 40 with my last blood test.

I'm sure I'll get to understanding all this in time but its still only been 6 weeks since I was diagnosed so I'd be grateful if someone could interperate the above and tell me what it really means.

Also thanks Andrew, good to know that the worst I'm in for is a nasty bout of conjunctivitis and that it wont trigger anything more sinister.

[Twice]

Hi Luce,


The numbers they are talking about are probably a combination of the ANCA and ESR or CRP.


ANCA is measured by 'titre'. What they do if they get a positive result is to start diluting the sample and checking again to see if the ANCA is still positive. If your ANCA is '2', it means that your blood provided a negative result after two dilutions. If it was 329, it only became negative after 329 'dilutions'. Therefore there is 'more ANCA in your blood', if you like, the higher the number. Different labs operate to slightly different rules, so it's best to ask them or your doctor the level they consider to be a 'negative' result.


The other number could either be CRP (C-reactive protein) or ESR (erythrocyte sedimentation rate). Both get higher according to the amount of 'inflamation' there is in your body. Neither are particularly accurate (CRP is thought to be more reliable), but they are both useful guides to vasculitis activity (but by no means only vasculitis). Normal level for CRP is about 5-10, and for ESR between 10 and 30, rising with age.


Hope this helps,


Sarah