Germ paranoia

[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?

[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.