Need some advice about dating a girl with Wegener's.

[fuzzybabybunny]

*sigh*

I feel low even asking this, but it needs to be asked.

I'm 26, my girlfriend is 22 and she has Wegener's. She was just switched to Rituximab from Methotrexate. I need to figure out if being with someone with Wegener's is something that I can deal with - for the rest of my life if we get married. I want to figure this out before things get too serious. I don't need replies like "you should leave her because you obviously don't care enough about her by asking this."

I don't know what the outlook is for people with Wegener's. I've been there as she's coughed up blood. I've been there as she's clutched her side on the floor, overtaken by the pangs of pain, described by her as "someone cutting her open and f*cking around inside." I've been there when she's been too weak to do things, and I've helped walk her to the bathroom when she couldn't do it herself. I've been there as her nose has gotten softer and softer as her body eats away the cartilage in her nose.

She's been on Rituxin for only a couple months now and we don't fully know how she'll respond. She hasn't had any issues so far.

My parents, who are in their 60s, are absolutely opposed to us being together. They've never even seen or met her but they say I need to be smart and break up with her immediately. Through the years, they've know people who have fallen for sick people, and there's always so much sorrow as the other person passes, sometimes slowly, and sometimes ruining them financially. They tell me that I absolutely don't have enough life experience to realize just how bad of a situation I'm getting myself in. They're pleading with me to break up with her. "There are so many healthy girls out there who you could be happy with. Why would you pick her?"

My mom's an acupuncturist so she knows some medicine. She says my girlfriend will eventually waste away - her eyes will go blind, her major organs will waste away, her beauty will be replaced by numerous deformities, and she will eventually require constant care before she passes away.

They say that she might be good now because she's young, but the long term outlook is abysmal, and that's what I need to look at when I think about someone I may want to marry and have children with. And they're afraid our children will have Wegener's too.

So - I'm a little desperate and quite sad. I need some advice and want to know what is the present outlook for people with Wegener's. I heard that the survival rate is 90%, but of course, that stat may not be entirely accurate and doesn't show *how* they are surviving, what their quality of life is.

[Sangye]

Hi fuzzybabybunny, it's nice to meet you. I'm glad you asked us--people who know the truth!

Okay, let's clear up some information. First, your mom is unbelievably misinformed about Wegs. It's not a progressive disease. Wegs does not progressively damage organs and it certainly doesn't cause deformities. It is also not genetic.

Wegs can be a difficult disease to manage, however. It's highly variable and sneaky, and it requires very specialized care. Some of the symptoms (eg fatigue) can persist even when one is in remission. It can be difficult to be around someone who is chronically ill, even if they're not severely ill all the time. Some people go into remissions that last decades and are quite strong during that time. With Wegs there's no way to know which person you'll be and that changes all the time.

The only advice I can give you is to listen to your own heart. Your relationship with this woman is between the two of you. Be honest with her and honest with yourself and you'll be fine.

[vdub]

it certainly doesn't cause deformities
.....with the exception of a saddle nose caused by sinus issues and, of course, weight gain due to steroids.

But, as Sangye says, listen to your heart.

My belief is that you see the worst of wegs on this forum. There are many people with wegs who are living a normal life. Wegs is a very individual disease. I think this forum draws those with a new diagnosis or continuing problems, but that's just my guess. I have recently gone into remission and have noticed that I visit the forum less often because I have fewer questions and no new news of my situation.

[delorisdoe]

Having lived with wegeners for ten years if I try to put myself in your position I would not let wegeners be a reason to break up. Your mother cares about you and I have been an ear witness to the mother in laws opinion of a sick wife and it is never pretty...mothers and their sons. When I am in a flare my quality of life is not great. I have no real sinus issues mostly just lung. If my lungs are deformed my mother in law cant see it. For the last ten years I have been lucky enough to spend aprox 7.5 of those years with no serious complications. I work 50 hours a week and my job is hard. I have a child and a husband and I own a home. You could fall in love with a healty girl who is lazy or will hurt you. I think your girlfriend is lucky to have access to rituxan. Many have done well on it and most people have minimal side effects.

I will tell you this, having my husband stand by me through it all meant alot. If you do give it a chance I think you will find life is not as bad as your mother dreams it to be. I am not waisting away.

I also dont think you are bad for asking these questions. I would ask them as well.

[mishb]

Hi Fuzzybabybunny, Congratulations on having the guts to actually look up her condition and to come on here and ask this question.

I agree with what the others have said and I hope some of the husbands, wifes, fathers and mothers on this forum who are carers/loved ones of a person with Wegeners, come on here to give their side of the story.

I would never tell you to leave her. You have come on this site to find some answers and that, to me, says that you truly care for this girl. Maybe more than you realise.

Always follow your heart and your dreams and if she is in them, then you are probably going to be a lucky man. The rituxin may end up being fantastic for her and she will forever onwards live a happy healthy life, or she may have many pain free years and then some not so great motnhs or years, but hey..... life isn't perfect and the less than perfect times can only make us stronger.

I have two children and all the specialists I see have categorically stated that it is not genetic and WG will not be passed on.

Good luck and as I always say

[Sangye]

.....with the exception of a saddle nose caused by sinus issues and, of course, weight gain due to steroids.


Yes, I forgot about the possibility of saddle nose. It's a rare complication, though. I wouldn't categorize weight gain as a deformity.

[pberggren1]

It sounds like you really love her.

My advice is to not listen to your parents advice and spend the rest of your life with her. If you have already seen her and have been with her through the tough times and have not left yet then I see that as pretty good proof that you love her. Stay with her and grow. Grow with us. Tell her to come on here as well and we will all grow together.

I met a nice woman in 2006. I was 29 at the time and she was 22. I was up front with her right away ant told her everything. She could not understand why I could not work. She said I look very healthy and couldn't understand why I had little energy and could not go out in the sun or handle the heat. She said she loved me and wanted to get married. But she kept persisting that I find a job or go back to school. I did finally find a job that year, but I had to quit after a month or so and it set me back quite a bit. I did not flare but it was the dry air in the building that got to me. By that time she dumped me.

So please stay with her. You may be the only person that understands what she is going through.

[freakyschizogirl]

Fuzzybabybunny, hi there.

I am on the opposite side to you of having wegs and wondering who's gonna wanna take all this on? Disease and ill health, drugs, doctors appointments, weight gain and depression. To be honest if in your shoes i would be seeking answers.

I have spent the past year thinking no one would want me with a disease and all that it entails. A month ago i went on a date and now am in a relationship with a wonderful guy. He does the best thing in the world for anyone living with illness: he listens. Thats all i would ask for, just listen and be there for her. Dont plan ahead and live for the moment. My boyfriend also said a wonderful thing to me, that he loves me as a whole person and disease is just a small part of me.
The fact you are seeking answers shows she means alot to you. Make up your own mind and i wish you every luck.

[NicShaf]

fuzzybabybunny,
I'm really glad that you found the courage to come on here and ask these questions...that shows that you must really care for this girl. And, if you decide to stay with your girlfriend, I hope you'll use this site to help you both in the future.

I understand where you're parents are coming from, although it makes me sad that they think your girlfriend having Wegs will ultimately make you unhappy in some way. No relationship is easy all the time, they all have their issues...at least you know about this one up front:). And there is nothing saying that if you did start dating some healthy girl, that 5 years from now something wouldn’t happen to her. I know that sounds depressing and pessimistic, but it’s the truth. As all of us on this site know from experience, you never know what life is going to bring you.

To my point above, my husband and I were married last year. We were both happy, healthy, and looking forward to starting our life and a family together. 7 months later, I was hospitalized and diagnosed with Wegs, I was 26 at the time of my diagnosis. A couple weeks after I got out of the hospital, I told him how guilty I felt because he had married this healthy young woman, and I was no longer that person...I said that I felt he got jipped because of me.
He started by telling me I was never allowed to talk about his wife that way (comic relief is a good thing:)), and said that he didn't ever for one minute feel he got jipped. I was still the woman he married, and nothing would ever change that.

Wegs affects everyone differently, but being that she is young, she has a good chance of feeling better. I went back to work about 3 weeks after being released from the hospital, and still cook and go out with friends. I don’t usually stay out as late as I used to, or make quite as many plans, but for the most part, it hasn’t altered my normal life all that much. I get more tired toward the end of the work week, but we work around it. All in all, besides feeling tired from the meds, I feel good most of the time.

Lastly, a person is not defined by their illness, if you care about your girlfriend for who she is, then I don't see what the problem is. No doubt, there will be hard times, but there are hard times in every relationship. If you love the person you're with and they love you back, you'll get through it.

All the best to you and your Girlfriend, I hope she starts doing better soon.

P.S. I'm going to tell my husband about this thread, he uses this site too. He may be able to offer you insight from his point of view.

[elephant]

I agree with the above statements. I had Wegeners since I was around 11-12 (joint pain, eye pain, weight loss), doctors miss diagnosed me and labeled my disease Rhuematoid Arthritis. At 15 went into renal failure, aget 24 got a kidney transplant. Went to College three month after my kidney transplant and graduated with two B.S. Degrees. I am married with two adopted children. I am 46, and feel pretty good even though I am on a bunch of medicines. I feel I will live a long life and I am going to live my life. By the way, I look pretty darn good for someone with Wegeners Disease. Really!

[gwenllian111]

My husband, when we first married used to say 'im your husband, not carer' which I can actually fully appreciate from his point of view. But he's not like that now. Now he wants to 'care' and be there, and he helps me through my highs and lows.

Only this morning I was in floods of tears in bed, unable to move because of pain, and feeling very sorry of myself with my pred body (he says it's not that bad btw!!). But now I feel fine. We lead a normal family life together, and he helps support me (and each other) when we need it.

Follow your heart - but WG isn't all doom and gloom. I lead 20 good years, and a lot of that was being a 'normal' woman!

Try to look at the positive. X

[gwenllian111]

By the way, I look pretty darn good for someone with Wegeners Disease. Really!

:love:

Here here!!! It makes it sound like goodness knows what!!

[Yvonnea]

Hi,
My story is similiar to NicShaf in that I was diagnosed just after we married and started to plan a family. Yes Wegeners is ****. But on the whole it hasn't affected us too much as a couple. We have had ups and downs because of the disease, but we also appreciate the good times far more than many other couples. I am lucky in that I am well enough to work and socialise. The baby had to be put on hold due to the medication etc., but we haven't given up on that dream. I just told my Husband about your post and he is of the view that you never know what life can throw at you. I have had the Rituxan infusions and already feel so much better. You and your girlfriend are young. There are so many new medical advancements every year. Who is to say that they won't find a cure? Or Rituxan or some other new drug could put your girlfriend into remission for many years, and you can have your family etc. Don't give up on her if you love her.

[fuzzybabybunny]

Thanks guys for all the advice. I think the crux of the matter is this:

What will she be like as her disease invariably progresses? Or does Wegener's even invariably progress? What will she be like 20, 30, 40 years from now. Looking at something like Parkinson's disease, it's only a matter of time before someone with it become bedridden and unable to take care of themselves. Their loved ones have to feed them, clean them, change their bedpans, pay for medication and care, and be drained financially. Knowing this, I'm sure that many people, when given the chance, would not date someone with PD, or they would get out of the relationship early on. Yes, PD doesn't change who the person with PD is as a person, but there will be extreme hardship in the future, almost guaranteed.

Is Wegener's like this? It's fine now, but what about decades from now?

[delorisdoe]

It truly is impossible to tell but unlike parkinsons etc there is no guarantee that bad will hapen. She could live a long time healthy. Most of her life you will probably forget she has it. I for one worry all of the time about everything but I have not spent much time thinking about my health 20, 30, or 40 years from now. It is a bad answer I know. It would be easier if the answer were simply yes. I sometimes wonder how my husband ever stayed with me or married me in the first place but he has. Keep in mind there is always a chance your relationship wont work out and if it does not she will find someone else. when she is healthy and not having any disease activity her future prospects will not even need to be told right away. Her life will not end because you and her dont work out. You need to stop feeling guilty for how you feel and figure out if you want to stay with her or not. your guilt is making it hard for you to see straight. i think anyway...

[delorisdoe]

I don't need replies like "you should leave her because you obviously don't care enough about her by asking this."

I know personaly I never even thought this and I do believe that most others did not think this either. I also believe she has the very same thoughts you have.

[Psyborg]

Really there is no guarantee that she'll get progressively worse (assuming she's receiving proper treatment). We have had a lot of people on the forum that get healthy/remission and haven't had a relapse at all. There is certainly *a chance* that she could become bed ridden, incapable of taking care of herself, etc. Then you could get in a car accident and end up the same way overnight. It certainly is not a sure thing for Wegener's like PD.

[pberggren1]

Wegs is not a progressive disease like PD.

There are many many on this Forum that have Wegs and lead a fairly normal active life.

[Sangye]

Yup, like I said above, Wegs is not a progressive disease.

There are no guarantees in life. None of us can manipulate life to avoid all the possible suffering.

I'm glad you're thinking about this though. It seems like many people take marriage vows of "in sickness and in health" without truly contemplating the meaning. Even Pat Robertson came out this week and said it's fine for people who have a spouse with Alzheimer's to divorce them simply because of the disease. I thought that was disgusting. So much for the "sanctity of marriage."

[pberggren1]

Yup, like I said above, Wegs is not a progressive disease.

There are no guarantees in life. None of us can manipulate life to avoid all the possible suffering.

I'm glad you're thinking about this though. It seems like many people take marriage vows of "in sickness and in health" without truly contemplating the meaning. Even Pat Robertson came out this week and said it's fine for people who have a spouse with Alzheimer's to divorce them simply because of the disease. I thought that was disgusting. So much for the "sanctity of marriage."

Yes, I found this to be quite sickening when I found out what Mr. Robertson said. Even men of good will can easily see that society is crumbling.

[Elena]

Fuzzybabybunny, I think you need to talk to your girlfriend about this.. When I met my boyfriend I had been sick for 1 and a half year. I know he worried a lot, about our future and all the same things you worry about. But we talked about it, a lot, and as he got better informed of what wegs is and how it might affect me, he eventually decided that he would never leave me because of the disease. Making me so unbelievably happy.

I live my life like every other "normal" person. Except I get out of breath more easily than before. I don't even get tired that easily. Most days neither of us "remembers" that I'm not "normal". Sometimes though I get sick, but I get treatment rightaway and then I get better again. Of course, I don't know how my disease will affect me in the future. I might live like I do now, or I might get worse.

I'm not sure what I'm trying to say. I just had to say something, because I relate so strongly to your situation. I just know how broken I would have been if my boyfriend had decided not to take a chance with me. I hope for your sake, and your girlfriend, that whatever you decide, your parents will accept it.

[freakyschizogirl]

I just wanted to add my dad's story. 20 years ago he was married to my mum and had me and my sister. 3 years later they divorced. My dad remarried and has had a happy 20 year marriage. Flash forward to today my mum has severe rheumatoid arthritis and my stepmum has aggressive cancer and is currently on her second course of chemo.

We laugh about it because either way, with either wife, my dad would've turned into a carer.

You cant predict the future, but you're lucky that you've got prior warning.

[manalolana]

Aloha Fuzzybabybunny,
I have been with WG for about 3 years now. I have had a period where I was not functional at all. I was engaged at the time when I stated getting ill with this and shortly after, my ex-fiance decided that he does not have what it takes to support me. Things happen for a good reason and I am so thankful that we didn't work out. To me, it is worse to have someone by you who cannot accept that I am no longer as active as I used to be.

Fast forward about 2 years, I am with my best friend who is in the medical field. I actually am the one who didn't want to date. Didn't want to fee like a burden. He is aware of the consequences of the illness and still wants to be with me for the rest of our lives. And we have been together for a year now. Like you, he has been with me through varies treatments with not so fancy side effects. I can tell you that he has made this journey much less lonely. But I know it's not for everyone! Financially, I no longer have much disposable income and I am thankful if I have a day where I am functional to do my "normal" activities like gym :)

I am making an assumption but seems like you are emotionally tired. I have been also on the opposite side of being a caretaker and it's no fun. Sometimes i think it's worse than being ill myself the fact that there is nothing I can do to cure it but just being there by their side. All I can say is whatever you decide, you have to be true to yourself first. Good luck.


Thanks guys for all the advice. I think the crux of the matter is this:

What will she be like as her disease invariably progresses? Or does Wegener's even invariably progress? What will she be like 20, 30, 40 years from now. Looking at something like Parkinson's disease, it's only a matter of time before someone with it become bedridden and unable to take care of themselves. Their loved ones have to feed them, clean them, change their bedpans, pay for medication and care, and be drained financially. Knowing this, I'm sure that many people, when given the chance, would not date someone with PD, or they would get out of the relationship early on. Yes, PD doesn't change who the person with PD is as a person, but there will be extreme hardship in the future, almost guaranteed.

Is Wegener's like this? It's fine now, but what about decades from now?

[LisaMarie]

I am glad you have the guts to dig deep inside yourself to ask this question.....I have had WG diagnosis since May 2010...It has benn a wild ride...I have been sick since June 2009 ...I went into Respirtory Failure in September 2010 and almost died...MY husband changed he can not deal with this disease...We don't always look as sick as we are and most of the time I would rather sleep then get up and go to work...I am mad to be so fatigued i can not do the things with my kids I could before but grateful I am still alive to see them.....You have stood by her thru some of the tough times...so I think if you truly love her go for it....There are no guarrentees in life and no time frame that we can go by.....I wish my husband could remember our vows sickness health ...good and bad...but I can not make him understand or be able to deal with it.....I was healthy the first 8 years of our marriage and worked 70 hour weeks plus did stuff ...now i am barely able to work 32 hours a week and push myself to do things...then i pay for it cause my body gives up and I sleep for about 24 hours.....so my hope and prayers go out to you and your both are luck to have each other

[Sangye]

One more thought, fuzzybabybunny. You've asked about what she will look like, be like, etc... decades from now. Have you considered asking those questions about yourself? Can you be certain that you won't get sick? What if she goes into lasting remission and is perfectly fine but you get sick with something serious? That scenario happens all the time and is worth contemplating.

[RCOSSIO]

Hence...why I live for the "Now"..enjoy the day, live for the moment and believe that every day is special.

Its not that I don't care, but I just don't get overly preoccupied with the future.

Haha Sangye...I went back and looked at my old photos twenty years ago, compared to now, trying to figure out when Warner Bros brought "Porky Pig" out of retirement. :w00t::w00t::w00t:

[Sangye]

We know something most people don't-- that every single person is just a blink of an eye away from having the apple cart of their lives completely overturned.

[norcalian]

We know something most people don't-- that every single person is just a blink of an eye away from having the apple cart of their lives completely overturned.

well said.