Is there any one out there with CVID in full time employment and a mother? Advise on how to keep going would be appreciated. I am beginning to run out of steam. Receiving intravenous immunoglobulin and lots of antibiotics. Any tips on diet or natural remedies?
Would love to make contact with fellow sufferers, but they must be positive, cheerful and full of humour!

Lesley

Don't know if I can always guarantee to be cheerful, positive or full of humour - but here goes.

I am early into this process/diagnosis of CVID. I'm 35 with two kids and a husband. I work four days a week as a manager with the Australian Government - a really full-on job with around 40 staff. Last year (2001), I returned to work after a year off on maternity leave with my second son. Basically, I got sick in February and didn't get better. I was referred from my GP to a respiratory physician because I had chronic and unabating respiratory infections and fevers. After countless blood tests and tests of asthma etc, they discovered a low IGG1. Further tests showed, however, that my immune response to various vaccines is still OK. So at this stage, they won't proceed with gammaglobulin transfusions - but rather keep me under observation. I think that the Immunologist has provided a provisional diagnosis of CVID. I am still constantly sick (just finished a ten-day course of Rulide). It seems from my reading that being exceptionally tired is part of the CVID - but so is being a parent of two young kids and working!

I don't know about you, but I have always had a constant battle with vaginal thrush (candidiasis). On reflection I think that this is probably part of a previously undetected low IGG1. I gave up trying to treat it - but once the CVID low IGG1 thing was detected, have taken treating it/keeping it under control as a much higher priority. And since doing so, my health has improved. I have given up totally trying vaginal creams, using only Diflucan (fluconazole) in a single dose. It's very expensive - but my health fund partially covers the cost.

As far as diet/lifestyle is concerned - I make sure that I rarely drink alcohol - because I've always found (even before the low immunity was diagnosed) that it seemed to result in my getting sick. I'm also trying to keep up my fitness -which is hard when I'm so tired - but figure that if I lose it - will only make life harder. I bought a step-machine and do it in front of the TV! I'm thinking of giving accupuncture a go. Have you tried it?

Also, as far as work goes, I've negotiated with my employer to reduce my hours by a small amount - and accumulate the sick leave. Say half an hour per day - and take a sick day per fortnight. It just means I don't push myself over the edge - and end up off work for weeks. But being a govenment employee makes this somewhat easier.

What about you? Any words of wisdom ... ? For me at my stage, I'm particularly interested in how these things progress? I can find so little about Igg1 Subclass deficiency ... and medical profession seems to have little so go on too - which makes it hard too.

Hello Lesley
I am a working Mum with one child, a husband and CVID. I am head of the maths department in a large (1300 pupil) British Comprehensive school. This is a full time, stressful job but I do it better now that I have infusions than I did when I was ill and 'only' diagnosed. I had to wait 5 years before I got any treatment specifically for the condition, not just for the symptoms. Now that I have my treatment in my own home I feel much more in control and I don't waste endless hours on the motorway travelling to the hospital. I also do my infusions at the weekend which eases potential 'afterschool' problems.
Sometimes I feel depressed and sorry for myself and reading the PIA website does not always help. I wonder what the future has in store so I feel that I've got to live life to the full whilst I can. Lack of energy can be a problem but life is too short to do all the things I want to do and do all the chores all the time. Housework gets done but not to my mums standard and I'm learning to say 'no' sometimes and to occasionally ask for favours from friends and relatives. Internet shopping is not as tiring as trailing around the supermarket!
We are lucky to be in the position of being able to travel in school holidays and I time my infusions around the trips. I get travel insurance through the AA with an endorsement from Mediquote and pack my antibiotics and off we go. I might lack antibodies but I don't see why I should not have a life.
I would love to hear how you cope - I'd like to hear from those in a similar position who are thinking positive.
Julie

Hi Leslie,
Sorry to hear that your steam is vaporizing!! I have been living with CVID for 10 years now. I am raising three children and I work full time as a teacher in New Mexico. I came across your request and it sounded like you could use some cheering up So here I am. Now I am not really an expert on CVID to begin with but I can tell you what I am doing to keep going cuz I really need it. First off, as tired as you may feel, excersize always helps at least three times a week, it will start making you feel better. I don't take a lot of antibiotics. May I ask why they have you on so many? I do drink Nomi Juice everyday, it is a natural immune enhancer. I never cleared it with my doctors but it really helps me keep going. As far as the laughter part, everything around you can be absolutely halarious if you allow it to be. I would love to keep chatting but I gotta go. E-mail me back if you wish, hope everything gets better and keep smiling.

I am a working mother for local government in Uk. I work 29 hours a week and take one day off usually Wednesday halfway through the week. It breaks the week up.
I have Cvid and have been diagnosed over 25 years at age 10. I am now 36. I am also pregnant again ( a surprise) -I am now 18 weeks and just had an amniocetisus. I was worried about infection into the sac of fluidround the baby which can cause miscarriage-but I seem OK.

I have had loads of sick leave in my time as a goverment employee since 1989. I have worked in two local authorities. I always feel -I have to workthat much harder to prove I am a worthwhile Employee. I am an accounting technician.I did Accountancy exams - but couldn't keepup tobecome an Accountant. I have very little stamina and get periods ofexhaustion. I often thought I would be retired by my employers-but something always comes up tokeep me there. I sometimes wish they would retire me too.

I try to keep going. My son is seven and has a speech and language delay =with school help (he is stamented)If you are in UK you would understand he has special eductaional needs. This is hard work. But we get by. I have subcutanoues infusions once a week at home they are better for me than intravenous-but that was better insome ways as it was once every four weeks. I had painful injections for10 years as a child so I feel priviliged to have seen the treatment gotbetter over years.

I don't know if any of this is useful. I know it can be isolating with CVID. No one understands it. At least with diabetises - it is widely understood. I am just a curiosity or a hypochondriac.It is hard. But you have to live.

I think we all aredoing a good job on this site. Keep smiling.

luv
Anne_Marie

Hi to all,
I'm new to all of this. I have been going for infusions for one year every month. I have an eighteen year old and twin 71/2 year old boys and right now they are what keep me going. I have been wanting to go back to work for years but I kept gettig sick. I've always thought it was the children always spreading germs, but then I landed in the hospital with pneumonia. I never got really great after that and my primary doctor had this crazy thought that I might have this thing called cvid and the rest is well.
I would love to know if there is any answers to the energy problem because I need to be able to help out financially. New York City is not an easy place to raise kids on i income. Any ideas would be great because the immunologists aren't to sympathetic.
Thanks.

Hi to all,

I am from Argentina and I was diagnosed CVDI when I was 23 years old. Although I had all the CVDI problems I managed to practice sports in an intense way until I was 22 years old. At 24 years old, knowing about my condition, I returned practising sports almost every two days. I am now 35 years old and noticed that practising sports regularly was very helpful to carry on with the disease. I personally believe that was so helpful that I am not currently having infusions. I personaly love sports so I could not follow my doctors advice of being careful with the it. I hope my experience might be helpful for you, but please be careful because I am not a doctor, only an attorney that believes sports were important to mitigate CVDI effects. Hope you understand my english.

Best regards,

Anyone out there with CHildren with CVID? Our seven year old son has been diagnosed today...we have so many questions!
Julia

anche mio figlio, ha la cvid.
Lui ha 13 anni, la diagnosi è stata fatta quando ne aveva 12.
Tu sei fortunata che hanno trovato così presto il suo probleva.
Vedrai che andra tutto bene.Lesley wrote:

> Is there any one out there with CVID in full time employment
> and a mother? Advise on how to keep going would be appreciated.
> I am beginning to run out of steam. Receiving intravenous
> immunoglobulin and lots of antibiotics. Any tips on diet or
> natural remedies?
> Would love to make contact with fellow sufferers, but they must
> be positive, cheerful and full of humour!

Hi to all - I am 31 and a mother of 2 (boy 14 and girl 9). I have recently been diagnosed with CVID (after 3 long years of one infection after another, including sinus surgery) and am waiting to start my treatments. I do find that some days or worst than others - I refer to these days as my 'Down'days and of course the days I feel almost my old self as my 'Up' days. I do work full time as an Accountant and find it hard to concentrate at times. I have read everything I could find regarding the disease, but still have questions. Do you feel better after getting the treatment - immediately? What are the side effects that I can expect? I refuse to let this get the best of me and have found that the little things I overlooked before, seem more important. My advise is to take it one day at a time - and do not hesitate to ask a friend or family member to help out. Take care all.

Tina

Hi All
im 27 years old, got the CVID about 7 years and i am getting the IVIG about a year now.
would love to talk with others about dealing with it.
Thanks
Roi

my MSN messanger email is - roi_roi@hotmail.com

Hi to all!

I recently underwent my first IVIG treatment. It's been a bumpy road since but am beginning to see a few good signs. About 3 days after the treatment I came down with Aseptic Meningitis and developed arthritis along my ribs. I was told it was a possible side effect of the treatment and should begin to settle down after it had ran its course. The positive I mentioned is I'm noticing that my thinking is a bit clearer; I'm able to concentrate and focus easier. I still experience fatigue and am exhausted more than I'd like to be. But, there is life with CVID... My husband and children have made the greatest impact and have helped me stay positive. I work full time and have 2 children and all the wife and mother responsibilites - but I also realized I have a responsibily to myself. For those of you that feel like you just can't make it through the day... let me suggest trying something that I have started doing. Some mornings getting out of bed takes everything I have... so I've started setting up goals so to speak for the day... getting to work, making it to lunch time, getting to 3:00 and making it to the end of the day. I find that most times I don't feel so overwhelmed. Home is still crazy but again my kids and husband help.

Also, knowing that I am not alone has made a difference.

Take care,
Tina

Hello all,

Today my allergist proposed that I have CVID based on all my infections and sinus surgeries over the last 8 years. One thing I have that I don't see in many others' emails is Hypothyroidism (my thyroid doesn't work enough essentially). He states strongly that thyroid activity is a critical part of immune problems. When I am on the correct thyroid dose, I get sick less often and have fewer of those slow or down days. Anyone else diagnosed with this or looked into it?

Rae

My 12 year old son was also diagnosed with
CVID In April 2004, He has two infusions and is doing great he getting his 3rd this week he has had a cough since he was 2 and this is the longest period he has gone without it. He is growing like a weed. I hope your son is doing well sorry that I'm just responding now I havent been on this website for awhile. I have researched this disorder so much it was making me crazy. I was scared to death even about my son's infusions but the best knowlege came from the nurses that do in home care and see all the CVID patients in my area they made me calm done. Now that he doing so well I'm much more postive. I have had trouble with family and friends because no one knows about they can't believe that my son has anything wrong with him that has bothered me the most I have had only support from my ex husbands mother and that is all. I would love to hear how your son is doing so please reply.

Amy

Me gustaría que nos pusiéramos en contacto. Padezco de CVID y he estado recibiendo transfusiones por 3 y medio años. Me ha ido bastante bien, aunque en este momento tengo una infección severa . El problema conmigo es que han sido tan repetitivas que parece que ya tengo resistencia a varios antiobióticos, y es más dificil salir del cuadro infeccioso. Y aquí en Mérida, Yucatan, Mexico, la única persona con esa enfermedad soy yo. Por lo general hago mi vida normal, pero no niego que cuando me enfermo realmente me deprimo. Hoy hace una semana que estoy en tratamiento fuerte y no mejoro además de que no dejo de toser.
Gracias por tu atención.

I feel not depressed but rather a kinship when I read of others walking the same walk. I have worked full time in a hospital for the government and my specialty up to now has been infectious disease patients, cancer patients, liver patients, and chronically ill geriatric patients. Unfortunately, I lost my stomach and about 1/2 of my intestines to gangrene so I really can't work now full time. I stopped working full time in 6/04. My patients keep sending me get well cards through the clinic and I giggle every time I hear that I keep getting another patient care award even though I haven't been there for months. The hospital has been great (I'm waiting for my medical retirement to be processed). They know this isn't what I ever wanted. I had reasonable accomodations this past 5 years. O.k., maybe being in healthcare working with the sick isn't the best match for someone with immunity problems. O.k. so my symptoms are too bad to be compatable with working full time. I really don't want them to pry my cold dead fingers off the phone some day because I didn't get a clue. I felt relieved in a way and a sense of finally, this all makes sense when I found out why I am in infection Hell all of the time. But I've always worked at least one full time job and done charity work or part time work. If I can't do what I have done, what can I do? I have always done charity work and served as a guardian/medical expert for the court system. I have decided to continue with that after my retirement goes through. It helps me keep my head on straight and there is always things in this world that I can touch and make better. When I give some one else a hand, I feel productive and I get my mind off pain or this treatment, or that appointment and I realize I don't have it so bad. I kind of like house painting and fixing up the old gals' places. I don't catch everything doing that and fixing up a house that someone hasn't been able to keep up on and making it a show case is satisfying (I was always first to sign up for treasure hunts and it's fun for me.) Doing part time work out of the home helps me keep my head on straight and I feel better knowing that some days are good and I can pace myself. I still work with patients but not in an ICU. I wash my hands to death and when I do have to go into a hospital or nursing home, the lab coat goes on. I am protecting my health. I still work with the legal system and can joke with some of the lawyers. For the fatiuge? Oh some days I do good and some days I just am annoyed with how I feel. I miss the days when I ran/did step aerobics daily but it has been 5 years, precancer, and a few organs lost later, I'm not the same person and I'm older, and I have to adjust my expectations accordingly. I am using a drug called Provigil to help keep me alert. I recall going to the cancer center and they asked me how I felt. I told um'. They told me "Don't you know where you are at? You are at the cancer center. Everyone here is tired. At least you are alive." Well, I need a little more positives than that. I have a friend who is a psychiatrist and she recommended the Provigil with a little anti depressant to help with chronic pain. It makes sense for me. Chronic pain/chronic illness can sap your attitude, not just your strength. My kids are my reason for life and when I almost died 4 years ago, I crawled back, got off TPN and went back to work with a central line in. I am older now, not the same person. Not the fit powerhouse I was 5 years ago. O.k. what are my strengths? what can I do to make the most out of what I have? I choose activities and pepper in rest periods now. I was able to roof my house that way last summer. It took 4 months but hey, it got done and it saved $8K. I know how to watch a do it yourself video. I always would tell people I work with--50 % is biology and 50% is the part you can do something about. I do take injectable iron now and B-12. My guts don't work and the anemia that goes along with my problems can sap my strength, make me have that night of the living dead pale face, I'll get dark under my eyes like someone ground a Hostess cup cake into my eye sockets or I've gone Gothe, and make me mentally fuzzy. I make sure I get outside on a sunny day and even when I feel too tired to walk much, I can ride the lawn mower. I have an important job --raising my 3 boys twin 12 year olds and a 16 year old. My kids say they like that I'm home more. They said that when I worked all the time I was so tired and sick, I spent most of the time off work on the couch or grumpy. I'd rather bake some chochlate chip cookies. Those are the sweet memories that I want to fill their childhood, not a half dead parent too sick to pay attention or help on home work. I need to be as healthy as possible and have more good days. I'm up to 4 days a week on average that are pretty good. But, that means living differently. Staying away from crowds, working in hospitals is out, but I can do alot still with what myself. Fixing up houses and painting is a fine pass time. Doing estate work is fun and I can pace myself depending on how I am doing. No more trying to shove a protein bar in my mouth between patients because I'm over booked 2 patients to a slot the whole day. I got off the hamster wheel but I still want to be productive. I take vitamins.Oh, I don't know how much it can do with my bad guts but I figure garbage in, garbage out. I had given up red meat. Now, I'm supposed to eat it every day for the anemia. Go figure. I drink O.J. to facilitate some uptake of iron from my food. What can I do to help my body do better? Hey, I'm not a health nut and I love a stiff cup of expresso in the AM and a granola bar (or a big peice of pecan pie if no one is looking). It's part of the 50% that I can do something about. Surround yourself with people who don't shake your hand with rubber gloves on. Caution is o.k. but acting like you are carrying the black plague is not. I don't go to see friends if I got a bug. I don't want to share that with their families. But, there is always the phone. I have a heck of a sense of humor.I try to make the most mundane things fun. Two doctors gave me a rather grim prognosis. I looked around, and I had gained back 2 pounds, had pink checks and was able to move on my own steam still. I told the doctor I was "medical catch and release". I told him I had heard it before and giggled saying "the mean ones live forever". I told them to keep working on the digestive tract transplants, I was going to be one of their first successes (hey, we don't reject organs easily right?) and I was going to keep going until they got it right. It's that fiesty attitude that they can't figure into some morbidity chart. Trust your self to know your body. I have always known if I was coming down with something and would tell the MD's a week in advance. Relying on white cell counts and expecting our bodies to mount the same response as others doesn't make sense. Weed MD's who don't listen when you report the symptoms. No one should be loosing organs, at least not without a fight due to infection. I have gotten smart and pick up on when I am too much for the local docs. I travel 1 1/2 hours to a university center for treatment. My car knows the way! Sure, the first time I saw the specialists, their face was white and they told me there was too much blue ink on the H & P. One guy blurted out "Well you are just sewed together like a baseball!" I had to laugh. They are getting used to me and I will always accurtately report symptoms. Plan for emergencies. I have a doctor friend who used to look after my hospice patients. He has agreed to do home visits for emergency treatment so I can get to the other medical center rather than going where they don't know what to do with me. Oh heck none of us has all the answers, but this is my current plan to live differently, live longer, and to manage symptoms, medical appointments and treatments in between. Finally, even on my worst days, I lay in bed reflecting on the day with the moonlight streaming in. I can always find good things that happened or things I am thankfull for. So days I'm just thankfull that day is over. Maybe tomorrow will be better. I am so blessed and so happy to be with my children and my boyfriend. I don't always feel that way if I'm in pain, but when it lets up, I'm so blessed and love life. This isn't what any of us had in mind. However, there are so many things I have done and so many people that I have met that have changed my life for the better because life has twisted and turned in so many unexpected ways. If everything was easy or this never happened, I would have missed all that and that would be a shame. May this little note bring you some direction as you make adjustments to your life plans,
Love,
Cathy

I am 28 and work full time with CVID. I try to exercise as much as I can and look after my diet but it can be very tiring and hard work at times. I am in the process of shifting my career to something where I can work from home before we start a family as I feel that in the long run it will be a better move for my health. I tend to get red eyes, sinus, chest infections and issues with my stomach which can make life difficult at times. I try to stay as positive as I can but I understand completely how depressing it can be some days. Would love to chat with others who have the issues as it can really get you down. Especially when Doctors can't give you the answers or the medication to fix problems that impact your life. My email address is : revolutioninheels@yahoo.co.uk.

Hope to hear from others like me.

Kristy :-)

I was diagnosed with CVID about two years ago. I go to the hospital and receive Ivig once every four weeks. I am 53 years old and do not know how long i had this (probably for a few years) because i kept getting sick. I would get bronchitis and sinus infections all the time. The Ivig is helping although i still get some infections but they are usually mild. I try to take good care of myself, keep my hands washed, etc. and i take a wellness pill every day (although the doctor does not know this) but i believe it helps some. About the only thing you can do is just watch out for infections and get to the doctor at the first sign so it is manageable. Believe me, i feel a whole lot better now than i did a couple of years ago before i started getting the IVIG.

I am a mother with a four year old son who has been what we call a walking medical book. Always sick and just done a boat load of blood work. His IgG level is not on the charts, his IgA level is very low and his IgM level is atthe lowest it can get. I have been rescearching IVIG therapy and was wondering if anyone has had it this young, and what are the side affects. Any response would be greatly appreciated. I am desperate for some answers before we go to Childrens in Seattle.

spambox@letcom.lvLesley wrote:

> Is there any one out there with CVID in full time employment
> and a mother? Advise on how to keep going would be appreciated.
> I am beginning to run out of steam. Receiving intravenous
> immunoglobulin and lots of antibiotics. Any tips on diet or
> natural remedies?
> Would love to make contact with fellow sufferers, but they must
> be positive, cheerful and full of humour!