Who am I . . just a guy in Cleveland Ohio. I'm 61 years old. Have a great wife of 26 years. A, 21 year old son (with CVID) was his college student government president last year and ran for city council in my 2500 household city last November, He lost, but had the highest number of votes of any candidate under 21 in the state of Ohio. My 18 year old daughter graduated high school last June. She is a doing a year of community service this year as a participant in Boston City Year, part of Americorps. She will start the University of Pennsylvania this fall.
I'm also very active in the immune deficiency foundation. I volunteer as a peer councilor. The IDF will be holding a family retreat somewhere near the City this June. I hope you make it a priority to attend,. The educational program are defiantly with the effort.
Two things to remember, CVID will not damage you, it's the infections we need to worry about. The purpose of the infusions is the beef up what is missing in your immune system so that you fight infections.
I was diagnosed about the same age as you. Had multiple sinus infections and pneumonia. i was in the initial licensing studies of IViG in the US.
You ask, How bad are the treatments. To be honest it's all over the place. My son and I, and many of our PIDD friends have no side effects. I take 80 grams of Gamunex (a large dose) in about
two and a half hours with only OTC premedication. For a few, very few, patients the treatments cause nasty side effects and have to be taken very slowly to try and minimize them.
I use Gamunex. No matter what you physician says all IVig products are not the same. There have been studies showing Gamunex has the fewest side effects. Under no circumstances should you allow them to change medication without your specific approval. You should log each infusion, the speeds they give it at, the product lot number off the medication and any side effects.
If you chose to go on to any of the groups, yahoo has an active group and the Immune Deficiency Foundation's website, primaryimmune.org, has a very active forum. I beg you to realize that for the most part the only people who chronically post are the very ill ones who have nothing else to do and are emotionally consumed by the illness. Take what you read on those sites with a grain of salt.
Fee free to contact me if I can be of any assistance. Who is you doc in New York?
good luck

Thank you for all the information!! I would really be interested in the retreat. I live in Texas though... I got the feeling that you thought I lived on the East Coast.
I have been on the other sites that you mentioned and agree with you regarding taking everything with a grain of salt. I am still new to my diagnosis, only six months ago. My insurance, I get through work, has been cut back drastically. I may not be able to continue with my monthly IVIG treatments. This scares me. My plan at this point is to contact the manufacturer of the product and see if they can offer any aid. Someone suggested that I try this and seemed to think that it could possibly work. I have my doubts, but will try nonetheless.
The year before I was diagnosed I was in and out of the hospital constantly. Always bladder infections and abdominal infections. At one point I got pleurisy. I went in thinking I was having a heart issue and it turned out to be another infection. The entire thing just seemed so weird. It took me 5 years at death's door again and again to get a diagnosis. It seems to me from reading so many peoples stories, that diagnosis is a huge problem.
Thank you for sharing. It is good to hear that you have such a wonderful family and great support. I can tell you without that, it is very hard.
Happy New Year and best wishes.

June 25, 2010 5:00 pm -
June 27, 2010 12:00 pm IDF Retreat - Doral Arrowwood Conference Center, Rye Brook, NY
IDF Retreats - For Persons Living with PIDD & Their Families

The IDF Retreats provide an opportunity for people living with primary immunodeficiency diseases to create relationships with others who share common therapies, experiences and feelings. This is a time for all family members - parents, siblings, children and partners - all those who play a role in the patient's life, develop better coping strategies while learning about treatment and management of these deficiencies.
Leading immunologists will present the latest on medical practices and lead question and answer discussions. Life management and everyday concerns will be featured in panel discussions. There are age-appropriate learning activities for everyone, and of course, there will be fun. By participating in recreational activities, families spend time together and get to know others in similar circumstances.
Sponsored by Baxter Healthcare, CSL Behring, IgG America/ASD Healthcare, Octapharma and Talecris Biotherapeutics

Online registration will begin in March 2010.

August 13, 2010 5:00 pm -
August 15, 2010 12:00 pm
IDF Retreat - Hotel Kabuki, San Francisco, CA
IDF Retreats - For Persons Living with PIDD & Their Families

The IDF Retreats provide an opportunity for people living with primary immunodeficiency diseases to create relationships with others who share common therapies, experiences and feelings. This is a time for all family members - parents, siblings, children and partners - all those who play a role in the patient's life, develop better coping strategies while learning about treatment and management of these deficiencies.
Leading immunologists will present the latest on medical practices and lead question and answer discussions. Life management and everyday concerns will be featured in panel discussions. There are age-appropriate learning activities for everyone, and of course, there will be fun. By participating in recreational activities, families spend time together and get to know others in similar circumstances.
Sponsored by Baxter Healthcare, CSL Behring, IgG America/ASD Healthcare, Octapharma and Talecris Biotherapeutics

Online registration will begin in March 2010.

If you want, you can email me off the group and tell me what you mean by your insurance has been cut back. I'll give you some places the might offer some help. lev@consultant.com.

good luck

Who is your immunoligist in Texas? The two I know are
Stephen Miles, MD
All Seasons Allergy, Asthma & Immunology
The Woodlands, TX
and
William T. Shearer, MD, PhD
Texas Childrens Hospital
Houston, TX

My immunologist is Howard Roseblatt. He opened an infusion center at the Dell Children's hospital in Austin which is where I go for mine. He is well known and seems to have a very good reputation. I trust him and like him, but he is not my 'go to doctor'.
Tomorrow I am meeting with an insurance specialist to see if there is some way to supplement my current work insurance. No matter what happens I know I will be spending every cent I make on my medical bills. I am only 6 months into my infusion therapy so I am hoping that after a full year my other ailments will subside and I will not have to pay so much extra out of pocket. If I could just stay completely well for awhile. I know that I will never be 'normal', but if I can stay out of the hospital and clinics it will be huge.
thanks for your input. I am always learning more. It's a complicated condition isn't it...

What type of infections are you still getting Fezzwig?
I am doing infusions again and have been for about the same amount of time you have been getting them, if I am correct.

I'm doing much better.
I'm not getting the dental abscesses like I did in the past.
I've only had one since treatment.
My fungal problems are minimal compared to the past.
I'm not in the ER now that I am off of Gluten, Dairy and sugar.
So most of the time my asthma is okay.
When I had trouble I was able to get it under control without the need of ER or the hospital. Whew! I'm SO GLAD too.

I'm going to have bladder surgery after I get a pre-authorization.
This will help me not have infection issues too.
I also use cranberry caplets and that keeps me pretty much infection free. Also, high doses of probiotics makes a huge difference for me too.

Yes, I used to get an infection every time I went to the dentist. I actually had to have 2 teeth pulled out and they couldn't figure out why this was happening to me. Now I take antibiotics for a full week just to get my teeth cleaned.
The bladder thing, what are you having done? I am an 'expert' on bladder issues since that has been my achilles heel with this disease. I have interstitial cystitis. A terrible diagnosis, but I have learned a few tricks. I am on a prophylactic dose of Macrobid to keep my urine sterile which helps. I used to go to the hospital twice a year for a bladder 'stretch'. Forget it, it takes forever to recover and you may not even need it.
Sorry I am just babbling here... tell me what are you having done?

Hi Fezzywig,
Well with my bladder, I use cranberry caplets to prevent infections, and bladder spasms. It works for me.

As for surgery.....
I will have a polyp removed from a place near the bladder that is interfering with hormone levels.
I will have a sling installed to repair a urethral prolapse.
http://www.umm.edu/womenscenter/bladder_repair.htms

I've had lots of tests to check the nerves, muscles, tissues and surrounding organs. Geeze! I am so glad these tests are done. It's really stressful, uncomfortable and painful.

I'll be glad when the surgery is over and my life will be normal or fairly normal. YAYE!

wow, you have been through the ringer. I cannot take the cranberry capsules with my interstial cystitis because they are too acidic. That's why I take the Macrobid, to try to ward off anything that tries to sneak in. So far I am doing pretty well and have not had a real bladder infection for 4 months. That is the longest I have gone in 10 years. I can't believe it myself.
With interstitial cystitis your bladder begins to scar over, so that's why every so often they like to do a coloscopy, fancy name for a stretch, in order to keep a more normal capacity. I haven't had one of those in over a year and don't plan to unless things get bad. I think the infusions and the Macrobid are helping to keep the scarring at a slower pace.
I wish you the best with your procedures.. when are you going?
I can't wait to check out the link you sent. thank you. Keep me posted on how you are doing. all my best.

Oh fezzywig,
I think you are going through more than me right now.
I do have the frequent to chronic yeast and thrush problems.
Although, I've I'm proved a lot.

I cannot use the cranberry fruit or juice do to the acid.
The capsules and caplets don't seem to bother me.
I also use Protonix for Acid Reflux.

Did you already try the capsules or caplets?

I cannot take the Macrobid. I am allergic to it as I am allergic to most antibiotics.

Goodness, I don't have the scaring, be stretched (Gosh! that sounds painful.) and am not experiencing the chronic bladder infections for a good while. I'm so grateful.

I know I have a lot of other medical problems.
I'm no better off than the next person.

I'm glad you found something that works for you.

I don't know when the surgery is yet.
I'm waiting for my insurance to authorize it.
Then I'll schedule the surgery.
I suspect it will be in March and that's just speculation.

Thanks for all of your support.

Strangely, the link doesn't work and says the page is no longer available and yet that's not true.

I did the search on bladder repair.
Here are the results.
http://www.bing.com/search?q=bladder+repair&src=IE-SearchBox&FORM=IE8SRC
Then click on both of these links. One is a lot of data to read and informative. The other has a video of an interview with a Uro-GYN specialist.

Bladder Prolapse (Cystocele) or Urethra Prolapse (Urethrocele) Surgery
Two common forms of pelvic organ prolapse are bladder prolapse (cystocele) and urethral prolapse (urethrocele). A cystocele occurs when the wall of the bladder bulges through the ...

>>www.webmd.com/urinary-incontinence-oab/repair-of-the-bladder-or-urethra

Minimally Invasive Bladder Repair for Stress Urinary Incontinence
Minimally invasive surgical procedures are often used to treat the most common type of incontinence, stress urinary incontinence (SUI). This condition often results from inadequate ...

>>www.umm.edu/womenscenter/bladder_repair.htm

I hope this works out for finding the sites.
:)

Wow I have so much in common with all of you! For the first 2 weeks of my life my parents had to hold me up and suction out my mouth and nose so I could breathe. I have asthma, and after moving to Canada at age 7, I got pneumonia for the first time. From that point on, I have never been able to go even a single year without antibiotics for some kind of respiratory infection! I've had pneumonia over 20 times, countless episodes of bronchitis, pleurisy 6 - 10 times, and innumerable sinus infections. We moved back to California when I was a teenager, and while I was sick less frequently, I still get all of the infections. In fact, over the last 4 months I have not had any truly healthy days!

In addition I get the UTIs, have had many eye infections, pasteurella infections, and am getting increasingly intolerant of antibiotics. I have cut dairy out of my diet for the last ~20 years because on top of upsetting my stomach it also leads to sinus infections.

Upsetgirl, how are you doing with your treatments? I'm worried about starting my own treatments, but really seeing them as a lifesaver at this point.

Thank you all for being here :D

I am 40 years old now and trying to hold down a full-time job as a software engineer. I believe that if I can start my IVIG treatments soon, I'll be able to keep my job. It seems that the only way I can stay healthy in the meantime is by isolating myself. When I have to go to the Dr's office I wear a mask, and I avoid public places as much as possible. I've been housebound for months now!

Hi PBcup,
The IVIG treatment is the key.
Some places allow an treatment 4 days prior to one month of the last treatment.

Vitamin C helps me stop something that is about to begin.
Since you are still getting so many infections, it may be wise to stay on a sizable dose of vit. C.

For the UTI's cranberry capsules or caplets have been my savior.
At one time I needed them daily to remain infection free and to prevent urethra spasms.

If you choose, you can use fresh or frozen cranberry.
Don't waste your time a cranberry cocktail juice.
Note: It is not cranberry juice and I've never seen any either.
It is a cocktail and thus no straight cranberry.
Also, there is often too much sugar in these type of drinks leading to thrush, yeast or a general Candida.

Since you are on antibiotics so often, it would be wise to upper dosages of Probiotics. The antibiotics are killing the good and the bad. The Probiotics will replace a lot of the good bugs and therefore you'll do better with your health.

When I have sinus congestion, I irrigate my sinuses with saline.
I spray and sniff in if I can and then blow out until the sinuses are clear. This I've done multiple times daily till the problem has finally cleared. I get well faster and I do not get as sick.
Some people must irrigate daily sick or well.

NEVER, allow yourself to become tired or over tired.
Always get enough sleep and if you need a nap then make sure you get that nap.

It's smart to get a sleep study.
The reason is that if you have a sleep disorder your health goes down hill because your body is always tired.

I'm one of those people who does have a sleep disorder found by a study that I took 3 times.

I hope this data is helpful.

PBcup,
I forgot to mention that I do not use dairy products.
I do use a veggie cheese from Trader Joe.
Trader Joe has the cheaper version and it tastes good along with a good texture.

There is another brand, forgot the name, in a green back.
The choices are mozzarella or cheddar. This is also good.

I use Dream Rice milk.
This comes in a carton like cows milk.
This tastes pretty good (I love it.) and I'm JAZZED to find a milk I can drink. I mention this one specifically because it does not have any carrageenan in it. I'm carrageenan intolerant along with dairy, gluten intolerant and highly processed foods intolerant.

Hope this helps.