CVID Update!

Wow! I have not been very good about keeping this blog updated with the ups and downs of having CVID! The past year has been a roller coaster ride. That may be putting it mildly. LOL!

Where to begin... well I am no longer working due to the doctor taking me off work.  I continued to get bronchitis, sinus infections, and pneumonia. I had decreased my hours to half days days and then the doctor felt it best for me not to work.

So... I started the long process of disability. I am still on the long process. I was denied and now I am awaiting the hearing level, which I was told could take as long as June of 2013. I am using a company to help me with this called Allsup! Wish me luck!

Now on to how I am feeling... Every day is different. Some days I feel pretty good like I could take on the world. Most days are filled with fatigue, fighting whatever infections I have at the time (ie: right now sinus infection), and trying to function like I am GREAT!

I still have amazing support from my husband and daughter. Who truly are amazing and understand. It really sucks missing special occasions like weddings, graduations, etc., because I either don't feel well enough to attend or I am nervous that I might get an infection while being around so many people.

I will try to keep you (my wonderful followers) up to date more in the future!

I am a fighter and I will keep on fighting! :-)

My First Experience With IVIG

On Monday, May 2, 2011 - Treatment Day

After being sick for so long I am so very anxious to feel better.

I have read a lot of forums and the first thing everyone says is to drink lots of water (I did that!) and to avoid caffeine - a little harder to do since I love coffee, but I avoided this to make the treatment smoother.

My infusion started at 9:30 am with Benedryl and then the IVIG. I did not experience any headaches or nausea while I was at the doctors. I was pretty sleepy though and slept off and on while the treatment was being administered. The tiredness continued into the evening and I slept fair that night.

Tuesday, May 3, 2011 - The Day After Treatment! Not A Fun Day!

I had the worst headache of my life with nausea and aches to follow. It was not a good day! :-(  I felt like my head was going to explode! BOOM! I tried to drink coffee to see if  part of my headache was due to no caffeine, but soon found out that was not the case. I have missed so much work already - I was disappointed I could not work today. With that major headache it would have been impossible to concentrate no matter how hard I tried.

Wednesday, May 4, 2011 - The 3rd Day After Treatment - Things Are Looking Up! :-)

My headache is much better, just lingering now and balance seems to be a tiny bit off. LOL! I feel more like myself today! (I'm back! :-D) I am less fatigued and no nausea at all today! Woot! Woot! I will continue to drinking lots of water. I took one more day off work to give myself the extra boost.

I want to thank everyone for all the help and understanding the last few days. I hope these infusions get easier and easier as time goes on.

IVIG

What is IVIG or Intravenous Immune Globulin?

IVIG is a plasma product formed by taking antibodies from about 20,000 donors and mixing them together. Infusion of IVIG has proven effective in several immune deficiency disorders, including nearly all autoimmune conditions. The sooner you treat the patient with IVIG the better the results.

How does IVIG work?

IVIG is used in immune deficiency where the body does not make enough antibodies, IVIG supplies them.

Why is IVIG so expensive?

IVIG is obtained from plasma donors who are paid. Then the plasma is sent to a processing centers for mixing, antibody removal, chemical treatment and filtration to remove viruses. This is followed by the products to be freeze dried. All this ends up for IVIG to be priced at $ 48 to $ 60 a gram (cost price of IVIG). A single infusion of IVIg may cost about $3000 for a child to $10,000 for adults.

What are the common side effects OF IVIG?

IVIG at times causes patients to get a headache, which is more common in females with a history of Migraines. After IVIG infusion some patients may experience fatigue similar to getting a Flu, which is due to antibodies interaction. IVIG may also cause to patients get a rash and doctors recommended they take Benadryl or even steroids to avoid this. Remember their are a lot of antibodies and some may result in odd reactions.

How can one reduce the side effects of IVIG?

Remember to drink eight glasses of water a day for hydration before starting the IVIG treatment and continuing this a month after the last IVIG infusion.

Common Variable Immunodeficiency Disease (CVID)

I was recently diagnosed with a genetic disease called Common Variable Immunodeficiency Disease (CVID).

CVID is relatively rare (1/50,000 people are currently estimated to have it--that's 6238 Americans based on the 2010 US Census, or 137,888 based on the 2011 estimated world population of 6,894,400,000) yet there are many people out there who are suffering and don't know that they have this disease.

They spend their time feeling horrible and sick and tired all the time and don't know that there is a treatment. Many patients with this disease go years looking for help and knowing that something is seriously wrong.  I am thankful that my doctor ran a blood test and sent me to a specialist.

I want to help spread awareness of this devastating disease. With proper treatment and early intervention a patient can live a full and nearly normal life. However; if the patient doesn't get diagnosed until later in life, the chances that they will die from infections or lung damage are greatly increased. That is my motivation for creating this blog.

Please check out: 

www.immunedisease.com/patients-and-families/about-pi/types-of-pi/common-variable-immunodeficiency-cvid for more information on this subject.