Tuesday, September 16, 2008

Allergy Update Anyone?

So as you know on friday I went for allergy testing and some blood work. Today they called me and asked me to come to the office to talk with the doctor about my labs. That is never a good sign. I was pretty curious even though there were really only three options in my future. They are 1. Do nothing. 2. Allergy shots. 3. Gammaglobulin infusions.

I knew the answer could not be 1 since they wanted me to come in and talk to the doctor. Since Friday I've been thinking allergy shots for sure, considering the allergies that came back positive on friday. In case you haven't figured it out Gammaglobulin infusions are in my future. Apparently I have Hypogammaglobulinemia, which he thinks will lead to Common Variable Immunodefiency. Which is very overwhelming at the moment. It does explain a lot, more than I am willing to explain at this second.

http://www.immunedisease.com/US/patients/IDF/cvid.html <~~ More info here

The plan is to find out which pharmacy my insurance will pay to whip me up some gammaglobulins and visit my allergy doctor once a month for 30-45 minutes for an infusion. At this point I'm not sure how long I will have to do that. These should be starting in the next few weeks and we'll have to go from there to see if these globulins are working and doing their job.

So, how was your day?

9 comments:

Kathryn said...

Awe, Hell, Shelly.

BUT. Look at the bright side. Its treatable. You'll finally start feeling better, AND of course, it could be WAY worse.

Hang in there.
~Hugs~
Kitty

markincleveland said...

Hi,
Sorry to hear of your diagnosis. The good new is they know what it is; the better news is no one ever dies from CVID.

IViG infusions take much longer than 30-40 minutes usually 2-4 hours. After you've had the first one in a Doctor’s office, you should be able to have a nurse comer to your home once a month. It's a lot more convenient. I’ve had a monthly infusion for over 25 years. You might want to join the Yahoo group for people with primary immune diseases.

Annie said...

I disagree with markincleveland - CVID is a very serious disease. Perhaps no one dies from CVID, but the associated diseases and illnesses can be fatal.

There's also the patient forum on the IDF web site for support and information.

Shelly said...

Kitty it's very overwhelming and a lot to figure out. I am working on seeing the bright side, because atleast I won't keep getting sick!

Marc thanks for the input, I will def look at that group.

Annie thanks for the support and info about that site, I had not come across it in my searches yet.

Annie said...

Shelly,

I didn't intend to come across as unsympathetic or abrupt this a.m. I think I was reacting to some of the "flip" posts I read. It's great that you're looking on the bright side, but you also need to be realistic.

Everyone is different, but generally, it takes 6 mos. to a year of infusions to get your Ig level up so that you see a difference in how you feel. The web site I mentioned earlier is the Immune Deficiency Foundation - everything you need to know is on that site, including toll-free numbers for you to call for help, advice, etc., and even a consulting program for your doctors so that they can talk to clinical immunologists if they have questions about how to treat you or help you. The url is:

http://www.primaryimmune.org/

I wish you luck...

markincleveland said...

Shelly,

I was diagnosed with CVID in 1982 and have had a monthly infusion each month for the past 26 years.

I’ve had a very normal healthily life. I've been married for 25 years and have 2 great kids – well they are teenagers. It appears you were one of the lucky ones and were diagnosed early enough to have avoided permanent damage to you lungs, GI or sinuses. The IDF has studies that show the average time of diagnosis is over nine years from the onset of symptoms.

Personally my illness had not interfered with my career. I’ve owned several businesses and been CEO of several others; the largest had over $100 Million in sales and 500 employees.

If I have any advice for you, it would be not to listen to the naysayers about how sick you are and how debilitating and terrible your illness is . . . Personally, I believe a major factor dictating how well you will do is your attitude. If you allow your illness to define you, it will consume you.

My last piece of advice is to take charge of you health management. No one will be a better advocate than you. Learn all you can. The IDF website is a great place to start. The first decisions you'll need to be involved with at what brand of IViG you will start with and how large a dosage you doctor will order. The dosage is usually a function lf your weight. I weigh about 200 pounds and get 60 grams of Gamunex.

Another caution I offer is the faster your infusion, the greater chance you’ll have side effects. Make sure they go very slow. If you start having side effects tell them to slow it down even more. If you have side effect in all probability they will be worse on the first infusion and be less each subsequent infusion. Sometimes side effect that start after you infusion are caused by IViG helping your body fight any infection you have.

Good luck

Shelly said...

Thanks Marc and Annie maybe we can chat more over email? I still have lots of questions I think that you would be of great help.

alwyssmilin818@yahoo.com

markincleveland said...

I just sent you my email and phone number. I am a pper volenteer with the IDF and am gald to talk. Feel free to email or call.

Annie said...

Shelly,

Mark has been dealing with his PIDD longer than I have - well, he's been getting treatment longer than I have, so I'm sure he'll be great help. I was officially dx'd last October through an NIH study on genetics & PIDD - I had one of the three genes they had identified. I've been on IVIG since February.

Unfortunately, even though my docs found my immune system was depressed in the late 1980s, they didn't do a thorough workup, so I have some lung damage and GI problems. Markincleveland is right that you are very lucky to have been dx'd young - there's no reason to think you'll not have anything less than a normal, healthy life. He's also right about the infusions and advice to take charge of your health care.

I'm sending you my email address and phone no. Feel free to call or email with any questions...I'm happy to help when I can and I'll defer to the IDF or Mark when I can't. My Dad was a physician and I do medical research for a group of docs, so I'm a bit more "medical minded" than some...but I don't pretend to be a physician. I can tell you what I've experienced first hand, offer you lots of empathy and support, and even some humor...which is very important!