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Discussion:
New to CVID and kinda lost
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Hi there.. Im brand new to all of this and not quiet sure what to think expect or go from here.

I have been sick my entire life. Asthma, Uti's, Gastro issues, infection after infection and now im on to insane joint pain and bursitis plus horrible fatigue. I have a wonderful pulmonary Dr who checked my Levels. So there ya have it. After years and years of you may have this or you may have that and running into wall after wall we find my Igg Sub class 1 levels are low.

He tells me I have to see a hematologist that specializes in CVID he also says I have it and should start to deal with it. I would except it so much easier if I have not just spent 40 sick years of my life saying you have this no you don't. Could he be wrong? It gets even tricker...

I am unable to work at the moment due to health reasons and a little one. My husbands stable job of 30 years has laid him off twice this year. We have no insurance. I hear all of this is super expensive. I cant go see my Dr that specializes in all of this until we get insurance. We fit right into the category of we make to much to qualify for state help and not enough to pay out of pocket for insurance which is impossible any way since I have preexisting conditions.

We were so close to finding out what is wrong with me and BAM lay off. So now what now? Do I accept I have CVID based on what my pulmonary Dr told me. Do I wait yet more months to hope for insurance and try to get into the specialist? I hate Limbo. How much more testing and how much more will I have to go though?

Im not sure if Im going to need or get infusions. I know the only ones I could tolerate is the ones at home once a week. Im not sure how we would even afford that. I have horrible veins and with the research I have done there is no way I could handle the once a month highs and lows. Im just sorta lost and not sure what to think or where to go from here. Advise please? Any where I should look or what information would be helpful? Is it that simple after all these years my levels are low so I have CVID? Help... Thanks :)
Posted on 09/25/13, 08:08 am
16 Replies | Most Recent Add Your Reply
Reminder: This is a support group for Common Variable Immunodeficiency. We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

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Email me when others reply to this topic help
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Reply #1 - 09/25/13  8:49am
" Hi there and welcome! So lets start with do you have it. If you have: low levels of serum immunoglobulins, including IgG, IgA and usually IgM and your doc gave you a couple of vaccinations, waited about 3 weeks and you did not make any antibodies, then you have a valid CVID diagnosis.

Accepting the diagnosis is different for everyone. CVID in and of itself is not a death sentence. Most people live a pretty normal life. Understand that the support groups, you mainly hear the bad because people are usually new or going through a hardship or needing to vent to people they can trust who understand what they are going through. If you have a valid CVID diagnosis, infusions are for life.

Both routes of administration are good, neither is better than the other. Some like only being reminded of their disease once a month and will only do IVIG (not everyone has the lows and there are ways to make sure that doesn't happen) and others prefer not being tethered to a pole and doing it when they want without a nurse around an opt for subq. I've done both and am now on subq.

Lastly about your doctor, people usually see a clinical immunologist. A pulmonary doc or hematologist have not had the same training as an immunologist would. You could contact the Immune Deficiency Foundation and ask for a list of docs in your area. The ones they send all treat large groups of people with immune deficiencies.

Just to let you know, without any other underlying health issues, CVID can be manageable. I developed it a few days after the birth of my daughter and have been a single mom the entire time with no help. Once I got on "optimal" treatment, I stopped getting all the stuff - pneumonia, bronchitis, ear infections...not one since starting therapy. I occasionally get sick like "normal" people lol. I work full time and part time from home so about 65 hours a week, own my own home, have 2 cats and a dog and a VERY active 10 year old. I would suggest checking out some resources such as:

www.primaryimmune.org - peer support, insurance info, doc info, etc
www.immunedisease.com - super easy to read all about CVID

and many of the drug manufacturers have a Patient Support Program. www.gammagard.com does not require you be on their product to speak to an advocate or receive any of their materials.

You'll get more info from others on here. You've landed in a great group! "
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Reply #2 - 09/25/13  9:35am
" Hi There :)

Welcome to the Group!

Kelli is a wealth of information, and just gave you the best resources available for folks just getting their IVIG treatment started and funded.
There is really not much I can add, other than we all have started off at the same jumping off point- sort of "what is this, where do I start, and what the heck am I gonna do with it for the rest of my life?"
It's a lot to swallow all at once...but if you look at Kelli's post, she kind of put things in order...so just break everything down into small pieces, and feel free to come here to vent, ask questions, or educate us on any new resources you find.

One thing Kelli mentioned is the GammaGard Patient Advocate Program...I have had a patient advocate for 2 years, and she is an invaluable resource! It is so nice to talk to someone live who has great experience with CVID, who has been through the insurance and medical systems, and can just plain identify. I can't emphasize enough how much having a Patient Advocate can benefit people, and I really encourage everyone to take advantage of this free service... :)

This is a great group of people all of whom are very will to share experience and knowledge. I think you will find this a good place to be

:) LuLu "
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Reply #3 - 09/25/13  11:19am
" Thank You guys so much! Your so kind.. I told my husband I wanted to talk with people who understand what its like to be sick all the time. Most people I come across seem to think if I took more vitamins, eat healthier, get more exercise that alone I would be better. For me it does not work that way :( For me the common cold is the devil.

Are there any supplements that seem to help you guys? While im in my waiting period Im trying to stay healthy. I have been taking extra vit d along with a multi vitamin and I just picked up some glucosamine for my joints I have yet to try. Drs keep trying to put me on pain meds and they either shoot up my blood pressure or make me loopy so I avoid them. Any thing on supplements would be helpful.

Patient Advocate- When is a good time to get ahold of one? Right after I get the final diagnosis?

May I ask what you do to work from home? I would love to work from home but every time I look for work its all a scam or turn out to be nothing. Again I Thank You all for answering my questions :) "
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Reply #4 - 09/25/13  12:01pm
" Hi Mountains,

I don't have time to respond to your entire post-have a Dr's appt but you can call and request a patient Advocate today...no need to wait.

As for diet, there are many here far more educated than I, but a healthy diet can only help you!

Sorry to keep it short, but wanted you to know you could get an Advocate anytime...more about healthy lifestyle later!
:) LuLu "
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Reply #5 - 09/25/13  5:48pm
" Thanks LuLu I will take any info I can get my hands on. So I wonder are there other immune issues that could cause my low IGG if not CVID say I pass the shot/blood work and my antibody's fight the shot. "
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Reply #6 - 09/25/13  6:12pm
" Hi Mountains

I was diagnosed nearly three months ago. I have completed a month of weekly subq with Gammagard and through Gammagard (which is produced by bBaxter) is where I signed up for a patient advocate. I pasted the link here. http://gammagard.com/patients-and-f...

I signed up online and then she called me. I talked for over an hour and she's going to check back in with my in another 4 weeks. She is someone who has CVID and has some experience with it so she was full of information and so kind. Also, when I did my first subq, I had a nurse who taught me what to do. She was telling me that the drug companies can make arrangements to help with costs of treatment. I have good insurance right now so I didn't ask more about it but she said that she tries to tell all her patients cause you never know when You might need it. My immunologist has me on Dymista for my sinuses and my insurance company doesn't cover it so the drug company subsidizes it for a year for me so that's one example of how they can cover the costs.

If there was a way to be able to have a doctor visit with an immunologist for a consult and then talk candidly with that doc about affordability issues for you, the doc might be able to help find ways to get things paid that might be helpful for you for starters. "
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Reply #7 - 09/25/13  9:32pm
" Hey there,

Everything that Zenaby and Kelli said about financial help from the drug company and even resources being available at primary immune,org is absolutely true.

I receive IVIG, not SubQ, so I don't know if it's the same, but the specialty pharmacy that supplies my GammaGaurd actually pays 100% of what Medicare and my Advantage Plan does not...meaning they pay 100% of the leftover cost of the product, IVIG Supplies like IV bags, needles, IV pole, etc.. AND, my home health nursing agency, and I lucked out with a great agency and a great nurse.
Honestly, I don't know how I got so lucky, my Immuno has an office assistant who works with specialty pharmacies and then one day I got a call and was told all I had to do was fill out a 1 page application that asked how much my rent was, my income, and my utilities..
The name of the Specialty Pharmacy I use is called Acredo, and I don't know if they are a nation wide pharmacy, but I don't think it could hurt to call your specialty pharmacy and see if they off financial assistance.

Best, LuLu "
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Reply #8 - 09/25/13  10:13pm
" Hey LuLu,
I think they might be nation-wide. I have Accredo and am in Colorado. They are the best!!! The nurse I talked about worked for Accredo. "
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Reply #9 - 09/25/13  11:49pm
" Everyone is so helpful Thank You. For now im just letting everything soak in. Im so lucky because I have a wonderful husband but he wants to make sure I don't get to far ahead of myself with out the final diagnosis. seems like so far its been a bunch of waiting. I figure all is in Gods time but wow. Do you guys have any idea how low you have to be before they decide to give you infusions? I had someone tell me that they don't even consider them unless you are at a certain low. My levels are 321 for Igg sub class1 Ref range (382-929) and the only other one that got close was Igg sub class 4 it was considered normal at 7 ref range (4-86) I have no idea how bad those are or if they are just a bit. Any one know? "
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Reply #10 - 09/26/13  12:15am
" mountains, just want to welcome you and let you know there are wonderful people with great ideas and lots of information here. I was dx this month and started ivig a week later on the 18th. so I'm a newby too. I spent time reading all the discussions before I joined because I just knew i didn't have cvid. I'm 52 and have had major stomach issues all my life including IBS, prenecious anemia dx 2011, and fibromyalgia dx 2011. and now cvid. I'm still trying to figure my way and understand things. I bought a spiral notebook and have started writing questions for the doctor. I forget when I'm in with him. I don't have much else to offer except my friendship, and prayers.

hugs
deb "

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