Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
So much has been happening it is becoming difficult to prioritize! I traveled to my clinic this week to follow up on my progress and discuss the reactions from this past IVIG. It was an eventful day! I always know to prepare to spend a few hours at the clinic because we touch on many topics each visit. My PFTs were stable at 48% this week which was really god to see as the declines were becoming very discouraging. I am holding my eight a little bit better which let me dodge another repeat discussion on that. We talked about the IVIG since I ended up in the hospital after this recent infusion. He did not want to change anything! Doesn't want to change the brand, and doesn't want to split the dose between two different days. I am already taking a large regimen of pre meds, receiving pre and post fluids, and doing over a 12 hour infusion. I felt like I wanted to push the topic of changing brands further, but he didn't seem open so I am a bit anxious about my next dose as it is already so close to time! Too much was discussed at the appointment for me to talk about it all because I don't want to make y'all crazy. If you have any tips on things you do to minimize reactions please let me know...my creativity has reached it's limit. I am also working with a dietician now to help follow my enzyme therapy and see if we can get my weight up. Putting daily intake into perspective, she said I should be eating a minimum of 2600 calories daily to achieve any weight increase. Holy moly! How am I supposed to do that? Next problem is that a therapy I have been using for several years may be discontinued. I use an airway clearance vest that keeps the junk in my lungs under control and has done wonders for decreasing my hospital time. My old unit was having issues so they renewed my script to get a working one. I have a different insurance than when I started this, and they made an initial denial and have now denied my appeal. So I either figure out how to get it approved, pay 20,000 dollars for the device, or my therapy is discontinued and it will cause a lot of issues with my lungs. Any experience on insurance approval? I may have more topics to ask about in the near future but these are some of the big stressors right now! If you have wisdom, I would love that, otherwise it just helps to get these things out of my brain! Hope everyone is having a good night:)
Wow! Those clinic appointments sound overwhelming, but it sounds like good things are happening at the same time, I hope!
I'm really not going to be much help (as usual), and there is just a lot in your post that I do not know that much about, but here are some tips about some ways to gain healthy weight- I mean go out for Ice cream and Whataburger a few times a week to speed things up, but try this stuff too!
The fastest way I have found to get your caloric intake in for the day is to make smoothies. Not sure how you feel about fruits and veggies, but you can pack a lot of calories with the right fruits and veggies, and a Sweet potato and apple will hide the taste of almost any vegetable that is unappealing to you. Throw in some ground flax for Omega 3s so your hair and nails grow in really shiny and strong and you will be on your way!
Here is a link to high calorie fruits and veggies-toss them in a blender and drink your calories-easier than eating them. Also, Almonds and Walnuts are high in calories and have healthy fat in them so carry some around to snack on-easy way to meet your caloric goal with some healthy food.
http://www.aarp.org/food/diet-nutrition/info-05-2013/healthy-high-calorie-foods.html#slide10
If you eat some bread, dip it in Olive Oil - high in calories, again the heart healthy kind, but will boost your caloric intake. With bread, avoid light and fluffy - go toward artisan types that feel heavy, dense and solid.
Add whatever meat you like to your meals, and you should start getting closer to that 2600 calorie goal.
Appeals- Ugh and Stress.
However, you can appeal almost any denied medical service and get it approved. I do not know what health insurance you have, and what you have done in the appeals process so far, but the 1st thing you need to do is ask for either and Appeals or Patient Advocate...jump right over everyone else's head.
As was mentioned by someone who used to work in this industry, be polite and calm. as most people do want to help, but they are limited by the confines of their company policies, so how you word things is very important.
It is key that your Insurance Company know that your vest is a Medical Necessity. The best way for them to have proof of them is to have a strongly worded letter from your new Clinic Dr and anyone else who monitors your lung issues.
Insurance Companies really can not turn down a claim based an Medical Necessity, especially when the consequences for you are near death. So, I would call the Insurance Company and ask for a Supervisor in Appeals, Appeals, or Patient Advocate, and explain that your vest is a medical necessity and how you should move forward with a new claim...take notes, write down that persons 'lingo' so you can use it in your appeal. Wording is very important and someone in the Appeals Dept, is going to be using the proper lingo like it is a 2nd langusge, so listen close for key phrases and write them down- you will need them later. Then , rquired or not, get Medical Necessity letters from your Dr's
All the best Glider :)
And, Lulu...thanks for the suggestions! I do make lot of smoothies and the dietician wants me to start adding yogurt and protein powder to up the caloric intake. We are going to try to find ways to add calories in my snacks and up my meal intake. I try and eat healthy so my food has value and I am not upsetting my GI system with heavy greasy items, it's just a matter of getting A LOT more calories. I don't have a huge appetite! CVID sure creates a lot to think about:)
You have your work cut out for you, but you are persistent, so I know you won't give up. Keep going on with the appeals process, and this time with an MD from the clinic-it may take time, but it will get paid for. The insurance company really cannot deny you something that is a Medical Necessity. You are asking for a rare piece of Equipment that the people involved in the appeals process are not familiar with- it's not a walker or a nebulizer-these things they know well. By know they have read about your vest, but may not understand the magnitude of importance it plays in your life. So, a medical necessity letter from your Dr, maybe a different DX code...these may help, but keep appealing-it will get approved,
Adding protein powder that weight lifters and wrestlers use to help "bulk up" should help add calories to your diet, and again it is easier to drink meals than eat them sometimes..so choose the fruits and vegetables that are high in healthy fats and calories...
Keep us posted, and I want to know how it works out with your appeal and diet...I'm thinking it will take some time to get up to 2600 calories a day...your stomach will have to expand as I imagine it is quite small now.
Sounds like your Clinic is forward thinking and covering all its bases regarding your health... :)
LuLu