Tuesday, June 23, 2009

Post Infusion [15 days]

I am 2 weeks from the start of my first IVIg infusion and I feel really good. I have NO more sinus infection....it finally went away!! Big benefit of the IVIg there in itself! My energy level has been pretty good as well. I think I have had pretty good days overall and not really any bad days to speak of since the last day of the infusions. I go back on July 9th for the next round of infusion and then i will start going every 2 weeks. I will go back in mid July for another MRI to see how the lesions are doing and follow up with the Neuro shortly after that. Right now I have to go and get bloodwork done every couple of weeks to watch my white blood cell counts and liver and kidney levels.

I have been receiving hits on the blog quite a bit here lately from the web. I enjoy talking to people about LD and being able to help them if I can. It also lends to those who think they can give advice yet wish to remain anonymous.....often they tend to not know my situation and what applies to me. I love meeting new people and talking about these diseases, be real and honest with me and I will do the same with you! Otherwise, there is no need to even take the time to send a comment to me!

Friday, June 19, 2009

Summer Time Fun

Well, last years pool frustrations have finally paid off.....and the kids want to be in the pool ALL the time. They are having a blast and we are swimming alot. This one is turning into the snorkle queen, and she picked it up on her own. She is pretty good at manuevering the whole pool with the snorkle and mask now. They stay on their tiptoes in the pool so much that they break the skin on their toes open all the time from rubbing on the pool plaster. We are going through the bandaids...I need to get them some pool shoes. Even their little finger tips are getting blistered from rubbing the walls. But they do not care!! I think they would swim 24-7!!

Monday, June 8, 2009

Infusion Day 1

So here I sit, having my first round of IVIg infusion and will be here for another 2 hours. The IV was not too bad......Sharla, the infusion nurse, is really nice and did a good job. After about 10 minutes of the IV, I started to feel a little light headed and loopy. It only lasted for a few minutes and then it passed.

Wednesday, June 3, 2009

It's a GO!

So next Monday I will be starting the IVIg infusion treatments. The infusion nurse called today and said that the insurance approved the treatments. WOW! I was surprized! Next week alone is a cost of around $20000.oo dollars for 4 days worth of induction, and then I will go back once a month for an infusion and it will cost around $10000.00 a month I believe. Our insurance will cover the complete cost after we meet deductable(already there) and $3750.00 out of pocket. We are about $2800.00 shy of the out of pocket right now.....BUT then I will be covered 100% on everything else for the rest of the year. WOOOO HOOOO......you know you are getting old when you get excited about meeting your medical deductables and out of pocket expenses..... Sad! :)

I went back to the ENT today and he is changing my antibiotic again. I still have a sinus infection but it is migrating all around now. He seemed excited about the IVIg treatments. He seems to think I will feel much better after the treatments and will see great improvements in my infections and allergies. He thinks it is a great thing so that we can avoid surgery!! YEA!! I was not looking forward to sinus surgery at all!! The more I read on it, the better the benefits are sounding to the infusions.....I am just kinda nervous about the IV part now. I hate being stuck and dug on because my veins are so little and I bruise so easily.