Doctors and Insurance Companies

Yesterday I was chatting with a friend who has been fighting with her insurance company for a year to try to get coverage for infusions, and she told me that they had finally agreed to cover her for a year!!! I'm so happy for her because she's been so sick for so long, and constantly had trouble finding doctors who would help her. It shocks me that so many members in my favorite support group have had doctors refuse to treat them once they found out that the person had CVID! Makes me think they swore a hypocritical oath rather than the Hippocratic oath! Sometimes these doctors will admit that the case is too complicated for them...but don't they consider referrals at least??? I mean, we CVID patients are desperately seeking relief from pain, gastrointestinal problems, breathing problems, skin problems and doctors just say "You're too complicated, get out of my office!"? What's wrong with this system?

Update

The specialist called and told me that they've started the process of authorizing the switch from Hizentra to Gammaguard SD with my insurance company. They are planning to have me start at one treatment a week. She also said that the specialty pharmacy (Accredo) said that if my insurance is cooperative then I could be transitioned in a as little as a few days. I'm planning to just skip treatment this Friday since even if it all gets approved this week, they won't be able to get the supplies to me in time.

If my insurance company causes problems or drags their heels too long, I might have to go back to doing Hizentra, but the doctor said that they'd give me steroids so I could get through it without a reaction. I really hope that doesn't happen! Wish me luck people! :)

Even though it's now days after my last infusion, my legs where I inserted the needles are still very itchy, and I'm getting a rash there. Last night the sites were lumpy, not from a build-up of medication this time, but from the rash.

Ninth IVIG Treatment

This isn't supposed to be a stressful day for me...at least, not in my book. The nurses have been hassling me about increasing the rate to 75 then 100 because they close up shop at 6:00. Because I didn't want to do it, they called my doctor and apparently my doctor is not in the office today so one of her colleagues who has never seen me called and said that they should give me the choice of either increasing the rate to get my full dose or cutting me off at 5:00 pm and sending me home if I want to keep it at 50. I'm a bit upset over this. I came in 1.5 hours early this time and according to my calculations it should take 8.5 hours total for the infusion. They started it at 9:00 and close at 6:00...that means it should be done at 5:30.

I agreed to let them bump it to 75, and I'm pretty confident that it will be done by about 5:00, since last time I came in at 9:30, started at 10:30, and they increased it to 75 at 1:00 and I walked out at 5:30 that time. My big mistake this time was keeping it at 25 for an hour. I wish these nurses had a clue what impact IVIG infusions have on your body! I think we need nurses with CVID to give us our treatments! :)

My mom's really mad about the other doctor saying that they should cut me off at 5:00. She walked down to my doctor's office to see if my doctor is in. 

Oh well, I guess if this doesn't work out I may end up having my infusions at home, or at the hospital. Of the 2 I'd prefer doing it at home...as long as I had a good home nurse.

Back in the infusion center...

Mom just called and the other doctor is playing the waiting game with her...telling her he'll be out to talk to her in 10 minutes and not showing up. I told her to just come back because there's no point in her getting upset in dealing with him. To be honest I think I can handle 75, I just really wanted to try an all-50 infusion to see how good I feel. I start working full time on Monday, and luckily my boss is being cool in that he'll let me work from home part-time and slowly increase my office hours. I hope it works for me.

..........................

Mom just got back from talking to the other doctor, and he said to my mom that the nurses at the infusion center "hear what they want to hear". He asked my mom which nurse he spoke to, and she gave the name. Apparently at that, he just said "aha, I know. She rushes people all of the time". He called back and told them to not go above 75 and to give me until 5:30.

........................

At 5:30 on the dot my infusion was down to the last trickles, and the same nurse who'd been giving me the stress was flicking the tubes to make sure I got every drop, so at least I did get the full infusion. I might go with the day admit at a hospital option for my infusions, it would be worthwhile to not have to deal with all of that grief.

Update

On Saturday I nearly fainted at dinner, and I think that was related to my infusion, and again early this morning the same thing happened. I've realized that my doctor cut my hydrocortisone level in half as of these last 2 infusions, and that may be why I haven't felt very good despite the rate being slower.

Dr's Call

My Doctor just called to talk to me about my infusion. She said that my insurance company will never approve me having my infusions at a hospital, and the infusion center is bending over backwards in allowing me to have it over the course of 9 hours. She also said "Most people do it in 2 1/2 hrs" and she nixed the increasing my steroid level idea, and said I'm just going to have to "power through on this". Ugh...I hate this kind of stuff. Sometimes I feel like she's very supportive and great, and other times I feel like I'm on my own.