I just got back from my appointment with Rheumatologist. I can say with 100% certainty that I am fed up with the medical community at this point.
Al and I have tried for years now to achieve a pregnancy and have lost pregnancy after pregnancy. Since Oklahoma doesn't have any reproductive immunologist we decided to take a leap of faith and travel out of state. In a way I am happy we did because we finally got answers. On the other hand I wish we didn't because you can't get treatment in orders are from out of State.
I referred to Rheumatologist because Dr. Kim felt certain I have a underlying immune issue. I was hoping that a doctor here would prescribe IVIG so we could have that option to help achieve a pregnancy and for it to stick. Well as you can guess the doctor here doesn't agree with Dr. Kim's treatment plan and said no to IVIG and not only no, but wants to change my protocol because she doesn't believe I should be on steroids or Lovenox, but instead a medication called placard. She seems to think I do have APS, but said without a history of blood clots it is hard to say for sure.
I explained to her that I trust Dr. Kims opinion since she is the one dealing strictly with people in my situation and respectfully told her that I will not be stopping my steriods and starting another drug. She respectfully told me that she doesn't agree with the protocol I am on and will not be giving me a prescription for IVIG.
At this point, the only way for us to have it done is to travel to Chicago. There is a lot to think about. But now I sit here frustrated with the medical community.
I'm so sorry Toni! I'm mad and frustrated right along with you. I'm here to support you in any way I can! ((HUGS))
ReplyDeleteThank you Janet. I know you are huge support system to me
DeleteToo bad you and Al didn't live and work closer to IL.
ReplyDeleteI know. We can afford one or two trips to Chicago.
DeleteUGGGHHH! So frustrating! I'm sorry.
ReplyDeleteThanks Laura. I know we will figure things out, but still frustrating.
DeleteThat absolutely sucks. The doctor sounds like she just doesn't get it. I wonder could you ask Dr. Kim to give her a call to discuss your case?
ReplyDeleteThat's not a bad idea. I told the doctor today to send her report to Dr. Kim.
DeleteUgh so terribly frustrating. I'm so sorry for this. Trust your gut for sure!!
ReplyDeleteI have learned after years, now I always trust my gut feelings :)
DeleteHow stupid! My state was the same way but there was a way around it. If I got the infusion done at the actual site instead of them coming to my home, then they didn't need a local state dr to prescribe it. Do you have Coram in your state? That's where I did mine and they were the ones that just used the orders from the Beer Center in CA. Hope you can get it worked out!
ReplyDeleteLyndsey I have called every infusion center in the state and none of them will budge on doing infusion without a in state order. I am totally confused on why I can't get something done with a order from a board certified doctor (regardless what state they are from). If we had a RI in Oklahoma I would have went there, but we don't.
DeleteI hate this. So frustrating. Sounds like this doctor doesn't deal SPECIFICALLY with infertility? Ugh. It just makes me mad on your behalf. I know you and Al will figure it out, I am just sorry you have to though. I like the suggestion of having Dr. Kim call this doctor. Maybe with communication btw the two, it might help?
ReplyDeleteExactly and she said the same thing (that she didn't know much about reproductive side of this all). I told her that the visit was a complete waste of time.
DeleteIt is so frustrating to find doctors who can just agree on the same damn protocol. It makes us question if what we're doing is right, and when all else has failed and we do decide we want to try something "new" then you can't find a doctor to just give you the script you need or order the transfusion. Sorry it has to be so much work for you. I kind of understand in some ways....I had to get my script for Lovenox from a hematologist and am filling it for off label use of IVF. It took me MONTHS to get my RE to finally agree to a measley low dose steroid too. Gah!
ReplyDeleteI spoke with my husband yesterday and for right now we are going to stick to Lovenox and Steroids. I did research for many days on the success with IVIG and many studies state that patients have almost the exact same success with the protocol I am on now.
Delete