Latest struggles with treatment

[ViewsAskew]

It rarely is easy for many of us to get the treatment we need. Money, time, physician or pharmacists under-educated or unwilling, etc.

I had a referral from Dr. B to get an infusion. My ferritin is in the low 200s and I need it over 300 to get a reduction in symptoms. It's been below 300 for awhile, but with the pandemic, I didn't want to sit for hours in a lab getting the iron.

I moved last fall, so a new hematologist. He is with the same group as the last person I saw. I was a bit concerned, but not overly, as I went to our first appt. I figured all my notes were there and since TWO other docs in this group had done it - one in 2017 and one in 2019, that I'd be OK. I might have to explain a bit, so I came armed with the Allen, et. al paper.

He was an older person. He outright said he would not give me, a healthy woman with a ferritin level approaching "too high", an iron infusion. I tried to explain the article, pulled it up on my phone, and did my best to sway him. He did say he would find the study and read it - and could I come back in a month. I looked right at him and indignantly said, "Dr, I've lost my career, years of my life, and finally have a treatment that helps me reduce opioids by 50% and have some of my life back. In this climate, taking any opioids is problematic at best. I'd appreciate it if you could read it more quickly and see me in a more reasonable time frame."

That stopped him. Thankfully. He agreed to get it and see me in 10 days. (He is only there 2 days a week.) He actually even told the front staff to refund my copay - that surprised me.

I saw him on Friday. He saw me at the front desk, as I was checking in, and called out, "Ms Battenfield, thank you for that article. I was wrong and you were right."

I wanted to say, "Well, duh." I mean, how many patients come in armed with this much deep knowledge, studies to back it up, a referral, treatment of the same twice prior, etc. and are faking it.

During the appt, he was very animated. He said that he was actually retired but stayed active because he lived for moments such as these, where he learned new things that made a difference in people's lives. He said he'd hear patients mention RLS/WED before and didn't pay any attention - and now he was going to. he asked a bit about how I experienced it and how it affected me. He even offered to subscribe the methadone if I ran into trouble because he hated how much the current climate hurt people who were responsible users. He talked about how horrible treatment was for addicts in the past and that we still had a long way to come.

All in all? He was pretty amazing as a doc. Wish more were like him. He was opinionated, talked a lot, and definitely thought highly of himself, but he was also humble in that. You don't find that often.

The day after he read the article, he sent a request for the medication and treatment approval to my insurance group and asked for it to begin immediately. Hoping they comply (and he also said my experience is exactly why we need single-payer healthcare in the US, which surprised me a bit, but gladdened me to hear it).

[Polar Bear]

Ann, what a great turnaround. Well done.
And how unfortunate indeed for those who are unable to 'fight their corner'.

[Yankiwi]

What an amazing story! Well done to you and the doc.

[ViewsAskew]

What an amazing story! Well done to you and the doc.

I think this was much more about the doc than about me. But, as Betty said, I fought for it, which cannot be discounted. We might not always get what we need, but we certainly won't if we don't stand out ground.

[TimG]

I'm happy to read that you were able to bring the doctor around to your side by giving him the article.

[ViewsAskew]

I'm happy to read that you were able to bring the doctor around to your side by giving him the article.

Honestly, that part felt AWESOME! I just hope he teaches someone else, too, because he is technically retired and only works one day a week. BUT, as long as he practices, he will look out for people such as us as well as treat others in a different way.

[badnights]

I think this was much more about the doc than about me. But, as Betty said, I fought for it, which cannot be discounted. We might not always get what we need, but we certainly won't if we don't stand out ground.

It was TOTALLY about both of you. He would never have made that remarkable turnaround (and that wonderful apology) without YOU.

Even tho he's retired, I bet he has a lot of influence - even if he helps just one other person who can't speak for herself, it will be a gain for the world, but I bet it will be many more lives than that. All because you were able to say those words to him!!

I get tongue-tied, I freeze up, I can't say those things. I've lost many good opportunities to educate people because of that. I can write things after the fact, but even then, I can never get it succinct enough.

I totally admire you and others who can speak those words when they are needed.

[ViewsAskew]

I think this was much more about the doc than about me. But, as Betty said, I fought for it, which cannot be discounted. We might not always get what we need, but we certainly won't if we don't stand out ground.

It was TOTALLY about both of you. He would never have made that remarkable turnaround (and that wonderful apology) without YOU.

Even tho he's retired, I bet he has a lot of influence - even if he helps just one other person who can't speak for herself, it will be a gain for the world, but I bet it will be many more lives than that. All because you were able to say those words to him!!

I get tongue-tied, I freeze up, I can't say those things. I've lost many good opportunities to educate people because of that. I can write things after the fact, but even then, I can never get it succinct enough.

I totally admire you and others who can speak those words when they are needed.

I have had SO many issues since we moved, I think I was just so mad, I sort of blasted him. He really wasn't expecting it - sometimes being overly emotional is bad, but maybe because he is an oncologist, too, he is used to emotion, so it didn't upset him, but made him pay attention.

[badnights]

lol well I'm glad no matter the reason! Sometimes a bit of anger is good.

[ViewsAskew]

lol well I'm glad no matter the reason! Sometimes a bit of anger is good.

Indeed!

[Stainless]

"He was opinionated, talked a lot, and definitely thought highly of himself"

My RLS has humbled my neurologist who started off like your doc. Now all the can do is scroll down his iPhone and look for meds and dosages. Opioid nightmare has scared all docs. Especially if they are in Florida who model their healthcare after Alabama.

[ViewsAskew]

"He was opinionated, talked a lot, and definitely thought highly of himself"

My RLS has humbled my neurologist who started off like your doc. Now all the can do is scroll down his iPhone and look for meds and dosages. Opioid nightmare has scared all docs. Especially if they are in Florida who model their healthcare after Alabama.

I was definitely impressed that this guy has learned that there are many things he doesn't know and he was willing to admit it. The opioid thing has just gone SO far in the other direction - absolutely horrible to those who do benefit from them.