I suspect I'll get some reaction...

Posted by janchan @janchan, Feb 1 3:20pm

I am a 76 year old, pacemaker-dependent female who spent 6 months in the hospital fighting endocarditis in 2019. The doctors gave me a lot of prednisone (to keep me alive) which later caused me to have avascular necrosis in my left femur. I had a total knee replacement in 2022, which was great. However, I was never able to fully regain my mobility due to balance issues. Finally, last September, the cause for my mobility issues came to light--a 60 year old knee injury. The knee is shot--lots of arthritis, cartilage gone, so it's bone-on-bone, thinning wall on one side with chunks of the bone missing. The surgeon who did my hip replacement and my PT both think this is the root cause of my mobility problems and that if I have a total knee replacement, I should see significant improvement. Just one problem--I have a different cardiologist now than when I had the hip replacement and he approved it immediately. My new cardiologist was freaked out by my 'complex' medical records from the endocarditis days and when I asked him to approve TKR, he started ghosting me. He said he'd give me his decision 2 months ago. I haven't heard from him, so of course, I got a new cardiologist but now, everyone's freaking out about my medical records. You name it, I supposedly have it. Notice present tense. The conditions are listed in alphabetical order and there are no dates or physician names attached to them. The doctors seem to be thinking that all of those things are current and active. I'd freak out too!

While amusing, this isn't helping me get the approvals I need to have the surgery done. In fact, I was told by the NP for my new new cardiologist, that due to my medical records, I cannot have any surgeries whatsoever--too risky. I'm trying to work my way through this mess. I'm wondering what to do. Suggestions? Thanks.

Interested in more discussions like this? Go to the Joint Replacements Support Group.

I may also get reactions but here goes. I fully understand your frustration trying to work through your medical issues. The realization is, following surgery you are on your own. My medical issues run the same pattern, with differnt doctors at different locations, and no one talking to each other and no one taking in consideration the difficulty in traveling. Unless you are a celebrity or a person of means there's a good chance your medical quality will be compromized.
Wealthy people often seek medical treatment from "concierge doctors" who provide personalized, highly accessible care through a model called "concierge medicine." As George Carlin said it's a club and you're not in it. Wealthy people often travel abroad for medical treatment, a practice commonly called "medical tourism," where they seek specialized care or procedures that might not be readily available or could be significantly cheaper than in their home country, particularly for complex surgeries; this trend is especially prevalent when seeking top-tier doctors and cutting-edge technology at renowned overseas hospitals. Good luck.

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Given your previous medical history and having a pace maker, I can understand why your cardiologist does not want to recommend elective surgery. If you were to die under anesthesia due to your fragile heart or blood loss, (blood thinners? he would worry about being sued if he was the one who cleared you for surgery despite pre-existing conditions. Do they have reason to believe your heart has deteriorated in the few years since your last surgery?
On the other hand, you sound like a strong willed and positive thinking person, and if all went well you could be able walk normally if you recovered well. Since you had one TKR already after your initial bout of endocarditis, you already know what is involved the knee rehab. Only you can decide how much risk of a bad outcome you are willing to chance. I hope you will be able to find a cardiologist/surgeon to work with you, if that's what you want.

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@janchan You sound like someone with a very good handle on all of your health conditions, so you can start working to resolve this puzzle - you'll need some help along the way.

Do you have access to your medical records beginning with the endocarditis and up to the present day? Maybe if you can organize them chronologically, so the new cardiologist and the ortho can see your history clearly, you can get some movement on their parts.

If that doesn't work, is it possible to go back too the old cardiologist, who approved the first TKR, for a consult?

Finally, please don't absolutely take the word of the cardiologist's PA - I have had specialists who overruled what their assistants told me. In other cases, the PA has convince the specialist to do what I wanted.

Good luck - and remember, while patience is a virtue, sometimes the squeaky wheel...

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@ddsack

Given your previous medical history and having a pace maker, I can understand why your cardiologist does not want to recommend elective surgery. If you were to die under anesthesia due to your fragile heart or blood loss, (blood thinners? he would worry about being sued if he was the one who cleared you for surgery despite pre-existing conditions. Do they have reason to believe your heart has deteriorated in the few years since your last surgery?
On the other hand, you sound like a strong willed and positive thinking person, and if all went well you could be able walk normally if you recovered well. Since you had one TKR already after your initial bout of endocarditis, you already know what is involved the knee rehab. Only you can decide how much risk of a bad outcome you are willing to chance. I hope you will be able to find a cardiologist/surgeon to work with you, if that's what you want.

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Sorry for the typo. Actually, I had a total hip replacement in 2022. The cardiologist I had then didn't hesitate to approve it and that was the hospital that provided my care from 2014, including 2 open-heart surgeries and the bout with endocarditis. Unfortunately, he retired and there were several other changes that prompted me to change hospitals. I had thought that the hospital system I was moving to would be more progressive than the previous one, but it turns out that despite being a research hospital and affiliated with a medical school, they are cautious to a fault and quick to say "no" if there is the remotest possibility of risk. I think my new cardiologist is attempting to make sense of my records by conducting his own tests, but if he's satisfied that I can have the surgery, I'm not sure he will grant the approval to an outside surgeon and the one within the same system that does TKRs may be hesitant to perform it if my meeting with his NP is any indication. I know I need to be patient, but it's hard to be patient when I cannot sleep at night and thinking about what that must be doing to my heart. This morning, I had my first fall because of this. I had only been able to doze a few minutes before the pain would wake me up. Finally, I sat up on the side of the bed and promptly fell asleep and fell to the floor, getting caught between two pieces of furniture with one arm twisted behind me. Nothing was broken, but I wasn't sure I could get out of that mess. After several minutes, I was able to do so, but then came the problem of getting up from the floor due to the bad leg. Luckily, I was able to reach my phone and call 911. Three guys from the fire department got me up and I was ok--this time. I've been begging for some kind of help here, but the doctors all appear to care more about their protocols and being careful so they don't get sued than actually doing something to help.

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I think we're getting close to lawyer time. I don't think I made it clear that the cardiologist who ghosted me to avoid making a decision about my surgery is behind all of the records changes. It's ridiculous. He's listed every medication I was prescribed in 10 years at the first hospital, then marked them all as "confirmed" and "active." He signed them! I only have one other record in my account there. It's from the ER when I went there on Sept 12, almost a month before my first appointment with the cardiologist, and I saw today that they've added all of this dodgy data to the ER report. I guess they aren't reading it too well because the ER reported my glucose was 95 (without meds) but they say I have uncontrolled Type2 diabetes and am on 2 pills for diabetes and hyperglycemia as well as 3 bp meds: Lisinopril, Metoprolol succinate, and Metoprolol tartrate. They also made a note that I'm addicted to opiods. I've only had them twice, both after open-heart surgeries. I refuse them when doctors offer them to me and if possible, just use Tylenol to get through the pain.

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That is awful! It's hard enough getting timely medical care without having your records falsified. I wonder if there is a patient advocate system to help you get this straightened out before needing a lawyer. Maybe this doctor has other dubious things or complaints appearing on his practice records that caused him to disappear? Or it could be careless work by his office staff, which he still is ultimately responsible for signing off on. He needs to be turned in. I wish you luck in untangling the mess.

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