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I suffer from “healthcare fatigue”. One thing that my rheum does, that helps and maybe all of them can do, is that he adds screening labs like full lipid profile, etc to tests he already is doing anyway and doesn’t make me have to go to my internist for it. He also does bone density screenings right at his facility. So I can combine that appt to another time when I also have an appt for an infusion or doc visit with him. Coordination of care is so important to patient compliance.
I have to agree with the invisiable insight doctors have and how they skim over symptoms. I have been having symptoms since I was a teenager. I can only say that because the same symptoms are still with me and the naturalpath told me they have been only treating the symptom and not the problem. It is a good thing I refused all the medicine that they had me on because my filtering system would have been shot before diagnosed. I have an aunt who took the clinical trails and left after 2 months. She was told about her RA 2 almost 3 years ago. I am newly diagnosed just 4 months now. By the time I was told I was so froze up it was unbeilevable. pain in everypart of body. From the neck down to my toes. Can’t open doors, car doors, take steps open toothpaste, kiss my grand children but what I do have is the power to take charge of my treatment even though my Insurance won’t allow me to go to naturalpath to help my organs out, I can on top of meds take what I have been for 1 year. I will continue to take them it will help my kidneys out, hopefully my lungs and skin. not to mention everything else.
I think you make good points on your list. But especially items #5,7 & 8 on your list make me think you need to find better doctors. Though, I can see where maybe a specialist could assume that we would see a general doctor for things like osteoporosis or vaccinations. I had a neighbor who still went to her heart doctor even for a cold or fever 10 years after heart surgery because she didn’t have a general doctor … pretty expensive and I thought a mis-use of his time. But maybe not, I don’t know. And #7 – I think you
could walk out and insist on rescheduling with someone else. – Teri
While I find all of your posts interesting, for some reason this one really grabbed my attention. I am lucky enough to have a team of doctors that “hound” me about the preventative stuff. If my PCP isn’t checking something, then its my gyn or my rheumy.
I agree with your theory that some of the issue has to do with “healthcare fatigue” and “accustomed to feeling ill”.
I have to psyche myself up to get some things done. For instance,everyone wants to take blood. I try to schedule things so that the blood draws don’t all happen within days. I would like to keep a little of the stuff for myself.
I also think that dealing with RA adjusts what we consider normal. I mean if something is going on and it isn’t making me feel worse, maybe I don’t need to deal with it. Good days and normal take on a whole new definition for those of us dealing with RA everyday.
My story is different–every time I went to my GP ( I have had 5 different ones in the same office over the last 7 years) or my gynie, I would show them my increasingly deformed hands, wrists, knees, etc. and tell them of my terrible pain and swelling. Some said to lose weight, some said to take coated aspirin and warm baths, etc., one was certain that I was drug-seeking! But the worst part is that during these 7 years I have had several CT scans and ultra sounds for ovarian cancer and been adviced to have a total hysterectomy ( based solely on a high CA 125, which is a tumor marker test that almost everyone agrees is not accurate to diagnose cancer.). I have had breast biopsies based on a cyst on a mammo that disappeared, and was advised to have my cervix scraped because of a Pap Test that was later found to be an error. I honestly think the stress from all these cancer scares is what caused my RA to become full blown! I finally got insurance that allowed me to go to a rheumy without a doctor’s order and SURPRISE, he knew instantly and the tests confirmed it–RA with joint damage . Now I am so angry at other doctors that I don’t go for ANY screenings at all! I know this is wrong and I hope I will get over it, but that’s how I feel for now–BURNT OUT!
gosh Patty, I can see why you feel that way. I can’t blame you. Maybe in a couple of years.
I agree and have experienced what you’ve noted. I was sick for a long time before the diagnosis of severe RA and then the disease became very aggressive. This flare has lasted 18 months. I don’t report a lot of what I experience because I am tired of being told that what is “wrong” with me is not well understood. Just once I would like to be seen as a woman with a condition that represents a challenge instead of something that is WRONG ABOUT ME,, something that somehow results in my not deserving the same patience and care as another patient. I choose not to fight a losing battle, not to knock on a door I’ve learned no one will answer, so I stick to the obvious symptoms, the easy stuff.
Thanks Patricia. Soo well said. Is there anyway we can force that door open? I almost can’t help trying.
Kelly,
I was blown away by your fourth finding: “doctors consider the already shortened life expectancy of chronically ill patients when failing to pursue screenings.” When your own doctor is beleaguered to pursue preventive health opportunities something is drastically wrong. There are enough health disparities as it is, so your article raises a very important issue about the creation of further treatment gaps among RA patients. Thank you for calling attention to this.
Carmen
Wow, I’m sorry this list represents your experiences as mine is totally different. The very first thing my Rheum’ recommended were vaccines. Both my Endo’ and OB/GYN work with one other so that I don’t receive over-lapping testing. Even my allergist asks about my sleep difficulties due to my RA/Fibro’ and he is often helpful on both counts.
This list is not based on my experiences, so I was surprised when I read your comment. But then I went back and I see I used myself as an example in 3 of the items listed. I guess I always feel safer using my own example.
Unfortunately the lack of preventive care with RA patients is a huge problem that Mayo doctors have noticed and I don’t think very many are studying it / writing about it. I found recently that some have read my posts on the topic and borrowed liberally from it – which means the word is getting out. As always, I wish they’d quote me properly…
Anyway, I’m very glad you’re getting good preventive care! It can matter so much more with RA, as I know you know. ♥
I am lucky enough to see a group of Nurse Practitioners as my family doctor. Even thought the Rheumies don’t recommend all the preventative care, they do. They make sure I get all the screenings I should have and the vaccinations too. They even call me at home to see how I’m doing and to harass me if I haven’t gone for a screening they say I need….I would recommend seeing NPs over MDs any day of the week. The take the time to listen and answer questions and they really care about the people they are treating. They are so much more compassionate than doctors.
As an NP at a VA, and an RA patient myself who had issues with healthcare (i have to practically beg to get time off) I try to be sensitive to these issues. The vet is fortunate to have a computer medical records system that allows me to check upcoming appointments, immunizations, labs. I try to schedule my patients so that any labs can be tacked onto other scheduled labs, I try to see my patients with inflammatory bowel when they are in for infusions so they don’t need to make another trip.
As an RA patient without insurance it’s frustrating to be told to see a primary care doctor for blood pressure meds and a plastic surgeon for the rheumatoid nodules. If the meds I take, the pain I have from RA, and the known factors in cardiac problems, cause my BP to elevate, why can’t the rheumatologist presribe the meds I need? And why a plastic surgeon for nodules? aren’t they more pricey than say, an orthopedic surgeon? Why do I have to pay 3 different doctors for issues all related to the same disease? I’d prefer a “one stop” doctor, rather than the expense of 3 different office visits.
boy – this sure speaks to what i go through! it’s not bad enough to have the RA and drs dismiss a lot, but i’m also allergic to so many meds that most of the time they throw their hands up and just tell me i’ll have to suffer through it! drs also don’t take the needed precautions – i recently changed our primary after i found that while our dr had finally agreed that i was in the beginning stages of congestive heart failure and gave me lasix to help with that issue, he failed to give me the required potassium or even follow up with the levels. i developed heart issues that i’m told could have killed me bc my potassium dropped to dangerously low levels. it was my rhuemy that caught it but not only would my primary not take an emergency call from them, he didn’t even return the call! i got an urgent call from my rhuemy informing me of the situation.
i also identify with the fatigue of so many dr appointments that i tire of more appointments and put off things like dental and ob-gyn appointments.
thanks for the article — always nice to know it isn’t just me!
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I believe strongly that the Rheumatologist should be the primary care physician that coordinates all of the care of a person with RA. This is a chronic illness that can have dangers if a person is seeing different docs and taking different meds. Something will fall through the cracks in the care….it always does for me.
That is a in interesting comment, Tammy. I have a post coming on just that topic.
I only took one pill a day ( synthroid for hashimotoes) before i was diagnosed with RA ( six months ago). Now I’m taking 9 pills a day, and a yearly infusion for osteoperosis. Every time I get prescribed a new medication, or I add a supplement, I inform all of my doctors and have them add it to my list. I am fortunate to have companionate and caring doctors.
My sister just passed away after battling RANDY for nearly 30 years. She was only 49 years old. Cause of death was assumed Septic shock. I believe that she had multiple things going on that simply were not addressed by her doctors in a timely manner. She would tell me how it would be days and she would have to put in multiple phone calls to her doctors before she would get a response.
I am so sorry to hear about your sister, Karen. Her story is too common. I hear these stories & live them myself. That is the reason for my upcoming book about the systemic nature of the disease – whenever I can get the formatting finished. If you want you can email me when it comes out to remind me & I’ll send you a copy free.
I do understand it’s awful & it’s just how it is until we can make them understand – I have been waiting 2 months to see a liver doctor from a badly swollen liver & they won’t call me back.
RANDY should be RA
LOL – that would be a funny name for it. but my (soon to be) son-in-law might disagree..