What do you think???

My husband's goal for 2011 is for us to become healthier and try to minimize our medical bills. This also means trying to decrease the number of times we see the dr. While I would LOVE to see our medical bills decrease, I don't know when "enough" is enough. He specifically thinks we need to drop the rheumatologist because no matter what, the bills are always $5000 or more just for bloodwork because they order so much.

What can I do to make things cheaper? We go back to see Caitlin's rheumatologist at the end of Jan. Would it be wrong of me to ask the rheumatologist to only order specific tests instead of a whole work-up? I think the first time we went, she ordered like 40 different blood tests and last time it was down to 26 different blood tests.

One other thing is that we are dealing with my kidney functions declining. Even after my last work-up after a month on Prednisone, an increase in blood pressure meds, Cellcept, and a few other meds...my creatinine levels continue to rise. My husband knows we can't stop seeing my kidney dr, so he wants to cut things out for Caitlin that he feels are unnecessary at this point. He said that if she starts having symptoms and is in pain, then he is all for getting Caitlin whereever she needs to be seen.

Those of you who have both Lupus and ITP, would you ever dream of dropping your rheumy? Who do you consider your "top dog" of drs? At this point, Caitlin's hematologist is our "top dog" and I know she would order the blood tests I need if I asked her to. I think she would even put Caitlin on Plaquenil if it ever came to it, but I don't know if that is ethical. I guess I just don't know how to help my husband feel better...you know, he is a typical man...he just wants to make sure we are ok financially for the long haul, but he would risk everything if me or the girls were in any kind of danger.

Hi Pauline

This makes me really thankful for the NHS - it definitely has its problems, but at least I never have to think about this issue!!! $5K for blood tests??? - Dougie has had rheumatology tests, and I never thought about the cost, but I would never have put it that high!

I hope you and your husband find some way to keep the bills down safely, and still keep your peace of mind.

Ali

I see my rheuma rarely, when I have a change in symptoms usually. I try to get in once/year minimum because he runs some kidney function tests that the other specialists don't seem to think of or care about. But since those so far have been more or less normal I'm not that vigilant about it. My rheuma handed me off mostly to the hema since my only major lupus symptom was ITP. I saw him when my sun sensitivity went berserk this past season but he was pretty useless, just said a little more plaquinel would handle it (it didn't).

Have you talked to the rheuma about what tests are most important, and paring them down due to cost? Doctors are a lot more sensitive these days to patient concerns about cost at least in my experience. You might just need one or two key indicator tests.
Erica

That's tough, Pauline. Since you asked, I would say no, I wouldn't drop the rheumatologist. You could maybe cut back to two or three times a year and also discuss your situation with him/her and ask that the tests be cut back, but I'd still take her. Lupus can get nasty pretty quick and patients should be monitored by someone who is familiar with it. There are so many things that can go wrong and joint pain is the least of it. Most people do okay, but have you ever read the story of Kellie Martin's sister?

bds4me.netwiz.net/er/990814-hersister.htm

www.kellies.ws/articles/lupus.html

Ali-yes, its alot of money but at least we have insurance. There are pros and cons to every health system and all I can say is that we have to work with whatever health care system we have and budget accordingly. I just feel blessed having great drs for Caitlin and I.

Sandi- I never knew that about Kelly Martin. I loved her on Life Goea On and ER and other shows. Its great to know that we ve got such a special person advocating for Lupus! The one advantage we do have is knowledge and being aware of the symptoms. I will ask the rheumy what he/she thinks before we dismiss altogether. I wasnt aware that something could happen that fast. I think my husband wants them to make sure that we re not just spending money on tests that have been negative 3 times now and no new physical changes. I just dont want to offend the rheumy if I ask them to only order necessary tests. I just wish I knew what they were. I remembrr you said the ANA test is unnecessary once its positive and it really isnt a true indicator of anything. CBCs will always need to be done. I also want ti continue with thyroid testing and her kidney function tests only because of me and the fact that she hasnt grown or gained hardly any weight in the last 3 years. What other tests are really important to check with on Lupus?

Yeah, the ANA is useless at this point. The dsDNA is important, as is the SED, metabolic panel, urinalysis, maybe C3 and C4. I'm not sure which other tests they run on Caitlin. Has she ever had a positive Ro or Anti-Sm? If she's had other positives or elevations, they'd want to re-run those.

I'll give you my .02 even though I'm not a lupus person. I think the answer to your question lies greatly in what your family doctor is like. I have a family doctor that will do anything I ask him to. He runs tests he has no idea what they are, but I do. At times, he'll ask me to explain them to him (most of these were "non-standard" tests). Sometimes, he'll just hand me the results and ask me if I need him to do anything else. He is also willing to prescribe (even based on a "specialists" request) whatever medicines we need.

*If* your regular doctor is willing to run whatever tests you need run, and if you understand the results enough to either A: see that you need a more expert opinion or B: know that everything is fine, then I would use your family doctor for the once or twice a year testing you need. Most insurances love covering this stuff because it's not a specialist.

*If* you don't have that comfort level, then maybe you can ask the rheumy to give you a list of only the absolutely necessary tests to have your family doctor run. Or simply ask the rheumy if you can only go in once or twice a year (pick your time frame) and only do those absolutely needed. Honestly, he/she will still be the rheumy whether you go at a certain interval or not. They generally don't drop a patient until they haven't seen them in several years.

The other way that we lowered our ITP/CBC testing, etc. is we got a standing order with Lab Corp through our doctor. We can go anytime we think there is a need. LabCorp is very inexpensive, covered by most insurances, and they are in every major city. Perhaps the hemo would consider doing this standing order and only having you come in when you feel it's necessary. At this point, you probably know when you're daughter needs it. That cuts out the doctors visits but still provides for getting the labs if needed.

We have crummy insurance with a HUGE deductible (10K+). I use my family doctor as needed (keep in mind, we don't go to the doctor much anyway). We don't see a hema at all anymore (just use lab corp and know what the counts mean). Perhaps just planning on an annual visit with the docs and then additional only as needed would be a way to plan. I think instinctively, we know when our kids (or us) need to go.

I've had two great family doctors and our family has had several specialists over the years. I find most have been reasonable when I've been up front with them about what we wanted (and trust me, we were PICKY). They've done what they could to accommodate what we wanted. I have only once had a doctor refuse what we wanted and I looked the guy straight in the face and said, "fine, we'll take our money elsewhere." I was very matter of fact and had a smile on my face. He threw his hands in the air and said, "fine! I'll give you your d*mn irradiated blood!" So I think if you're just honest and kind with them up front, most of them will understand and work with you. And those that don't, I'd find another one (although it's never come to that for us). They work for you, not the other way around.

hth

patti

The problem with most GP's is that they either don't recognize potential Lupus problems (as with Kellie Martin's sister) or they over-dramatize things. My sister's GP told her she probably had Lupus based on an ANA of 1:40. Six years later and she is just fine. 1:40 means nothing. It gave her the scare of her life.

I've read many Lupus forums and most people go through things like that all the time. I trust my GP for a sinus infection or ingrown toenail.

Patti-thanks for your advice. We re still looking for a GP we trust for my girls but I think I will move them to my GP once Caitlin starts her period since my dr doesnt accept new patients unless family and they have to have alreadt started their periods, not sure why. We actually go to a clinic when they are sick which is very rare for them and so far, it works bec I dont have to miss work because theyre open after hours. We see the hema often bec Caitlin is still on the study so there hasnt been a need for a standing order yet.

Sandi- anti-sm and ro have been negative. Dsdna has been positive with an increase in her titers each visit. She gets screened for protein in her urine often. I think she has some but its just a trace and in the normal range. They just want to make sure it doesnt become more elevated since i have almost 3 grams of protein in mine. C3 and C4 were slightly below normal on the first labs the rheumy ordered. ESR has always been elevated but not high. Thanks for naming specific tests. I hope the rheumy (Cait's is out on maternity leave) will work with me. I guess i was just trying to make sure it wouldnt be wrong of me to take more control rather than letting them just run whatever they feel like doing. I basically always want to go in as a strong advocate for Caitlin but then once im there,i think i chicken out and dont really end up asking the questions I want or I dont feel like i can tell them what to do. (With
the exception of her hematologist and my nephrologist, who always take the time to talk to us and ask us questions so that it will guide to questions i have for them.)

I'm sure if you explained the situation, they would understand and cut back the tests. Do you have to pay the whole balance or a portion of it? I used to have insurance with a 20% co-pay and it added up quick. I turned down ITP treatments based on that. My kids were headed toward college age and I felt the money would be better spent on that, so I totally understand the situation.

TACMOM: I thought that only in my country that "some Doctors and Hospitals" find a way to have (extra hidden)earnings to their patients especially when the patients is in payward or private room (that is only my opinion).But we do have great hospital and specialist here in my country but a lot more expensive for people like me who can only afford expenses for government hospital. Well $5,000 for bloodwork is I guess is too much. Tomorrow morning I will have another CBC and I'm only gonna pay almost 5hundred pesos(that's only almost 13dollars) and later afternoon a follow up check up with my hema but I will cancel it because I feel that my hema will just say that I just have to continue my prednisone and check my blood result and comeback next week and pay for the check up(another 5hundred pesos for the check up + 700hundred pesos for the medicines) LOL!.For me,all i want to know is if my platelet is going up or going down.

Go to my country and have the bloodwork here, you will definitely spend not that much and a lot cheaper (or maybe the cheapest) and I know you get the same result. I know that you know that you have the rights to choose which is which to tests so better tell that to your doctor because you're the boss and you're the one who's gonna pay and maybe you know some of the test is not actually necessary. I guess your husband is not risking everything,he just being practical in a way. If you feel that your hematologist or rheumatologist does the same thing like the last time,Maybe you should think that your husband has a point or maybe your doctors is just making extra money with you (again only my opinion). GOOD HEALTH!

Just want to share this to you, I just hope it helps you...
(I'm from Philippines, Last CBC Dec.12,2010 platelet count is 18K,prednisone 60mg/day)

Dhars - Ha, it would cost her a small fortune to fly the two of them over there to get the blood work.

that's only my opinion/suggestion,besides there's also hospital here where most of wealthy people, local celebreties, Goverment officials(including our President) will go there for treatment, but I guess a bit expensive..

dhars-this was for "specialty" testing, not routine blood work. They ran all kinds of tests because they were trying to see if she had some other autoimmune issues going on. Now that we have kind of pinpointed what is going on, I wanted to see if it was appropriate to ask to run only the tests that were positive and see if there are changes. I don't want you to think that every dr in the U.S. charges that because you can easily get routine blood work (CBC) for pretty cheap.

Sandi-I do have insurance where I have a deductible for each of us and then I have to pay 20% plus whatever insurance deems overpriced or unnecessary. They were not happy when the rheumatologist labelled Caitlin with "Undifferentiated Connective Tissue Disease" and started saying they wouldn't pay for anything after that. After a bunch of phone calls and papers going back and forth, I think everything is fixed. It's not too bad though...I guess because I went through so much worse with another insurance company that I had while I was pregnant both times.

tacmom; ofcourse i know that is was for "specialty" testing,besides you're not gonna spend that much money if its for just a routine blood work.I'm just making a point that somehow,somewhere there's a cheaper laboratory or specialty testing or something like that..I guess somehow it helps ("us") reduce our feelings of burden if seeing medical bills decrease.