[dianaiad]

Doctor patient communication

by dianaiad on Thu Feb 28, 2013 12:54 pm

Am I being a witch?

Kaiser Permanente has KP.org, a members website; they claim that we can see the results of our lab tests on it. It turns out that we can't; not all of them. I can see all my results but the Immunoglobulin assay, the immunofixation electrophoresis, serum, and my latest CBC. I asked the doctor what the results were for them. He pulled the results of the "quantitative immunoglobulin assay" exam (and pardon me if I'm using the wrong jargon and grammar for these; I'm very new at this) when I saw him the second time. I was blindsided, since I thought I had seen all the tests...and even I could tell that there wasn't a whole lot to worry about. However, he showed me a number: 43000+...and didn't tell me what that MEANT, except that he wanted a bone marrow biopsy. He ordered four more tests, only three of which showed up: the albumin, the beta 2 microglobulin and the calcium. the "protein electrophoresis, serum" did not.

I asked him to call me and tell me what the results were, and it took him a week to get back to me. When he DID, I was in a tutoring session and my mother wouldn't put him through. I sent a quick e-mail apologizing, but two days later, just before he did the bone marrow biopsy, he spent several minutes telling me that he didn't have much time to talk to me because he had other patients, and why was I obsessing over one blood test? It was the 'totality' of the picture that was important.

In fact, he spent considerably more time telling me that he didn't have time to tell me than it would have taken just to give me the numbers. Even my very easy going daughter, who was with me, later told me that he 'was a bit of a jerk.'

Please....am I the idiot here? The only reason I'm 'obsessing' is because he's not telling me...and it makes no sense to me. It's obvious that he's worried or he wouldn't have done the bone marrow biopsy. According to the ISS staging, as far as I can see, I could be stage 2, (albumin = 3.4 gm/dl, beta 2 microglobulin 4.0 mg/L)....and if he didn't want me worrying myself, why did he let me see those?

I'm confused. And yes, I'm not happy. I can handle facts. I can't handle being treated like a brainless idiot. ...but is that what is happening?

Anybody out there who can give me some guidance?

[terryl1]

Re: Doctor patient communication

by terryl1 on Thu Feb 28, 2013 2:46 pm

Time to get a second opinion from a myeloma expert with a better bedside manner. The squeaky wheel gets the oil---complain about this to the adminstration of the facility or to your health insurance provider. You mentioned a number 43,000+.....was that your free light chains? With all that is going on, his recommendation of a BMB is spot.

[Multibilly]

Re: Doctor patient communication

by Multibilly on Thu Feb 28, 2013 5:55 pm

Totally agree with Terry. Are you tied to this one facility because of insurance restrictions? If not, find another doc! You should have unencumbered and immediate access to ALL of of your test results and your doc ought to be able to explain each of the results to you in a timely fashion. None of your questions are off base.

I deal with three separate institutions. While I am not always able to get a hold of one of my docs at one of the institutes, I can always ask questions through his assistant and she gladly follows up with me with an answer or a fax/email of my requested data in a matter of a couple of hours. And when I do meet with him face to face, he takes the time to answer each one of my questions thoroughly and is not dismissive. In other cases, I can just email or call the specialist directly and they get back to me fairly quickly.

My experience with this disease is that it actually has provided me with more direct access to my doctors and my records that I had ever experienced before....I think it goes with being on the "cancer turf" and most of the staff at these organizations are very sensitive to what we are all going through. As a result, I have developed a much deeper respect and appreciation for the health industry as result of my multiple myeloma.

[Ron Harvot]

Re: Doctor patient communication

by Ron Harvot on Thu Feb 28, 2013 8:23 pm

When I get my infusions I have the infustion nurse pull all of my latest blood tests off the computer and print them for me. I then take those and enter them into an excell spreadsheet so I can see in one glance the changes. They always comply with my request and give me everything that is in the system. You might try that. My oncologist has an office in the infustion center. If yours does not then have the nurse print it out for you when you make your next visit. As a matter of law you are entitled to your own records.

Ron

[Franks8519]

Re: Doctor patient communication

by Franks8519 on Fri Mar 01, 2013 1:58 pm

At Mayo, I can see all of my results on line within hours of the tests, along with all of the previous tests for comparison. When I meet with Dr. Gertz, he discusses the results and their meaning with plenty of time for questions and discussion. While at the previous clinic, the doctor took time to discuss the results, I had to remember to ask for my own copy. I can also read Gertz's clinical notes online at Mayo. When I moved to Mayo, I took my records from the previous clinic and was surprised to read previous notes with concerns that had not been shared with me. Working with a team which specializes in multiple myeloma and treats me as an adult, while a bit more expensive with my insurance, has reduced my stress level. I was diagnosed with SMM nine years ago and it's been relatively stable. Find a doctor who knows multiple myeloma and has a manner consistent with your personality. Always ask someone to print all of your results. And never hesitate for a referral for a second opinion. Any good doctor welcomes that.

[GeorgeLJurak]

Re: Doctor patient communication

by GeorgeLJurak on Fri Mar 01, 2013 3:10 pm

Hello Dianaiad, yes your doctor should have been more responsive to your concerns. It is refreshing to see that you are concerned about your numbers and a prognosis. Most multiple myeloma patients I talk to at the hospital DON'T want to know anything about their numbers or what the future holds. You need to be your own advocate. Maybe you should discuss your concerns with your doctor again and if he/she seems bothered with your concerns, then it would be time to change doctors. But give him/her another chance, because maybe he/she was just having a bad day like all of us have at times. Again, I'm glad you are staying on top of things and don't stop. God Bless

[Louise]

Re: Doctor patient communication

by Louise on Fri Mar 01, 2013 3:53 pm

My husband has been treated at UAMS for nearly three years. Access to information has always been good. Test results are online in a timely manner. If there are questions, phone nurses are readily available. On the rare occasion, one of them does not have an answer, they readily find out. When we see the doctor, we are never rushed and have always gotten answers to our questions. My husband is now on maintenance, and we go to Arkansas bi-annually. We do not feel disconnected though--UAMS is only a phone call away. With email, the doctor is only an email away. Between visits, we see a local oncologist who provides the same level of care. If it were otherwise at either UAMS or locally, we would immediately seek to find another doctor. If you are bound by insurance to stay where you are, I strongly agree with others that you report this problem to admissions/administrators/patient advocites or whomever is in authority. If not bound to remain there, shop around. Good luck!

[Christa's Mom]

Re: Doctor patient communication

by Christa's Mom on Fri Mar 01, 2013 4:13 pm

Under HIPPA you have a right to copies of your records/reports. I also agree with others who suggest cultivating relationships with nurse practitioners, nurses and administrators in the onc's office and infusion center. They are often a better resource and can get your questions answered or the information you need faster than trying to contact the doctor.

Good luck!

Lyn

[Anonymous]

Re: Doctor patient communication

by Anonymous on Fri Mar 01, 2013 5:42 pm

The results for the Protien Electropherisis, and the immunofixation test take longer to tabulate then other tests such as blood chemistry. The SPEP (preotein electropherisis) takes a few days. When I go for follow ups my dr. usually hands me that days blood work, accept the M-spike or freelights will show the results from the previous month as they will not be ready until a few days later.

[Nancy Shamanna]

Re: Doctor patient communication

by Nancy Shamanna on Fri Mar 01, 2013 6:24 pm

Yes, I get my blood work done the week before my regular app't so that there is time to get the results back from the SPEP test and the FLC test. When I was getting active chemo, I got 'stat' tests the same day to ensure that I was healthy enough to get chemotherapy, and had to wait for an hour or more for those. The tests, which were a CBC (complete blood count) primarily had to be done the same day as receiving chemo. Now that I am just being monitored, it is OK to do the tests ahead of time. Hope that helps, Dianalad. I know it is very nerve wracking to be waiting on a diagnosis, and hope you can get on an even keel with your doctors soon!