6 replies to this topic

[beverly]

I have seen so much incompetence during the past few years this is the reason for my question.

I lost my mother June of last year husband Sept. of last year and have CML diagnosed 3 days prior to husbands passing. Much incompetence for them as well with docs.I was their caregiver until I had to send mother up to sisters where she passed away. Due to incompetence. She was old yes and wanted to die but still.

I have had to fire a doctor and feel like just going to Mayo Clinic In Jacksonville now. My Oncologist recently had to light a fire under my new Internist clinic stat to get 1 litter of fluid off my left lung as that Dr. had let it go 3 weeks. I was drowning and had it gone on 6 - 9 months my left 1/3 lung would have looked like an orange rind. They believe it was building up for 3 months.

Thanks ahead of time for any thoughts on this.

[CallMeLucky]

The reality is that doctors are just people, and medicine is just their job, you are a task they have to tend to during their day.  Hospitals are just big corporations and doctor's offices are just small businesses, some run better than others some care about customer service, but only to an extent.  I often feel like most people in society these days just want to get through the day so they can go home and read their Facebook page.

Now cynicism aside, there are some good people out their who care and there are some very good doctors who genuinely care about their patients, sadly it seems they are more the exception.  As a whole I think most people care but we tend to expect a lot from medicine that they claim they can deliver but they cannot.  A lot of your care falls on you to be your own advocate, you have to navigate the different people and different situations, often dealing with information you don't understand that well and all the while doing it while you are not feeling well.  It helps if you have someone to accompany you when you go.  There is strength in numbers and I have noticed time and again that the most difficult doctors behave quite differently when you are alone vs when you bring someone with you.  So when possible try bringing someone with you, keep on top of things as much as you can.  Get nasty only when it is absolutely necessary otherwise try to be extra nice.  I make it a practice to bring food for the office workers when I go for my visits.  I do it because I appreciate them and I know they run all day with few breaks, but it also puts me in a good position when I need a favor like getting a quick response when calling for an insurance issue or test results.

[beverly]

Great info thank you. Just returned from my psychiatry appt. been seeing her for 20 years. I told her of the Dr I fired and why she did say write them a letter or just write on the bill why you don't feel like you should pay the bill. They will cancel the bill for legitimate errors on their part. Nice to know I had already done that. The Dr I was refering to only wanted to prescribe pain pills and didn't want to listen to me regarding XRAY bronchitis Christmas New Years week in the ER. She said you have shingles as I wanted her to look at my rash and told her it was painful still have cough due to Sprycel shortness of breath. I had to remind her after she was writing the prescription I have CML and she was the one who first sent me to a blood DR. she then said, " I don't read files when you come in for something else".. LOL Well needless to say she is making quite a name for herself with the doc's I am seeing now. I realize we need to be our own advocates. I have worked At Shands Hospital in Gainesville Fl and know the ins and outs of the medical field. I just get so tired of it all. don't want to be Debbie Downer of SNL But when I just had the litter of fluid removed from my left lung a stupid nurse decided she was going to try and do a IV in my forearm instead of the hand. Well She was like dredging for a vein and 7 days later is is just now turning yellowish green. My results on Sprycel are good and Oncologist is waiting for the antibiotics to get done working as gthey are hoping it is and infection in my lung and not cancer... WOO HOO !!! Sorry just hard to be positive. Maybe I shouldn't be on here I think it is for people to make others feel better and I'm not.

[CallMeLucky]

I'm sorry if you feel like this isn't a place that is appropriate for you.  I would disagree, I think this place is exactly for someone like you - you have CML

This forum is not about showing up with your smile or brave face.  We are here to support each other because very few people get what it is like for us.  I don't come here to be positive, hell I complain all the time.  This CML stuff is a pain in the butt.  People come here for different reasons, we come here to learn, get advice, share good news, and sometimes to mope, gripe, or have a pity party.  We all go through it and we are all entitled.  i don't think you'll find a more understanding group of people with regard to this.  So don't feel you need to come with a positive attitude.  Whenever someone finds out I have cancer and they tell me I need to stay positive, I tell them "I'm positive I have cancer".

You've been through hell Beverly, and while I cannot relate to the same extent, I am coming off a couple of really tough years where in addition to my illness I lost two very close family members within a matter of months, so I can somewhat understand.  Discuss whatever you want to discuss, there is always someone around who may have something to suggest or just acknowledge that they hear you.

Be well friend.....

[pamsouth]

Hi Bev, 

Regarding >Sorry just hard to be positive. Maybe I shouldn't be on here I think it is for people to make others feel better and I'm not.<<

Sometimes I feel the same way,  but you know what?  It is "YOUR" Story to tell and it is what it is.!!  In telling your story, it give others that are going thru their own personal crises, (there are many) to be their own voice/advocate and if they are not able to do that, to find someone who can.  We are not alone, no one with Cancer or a disease or disability should feel like they are alone.  My husband is retired from Chrysler UAW.  I turned 65 years old this last  January.  My primary insurance is now Medicare, but my secondary is Blue Cross of Michigan UAW RETIREE.  I recently called them *Chrysler UAW Retiree",  (who hold our insurance in trust) upset about; insurance  Medicare/Blue Cross/ Billing/Doctors and other things.  I felt like I was banging my head against a wall. Last year I even reminded a Blue Cross case manager, of the patient bill of rights and read them to her, oh my how her attitude quickly changed.  Anyhow the Chrysler UAW Personnel  said they would be my advocate and speak for me.  They did a darn good job, thank you Lord!!  I may need them again in the future.  The patient does have rights!!!!  The doctors should hang the patient bill of rights in their office where they & the medical staff, can look at them everyday, and come down to our level.  However on the other end, there are many others that would not want to challenge a medical staff and our more comfortable just doing as told, and that is their decision, but I am not one of them!!  I would prefer to listen intently, do my research and ask a lot of questions, have all my medical labs, and make my decision, there are many doctors who are not comfortable with that.  So then I find one who is. If necessary I will find another. 

Just saying.....  It is what it is.  This is not always a feel good sight, but we also gets lots of info, good/bad, and can vent, and people get it or at least you will find someone with a similar circumstance.  Except for this site and a couple of close friends I don't talk much about the concerns of CML and the health care system, very little to family.  My daughter is a nurse and her husband is a GI doc and they are the last people I vent to.  They see the healthcare from a very different perspective than I do!!  I am sure this is not the case for all who have family in the medical field, but for me it is.  But having watched and cared for my mother for 3 years to her death and having been the caretakers of others.  Also did vital sign with a Medical Missionary group, as they said I had so much experience with taking care of my mom and all, I learned in the trenches of the poor and third world countries.    I sometimes think maybe these were precursor experiences, I needed before being diangnosed with CML.  I do think that some of the hollywood stars that have cancer, like to do their tour speeches, but I believe they are pretty wealthy to begin with, and get extra good medical treatment and can afford many caretakers to look after/out for them.  Sometimes they make it sound like their cancer treatment was a cake walk. 

AS THINGS CHANGE, STILL LEARNING SOMETHING NEW EVERY DAY.  Get knocked down, you get back up, that's what you do!!

I have to say, without my Heavenly Father and knowing I have an eternal home, and HE holds my hand, and walks with me 24/7, my bestess friend,

I would be in a very dark place!!

Blessings,  PamSouth

[beverly]

Thank you Lucky,,Pam ,Tex for the private note today, You are a wealth of knowledge. I will take it all to heart.

Feel good today all!

[beverly]

Not going to do it again not another Tap.

Beverly

Dr Warman is a good doctor

Besides she's also a Pulm doctor

I did talk to her Friday and she says the effusion is back

Unilateral effusions in this situation is worrisome for lung cancer

We can change your cml drug but we still need to make sure this is not lung cancer

So go get the pleural tap she recommends

Also we need to see you this week after tap

So call or email the scheduling gals to make an appointment to come in

30 min visit

You will end up short of breath in ER if you don't get rid of the fluid in the lung

Rama