Yes Virginia, Women can be bleeders!

[ECKPowers]

Please let me say before I begin explaining my situation, I know there are fantastic medical professionals, I have had the pleasure of being cared for by them. I also know there's bad apples in all bunches. So when I tell my story please know I'm talking about an isolated incident.

I have a bleeding disorder. I see a hematologist/oncologist. There's a satelite clinic about fifteen miles from here that I see my doctor, and sometimes have my daily infusions there. On a significant bleed I could end up having daily infusions for several weeks. So I am a very regular patient in this clinic. All of the nurses, except for one, are amazing women. The problem is the nurse manager. I am the first hemophiliac that they have ever treated here. She has informed me in the past that " Girls don't get clotting disorders". I told her to read a book! And because I'm not someone with cancer the nurse manager sometimes has a really bad attitude towards me. She doesn't like that my doctor actively seeks my opinion on my body. It really scorches her that I am a very active player in my medical treatment. When I didn't have insurance she shoved a social worker down my throat, AND (and I about smacked her for this) told me to go beg at a church to have them help me pay for my meds. (Amicar costs around a thousand dollars a month. And that's just one of my meds). I was humiliated. I couldn't get insurance because I was always bleeding and they didn't take preexisting conditions. And I couldn't work, because my anemia level was so low I was receiving constant transfusions. She treated me like a scab on a toe. Something that just festers and annoys you. The social worker kept asking me questions of why I could not buy my meds, and reduce the daily infusions. I had applied for disability but we all know how long that takes. I finally received Medicare and am able to more fully cover costs.

But today I had to call my doctor. I began to bleed again about ten days ago. That length of time is a " normal " period for me. But anything past that I am to let my hematologist know immediately incase factor is needed. She informed me that unless I had bled out enough to need a transfusion then he was not going to be notified. I just about choked.

I calmly, but firmly, okay very firmly, informed her that she needs to let the doctor decide what's significant or not. I told her that I wanted her supervisor's name and telephone number. She told me I would have to wait until my appointment (in MARCH) to discuss it with the doctor.

I told her she was an idiot, and she had better never come near me or my chart again. I also told her that she's not the doctor and I will be filing a complaint with the State Board.

After I hung up on her, I received a call from one of the other nurses. Jennifer. I love Jennifer. She's professional, caring, and was smart enough to read up about my disease so she could better help care for me. I respect that. She called me from a different room. And I know how Jennifer feels about her boss. We've discussed it outside of the clinic before. Jen told me that not only had she called my hematologist, she also told him what her supervisor did. Apparently my doctor went postal. Not only does he want to see me on Wednesday, he wants me to write up a full complaint on what she did. He told Jennifer that the supervisor ignoring my symptoms constituted medical neglect. Now of course, being human, I proceeded to laugh my butt off. Then I was struck by another thought.

I wonder how many other people she's ever given the brush off too! Cancer patients and hematology patients are often sick, anemic, fatigued, nauseas etc. And some little old lady that hasn't been around medicine that much, or is like the old school where they don't question the doctors or the nurses wouldn't know how to fight back against her.

Playing devil's advocate, I think she's so set in her ways that anything new or unusual in her clinic sets her off.

Maybe I'm ranting, maybe I'm informing, or maybe I'm typing to keep myself from scratching her car. LOL.

But let me thank you all for being nurses. I have truly been blessed to be cared for by great nurses. I was most often cared for by nurses that worked on my mothers floor. I admit, I was slightly spoiled. But they liked the candy.

If a woman has chronic uterine bleeding sometimes it's not just a GYN issue. Ask the doctor for a clotting time test. PT, PTT's and aggregation tests don't always show significant enough numbers to be considered a clotting problem. You may save a life. :)

[Penguin67]

I agree, sometimes problems are brushed aside by healthcare workers who are too lazy to deal with them.

Case in point...my boyfriend recently had day surgery on his foot for plantar fasciatis. He's already had the other foot done, so we both knew what to expect. After the surgery when I was called into the room to sit with him, we started talking about his postop home care. We both asked the nurse about the cool water machine that we would be getting to take home. She said the doctor didn't order it and basically wanted to leave it at that. Had he not had the previous surgery,we wouldn't have even known that this machine was helpful and certainly needed. So, we asked again, got the "eye roll" and some line like "well we'll have to call the office where he was seen (which was literally next door) and see if they can get one, they don't always have one available". You could tell that she really didn't want to go make that phone call to the office next door.

BTW, the cool water machine circulates cool water through a small blanket wrapped around the ankle and keeps the swelling down. His post op orders were for ice on 30 minutes, off 10 minutes, so obviously this little machine was going to keep me from repositioning the affected foot each time the ice was to be applied.

Well, we got the machine upon discharge home from the other office, who apologized and told me that the doctor forgot to order it on his preop visit. (Yes, nurses should check behind doctors because they can make a mistake, too!) But the postop nurse refused to get him a drink and made him wait longer for the mandatory wheelchair ride to the front to meet me in the car, and even discharged another patient who was out of surgery after he was, as we saw him rolled into the room right before we started the conversation about the machine. It seems like we ticked off that nurse because we asked for something that we knew was the standard of care for his postop condition.

Also, the cool water machine was covered by insurance on the last foot surgery (a few months ago) and nothing has changed with his insurance, so what would be the hold up?

Sign. We all need to listen more to our patients and not be so dismissive. And not be afraid to question a physician.

[ECKPowers]

Sign. We all need to listen more to our patients and not be so dismissive. And not be afraid to question a physician.

Everyone makes mistakes. But to deliberately refuse a patient treatment, or protest to doing her/his job is ridiculous.

Glad you got the job done!

[ohmeowzer RN, RN]

i've had a couple of ladie's with bleeding disorders. i can't remember what their DX was . I do believe women are looked over for many health problems. from heart diease to bleeding disorders,

i think women have to be procative in their care and ask questions. i am very glad you posted ECK . thank you

[Moneypitt]

What she did was wrong on so many levels. Too bad there are so many people with issues who we trust with our lives. I have seen so much power tripping in my career, and my life. Hope she loses her job. Really I do.

I have to admit when I needed a few minor surgeries I kissed the butts of all the office staff. I brought in flowers, thank you notes, ect. A tad insincere on my part I admit, but I know the first step to talking to the doctor is getting thru the receptionist and office staff. They know that too.

Thanks for writing your story.

[HM2VikingRN, RN]

thanks for sharing this story...

[lpnflorida]

Penguin,

I am sorry for the mixed up, but do you now have two kryocuffs? pardon if I misspelt the word but that is what you are describing.

I was just wondering as you mentioned insurance had okay'd the device for his prior surgery.

As to someone being discharged before your loved one. That happens, more just as their paperwork might have been less complicated to finish and they were not awaiting a call back from a doctor to clarify or obtain an order for something.

[Penguin67]

Penguin,

I am sorry for the mixed up, but do you now have two kryocuffs? pardon if I misspelt the word but that is what you are describing.

I was just wondering as you mentioned insurance had okay'd the device for his prior surgery.

As to someone being discharged before your loved one. That happens, more just as their paperwork might have been less complicated to finish and they were not awaiting a call back from a doctor to clarify or obtain an order for something.

My response:

1. No , we only have one machine. Not sure if that is what it is called or not. We returned the first one at the one week follow up appointment, as the risk of edema was greatest in the first post-op week. We will return this machine on Friday at his one week follow up appointment.

2. My boyfriend was in the wheelchair and I was told to go and get my car and pull around to the front to meet them. It was 15 minutes later. The other guy was still in the bed when I left the room. If the nurse knew the other guy was going to go first, why would she direct me to go sit in my car and eat gas while waiting for the nother guy to be d/c-ed. Small point, but it was obviuos that she was ticked off at us and that little maneuver was done in retaliation.

[lpnflorida]

Thanks for answering about the Kryocuff. You are lucky to use/rent them. In our area patient's insurance buys them for $150.00, but then they are theirs forever.

I cannot comment on nurse/retaliation. I was not there. I also know best laid plans/ or discharges in this case do not always go as planned.

[Aneroo, LPN]

When you call the supervisor, make sure to put it a good word for Jennifer. All too often people will complain about the bad ones (and boy, does she sound awful), but forget to tell the supervisors who the wonderful nurses are who are true patient advocates!