RE: Re:Where do I begin?

[Guest guest]

Judy, thank you for sharing that with me.. I was a nurse like many of you for years.. I actually worked 25 years before sickness.. and I took care of people like I would want to be taken care of..This is the lead Hematologist at Vanderbilt in Nashville, which is a teaching hospital, and the SOB, (sorry) never even examined me.. when I told him I had systemic sarcoidosis, he threw both hands up in the air and said "OHH, YOU HAVE CHRONIC ILLNESS ANEMIA" and told me "DON'T WORRY ABOUT IT" I could bite nails into right about now..

I do feel this new guy knows what's happening.. and I'm gonna give him a chance.. not 5 years mind you.. but a couple of months, I guess they make you try the iron tablets before the insurance will pay for IV infusions, would be my guess..I go back next week, and we'll see if there is any progress.. if none, then I will discuss the infusions..

Thanks again for sharing this with me.

Hugs,

-- Re:Where do I begin?

I also have anemia. My hemotologist told me that taking iron pills was useless. She said I needed IV iron. I had been taking Niferex 150 for months and I thoiught it was helping but when they did a CBC it showed that it was not working.

At first they put me on IV iron and Procrit. When my iron level was up to normal range they stopped the IV iron and switched from Procrit to Aerpnesp (sp?) It is suppose to be more powerful and cost less than Procrit.

Anyway it finely kicked in and my hemoglobin is now 11.3.

Today I had a visit with my internest who laughed when I told him the hemotologist said that they thought I had Anemia of Chronic Disease. He then laughed and said that is what they alwaysmsay when they can't figure out why you are not making good RBC.

Take Care

Judy in PA

[Guest guest]

I sure

hope I don’t ever get this type of anemia, I was anemic in my pregnancy

and was given IV iron and went into anaphylactic shock, and can not even take

iron by mouth. I hope you both get better soon. Don’t you just love it

when one doctor knocks what the other doctor is doing, they never use to do

that, but then again it seems to me that they use to care more, I was in

nursing for 30 years, of course there always is the good docs and the bad, but

it just seems they were more caring??

May you

all have a blessed Easter.

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of rjbasso

Sent: Tuesday, April 03, 2007 4:47

PM

To: Neurosarcoidosis

Subject:

Re:Where do I begin?

I also have anemia. My hemotologist told me that taking iron pills was

useless. She said I needed IV iron. I had been taking Niferex 150 for months

and I thoiught it was helping but when they did a CBC it showed that it was not

working.

At first they put me on IV iron and Procrit. When my iron level was up

to normal range they stopped the IV iron and switched from Procrit to Aerpnesp

(sp?) It is suppose to be more powerful and cost less than Procrit.

Anyway it finely kicked in and my hemoglobin is now 11.3.

Today I had a visit with my internest who laughed when I told him the

hemotologist said that they thought I had Anemia of Chronic Disease. He then

laughed and said that is what they alwaysmsay when they can't figure out why

you are not making good RBC.

Take Care

Judy in PA

[Guest guest]

Sounds like

my trip to the SOB-ENT, first words out of his mouth, “well I see your

husband is an Attorney”, ya and what about it is what I wanted to say,

but my mouth was on the floor, then he said “well you know you have

Sarcoidosis” again, dah, are you like a real doctor. Then he

told me I needed a CT scan, before he ever examined me, so I was getting a

little put off with him, then he really started the talking down to me, “you

know this all starts here with your nose”, OK now I’m

fighting mad, and looked him in the eye and said, EXCUSE ME, BUT I AM AN RN AND

YOU DON’T NEED TO TALK TO ME LIKE THIS. At that point he walks out

of the room, and tells me to schedule a CT with his nurse and walks

away! So I scheduled, then got home and canceled the CT and his

next appt. that is the second time a doctor didn’t want to treat me

due to my husbands occupation, he does insurance law and works for insurance

companies, he has no interest in suing docs! So I see my Pulm. In about a

week and will see who else I can go to! It’s a good thing we know

how to stand up for ourselves!

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of

Sent: Tuesday, April 03, 2007 5:11

PM

To: Neurosarcoidosis

Subject: Re:

Re:Where do I begin?

Judy, thank you for sharing that with me.. I was a

nurse like many of you for years.. I actually worked 25 years before

sickness.. and I took care of people like I would want to be taken care

of..This is the lead Hematologist at Vanderbilt in Nashville, which is a teaching hospital,

and the SOB, (sorry) never even examined me.. when I told him I

had systemic sarcoidosis, he threw both hands up in the air

and said " OHH, YOU HAVE CHRONIC ILLNESS ANEMIA " and told me

" DON'T WORRY ABOUT IT " I could bite nails into right about now..

I do feel this new guy knows what's happening.. and I'm

gonna give him a chance.. not 5 years mind you.. but a couple of months, I

guess they make you try the iron tablets before the insurance will pay for IV

infusions, would be my guess..I go back next week, and we'll see if

there is any progress.. if none, then I will discuss the infusions..

Thanks again for sharing this with me.

Hugs,

--

Re:Where do I begin?

I also have anemia. My hemotologist told me that taking

iron pills was useless. She said I needed IV iron. I had been taking Niferex

150 for months and I thoiught it was helping but when they did a CBC it

showed that it was not working.

At first they put me on IV iron and Procrit. When my iron

level was up to normal range they stopped the IV iron and switched from

Procrit to Aerpnesp (sp?) It is suppose to be more powerful and cost less

than Procrit.

Anyway it finely kicked in and my hemoglobin is now 11.3.

Today I had a visit with my internest who laughed when I

told him the hemotologist said that they thought I had Anemia of Chronic

Disease. He then laughed and said that is what they alwaysmsay when they

can't figure out why you are not making good RBC.

Take Care

Judy in PA

[Guest guest]

Marla, are you seeing Dr's in Nashville? The only doctor I've had to examine me was the new Hematologist.. in like 4 years. They look at me as if I have 2 heads, then brush me off as if I'm totally off the wall.. I begged my PCP to listen to me, told her that she wasn't getting the full picture when all she would let me do was to give her 1 symptom at a time.. and seeing her once every 3 months.. Now, the symptoms of anemia can be along with many others, Shortness of Breath on minimal exertion, Chest tightness, fatigue, palipatations.. etc.. all of these being the ones I have.. she would either allow me to tell her I was Short of breath, or have chest tightness.. never at the same visit, she considered each one a complaint. grrrr.. Yes Doctors were more caring back in the day, before managed care.. now they are only concerned with if they are gonna get paid or not. and the quicker they get you in and get you out the better they get paid. If you have a chronic illness, they don't get paid the same,for your visits, because you have to keep coming back.. The government should be ashamed.. and the medical people for allowing all of this to happen..

-- Re:Where do I begin?

I also have anemia. My hemotologist told me that taking iron pills was useless. She said I needed IV iron. I had been taking Niferex 150 for months and I thoiught it was helping but when they did a CBC it showed that it was not working.

At first they put me on IV iron and Procrit. When my iron level was up to normal range they stopped the IV iron and switched from Procrit to Aerpnesp (sp?) It is suppose to be more powerful and cost less than Procrit.

Anyway it finely kicked in and my hemoglobin is now 11.3.

Today I had a visit with my internest who laughed when I told him the hemotologist said that they thought I had Anemia of Chronic Disease. He then laughed and said that is what they alwaysmsay when they can't figure out why you are not making good RBC.

Take Care

Judy in PA

[Guest guest]

Hi Marla, I know what you mean about doctors knocking the other doctors. I have had some doctors who want to take me off all the meds. that the other doctors have put me on and want to start over in their way. I don't know if that is good or bad myself. Debbie Co-ModeratorMarla Bramer wrote: I sure hope I don’t ever get this type of anemia, I was anemic in my pregnancy and was given IV iron and went into anaphylactic shock, and can not even take iron by mouth. I hope you both get better soon. Don’t you just love it when one doctor knocks what the other doctor is doing, they never use to do

that, but then again it seems to me that they use to care more, I was in nursing for 30 years, of course there always is the good docs and the bad, but it just seems they were more caring?? May you all have a blessed Easter. Marla Bramer "Faith sees the invisible, believes the incredible and receives the impossible" From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of rjbassoSent: Tuesday, April 03, 2007 4:47 PMTo: Neurosarcoidosis Subject: Re:Where do I begin? I also have anemia. My hemotologist told me that taking iron pills was useless. She said I needed IV iron. I had been taking Niferex 150 for months and I thoiught it was helping but when they did a CBC it showed that it was not working. At first they put me on IV iron and Procrit. When my iron level was up to normal range they stopped the IV iron and switched from Procrit to Aerpnesp (sp?) It is suppose to be more powerful and cost less than Procrit. Anyway it finely kicked in and my hemoglobin is now 11.3. Today I had a visit with my internest who laughed when I told him the hemotologist said that they thought I had Anemia of Chronic Disease. He then laughed and said that is what they alwaysmsay when they can't figure out why you are not making good RBC. Take

Care Judy in PA

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[Guest guest]

Gee, there used to be this weird concept called "collaboration." Wonder what happened to it?

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: Re:Where do I begin?Date: Sun, 8 Apr 2007 09:23:09 -0700 (PDT)

Hi Marla,

I know what you mean about doctors knocking the other doctors. I have had some doctors who want to take me off all the meds. that the other doctors have put me on and want to start over in their way. I don't know if that is good or bad myself.

Debbie

Co-ModeratorMarla Bramer <mebramer (AT) gmail (DOT) com> wrote:

I sure hope I don’t ever get this type of anemia, I was anemic in my pregnancy and was given IV iron and went into anaphylactic shock, and can not even take iron by mouth. I hope you both get better soon. Don’t you just love it when one doctor knocks what the other doctor is doing, they never use to do that, but then again it seems to me that they use to care more, I was in nursing for 30 years, of course there always is the good docs and the bad, but it just seems they were more caring??

May you all have a blessed Easter.

Marla Bramer

"Faith sees the invisible, believes the incredible and receives the impossible"

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of rjbassoSent: Tuesday, April 03, 2007 4:47 PMTo: Neurosarcoidosis Subject: Re:Where do I begin?

I also have anemia. My hemotologist told me that taking iron pills was useless. She said I needed IV iron. I had been taking Niferex 150 for months and I thoiught it was helping but when they did a CBC it showed that it was not working.

At first they put me on IV iron and Procrit. When my iron level was up to normal range they stopped the IV iron and switched from Procrit to Aerpnesp (sp?) It is suppose to be more powerful and cost less than Procrit.

Anyway it finely kicked in and my hemoglobin is now 11.3.

Today I had a visit with my internest who laughed when I told him the hemotologist said that they thought I had Anemia of Chronic Disease. He then laughed and said that is what they alwaysmsay when they can't figure out why you are not making good RBC.

Take Care

Judy in PA

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