Re: Marta and Connie (LONG)

[Guest guest]

Hi Happy,

Thanks for your advice, I will be starting out with 4 weeks of Rocephin,

2Grams daily. Your idea of a calendar or diary of symptoms is also one I am

planning to do, I will make myself do this, as I am a procrastinator about

writing about my symptoms, tried in the past and failed miserably, as it

always depresses me to see it in writing, but I will definitely do it this

time as I need to help my doctor to get approval for longer doses of IV. I

will attempt the rectal thermometer, twice daily as you suggest, won't enjoy

it but will do it. How long do I leave it in????

I haven't heard from the Home Health agency yet, maybe tomorrow, I am

still unsure about the method of infusion, I would feel oh so much better if

I knew at least one other Lyme person who used this method, I would

especially be happy to know if they improved too. I really should discuss

with my doctor too, and get his opinion. It irritates me that the Home

Health company insists on this method, and I really think it is to save

money on supplies and their time as well, I just want the best most accepted

mode of delivery, not the one they want to use because it is easier for

them. The fact that the infusion will be in my chest port rather than my

arm may be another factor and why they feel this is a good method. I just

feel so dumb about this stuff and am grateful for any advice anyone can

give.

Thanks again,

Hugs,

Marta

[Lyme-aid] Marta and Connie (LONG)

>From: HapsQuilt@...

>

>Dear Marta and Connie,

>The news of your IV approvals is indeed exciting! I have a few words of

>advice regarding infusions.....don't get too hung up on the how and whys

that

>everyone else does it. You should follow the directions of your infusion

>company, home health nurses, and doctor. Each group has their own set of

>guidelines, and as long as you tolerate the infusion, fast or slow really

>isn't the issue. Some medications are more caustic than others and require

a

>slower rate.....I know if I run one of my meds as fast as allowed by the

>manufacturer I get chest pain.......so I run it slower and have no

>problems......and neither of you indicated what medication you will be

>getting IV, or if you are getting more than one. I think the issue here is

to

>communicate with your nurses and get real comfortable with doing your own

>meds before you " go on your own " . I am a nurse and when I started IV meds

10

>months ago, I had so much brain fog I couldn't remember how to get the air

>out of the syringe! I was so embarrassed by my lack of nursing skills, and

I

>am sure the home health nurses didn't understand my confusion.

>The other thing I would recommend for you to do is to keep a daily

>calendar.This will help you see the small changes and will be beneficial in

>defining the herxes and may even help your doctor with insurance approval.

On

>this calendar you should rate your pain, fatigue, fog,and whatever else is

a

>big symptom for you personally. Chart your menstrual cycle, herxes, and

days

>of therapy. AND most important is taking and charting twice daily rectal

>temps!!! This is required by my doctor, and although I failed to do it for

>several months, I finally got up the energy and brainpower to do it. I am

>amazed at the fluctuations, that how the temperature reflects how I am

>feeling, and how I can predict a herx by my temperature even before I feel

>worse. My temp is so fluctuating I have not even been able to find the

>baseline. But hopefully as I get better that will become more apparent and

>will serve as an indicator in recovery. As patients I do believe we need to

>document as well as physicians.....or better!

>I do wish you both an easy time.......and much improvement!!!

>Happy (Maine)

>

>---------------------------

[Guest guest]

Hi Marta,

Can you demand a picc instead? I was talking to a nurse last night, and

she said the reason for the chest port, is its used on a very long term

basis, and collapsing or easily infiltrating veins....question your home

health care!!

Connie

[Guest guest]

Hi Connie,

The reason I had the chest port put in was because I have such awful

veins, all my life it has been a struggle for anyone to draw blood. When I

got married, the doctor had to draw blood from my ankle for the testing!

Thus, it was my best recourse. I had an extremely tough time with the

surgery to put it in too....I joke that the surgeon couldn't find my heart,

but actually I must have small, deep veins there as well, instead of the one

inch scar most people get, mine is 7 inches long, and took 13 staples to

close. It was very painful too and took 4 weeks to heal, I did need to

infuse by arm veins for those first four weeks, my home health nurses were

thrilled when they finally got to use the port.

Hugs,

Marta

>From: ConnieK <conniek@...>

>

>Hi Marta,

>Can you demand a picc instead? I was talking to a nurse last night, and

>she said the reason for the chest port, is its used on a very long term

>basis, and collapsing or easily infiltrating veins....question your home

>health care!!

>Connie