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02/04/2011 01:04 PM

does anyone else here have a portacath?

slmercer
slmercer  
Posts: 48
Member

i just had port surgery on 1/14/11. I was wondering if anyone else had gone through port treatment. I don't know anyone else that has. I guess I just kind of feel like i'm alone and isolated during this process Sad
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02/04/2011 03:03 PM
Bettyg
 
Posts: 33487
VIP Member
I'm an Advocate

welcome sarah Smile

cute photo too! i don't but i have a friend who has a caring bridge site who has a PORT!! every detail of her journey is there .. the good, bad, the ugly of dealing with lyme disease/co-infections.

there are other lyme/co-infection people on this site as well.

if you want it, private message me, below my name, and i'll send you cathy's site.

when you get it, start at the BOTTOM of her journal leading you up to where she is today.

starting a CB site for yourself to inform family/friends might be an idea for you too Smile

check our my welcome letter at top of support in sticky pin area with links/info galore for your journey. Smile hugs to you.

sorry you missed out your sr. yr.

on the cb site is a 18-20 yr. old who missed ALL 4 YRS. being homeschooled. later .. swamped

bettyg, iowa leader


02/06/2011 01:20 PM
amethystanne
amethystanne  
Posts: 252
Member

I do not have a portacath but I'm sure other people here do. Welcome to MdJunction.

How do you feel about having the cath? How are your symptoms today?


02/06/2011 02:52 PM
slmercer
slmercer  
Posts: 48
Member

thanks for the welcome. It's been kind of rough having one just because of my age and everything. It's not that bad though. My symptoms have been a little bit better. My headaches aren't as severe and I am less light sensitive. It's only been 3 weeks though since I started treatment, so I'm not expecting too much. I can tell it's definitely making a little bit of a difference already though Smile

02/17/2011 05:17 PM
carmen4
carmen4  
Posts: 4
New Member

Yes, I have a portacath and have been in treatment for about a month now. I had severe reactions to the glue and adhesives used after my port what placed so my treatment was delayed be a few weeks. I've had a hard time finding anyone with a port, most lymies have picc lines so it's nice to know there's someone else out there!! I still have issues with adhesives, have you had any problems with allergies to adhesives or problems with your port in general?

CareySmile


02/18/2011 10:16 PM
slmercer
slmercer  
Posts: 48
Member

Yay, someone else out there who went with the port! I've been in treatment almost a month now too.

I've had pretty bad adhesive allergies too! I'm allergic to the bandage, and tape that is supposed to be used to cover it up.

Currently, I have blisters covering my chest. I've also had a hard time getting a blood return a few times.

Have your nurses had any trouble getting yours accessed? My nurse can NEVER get it right in one stick.

How often does your needle get changed? Do you ever have periods where yours isn't accessed?

Sorry for the million questions, but It's not often that I meet someone else with a port!

-Sara Smile

Post edited by: slmercer, at: 02/19/2011 12:36 AM


02/20/2011 09:36 PM
carmen4
carmen4  
Posts: 4
New Member

Hi Sara!

Sounds like we're on the same track with meds and reactions!! I initially had blisters from the adhesive and if I'm not careful they pop up again pretty easily!

After just 4 days of medicine they took my needle out so I could give my skin a break! My doctor gave me some prescription strength hydrocortisone and within 5-7 days the rash was pretty much healed. Has your doctor suggested anything? How are you dealing with the blisters?

As far as the blood return goes, yes, initially we had a hard time due to the needle size being too small, but recently it's been fine. Every nurse I've had has had to poke me at least twice, but I thought it was just my dumb luck so it helps to know I'm not the only lucky port patient!! LOL Dizzy

My port is accessed daily and my needle is changed every friday. I had a nurse coming here for my first 30 days of treatment (4 actual visits), but now have to go to the hospital for needle changes due to insurance red tape. I no longer drive outside of a 5 mile radius and the hospital is 20 miles away, so I'm not too happy?!

I made the mistake of telling one of the nurses I went to my sons basketball game, technically she said I wasn't homebound because I went somewhere other than the doctor, church or the hairdresser-insurance is obsurd!!

Anyways, sorry to go on.....feel free to ask any questions any time!! At the moment my port is accessed daily, but I'm hoping that after I see my doc this coming Tuesday, that I will be able to do the pulsing treatment. With pulsing you're supposed to do the treatment twice a day for 4 days and then have 3 off.

I'm on IV Ceftriaxone and oral Doryx, amongst several other herbal supplements and I'm also doing glutathione IV 3 times a week (by my request). I've been diagnosed with a progressive neuromuscular degenerative disease that the doctors think was triggered by the Lyme, but we're hoping that this aggressive therapy will stop it in it's tracks at the very least!

What is your prescribed protocol? I hope that your doing well on treatment?! It's nice to talk to someone else that has a port, we are few and far between!! Feel free to ask any questions anytime!!

Hugs-Carey Tongue


03/30/2012 02:52 PM
Megonies
Posts: 4
New Member

Hey, thanks for all the Port info. I am seeing a specialist soon and a port is likely. Its great to get some info up front. I won't have to worry about the insurance, however, mine will come out of pocket.

MBlink


03/30/2012 04:40 PM
Bettyg
 
Posts: 33487
VIP Member
I'm an Advocate

meg,

my online friend, cathy, has a caring bridge site where she has discussed everythign about her port

the good, bad, and the ugly along with 1-2 photos.

if you are interested, PRIVATE MESSAGE ME, pms are below my name left side.

you need to sign in with email and password to access LYME posts since IDSA TROLLS hit all lyme sites 1-2 yrs. ago!!

bettyg, leader

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