All the 'experiences' I've had to learn from were from cancer patients...and one CIDP'er....
I guess, I'd go down a menu of questions I've picked up from meeting and reading about others' experiences...
1- How long is it gonna really HURT? Days, weeks, what?
2- When can I USE this thing?
3- How will I know that nurses are infusing me correctly?
4- How long is this thing gonna last? And, if I've got to get a new one, what will that entail?
Last
5- How can I tell if there is a problem, of any kind? What should I look out for in the short and long run? Admit your'e immune compromised and that you want to know about all the possibles...not that you will have them, just that you and your Mike want to know and be alert for possible problems, so's to avoid them...
Honestly? I am kind of jealous! It seems like a humane way to deal with infusions and bad veins! OK I AM plain jealous! 's truly! - j

Thank you J!!
I wish you were here to go with me cause you know all the questions to ask! I'm copying all the questions you gave me so I can take them with me tomorrow. If you think of more I'll check here tomorrow! Thanks again J!!

HI All!
I saw my Cardio Vascular surgeon this morning and scheduled my Port surgery for this Friday morning. He said it's a 30 min surgery....barring any complications ie: having the lung punctured by the IV needle etc...
Here's some answers to the questions I asked him about it:
1. How long will it hurt?? He said he usually sends home 30 Vicadon with the patient and they tell him they usually don't need that many. It'll hurt for about 3 days.
2. How big is the incision? It's about 2 1/2 inches and the cut is right below the left clavical on the chest.
3. When can I have my next IVIG? Right away. He's leaving a needle in the Port for easy access for that afternoon!
4. How long will the port last? Depending on the person.....it can last for several years.
5. How to tell if there's a problem? If there's redness around the port....or if I run a temp. or if the nurse has trouble getting the infusion going.....could be a clot.....

So hopefully all will go well. We were impressed with this dr. He said he's been doing Ports and all other heart related surgeries for over 20 yrs. Keep your fingers crossed for me!!

He went WHEW! Never got a 'grilling' like that before!
Really that is sooo super!
All the answers are totally in line with everything I've read about the things.
Honestly I am jealous...you gotta know that!
Soo soon, so fast tho...not enough time to asorb or process it all into your mind tho, is it?

Tho with all the discussions about other 'implants' in the body? This is one I would truly appreciate and welcome....if it were me?

Please keep us up to date about it all as you go thru it? On one hand that can sound morbid or voyeuristic...on another...just knowing a 'first hand' experience and the good and bad or indifferent experiences you have could help others about their decision [like my own-when that time comes?] Can help maybe save other's lives from 'needle misery'...

Go forth, be brave, it WILL BE UNEVENTFUL! By gosh! And you are going to be one very happy camper! GOT that? 's - j

Roxie,
Good luck! I'm thinking about you.

Billye

HI J!
I'll bet you're right.......the dr. was probably glad to see us leave! LOL But at least he sat there and let us ask him all the questions on our list and explained things well and asked if we had any other questions. I feel pretty good about him and the surgery.

HI Billye! Good to hear from you! Thank you for the good wishes!

I didn't have a hard time, it was the fear of the unknown,you did a great
job with your questions. Bless you heart and give Mike a hug. He sounds
great.. Hugs Sue

I have been offline quite a bit over the holidays and have not caught up yet. When I saw the posting, "Port Surgeon" I could not figure out what that was about and was trying somehow to connect that to the water I know you are not all that far from... Doctor on a ship maybe? Doctor who was a sailor perhaps??? It is times like this that makes me aware of how screwy brain fog can be...

Have a good day. I am sure you will do just great!

Cathie

I don't know if this will help, but my daughter is 5 and has had two infusiport placements.
It is a simple surgery and takes barely anytime at all.
I don't know about us wimpy adults but she was playing and doing fine is 36 hours after surgery and we used the port hours after the surgery to make sure it is working. Just be sure to know your needle size and your heperin solution so if you have to have it accessed for any reason you can and it makes it easy. It needs to be accessed at least once every 4-5 weeks to keep it working.
She had Ostegenesis Imperfecta of a moderate to severe type. "OI" is brittle bone disorder and she has had 10 breaks about 50 fractures 14 bone surgeries and 4-5 child hood type surgeries.
Ports are wonderful as long as they are cared for properly.
You replace them mainly when they stop working or if they become infected.
God Bless,
Cristy

Hi All!
Thank you for your wishes. I'm ready for my surgery tomorrow and I have confidence in the surgeon. My husband will be with me tomorrow and we are hoping all goes well. I will let y'all know how it goes....Hugs to all of you! Y'all are the best!