Tomorrow I meet with the Port surgeon.........
 

Does anyone have any questions I should make sure to ask him???
I have to admit.....I've had 12 major surgeries in my life.....but this one has me a little queezy! I've never had one even similar to this one so not sure what all I should ask the surgeon tomorrow........

Hi Rox.

How are you doing? I'm sure others will come and tell you what to ask your doc, but I just wanted to wish you well.

You take care,

Melody

HI Mel!
Thank you!
Mike is going with me to the appt tomorrow.......and I'm very glad of that! I'm just very nervous about having this done.
How are you and Alan....guess you survived the holidaze! :) Loved all the videos y'all made!

Roxie,

Please tell me you saw the one where Alan sings the song Celebrate???

I never laughed so hard in all my life.

mel

Yep Mel, I sure saw it......and laughed and laughed and enjoyed it!

OH My Roxie! I am soo glad!
 

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! :hug::hug:'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!!:hug:

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!!

I bet that after you left THAT doc?
 

He went WHEW! Never got a 'grilling' like that before! :winky:
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? :grouphug:'s - j

Ouchie
 

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

Billye:hug::hug:

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:):)

Hi Roxie
 

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

Roxie i had a PIC
 

while in the hospital for a month. They poisoned my body during an operation. I had to antibiotics 24 hours a day for two weeks. They put a PIC in my arm for the meds and i had no trouble at all. It had 3 ports and sometimes i had 2 meds at once. I thank GOD someone invented the PIC.

I will pray for you. George

Go get 'em, Roxie.
 

Just keep your wits about you, and don't hesitate to speak up if soemthing seems to not be going quite right, either during or after . . .

I wish I had advice or more to add. Just to use your voice and ask for what you need from docs and family/friends. I am sending so many hugs and you are such an inspiration to keep fighting. I have so many role models on this board. I am lucky. Now sending many hugs and you are always in my thoughts!

port pain?
 

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!

Good Luck Roxie.

Take care, and keep calm. You'll be fine!!!

melody

HI Cristy!
I tried to PM you but you can't receive PM.......darn!
Anyway, I can't imagine all you've gone thru with your daughter and her illness! My hat's off to you! My granddaughter was born with out a bladder so I know how difficult that is to deal with....and she's doing really well right now.
Thank you for your post!

We're here Roxie
 

Fingers and toes (well ...almost) crossed for you. Remember us as a big bouquet of balloons flying around over you giving you our support and best wishes. Think about those balloons every chance you get. Red, Yellow, Orange, Blue, Green and so on. It will take your mind off things and help. The group sent me one while I was at Mayo. I thought about those things sooo much. Really did make me feel better.

I'll be the bright red squeaky one.:p

Good luck,
Billye

SubQ- alternative to IVIG
 

Roxie... by this time you'll probably be thru the procedure. As others have shared this may BEST thing for someone w/ poor veins & those related issues w/ IV.
I 'm one of those. Port was offered as solution after my veins "blew" during IVIG infusion ( lost nearly 30 gr. of precious IG that day)
I never got port-- instead my treatmts were dc'd per denials from my insurance when medicare Pt D went into effect soon after.

My treatmts just resumed few weeks ago -thanks to NuFactor--the specialty pharmacy that sponsers www.igliving.com & advocates for and educates about IG. No problems w/ IV for me now .... but

I heard about SubQ -Subcutaneous injections of IG (vs IVIG) It was mentioned as an option for people who have problems w/ veins; or who need/prefer to get IG more often & keep levels more consistent. My treatmts are every 3 weeks-30 grams.
SubQ could be weekly at modified dose.

This may be a better option or something others may want to investigate.
IG Living or NuFactor should be able to provide more details.... on SubQ as well as other questions about IG. These folks & company are really great!!

since my DR order IVIG , we just went w/ that ... to get things going again.



Wishing you the Best...


PS....
I just spoke w/ Nurse from NuFactor Specialty Pharmacy; we were discussing several things (since I'm "new" w/ them)
I asked her about SubQ-- she said it is NOt practical for people who get higher doses ( like 60 grams weekly) but works well for those on "lower" doses like mine which can be broken down weekly.
She also said need to have adequate body fat in thighs/ab--"pinch an inch" - to use SubQ. and be ok w/ self injecting.....

then she saw that SubQ is only approved for those Dx'd w/ PID's---primary immune . I wouldn't be able to get it w/ my Dx --CIDP .

anyway, perhaps this may be of interest or help to someone.....

again, I do encourage ya' all to contact igliving.com & subscribe to their magazine. Or if need Advocacy or have other questions about IG.
NuFactor & parent Co deal w/ several "specialty" drugs besides IG, and they are into education....and willing & able to advocate.

I contacted them about Botox --that my neuro wants to try for pain relief --Dx: cervical dystonia. They were great... too much & too OT for this thread... but kudo's to NuFactor and folks here in this forum who referred me to them via www.igliving.com.

BLessings....