to port or not to port

Anyone?

This is a very personal choice and I don't know that I can make it for you. I have never had a port so I don't know how it feels. My daughter had a port for chemotherapy for her breast cancer and it was because her veins could no longer take a poke of the needle. She had no more veins available in her legs or her arms. It was her last resort to try and save her life by administering the drugs. She and her doctor discussed it and all the side effects were discussed with her before it was done.

It's not worth it for supplemental treatments. That you are questioning it gives you your answer.

I agree. I personally wouldn't put a port of any kind in for supplemental stuff. I had one put in (a med-line) but that's because I was getting daily IV for a month. Each time they poke your arm, you risk infection, bleeding, soreness, bruising, etc...Probably not life threatening, but you can seriously damage your arms. You might want to figure out what kind they're putting in as well. Med-lines are less invasive and risky than pic-lines, but med-lines can only last for a month, where pic-lines can last quite a long time (6 months?).

thanks to all... ya it is chemo style.sits under skin below collarbone .i have als like symptoms. .was not waiting for that dx...next nuero is in october so i did igenix etc been treating for 6 months (i know short)seen llnp for 3 but i think it is a small vessel vasculitis .spurred by ear infection /sulfa abx.i have a temp dysregulation ,weird porphia ,livedo reticulitis ,extreme popping of joints,enlarged heart/ rbbb..mri with typical little lyme lesions .,vertigo, degenerative spinal scoliosis, chostoidris, hiatial hernia, pain behind the eye, mcs and many other sx. Anyway the tx for vasculitis is roids and lowdose chemo so no..glad rhuemy sent me to id duc he called lyme a false positive ..i digress, so the only other tx ,like buhner says is calm the cytokine storm , i found one paper of romainian girl who used theraputic curcumin.. .i found iv in the next town over ..they do rociphin also... the nurse who spotted lyme said to port up as i would be treating for a couple years ..she had picc trouble after 8 months...llmd said i would need abx anti fungals and antivirals my whole life.which sounds like it would shorten it...i just want life back and muscles back...i found a few people with this myopathy. ..i believe it is mycoplasma and borreliosis and/or bart. And cannot afford anymore damage..i did ask for rimfampin and mino but she said doxy was equivical and buy some alinia. I have some zith and tini and diflucan but i dont want to self treat .Rhuemy gave me some plaqunil? i put off port appt til end of the month....

Post Edited (bluelyme) : 3/15/2016 10:29:48 PM (GMT-6)

Jmoon,How did you treat proto?thanks for heads up...

I'm going in tomarrow and need all the prayers i can get im really freaked out

You are really sick, and that sounds scary. I'd be freaked out, too. I'll be thinking of you and praying for you today, bluelyme.

One of the many things I've learned in recent years is that stress is bad for health...it can prevent healing. Modern life is intrinsically stressful..add any of a million other stressors (illness itself) and it's difficult to heal.

Take some deep breaths today and know you're not alone...there are many of us here rooting for you.

The ozone, silver and glutathione are all being done for neuropathy? I was also doing BVT for about 5 months. Had to stop because my neuropathy seem to have gotten much worse while doing BVT.

bluelyme I am glad it went well for you. So sorry you had the panic attacks. I get them at the mention of picc or port for anyone else. I cannot imagine if I ever had to have one.

Hope it continues to go well.

Bluelyme -
How are things going for you? You are battling quite a bit - you have a complex series of issues but it sounds like you have good support and you are doing the right thing by trying to build up your immune system and strength before launching into some tough treatment.

Hate that I missed the IV port conversation but there was good input by others and it sounds like you made the right decision and the procedure went well. I have an IV port as well - have been infusing Rocephin for a year for lyme and started vancomycin for bart a few wks ago - can help answer q's if you have any.

Access
The port needs to be accessed and de-accessed on a weekly basis in order to prevent infection that can occur if the same needle is left in too long. Some people are able to buy huber needles and other supplies necessary for accessing on their own - I'm sure you have a source. And there are youtube videos demonstrating how you can also access the port by yourself and can thus bypass home health care or nurse care to do this. I'm sure you already know about all this. But others like me - my insurance paid for my port ($26k...) so they want to control all access to it.

Maintenance
Just be sure to be very diligent with care and maintenance and don't ever skip any steps. Always flush w/ saline before and after you infuse anything--and you probably need to use heparin or a blood thinner to keep the port clear--this is so important.

The port that they installed is about the size of 6 stacked quarters and is attached to a catheter that they threaded through the main vein into the heart cavity. Any infections can be serious because it's basically a mainline into the heart but they're rare since the only penetration through your skin is with the needle, unlike the PICC line in the arm in which the entire catheter is sticking out of an open wound. With a couple of years of treatment, you are going to appreciate the simplicity of the port.

Healing time
Do everything you can to let the installation site rest and let it heal as well as you can. Your body is weak so it might take a little longer to heal than you think it should--and the lyme makes it harder. Don't assume it's done healing once it's no longer sensitive - really give it time for a pocket of tissue to heal around the port, which will help hold it in place. Wait like 2-3 weeks before lifting heavy things (groceries, laundry, suitcase) and before using the full motion of your chest/ arms.

Cautionary tale
I did NOT allow mine to heal properly - got too physical way too soon and have paid the price ever since. It took 2 months for a pocket of tissues to heal around it and by the time this happened the port had shifted up towards my shoulder over an inch--this, in turn, forced the tip of the catheter to shift too far down the artery and into the heart, which has caused heart problems and the catheter is more prone to clogging up, which disrupts my treatment about once a month.

Showers
Do not get the bandage placed over the needle wet - if you do you'll need to de-access, clean and re-access all over again. This is a pain - none of the waterproof bandages or other mechanisms have worked for me so most of the time I shower only at the end of the week when I can de-access the needle and before the nurse comes to re-access me. Baths are better.

But other than that, I feel very fortunate that my daily infusions are pretty straightforward. Please let us know how you're doing and ask any questions you have -

-p