Do you have EM and have a Medi-port for infusions?

hi All,
My EM (AKA Ethel) and IV treatments to attack her have really taken a toll on my veins. So much so that even picc lines are becoming impossible to get.
I will be getting a port procedure in 2 days, so that I can get infusions without so much drama. I’m not excited about getting the port though, and wanted to see if anyone here has a port for EM infusions and treatments?

Thanks and stay cool!

Pesto

Hi Pesto,

Im so sorry to hear that - bless you. Its not uncommon for infusions, blood taking etc.. to take a toll on veins. I did have a port for cancer - dont worry its a minor procedure. I was apprehensive too, but honestly its nothing to worry about. Luckily, they can still find somewhere to IV me ,but im preparing for the port decision too. As long as you keep an eye out in case of infection, it is easier and less stressful than being a pin cushion. Do you know who will be carrying out procedure - vascular or pain specialist etc.? What infusions are you having Iloprost, Lidocaine or other?

This link explains the procedure in detail.

http://www.veins4life.com/faqs.php

Previous members post on ports ( Hickman lines).

http://www.livingwitherythromelalgia.org/forum/topics/picc-lines-an...

The mod team will share this topic out to all LWE members, so hopefully you will get some good feedback to your question

Aside the topic, how are you feeling? How is your pain?.

Please do touch base with any questions :-)

Thinking of you

God bless

mads

Hi Mads!
Thanks so much for the reply. That’s very comforting to hear that it is not going to impact my life negatively. I was so worried that it might take extra long to heal for me due to my other health conditions. But it seems like it is similar to the picc lines I’ve had placed often.

Can I ask if it scarred much when you had yours removed? I seem to be covered in scars these days from picc lines, biopsies, surgeries, etc. I was not thrilled about ‘installing’ more items in my body : ).

I will be continuing with litocain and ketamine infusions, but my last hospital stay 3 weeks ago forced me to get off the fence about a port, since it took 36 hours to get an IV in me. I went through crisis nurses, life flight nurses, anesthesiologists, etc. And all of the pin-cushion failed attempts would trigger such bad Ethel flares too. It was annoying!

Thank you for calming my nerves, and for providing those links. I really appreciate it!

I’m so glad that you beat your cancer, and am praying that you find relief from your EM as well.
Hugs!

Pesto

Hi Tizzy!

I’m SOOOOO glad that you got some relief from the ketamine after a while. It was such a weird experience for me. Actually each time is a weird experience, so I would keep trying to anchor myself with meditation, and breathing. I was happy to be of of one help though. It seems so much of EM treatment is hit or miss. Too often ‘miss’.
We all need a cure!!!

Blessings guys,
Pesto

Hi Pesto.

I have problems on a regular basis with getting blood and infusions. I myself get lidocaine infusions with Mexiletine pills. I have had them threaten to have me get a port stating if it continues to be this difficult it will have to be done.

I understand the trauma involved in not being able to get a good vein . It is down right painful and lasts so long each time they try I find myself praying to God that this time they will get it!

My last infusion after trying for a couple of hours and bruised all over not to mention I often get nerve pain where they hit nerves. Any way I asked my Doctor can I just run my hands under warm water as this triggers my EM flare and thus my blood vessels swell and it worked like a charm! I have used this method at blood draws as well. I don't know why mine are so difficult and sometimes they aren't bad at all! I think it is because the vascular hypersensitivity. They not only open up and bulge with warmth but they also constrict with my Raynaud's. I think they are almost never normal.

I would give this method a go and see if it works before getting the port if possible. It has saved me from needing it done.

I hope either way it gets easier on you. I am so sorry you have had to suffer so many times.

Take care,

Alina

Honestly, yes, you will have a scar - but the scar really depends on who performs procedure. Like all scars some are neater than others. The key is to keep incision covered till nicely healed and watch for possible infection. We all heal differently ,so that is another factor to take on board. Mine now looks like a scar you sometimes get from a vaccine (on arm) but above breast - more or less level with arm pit ,height wise. Im fine with it. In fact biopsies ive had look worse ,so please dont worry. Scars fade- remember.In fact,one breast cancer lady I know actually decorates her 'scar' with those stick on coloured diamond jewel things- covers it up rather like nail artwork. Looks really good too. So ways round these things.Good job you are female or would sound bit strange - right lol!

I do hear you about scars, biopsies etc.... I am so sorry you have to have a port but believe me it is going to be so much easier for you- bless you. After couple weeks you really wont notice it. Its the thought that is off putting - I know, I felt same. I couldnt have got through treatment as trauma free as I did without it , Pesto. I mean - no more pin cushion is worth its weight in gold :-) . I am following close on your heels so there will be two of us .

Oh Alina - love your blood letting flares induction.... What we EM'ers have to go through lol!. As my lovely Miss Tizzy says ,please let all your friends here at LWE know how you are getting on.

We are all thinking of you.

Pesto, you are inspirational! .

God bless

The biggest biggest 'gentle' hug .

x

PS: Thank you so much for your kind words. Beating EM is next on my list :-)

Thanks for the info and the support you guys!

Alina- as for the warm water, I can’t even think of those words or I swear I flare for hours, ha! I annoy every crisis nurse who marches in with warm packs and then would have to March back out with them since I wouldn’t let them near me with anything warm. Since I don’t really had pain meds that actually work for my Ethel pain, I try not to ever encourage additional flas on too of my daily ones. I’m so glad that works for you though : ))

I heal sooooo slowly, so I guess that’s why they want to keep me for 6 hours post-op. Hrrrrumph.

I will NOT freak out and eat everything in sight (again). I will allow myself to be stressed but not react to it. Breathe breathe breathe, right?

Blessings! Keep COOL!
Pesto

Don’t get me wrong pesto. I flare badly too. I just bring along a small fan and a chillow or chilli pads to cool my self after they get the needle in. I really don’t have much of an option…EM flare or be poked by a needle all over my body for hours! I really am not sure which is worse which says a lot about being poked and them digging around inside me for hours.
At least for me I can use my tools to cool down and at least minimize my resulting flare in turn getting out of that darn hospital a little quicker too :slight_smile:
I hope your procedure goes well.
Take care,
Alina

Just wanted to thank you guys for your input and advice.
It’s day 4 post procedure now and it finally feels like am on the mend. Still can’t lift my right arm and am crazy sore, but healing!
The docs weren’t able to get a vein to start an IV pre-procedure, so the team got creative. They numbed the area around my jugular and then gained access to the jugular right there instead. Then gave me the heavy sleepy meds right into the jugular vein before proceeding. Amazing. Guess I am not the only one with impossible veins.
I asked if I had a choice on which side to place the port. When the doc asked why, I said that my left boobie was smaller than my right, so it would be great to even that out if I could. Boy did they all laugh at that, Hahaha. Too bad it had to be placed on my right side : (.

Have a great day guys and stay cool
Pesto

Dearest Pesto,

Thanks for letting the gang know how you are. We have all been thinking of you. Hmmm , that was not nice experience for you - bless you. Do you know how very brave you are! It will get more comfortable my friend ((((((((((pesto)))))))

Hey- you want me to send you some of that 'boobie' art that us mastectomy girls use? ;). You and your sense of humour - totally inspirational!

Biggest biggest hug

God bless

mads x

Mads! You’re hysterical! Yes, send me…Hee Hee
Be well everyone!
Pesto