Jump to content

Port Surgery With Dysautonomia


MissPatient20
 Share

Recommended Posts

Hey everyone,

I have surgery scheduled for Monday morning to have a port-a-cath installed so I can get things like nutrients, fluids, IV antibiotics, etc.

I'm quite nervous. I'm in bad shape. I'm also reactive to EVERYTHING around me and that I put in me...drugs, chemicals, smells etc. Everything send my autonomic nervous system into a frenzy.

Have any of you undergone surgery, particularly this procedure, with issues like this?

I'm having local anasthesia and they use two drugs to kind of "sedate" you during the procedure, but when I was trying to explain my hypoglycemia to the doctor, he said that I could drink something with some sugars in it, but then I couldn't have both drugs during the surgery. I'd have to choose between the two because together, they don't work when there's something in your stomach. He's giving me the choice between the Valium and the Morphine.

The doctor doesn't know what dysautonomia is. I don't blame him, most doctors don't! So I couldn't ask him a million questions about how my autonomic nervous system might react to this, and he doesn't quite know what he's getting into with me...I mean, I was just reacting to his nurse's perfume and hair products, so I'm worried about what my body is actually going to do when it's drugged!

So anyways, I was wondering if you guys had any words of wisdom for me, or if you wanted to share your experiences. Thanks so much you guys.

Link to comment
Share on other sites

I had the port surgery in 05. The surgery itself was uneventful but the recovery was rough. Seriously, not to scare you but it was a lot more painful than expected. However, my chest is very thin so there was a lot of fat to support it- lol.

I have to say something, however. While having the port was fabulous on some levels- I loved having the two good hours a day eight hours of fluid would give me back then- it came at a very high price. My port became infected and I developed sepsis. In October of 2006- I nearly died. The port had to come out. Although it has been hard at times to not have access to iv fluid like I did, I don't know if I can ever go back to a port. The most terrifying experience of my life was what I went through when it became infected. Unfortunately, several others on this site have experienced the same thing. Ports are a LAST resort. Please understand the very real and very serious risk.

I loved it when I had it- until it became infected. We were meticulous with its care and it STILL became infected with e coli and staph. So, I understand if you do go ahead with the surgery. I was absolutely desperate back then. I wanted to have some control of my symptoms and for a year and a half it work beautifully- until it didn't. So, best of luck to you I truly hope it serves its purpose for you and you can get it out as soon as possible.

Carmen

Link to comment
Share on other sites

I have a port. The hypertonic solution has burned out my veins (last IV=32 sticks, what was successful blew out).

The port has been an absolute lifesaver. The surgery under MAC anesthesia was easy to get through with not effects towards POTS.

The recovery was Rough Ruff Rough! I felt like they had implanted a swordfish in my chest. I even accused them of it, laughs all around. But that is what it felt like. If I was a drinking woman, I would have been plastered!

Part of this may be because I had an attention starved employee who decided to act up and get all bizaro and I had to return to work the next day and do her work which included nonstop entering data with my right hand and the port is in the right side of my chest. Looking back, I should have stood up for myself and stayed home!

Another unexpected thing is the pain two years later when the scar tissue started forming. It felt like stabbing pains for a few months. This is typical.

Then there was the time when it decided to tilt and lean against a back wall, putting fluid in felt like salt water on an open wound. Apparently that can happen too.

Perhaps the buggiest thing now is the cost to maintain. You have to get it flushed every month (6 weeks at the most) and pre-insurance, that is a little over $100 per pop. Also, before any dental procedure, including cleaning, you have to have an arithromycin RX going. Also, it has to be accessed when you need fluid= $100 vs and IV at $10.

Another unexpected is that I thought it would solve all my blood draw problems, but the people that can access a port in the hospital are few and far between. I still get stuck a zillion times for blood draws.

I also learned that you cannot do much weight lifting with your arms if you have one. You can still lay on your tummy to sleep, which is a good thing because if I sleep on my back chances are a cat will fly through the air and land their paw directly on it. OW!

I agree, it really is a last resort. The infection risk is SCARY. I'm freaked out about ripping the wiring in a collission or something. I almost did it when we were out shooting and I tried a big new shotgun. I snuggled it up against my right lower clavicle and just as I pulled the trigger, remembered my port wiring and instinctively shifted the but of the gun to my armpit. The kickback was excruciating and I was purple forever, but at least not dead!

For me, there were more pros than cons and I'm ultimately glad I got it because the picc lines are far more dangerous. It is not a light decision though and I've been told that mine at 3 years is good because sometimes they crack and the drum can only take a certain number of pokes. My goal is to keep mine 6 years.

Kits

Link to comment
Share on other sites

My Brother has a port but doesn't have POTS. I just thought I'd chime in to say that it's been a lifesaver for him as far as getting fluids (he has cyclical vomiting syndrome) and meds. It's never gotten infected which is good and he's had it for probably 4 years now. I do remember him being in more pain than he expected after the surgery - but in the end it was worth it.

Blessings on your surgery! I wish I could help with your questions,

Lisa

Link to comment
Share on other sites

I'm refusing mine. First my best friend died from her's and was brought to back to life, but had one infection after another. My vascular surgeon was going to admit me to put mine in due to the fact you bleed a lot and with Pots we can't risk losing a lot of blood. He also informed me they could puncture my lungs. Gladly they would fix them if they did that. No way was I having this done. He said he would call and set up an appointment after I was off my antibacterials 14 days as they mess up all blood work. Well that's not happening either, so I never got a call. I don't think any of my blook work is ever right any more.

Since then I have come up with my own techinque. Before going to the hospital I drink a can of gatorade and my daughter makes and sells heats packs (home made). Mine has cloves in it smells delightful and feels so nice. I heat it at home and start the preheating of my hand and arm before my cab comes to get me so by the time IV theraphy comes to see me I've gotten down to 1 stick now. Those gel packs are useless that they use and I hate that they use them on everyone. After I stick the pack on my chest as the heat feels good on my tired chest muscles and the smell of the cloves makes me feel loved knowing that my daughter made this for me. I know she can't be with me , but I feel like a little part of her is with me with the heat pack. I feel the LOVE.

So, I've gone from numerous sticks, no veins, to suddenly finding veins. I also think hospitals don't have enough IV staff to take the tme to put in IV and are quick to say you need a port. Basically living in the infusion clinic I see everyone who has one ending up infected and miserable. If hospitals had more IV staff maybe less people would have ports as they would be less rushed in trying to get a line in someone before rushing off to the next person.

Well, this is just my 2 cents worth and I'm so glad I never went through with it. To each his own and I wish you the best of luck.

xxx's

Bellamia~

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...