Here Comes the Port

I had my port consultation with the surgeon today. He seemed very knowledgeable and made me feel at ease when he told me he had placed ports in other patients with Autonomic Dysfunction and Gastroparesis.

While I am not looking forward to having even a “simple” outpatient surgery, I am ready to get this over with ASAP. I’m scheduled for next Tuesday morning. The scheduler asked when I’d like my surgery, and I told her as soon as she could work me in. I have dreaded this next step in the “Chronic Illness Drama.”

I’ve spoken to numerous nurses. I’ve talked to a LOT of patients online who have ports. They’ve all ensured me that I’m making the right decision. “Your life will be much easier with a port.” “No more blown out veins.” “Just one stick from now on!”

It DOES sound good! I cringe when I think of something foreign inside my body again. I absolutely HATED that heart monitor I had inside of me all those years ago. It bugged me the entire 18 months. Granted, it was larger and shaped like a cigarette lighter. The port is smaller. Hopefully, the port experience will be NOTHING like the inserted heart monitor because this time, the foreign body is here to stay.

I don’t exactly have any options though. I’m 42, and my last “good” vein has developed scar tissue. I have a prescription for weekly IV saline fluids that my body needs. I landed in the ER twice back in June, and it took the nurses 45 minutes to start an IV. Multiple doctors have told me, “Get a port.”

It is time to get a port.

I don’t want to do it, but I’m going to even though I’m nervous about the small chance of infection.

Before I brought up this small risk with the surgeon today, he beat me to it. He said he’s seen patients who have Autonomic Dysfunction AND Gastroparesis contract infections from their ports because they want to keep needles IN their ports. He warned me that I could NOT do this at all. Then he graphically explained what happened when ports become infected. I thanked him for the information.

I told him I would follow his directions to the letter because my body does NOT fight infections like it should. Bronchitis literally knocks me down for a month. The flu almost kills me. I don’t need to have an infected port! It’s one of the reasons I’ve put this surgery off. Infections scare me. I’m not ashamed to admit it.

The surgeon had an example of the actual port he plans to insert in my body, so I was able to look at it. Unfortunately, he’s not going to go through the same scar I have on my chest from the heart monitor because it’s on the left side. He said it’s better for ports to be on the right side. So I’ll have another scar. Oh well. It’s not like I go around flashing my chest all the time. I do wear a bathing suit a few times a year swimming though, and I’m sometimes still self conscious about that old scar.

He said the port will be raised and noticeable too. I’m nervous about that as well. I’ve only recently lost my self consciousness about using my power wheelchair and mobility aids. I may be disabled, but I’m still a woman. I worry about my husband finding me attractive. Of course, he assures me this port will be a non-issue. I worry about the port showing through clothes. I worry about my large chest and my bras being uncomfortable with it because that WAS an issue with the evil heart monitor.  I’m just worrying. You see a theme? It will probably take some time for me to adjust to having the port.

I am going to try to focus on the positives: I can begin IV therapy again, no more blown out veins, no more bruised arms from blown out veins, one needle stick for blood draws, one needle stick for IVs.

I will try to take photos on surgery day and during recovery to share.

11 thoughts on “Here Comes the Port

  1. Good luck with the insertion of your port next Tuesday!
    will be thinking of you. I had a family member who had one and it was fine but the thought scares me and I’m not sure I’d want to have one put in while awake and not under anesthetic. Are you treated with saline fluids for your POTS? What is actually in the IV drip, is it just plain water? I keep being told to increase my fluids but I can’t keep 2 litres down but they never put me on a drip even when I end up in ED after collapsing. Is there a criteria or something for how bad you have to be to be given an IV?

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    1. Thank you! I’m going to be under anesthesia similar to having a colonoscopy. Yes, I am treated with saline fluids for POTS. It is basically saltwater in the bag. My potassium is very low at the moment, so my PCP has discussed adding liquid potassium to my prescription. My prescription simply reads: one bag of IV fluids for Autonomic Dysfunction. A lot of people in the medical field have still never heard of POTS, but they HAVE heard of Autonomic Dysfunction. My PCP and my neurologist use that term. I have started to use that term as well when speaking to medical personnel because they seem to “get” it. Then I will go more in depth about my severe orthostatic hypotension and the tachycardia. I’m not sure what the criteria is for being put on an IV. Honestly, I asked for the option to try back in the winter. I had been vomiting constantly with the gastroparesis. I had lost another 4 pounds in a month after losing 4 pounds the previous month and was living on a few graham crackers a day. My lips were cracked open. My hair was dried out. I looked horrible. I asked my PCP to research Vanderbilt and Mayo Dysautonomia treatments and to let me try because otherwise I would waste away. She agreed to the treatment.

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      1. Oh Wow. I have severe tachycardia, by that I mean at times my heart was on 298 BPM and used to always be given IV fluids when in ED but they no longer give me that since my diagnosis. It seems to be that they just let it go and say it’s just POTS.

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      2. Thankfully, I haven’t seen heart rates that high since I had an ablation and I found the right medication combo. My heart rate usually only spikes near the 200 mark. It’s still miserable since my resting heart rate jumps between 65-85 but nothing like the high 200’s!

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      3. Oh Wow. My HR is never that low even on meds. Did you have the ablation for AF and SVT? I also have an arrhythmia but can’t have the ablation as it makes POTS symptoms worser and I don’t wont to take the risk. Possibly why your POTS is so bad.

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      4. My gastroparesis is somewhere in the middle. I don’t have a feeding tube because my stomach was around 50% functional when I had my last gastric emptying study in 2015. I usually can eat a step 2 gastroparesis diet but I have flares when I need to go back to a step 1 diet. A few times I go into severe mode like I mentioned to you where I can’t keep anything down and become severely dehydrated. Also, getting the flu or catching viruses can be dangerous. My stomach isn’t absorbing nutrients though and my gums/teeth are paying the price. Hopefully the port will help and doctors will add some vitamins down the road.

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      5. Good to hear your doctors are actually taking care of you and you are receiving the care and support you need. I don’t have a diagnosis of gastroparesis possibly because the doctors don’t even know what it is but when I have a flare I can’t put anything down more than as tablespoon of water either yet the doctors still keep trying to find out what is the cause and there’s nothing I can do but wit till it resolves.

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      6. Primary Care Physician- my regular doctor that I see. She’s not a specialist. Insurance requires patients have a PCP. Some insurance companies require a referral from the PCP to a specialist before patients can see one. She’s the doctor who takes care of my “regular” illnesses.

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