Gastroparesis: My experience getting an implanted port

Well, this is me smiling in front of the camera three days after getting my surgically implanted chest port which I’ll be using for IV fluids and medications in the future. As you can tell, I’m pretty bruised up and have a lot of steri-strips covering the stitches. What you can’t see is how sore I am or how much pain I have. I’m actually doing quite well, all things considering.

I’m here to tell you what to expect if you’re facing getting an implanted port, whether it’s for chemo or another disease or disorder (like gastroparesis – read my diagnosis post here) that requires you to get IV fluids or medications on a regular basis and you want to avoid the repeated sticks of an IV needle. In my case, I was receiving IV fluids and medications (Zofran for nausea) about five times a week due to my diagnosis of gastroparesis and inability to eat any food, only liquids. Unfortunately, the nausea the accompanies my disorder is often so severe that it makes getting adequate fluids difficult throughout the day. I talked with my GI doctor and he thought this was going to be a long-term treatment and agreed with my request for an implanted port. I chose a port over a PICC line because of the decreased risk of infection and the ability to shower/swim with it without needing to wrap it or cover it somehow to prevent it from getting wet.

I’m an RN – right now I’m on medical leave from my labor and delivery job, but before that I was a med/surg nurse. I’ve accessed hundreds of ports in my day and am fairly certain once this heals, I’ll be able to access my own, providing home health care allows me to. It helps that I’m left handed and my port was placed in my right chest.

So, what’s the actual procedure like?

Well, I had to be NPO (or nothing by mouth) for six hours prior to my procedure. Not hard because I don’t eat anyway. I was allowed to take my medications with a small sip of water. I arrived at the hospital at 11:30 a.m. for my 1 p.m. procedure. I checked in and was taken to a room on the one-day surgery unit. I changed into a gown and got to keep my pajama bottoms on. My vitals were taken and a brief health history was taken by a nurse. She started an IV and gave me some normal saline thru it. I was nauseated so I requested and got 8 mg IV Zofran, which helped. She spent a good half an hour doing a lot of teaching about what to expect from the procedure, how to care for the incision afterward and what to expect long term with my port.

Eventually, 1 p.m. rolled around and I took a wheelchair ride down to Interventional  Radiology (IR), where the port was going to be placed. The port is placed by an interventional radiologist as it’s done under floroscopy (or live x-ray) so he can see where he’s going and make sure that it’s in the correct part of your body.

If you’ve ever been in an OR room, you know how cold they are – well, rooms in IR are just the same, freezing! They had me climb up on the table under the fluoroscope and lay down. The nurses covered me with warm blankets and hooked a blower that blew hot air under them at my feet to keep me warm. My arms were each placed on arm boards at my sides and a blood pressure cuff was applied to one arm and a little sensor to one of my fingers on the other to read my pulse and oxygen saturation. They hooked me up to 2L oxygen by nasal canuala. They did a quick ultrasound of my right chest to make sure my anatomy looked the way it should and the port would fit there. I had to wait a little bit on the table as the IR doctor was in another consultation, but the nurses chatted with me and kept me entertained. It helped that I used to work at that hospital and knew a lot of them, so it was fun catching up!

Then the IR doctor came in. The scrub nurse unbuttoned my gown and exposed my right chest from my waist up. She scrubbed the area he was going to be working on with a disinfectant soap that left my skin colored orange. She draped my chest area, leaving a small window for me to look out of to the left. Once the disinfectant dried, they were ready to start.

Chest ports are done under what is called “conscious sedation” meaning that you are awake for the procedure but not supposed to have much memory of the actual event. However, this never seems to work with me. I’ve had it twice and had the same experience twice – I remembered everything and didn’t find the meds relaxed me very much at all.

He ordered 1 mg of Versed (to relax you and make you forgetful) and 50 mcg of Fentanyl (for pain) prior to starting the procedure. He let me know he was going to be injecting my chest with two syringes of lidocaine to numb the area prior to making the incisions. These stung quite a bit as he injected them and I asked if the meds they gave me through my IV were  supposed to make me feel any different and told them I still felt the same. He asked for another 1 mg of Versed. I didn’t notice any difference after getting that one either.

He waited a few minutes to let the lidocaine make my chest nice and numb, then made his incisions and inserted the port. I felt a lot of tugging and pressure, but no pain. It took only a matter of minutes. They took some x-rays to make sure everything was in the right spot and accessed the port with a Huber needle (a special needle designed for ports) and flushed it to make sure it worked. He told me it was in and working and he was just suturing me back up. The whole thing took maybe 20 minutes from start to finish.

The nurses cleaned me back up, put a bandage over the stitches, which had to stay on for 24 hours, and a dressing over the port, which they left accessed at my request since I was getting fluids the next day. I returned to my hospital room and they monitored my vitals for an hour and gave me additional fluids at my request. I was discharged an hour later in the care of my husband as they will not let you drive for 24 hours after receiving conscious sedation.

Recovery

I was told I could expect some pain and discomfort for the next two weeks and I could take Tylenol or Motrin (ibuprofen) for the pain. I had Percocet at home for pain already and was glad I did because I feel like I needed it the first two days – it was really painful and sore. I was encouraged to ice it the first 24-48 hours, which I did and it felt really good. After that, it was okay to use heat. I had my port placed Thursday afternoon and Sunday evening I covered the steri-strips with a clear dressing and took a hot shower, which also felt really good on the tender area.

I have a weight restriction of 10 pounds for the next two weeks, so that means I cannot pick up Ella, my 2 year old daughter. That has been difficult and frustrating for both her and I. She’s going to daycare during the day as I cannot take care of her while my husband works. I had read that I might not be able to lift my hand above my head or that washing my hair might be painful, but I haven’t experienced that. I have pretty good range of motion without much discomfort. I can sleep on that side just fine too. It is sore if I lift an object with my right hand or wear my purse strap over that shoulder. I’ve also noticed all of my bra straps rub on the incision and that is rather painful, so I’ve been living in camisole tops and they don’t bother it too much. I’m sure this will be better when the incisions heal in a few weeks.

I went to my appointment for fluids the next day and they removed the dressing, de-accessed my port and left it open to air with the steri-strips to heal for a few days.

In the future

My GI doctor told me my insurance had approved home health care, so I am waiting for them to contact me and bring me my own supplies so I can do my IV infusions at home. I’ve been getting 1 liter of D5/NS with 8 mg IV Zofran everyday and it really helps the symptoms of my gastroparesis and has caused me to not lose weight as rapidly as I was before. I’m looking forward to not having to drive myself to the hospital everyday for my infusions and getting them in the comfort of my own bed, when I feel I need them instead of when it works best for me to be gone for an hour and half.

I did have an appointment last Friday with the GI specialists at Froedtert and the Medical College of Wisconsin. It did not go very well at all and I left feeling defeated and discouraged. I won’t be going back there. I’m calling my local GI doctor today and asking him to reconsider treating my case himself or referring me to another doctor for a third opinion. I do have the option of going to the Mayo Clinic for treatment, but it’s a long drive and truthfully, I’m afraid it’s going to turn out like my Froedtert experience. Apparently, this is not uncommon in gastroparesis, as it’s a rare condition and a not very understood one. I was mad and upset for a few days, but now I’m more determined then ever to find the care I need to help me feel better as quickly as possible. Friday was a setback, but I’ll continue to move forward and be hopeful.

This pic above is the first picture I’ve posted following my 20+ pound weight loss since I got ill. I think I should put this one and my photo on my About page side by side and compare the two, just for fun. I definitely looked a lot more healthy back then!

 

Save

Save

Save

Save

Save

Save

Save

Save

6 Comments

  • roxy

    this is super informative! thanks for sharing!

    • Jen

      Thank you – hope it helped!

  • hanna

    Well hopefully this will really help in treating you! You’ve gotta do what you’ve gotta do right!

    • Jen

      Thank you, yes, it’s been a huge help already!

  • rachel

    Girl, I’ve been thinking of you regularly. I’m glad you had this procedure but I’m still so sorry this is something you’re dealing with. That being said, I’m a total nerd for the medical descriptions and terminology. 😛

    • Jen

      Thank you for the kind thoughts! I’m all about sharing my journey in the hopes it helps someone else going thru something similar! Thanks for reading!

LEAVE A COMMENT