I have been meaning to share with my friends and family how my port/cath surgery went, how my summer has been and how I am doing now. As I am sure you all know by now, sharing and writing helps me cope with some things, among the many other strategies I have for coping.
Before I get into how my surgery went and how I am doing now--if you do not know what a port/cath is and why I specifically need it, here is a link to the article that explains that and more.
Now that it has been almost four months since my port/cath surgery, I have finally put all my thoughts and stories together to share. Don’t be afraid to ask questions. Thank you for your continued love and support.
On Thursday, May 6, 2021, my mom came to my apartment after I got home from my work visit. My younger brother, Taylor, who was also my roommate at that time, made delicious tater tot hot dish for us. Mom had not been to our place since last summer because of COVID and her busy schedule. Taylor and I sat at our small dining room table with our mom and had a nice family dinner--with half our family. We ate good food and talked the entire time. It was so nice not to have any distractions and that it was just the three of us having adult conversations--no arguing and no messing around. We had a great conversation, I was probably annoyed with Taylor for nothing but a moment.
My high school friend Anissa and her boyfriend Thomas (who are now my roommates) arrived as we were finishing our dinner. Thomas was clearly exhausted as he went straight to the bathroom and then came back and laid on our bed “couch” in the living room. Not even saying hi but just listening to our conversation uninterrupted by his exhaustion. Pretty sure he fell asleep, I understood his exhaustion. Later that evening, I took a bath to relax and got my hair braided. It was lovely to have so much support from my loved ones around me. It helped me feel less alone and scared. I felt supported but still nervous.
On Friday, May 7, 2021, my port/cath surgery was at 9AM but I had to be there at like 7:30AM for prep. I basically rolled out of bed, used the bathroom, and my mom drove me. It is not like I could enjoy a cappuccino or some breakfast before I left. I could only bring one person with me so of course I brought my mom.
Once I was called back for pre-op, I was given a few tests and they checked my vitals. They gave me my last peripheral IV access for hopefully a while. That was something to celebrate amidst my anxiety, as you can see!
I sat in the pre-op room talking to my mom and looking forward to the drugs and expected to be knocked out not to remember a thing. As I heard many horror stories of people being awake during the surgery, being in pain and feeling tugging and pulling during the procedure. But I tried not to think about that, especially when I know I am a light-weight when it comes to drugs and alcohol.
As many of my readers are aware, I am a person that likes to ask questions, research, and speak to others about their experiences. That is exactly what I did. I am a part of many Facebook POTs/Dysautonomia support groups and asked a few questions about why they decided to get a port/cath, how it went for them, what side effects, how much pain they had, if it was worth it, and basically just sharing their overall experience of having a port/cath. I received many responses with positive and negative experiences, as expected. I read some horrifying stories of it going wrong in many different ways. But what helped me not worry so much about those stories (that fed my anxiety) was that there were much more positive stories of success, people having less symptoms, and overall--it being worth it for them.
When I was wheeled into the OR, the first person I met was an RN named Amy and I was like my mom's name is Amy and she is an RN too! Everyone in the OR were friendly and fun professionals. They helped me feel safe and taken care of, as they asked if I needed anything and if I was comfortable. I told them I was comfortable as I could be and could not see much without my glasses, so they all looked like a bunch of blurs. They gave me the knock out drugs without telling me and then told me they were going to strap my arms down so I wouldn’t help with surgery. Then I started to feel the knock out drugs kick in. Instead of ringing in my ears that I have experienced many times before when I am about to pass out, I got very distorted noises that sounded like spacecraft or my idea of that. The nurse asked me how I was feeling and I told her that I was hearing spacecraft, then I passed out. That is all I remember.
Before I knew it, I was awake in the recovery room telling some nurse about my TEDx Talk and that I was feeling fine with no pain yet. I asked where my mom was and if they could bring her in as I needed her but was super chill at the same time. As the nurse left to get my mom, that is when my body started to catch up to the trauma that it had just been through. My body started shaking and I was having severe body tremors. I have had them before with my POTs but nothing like this in a long time, so it was something I was familiar with but was still uncomfortable and I wanted it to stop. My mom came into my room and held my hand as I was having tremors. The nurse brought me a warm blanket to help with my tremors. Even though I told her I was not cold. I told my mom what I could remember, which was not much. My body finally started to calm down as I talked with my mom and she helped me get to the bathroom. When I came back from the bathroom, my mom helped me get dressed and the nurse helped me get discharged. My mom left to get her vehicle at the pick up spot as the nurse with rad hair brought me to her by pushing me in a wheelchair, at this point I was still woozy and feeling no pain.
I got into the car and used the port pillow my Aunt Heather, so graciously made for me. Thank you, auntie Heather!
On our way to my apartment, I was able to help guide my mom to get back and I was starting to feel the great drugs lift from my body and mind. I was becoming more lucid and feeling more and more pain as the day went on. We were home before noon, as I was hoping. I came home to Anissa and Thomas. I was exhausted but could not sleep. We watched movies, TV shows and played games until the pain got worse.
Friday's pain was the worst after the medications from the hospital wore off. It hurt to move my body. It hurt to stand up, sit down, turn over while laying down--it basically hurt to do anything. I could feel more tugging and pulling from the catheter in my chest which starts at my port and goes over my collarbone, and down behind my heart. As the pain got worse, I could only try to relax and lay down without moving. I could only talk and watch shows with my mom and friends as I tried to stay still. I took pain medication throughout the day and put lidocaine cream around the right side of my neck and chest. I am sure anyone that has had any kind of operation knows how painful it can be to recover, and I only had a common/minor surgery.
This photo was taken at around 2:30PM on Friday as I wear my new soft/comfy pajamas I got from my lovely mother, uncovering my incisions that is freshly glued up after the mornings surgery. It is only starting to bruise and swell here. By the way, I lived in those PJs all weekend, thanks mom. #nofilter #nomakeup
On Saturday and Sunday, the pain was still horrible but much more tolerable than Friday. I was able to do more things but it still hurt to do everything but the swelling and bruising got worse. I was still taking pain medication and using lidocaine cream. I was still trying to rest as best I could, especially because I was not sleeping well at night. It was very uncomfortable to try to sleep and it still can be.
This photo was taken Sunday late-morning, two day's post-op. That weekend was very stressful/painful, I can tell as I look back at my facial expressions in these photos. I am glad I had my mom, friends and brother there to help me feel better. Do not know what I would do without them.
Over the weekend I had a few other friends and family visit, call or message me. It was wonderful to get all of that support. I don’t know what I would do without it. Kind words truly lifted me and my spirits up.
Monday came and I had said my goodbyes to my mom and friends. I was on my own (other than Taylor) and had to go back to work. I was still experiencing pain. It was still difficult to do things, I was trying my best to get used to the tugging and pulling from the catheter and the port. The port was trying its best to settle into a pocket in my chest under my skin.
Taylor, Thomas, Anissa, Me, and My Mom
Taylor, My Mom, and Me
As my first week with the port/cath went on, I still struggled to sleep, had pain and was trying to adjust to having a port/cath. I think I still am but it is slowly getting better.
Six days post-surgery, the rest of my glue fell off. It was supposed to come off on days 7-10. But my surgery incision looked to be healing very well. I still had concern though and was anxious about it.
Two weeks post-surgery, I got my first infusion on Friday, May 21, 2021. I go to the infusion center in MPLS, the same clinic and surgery center where I had my port/cath surgery, where I go for my cardiac device nurse appointments, and to see my cardiologist. It’s nice to go somewhere that is familiar. The first nurse I had was wonderful and so sweet, and I have had positive experiences with most of the nurses there. My first appointment I decided I wanted to get to know the nurses there since I knew I would be going there twice a week. The first nurse has been doing infusions as an RN for over thirty years. She said my incision looked very well when I told her that it had been two weeks. That made me feel a little better about it. My incision was not completely healed but mostly healed. The pain around and under my port was still there which made it painful to get stuck for the first time.
My first port access was a success but painful and I am glad I got my first infusion on a hot ass day. I was practically sweating when I came inside on that humid and hot day. The nurse suggested I put some lidocaine cream over my port an hour before I come to get infusions. Lidocaine cream has been a helpful tool that I use almost every time I get an infusion, I forget to put it on a lot. It takes about 15-20 minutes to prep me, and it takes an hour for the bag of IV saline fluids to go in me so the trip is almost two hours with driving and waiting added to that.
Here is a photo from my first port/cath accessed infusion. I also was able to take a video of the nurse accessing it because my mom wanted to see it done and I kind of wanted a video too. People ask questions and sometimes it is difficult to explain--a video is helpful.
Friday, June 25, 2021 is when I had my first port/cath complication during an infusion. I am sure many of my Facebook friends know about this if they saw my post the next day. Here is what I put on Facebook the next day as I was nervous, frustrated, and scared.
“I had my first port/cath complication on Friday morning as they were starting my infusion. The first nurse stuck the needle in my port a little too high to where I was getting blood return which is what is supposed to happen but when she pushed the saline in, it was burning and painful in my neck, chest where my cath runs through. The first nurse adjusted the needle to try again which was also painful. It didn’t work and she took the needle out.
The first nurse got a second nurse who was able to successfully hook me up to an IV as I had to lean back and push my chest up more. The nurses noticed it was hard in my port and when she stuck me there was much more blood return than the first time since that had already stuck me. But it worked and I had no more pain when the saline or IV fluids went in so I had my infusion and talked to my mom almost the entire time and tried to color.
During my entire infusion, it was difficult and painful to move because the needle hurt so bad in my chest until they took it out after the hour long infusion. I’m still feeling discomfort from that but have another Infusion Monday early afternoon…” So glad that has not happened again but some nurse seem to have trouble finding where to access it and sometimes need another nurse's help.
I have had one other complication that I did not tell many people because thankfully it ended up not being serious. One Friday morning a couple of weeks ago, I woke up with pain on the right side of my neck and shoulder, where my port/cath is. Later that morning is when the pain in my neck where my scar from the catheter started and it slowly crept up my neck throughout the day. It did not get much better the next day. I tried to massage my neck and shoulder, I used CBD oil and took pain pills. I messaged my cardiologist. A few days later my cardiologist's nurse messaged me back saying they would have someone from radiology call me. A radiologist did call me and said I could get a chest x-ray done but I told them the pain had gone away and I was on my way to an infusion. They said if it comes back I can get a chest x-ray to make sure everything is where it needs to be. My infusion went well and I did not have any problems. Now I know that if I do have pain again or some concern, I can get a chest x-ray to see if everything is in place.
During my infusions I usually listen to music, talk to family, read a book/magazine, make other phone calls, play games on my phone, or sometimes (if the wifi connection works) I get to watch a video or TV show on my phone. Sometimes, I am absolutely exhausted. I will turn the lights off and take a nap. The nurses are wonderful and bring me whatever I need including a warm blanket, a drink and a snack. I usually get some shortbread cookies and some juice. Going to use the bathroom is a bit of a bitch because I have to unplug my IV pump and walk with it to the bathroom through the hallway and sometimes have to wait for someone else to finish. One time I had a room with a bed and a bathroom, it was a great day--the ultimate privacy and comfort. That is probably my favorite room. The worst rooms are with just the chairs because they are so small and not as comfy as a bed.
The twice weekly infusions have been helping overall but I am still having flare ups. They maybe just don’t last as long or are not as severe depending on some of the causes, like heat makes everything worse. I have been using a cooling towel and that helps me cool off really well. I still feel tugging and pulling randomly from my port/cath. I also still have trouble sleeping. I also have to be aware of my surroundings/environment because I have accidentally hit things on my port/cath area and it hurt like hell. I was holding a baby at work and he slammed his head into my chest and hit my port. I stupidly ran into a door and let one close on me. My cats have walked and jumped on it. I am trying to be more aware of my port/cath area to protect it and myself. I do not plan on having any more complications. This fall I will start having weekly infusions. I found out last week that I will be getting my heart monitor taken out soon as the battery is low/dying.
Sorry this post is so long, but a lot has happened and I am glad I have this platform to share my experiences. Thank you for making it this far in my post and for all the love and support. #dysautonomia #pots #posturalorthostatictachycardiasyndrome #dysautonomiaawareness
