Hi! Melissa here in Jacksonville Florida. Diagnosed with PTC. Total thyroidectomy with neck dissection August 29.
WBS shows two new spots. I’m refusing RAI, do we wait and watch. I’m doing alright, but some days are so hard. Regret of surgery then feeling glad I did, but then regret again.
I would like to share my story. It’s a little long.
On August 29, I had a total thyroidectomy with neck dissection. One night stay in the hospital and I was sent home the next day. I had a JP drain that lasted longer than it should have.
The following week after surgery I developed what is called a chyle leak. It’s basically a lymphatic leak due to damage of lymph nodes. I was unable to have this diagnosed because of the storm we had threatening Florida. The doctors offices were closed. I was not told anything about what to look for that would be unusual. So on September 5th I got into the doctors and they knew exactly what it was. So then I started what was called the no fun diet, which is no fat. I get through the weekend started feeling a little rundown, and on September 9 the site where my JP drain was now hurting me. It was also red. So I went into the doctors that Monday on the 9th. The nurse practitioner that I saw stated that she didn’t think it was infected so she was going to call me in some antibiotics, they were never called in so then later on that night I called the on-call, and then that nurse practitioner called me in some antibiotics. But I was too ill and just decided to go to bed & take some Tylenol and hope for the best. I developed a fever, that 3:30 AM my fever got to 102. I took more Tylenol until my mom could take me to the doctors. Got to the doctors about 9 AM, they couldn’t see me until after two, so they said just go to the ER. So I went to the art and this is where turned for the worse. They had to admit me and started administering antibiotics right away. My neck was swollen, I felt miserable, could barely talk, and just felt like I was run over. Couple days past we found out I contacted staph at my JP drain site, and then later found out that it spread into my blood. Luckily I contracted the treatable kind of staph. So they put me on some heavy duty antibiotics that I’ve now been on since 10 September. I got to leave the hospital eight days later, my JP drain was removed. I’m now at home, with a 24 hour antibiotic drip. This will continue until the 27th of this month.
Let me first say that I am very grateful to the Lord that I contracted the treatable kind of staph. Because this could have been a lot worse.
I’d like to add a little tip. Because none of this was expected, I was looking for other signs of like calcium drops, issues because my thyroid was removed, mental changes, physical changes, I never expected to get an infection.
Here’s my suggestion for those of you who still have your thyroid but will be having it removed. After surgery I recommend that you have a low-fat diet. I only recommend this for at least three weeks after surgery. This will help with swelling, this will help if you happen to have any damage to your lymph system. I also recommend that you rest, don’t go out trying to do things, getting hot, and getting sweaty, exposing yourself to dirt and germs and cooties.
Give your body time to heal.
I don’t know if there’s anything I could’ve done to prevent myself from getting an infection. I could’ve gotten it from the hospital and it could’ve just taken a few days before it really took affect. I could’ve got it from some stranger sneezing out in public. I could’ve got it from myself.
I just wanted to share my story in case somebody else runs into the same thing. If you have a JP drain and you start out-putting milky looking liquid, please contact your doctor right away. If you have any pus looking stuff coming out of your drain contact your doctor immediately. If you develop a fever contact your doctor immediately. I was passed my 10 day mark, but I should’ve been
smarter. I am very fortunate to have had a very small amount of staph in my bloodstream & to have caught it early.
This has been a very scary, hard & trying couple of months on myself and my family! I am giving it to God to continue to get me through this.
I will come out being stronger and wiser!
Thank you for reading.