Dear All:
First, thank you all (and especially Durga for starting this post)-- SO incredibly much for all your concern. This is the first chance I’ve had in almost a week to get online-- and I found so many hugs, messages (which I promise I will get to as quickly as I can) and this post checking up on me. I was so touched by all of your caring that I couldn’t stop crying (really, really good tears). You are all incredible people-- and I thank you so much for reaching out.
On the 29th, around 2:00AM-- a few hours after hooking up my TPN and going to sleep, I woke up with my body almost rigid and totally freezing. At first I just tried to put on a robe, extra slippers, and 3 more blankets (in addition to the horrible pain, I had been having sweats and chills and even occasional low-grade fevers, which the docs just thought was the CP)-- and nothing helped at all. After about 15 minutes, I finally decided to check my temp-- and over the next few minutes checking it-- since I didn’t believe the reading of 102+ it went up to 103.7 degrees (I never run high fevers-- only once in childhood). I don’t remember a whole lot after that except that I called the home care nurse who said to get to a hospital right away. Since that was the last thing I wanted to do ever again-- no matter what (unless it was “life-threatening”)-- I probably waited way too long. I called my boyfriend for a ride (I should have called an ambulance, in hindsight)-- and got to the ER within about a half hour-- in a winter robe, slippers, and extra blankets. Right away they took my temp and vitals-- the fever was still that high (or even higher-- I don’t know for sure) and I found out my pulse was at 180 bpm and my blood pressure was falling quickly. They told me to take off all the layers-- that I was burning up, even though I was shivering cold-- and that I was septic and in shock. They started IV antibiotics right away-- and thankfully I had a Mediport, because the stuff they needed to run needed a central/peripheral line-- and things started calming down a little. They transferred me to the one local hospital that I’ve liked over the past few years-- on an oncology unit (they really get the port/pain/CP stuff and are so nice compared to other units), but I don’t even remember the ambulance ride or going there or anything at all. I’ve been there since then on a bunch of different antibiotics IV until the blood cultures could narrow it down and the fever had gone down and my pressure was staying up, etc. I was discharged today and am home now on both TPN and IV anti-bacterial antibiotics. They are still concerned that the infection isn’t just in my blood but in my port, but there was no way to know for sure… so the infectious disease docs told me to have the IV antibiotics for a week-- and when I stop, I’ll either be okay in this respect, or the sepsis/shock will return and I will need to rush back to the hospital, do this all again, and also have my port pulled and another one put in the other side of my chest once the infection cleared. For now, I’m saved from another surgery.
It’s been a pretty scary experience and week-- and I’m just so glad to be home and back online with you guys!! I can’t tell you how much you’ve all just done for me-- and I’ll be sending hugs and messages back to everyone. Hopefully now I “just” have the CP-- my levels had briefly gone down, but as of today were back up a bit. They’re letting me try some liquids and soft solids and will watch the labs-- but mostly my GI doc said to go by how I feel. The Fentanyl use went down with a higher dose at the hospital, so hopefully I can continue that (still only 400mg, but much better than 200!).
You’re all so awesome-- Thanks again for everything!!!
I hope you’re all having some pain relief and nothing as crazy as this stuff. I also hope that this will help anyone who has a central/peripheral line-- so if you get “rigors” and symptoms like I did, get help fast. They were pretty clear that I went into shock and could have died. I hate the CP and living this way–but I sure want to live-- and won’t stop planning to get better somehow, one day. I hope the same for all of you.
Lotsa hugs and everything good back to you,
Lisa
