Swells for hours
My Constant ❤️
Continuous pokes for cultures and blood work
Second IV line for saline fell out due to scarring from past IV’s
Midodrine eval- they considered a success 😂😭
The first antibiotic
Removing the PICC
The worst of it 😓
My best friend ❤️
Apparently, I had the worst bacteria for sepsis, with not just one bacteria set, but 2. The one that’s well known is Pseudomonas aeruginosa. It’s one of the most aggressive infections and could be fatal in people who are already very sick, aka me 😳. They said if I had waited even just a day to go to the hospital I probably would’ve been dead or near death in the ICU. The other bacteria is called enterobacter cloacae which can be very resistant to treatment but in my case, the antibiotic I’m on is seemingly attacking the infections.
At first, all of my treatment in the ER and on the floor when I was admitted was good. I was getting continuous IV saline and dilaudid for pain which helped the initial recovery immensely. I felt like hell and to be honest I don’t remember much of it, since my fever was between 100-103.8, approaching 104. They packed me with ice bags all over my body since I couldn’t take the fever reducing meds. Fortunately the fever broke a couple days later but the pain and recovery is probably going to take some time, given I was severely ill before all of this mess.
I never wanted that PICC. It actually was placed as a temporary measure for vein access (since mine are all scarred) when I was getting transferred to the main hospital from another Brigham facility back in January. I was suppose to be getting a port. After transfer they decided not to do the port as inpatient- afraid of infection risk. Irony🙄 they discharged me without any orders for it to be taken care by the visiting nurses and we had to work hard to figure out the paper trail to get it taken care of.
I was suppose to have a tunneled catheter this past spring but again, another block, with them saying that since I had the PICC line, I didn’t need a tunneled cath, even though I told them that the PICC had a higher infection rate and was probably going to get infected if I didn’t switch to another line soon. They were not interested in my opinion, and were more concerned about my “heart”saying I was too unstable to have surgery since I am tachycardic and have reactions…and they left the PICC in. I have since had 2 feeding tube exchange/replacement procedures and haven’t croaked once.
Fast forward to present day: the reason I even needed a central line is because of the complexity of my conditions. I cannot drink enough fluids by mouth or by tube, because of mast cell disease reactions, autonomic disorders (POTS) esophagus abnormalities, and severe GI conditions. If I’m not properly hydrated this leads to havoc- it makes the mast cell reactions much worse and more frequent, it speeds up my heart rate, makes my digestion slower, swells my GI system and all of this leads to swelling everywhere and then anaphylaxis. Mast cell and POTS/autonomic conditions work together. If one thing isn’t being taken care of, they both go nuts. It’s actually impossible for me to get down even the required amount of fluids for a normal person, never mind a POTS patient who most of the time needs double the amount of liquids and salt in their diet. gastroparesis (stomach paralysis) makes it very difficult for me to absorb meds, especially quick acting meds needed during allergic-like reactions and anaphylaxis, which is very frequent and a daily occurrence for me.
Since my PICC line was infected, the medical team is refusing to place another central line. Possibly never, all because of one doctor who won’t be named. I get that placing a new line when the infection is still present isn’t a good idea. It would become infected again if the antibiotics don’t get the time they need to clear the infection from the last line. But because of one doctor with a lot of reputation who thinks I wasn’t benefitting from hydration or the IV meds (I know😐🙄) they say no line for 2 whole months. Or ever because of my compromised immune system. They think placing a new line would lead to another infection because my body has already had one with a line so that means it makes it more likely the new one will get it too. For me, this changes Brad and I’s life. Negatively… It means many things…. This means I won’t be able to get IV meds at home (Benadryl and ranitidine) which prevent reactions from escalating to full blown anaphylaxis, I won’t get the necessary hydration I need to be even somewhat functional with my heart rate. The heart rate will become erratic (it already is because they are refusing to give me saline inpatient as well right now), my veins are too scarred for an infusion center and I’m mostly home bound any way and because of the dehydration the swelling will go up in my upper body and organs.
Pretty much- I’m screwed.
All because of a PICC line that wasn’t even suppose to be left in my arm in the first place. It’s funny…You think that Boston is one of the best cities in the world to go for medical care. And for the most part, it is. If you have something well known with good funding, cancer for instance, it’s good to live here. But for mast cell activation syndrome (MCAS)- no. Don’t ever come here. Turn around and run.
I’m so sick of being treated like my opinion doesn’t matter. Because now… I’m afraid I’ll be silenced whether I want to be or not.
Sepsis sucks. Surviving sepsis and getting treated like this sucks even more. It was already an uphill battle with reactions, with Brad not being able to work until we got a PCA. Now there’s this and we have no other options other than to possibly move hundreds of miles away to where I can get proper treatment. The challenge is getting me there alive.