A Month In

I’ve been in hospital for well over a month now. I am feeling much, much better than I have in a long time. I suspect I may have been fighting this since late winter. I believe the infection started where a nurse had accidentally gone to the side of the port, not into it, twice in a row. Ironically, she did it while a charge nurse was trying to write out all of the steps to one of my access changes, involving changing the needle that accesses my port, the dressing and so forth. (Trying to write that out is almost impossible, an excersise in pedanticism). There’s no way to be 100% certain, but I suspect that there was an infection behind the port, brewing quietly the whole time.

I know my family and I do things a little differently than most, but I hadn’t realized how many small details have to be controlled in order to get me through the day. Even something as simple as a plugged toilet becomes a challenge- I have to use the loo across the hall. Last night, somebody had used ‘room spray’ right before I went in. I had my mask on loosely, didn’t tighten it fast enough, and I had a full on anaphylactic reaction. That said, the staff here (with one or two exceptions) have been so accommodating. They try really hard to help meet my needs and keep me healthy. We joked yesterday that it’s like trying to do anything when you have an infant in tow- you can’t just pick em up and go out the door. There’s food, clothes, etc that need to be sorted out, you can’t go out in the middle of their nap, can’t put off a feed for a couple of hours, etc., etc. Nothing is simple.

A few things like managing certain meds has been difficult- for a while there the doctors didn’t want me to have control of any epi. They realized the fallacy of that relatively quickly, and it’s now bedside all the time. They accidentally put it in the fridge instead of the freezer, but I think it’ll last until I’m outta here. It should be early in the week. (Yeah!!). ID (infectious diseases) has said that tomorrow I will have been on the antibiotics long enough, the risk of all these reactions is greater than the bacteria returning.

The food I’ve been getting was okay. It was hard to really cover my food, and one week I lived on brownies that I bought at the coffee shop. I can’t really expect them to get it all right- there are just too many details to communicate. They have tried very hard, and last week we added some variety, thank heaven. The dietician and I went through and pulled out all the things I could probably tolerate (dairy is slowly returning to the list- whew!). The kitchen hasn’t quite pulled it off yet…

 

I can eat most of it, but a bit of redistribution is required. Good thing I had food left to make it through lunch! 😃

Not much else to report, I’m astonished at how long I’ve been here, and how little of it I remember. I’ve also noted how quickly I get upset by a doc disagreeing with me, or changing a med, or, well, pretty much anything. The docs and nurses here listen to my concerns, and change their plans accordingly, but I’ve already jumped to ‘what are they going to do this time?’. Says a lot about how I’ve been treated in the past. It’s not unreasonable that I mentally jump there on a hair trigger, given how many times I’ve had to re-fight the same battle, but it it’s angst I don’t need. I’m getting better at not bounding ahead 20 steps, and just allowing docs time to think it through.

I have a feeling I may have a small battle on my hands to get a new centrally placed line to replace the port. I currently have a PICC in my arm, it should be replaced with a tunneled Hickman or groshong. (Irrelevant details to many of u, im sure!). The docs are happy to leave the PICC, but I’m not. They’re much higher risk for infection, and a huge pain in the rear end, it’s placed just down the arm from the armpit, on the inside of the arm. It interferes with clothing so much more, and I can’t reach it with both hands- (I’m flexible, but not quite THAT flexible). The vascular access team knew we could have this issue, and gave me their pager numbers, telling me “Don’t leave here without getting that line changed!”, so I’ve got champions to help me fight. Besides, they are learning that when there is a difference of opinion, I’m usually right; or it’s immaterial to them, but important to me, so it’s just easier to agree.

Several interesting incidents have occurred with other local MCAS patients in the last little bit. I think we may have reached a tipping point, but that’s a story for another day. In the meantime, I have a bit of space to focus on healing, maximizing my capacity and caring for others in my life. Hubby started a new job the day I was admitted, talk about trial by fire! He’s risen to the challenge, but he didn’t need the extra stress and work of my being in hospital. He must be exhausted, and very ready for a bit of relief.  The kids are off school, and it would be amazing to be able to do a few things with them. I might even be able to go to Toronto with the kids for a visit…

How wonderful to imagine a future again.

2 thoughts on “A Month In


  1. Karen..I’m so happy to hear/read you’re on the way to recovery.
    Yes, the diet issue can be challenging. Computer spits out limited menus as evidenced by my month of cod loins and white rice🙄
    It will be a slow return to life when you get home. Listen to your body.

    I’m dumfounded by the fact you’ve been doing all your own CDI and supplies. Explore with your physicians the idea of..yes a new port and a new start to CDI thru Medical Daycare.
    My pharmacy makes up the bags in one of those…..rooms. (Can’t think of word). I pick them up at medical daycare plus hydration supplies. They also do port care 2xweek.
    It’s a safety concern. I’m sure you have the papers written that your doc could reference.

    It all sounds reasonably positive now that they are understanding the complexity of your illness.

    Sending love and support..💕🙏💕


    1. I gotta say, I’d take mac a cheese every dinner for a month over cod loins and rice… 🤢.

      I should ask my pharmacy if they can do the bags in a sterile compounding lab (I know…there’s a word for those rooms- i can’t remember it either. I miss my brain sometimes…). I’m afraid my hospital stay didn’t end well, I was discharged AMA with respect to my PICC, they were going to pull it and not replace it. Apparently I didn’t need it because I don’t have MCAS, and it’s not an approved treatment for MCAS in any case. When I went to Toronto it was out by 9 cm…I was told it was just fine at UBC before I left (no it wasn’t…). The nurses at the St Mike’s ER (the hospital where Vadas works) took one look and said ‘We aren’t changing that dressing, we should take it out NOW, but we get that you’re not taking that out until there’s a replacement. Leave it in overnight, we’ll give u a new PICC tomorrow.’ And they did. Now, that wasn’t so hard, was it!?! Arggghhhh….
      So VGH started and ended poorly, but in between was pretty good. My care goes well until some old boy calls up his buddies and everything gets blasted by the willful ignorance of the local’experts’.

      So yes, I ‘should’ be having those things arranged through the proper channels, but I still haven’t quite figured out how to make that happen. Reportedly, Dr Arseneau said a port wasn’t worth the risk, that I don’t need the CDI (which makes NO sense, considering I helped him set up another patient on it… I haven’t spoken directly to him about it, something isn’t connecting). And onward we go.

Are you still here? Start a discussion!