Here we are again. Infection is back. This is why I’ve pretty much given up on being excited when the doctors give me the “all clear, you’re doing great!” I’m not even angry. Just… numb. And exhausted. And sad. So starting tomorrow, I’m back on the IV antibiotic regime for at least a couple more weeks. When my nurse and dr saw me yesterday and asked how my legs were looking I admitted something I’d refused to say out loud to ANYONE. That they were looking bad and infected again with new ulcers popping up. And I also found out my labs showed my WBC count, CRP, SED rate and kidneys are all super high again, after finally getting down to normal a couple weeks ago. They said “omg every time we take you off the iv antibiotics this happens!” I know. We made it a week and a half. My Infectious Disease doctor leaned into the wall, upset and quiet. Then she said any way we go has major risks. Not treating it has obvious consequences but putting me back on IV antibiotics with how long I’ve been on them is dangerous and risky because I’m now at high risk of developing severe complications. But we chose to choose the devil we know and treat it but keep an extremely close eye on my symptoms and my labs. I honestly don’t even know what else to say about this. I’ve been on different regimens of IV antibiotics since June and it now feels never ending. Like this is just the way it’s going to be, which is devastating when all I want is my life and future back. But I’m grateful to have a team that refuses to give up on me and throw their hands up, like so many have done in the past. Without that, God only knows. Because of this, we are opening back up the meal train so to see how you can participate and help, go to
https://www.mealtrain.com/trains/9el14l.
This next part will be long as I’ve had a TON of doctors appointments with specialists in the past two weeks, both here and in Seattle where my mom and I spent a couple days going to back to back doc appointments, so I’m going to break it down by specialty:
Infectious Disease @ Harborview: not much to report here as they thought my ID doc, Dr Spiess, at home is doing a great job and there’s not much they’d do differently and they could tell from her notes and myself that we make a great team so I should stick with her. And informed me I have quite a bit of lymphedema In my legs (swelling due to lymphatic drainage that is t able to drain). The only thing is they want to extend the 10 day decolonization that Tyler and I had already completed, to try and remove the MRSE from me and the things that I touch (like a HUG or sharing a blanket - get your head out of the gutter 😂). So they want us to do a SIX MONTH decolonization protocol, five days in a row each month where we have to do a special shower daily with chlorehexidine and bleach, swab our noses and moist parts of the body with a medicated ointment and washing all linens, clothing and such every other day.
Vascular Surgeon @ Harborview: I had ultrasounds of my legs, looking for additional arterial problems that might occur with my known venous disease, but luckily I was clear. I then saw the surgeon but unfortunately I mistakenly got booked with the arterial specialist when I needed the venous specialist, so I’ve been referred to his colleague. They’re concerned that part of the problem that’s causing the ulcers, infection and lymphedema is that 1) the stroke I had when I was 18 might have permanently damaged my veins and 2) that I might have DVT clots (deep vein thrombosis) in my legs. So they’ve ordered a three hour test to look into this, where I’ll have blood pressure cuffs on all my limbs (and even teeny tiny blood pressure cuffs on my big toes!!!) with ultrasounds being done on my legs while I’m in different positions and even walking on a treadmill. This is scheduled for Monday October 23 and they’re trying to get me into see the surgeon on the same day so we can do it all in one trip again. I was kinda frustrated to walk out without answers and surgery booked, but am thankful they’re looking into everything to make sure they’re treating it correctly.
Endocrinologist - Bellingham: Lastly I saw my new endocrinologist, Dr Clarke, just to check in on my Addison’s Disease. She’s actually wondering if instead of Addison’s if I actually have Central Adrenal Insufficiency where instead of my adrenal glands being damaged and not putting out the hormones I need, that instead it’s my pituitary gland damaged/diseased (potentially because it’s too concerned about my other health stuff so has shut down my pituitary because it sees it “not as important” to be putting out a whole host of hormones and such which would also fit re estrogen etc you’ll find out about below and since I was diagnosed years ago with Hypothalmic Ammeonhoria) and causing problems. So she’s doing a whole new work up of tests to find out and depending on the outcome may increase my daily hydrocortisone so instead of just morning and afternoon, I would also get a dose in the evening to help with nausea/fatigue in evening and to better help when I first wake up in the morning. She also prescribed steroid injectables for emergencies or if I’m too nauseated/throwing up to be able to keep down the pills. Also she noticed on last tests that not only were my testosterone levels exceedingly low, but even bigger that my estrogen levels were undetectable! So she’s running new tests to see where they’re at now. The thing is though that if these levels are still this low we would have a dilemma in that she would need/want to put me on estrogen but that doing so would carry a lot of risk to the point of probably not being safe enough to even try it due to my history of stroke and now possibly DVT’s in my legs as well, so she’d have to work closely with Vascular to find out if there’s a way ti safely treat it.
Ok we did it! If you read this far, congrats you’re now officially updated! Because I’m going back on the IV antibiotics and have the infection back, I’m wiped out 24/7 and due to work Ty is busy almost 24/7 so we are going to extend the Meal Train my bestieLaura Loween so kindly set up for us, as it was SO EXTREMELY helpful to have people bring food, send gift cards for restaurants/delivery or donating money to help with ready made meals, medical expenses & travel/lodging expenses for these trips to Seattle so I can see my team at UW Harborview. I also want to take a minute to thank my mom Diana Gentry Slyman for getting over her fear of driving in Seattle so she could take me down to Harborview to support me and advocate for me. I could NOT have done it without her by my side, physically or mentally. It reminded us of all the prior experiences of the two of us in Seattle, Portland, Toledo or more frequently New York. Not there for fun reasons, but we find and do little things to make it feel more like a vacay than the reality - like renting a movie and eating at a Lebanese restaurant (I’m 1/4 Lebanese so it’s childhood comfort food). Of course I want to thank Tyler Anderson too for being a great partner throughout this. And thanking Taylor Swift for being Taylor Swift because it’s not an understatement to say that she had a HUGE impact on my life and that her music is often what gets me thru these maddening relapse moments or nerves headed to Harborview to take my mind off the fact I’m going to be back in the place I died and was brought back. One exciting thing that I’m doing just to try and boost my spirits is dressing up in TS gear to go see her movie concert at the theatre on Sunday - so that for three hours I can not think about all these life and death matters! And lastly thanks to all of you guys for your support whether it’s reading this, praying/sending healing thoughts, bringing food or donating to medical expenses. We thank you and love you!
💜Laura
PS here are some pics from our time at Harborview! Best hospital view EVER!
