Not a course for alarm, apparently...

 So this afternoon, I have switched from the serosanguineous amber-color discharge from my leg to purely blood.

I called after-hours to my leg specialist, only once again to have my call returned by the most useless PA in their office that reads from the same script anytime I've called during the weekend with a concern and told to call back on Tuesday because apparently it's not an emergency.

To provide a bit of background, the past 3-4 days I have been sleeping most of the day and night. I'm not sure how much of this is due my untreated anemia (recently my nephrologist called me stating it is getting low enough something must be done), drinking BulletProof Collagen powder with MCT (to supplement more protein and collagen into my diet), or my ongoing infection regimen and drainage from a segment of 2 cm that exposes my tibia bone to the outside on one side and skin on the other. In my mind, there has been very little follow-through on the point of my limb specialist, other than to call in every 3-4 days to report drainage output. It has gotten as low as 15 mL, but now with the blood it will probably exceed 50 mL per day. The drain has been left in place (in addition to not treating the open wound for the past three weeks).

On Monday, I am going to follow up with my nephrologist to remind him to send in the order for the IV iron infusions, which when ordered will be 300 mg of IV iron once every three days for a couple weeks to treat the anemia. On Tuesday, aside from calling down to my leg specialist (unless I hear from them sooner), I will be meeting with a new infectious disease specialist. There is a high likelihood that I'll be firing/switching away from my infectious disease specialist of the past 11 years. My reasoning for this, among a myriad of other poor experiences is that I presented to her around the second week of December with non-stop drainage from three separate wounds on my leg. I asked if she wanted to look at the wounds and she refused. When I told her I was experiencing concurrent low-grade oscillating fever, she could sense I had concerns about this being the result of an infection. She allayed my fears by telling me that it was simply impossible for me to have an infection while on antibiotics. During my ultimate follow-up surgery just before Christmas, a week afterwards, we discovered I had been experiencing untreated e. coli infection for that period and my antibiotic was switched.

Since then, other than reporting output of my drain to my leg specialist, every tele-health visit with my infectious disease provider has gone no where. On the day of the Marshall Fires started in Louisville, is when she broke the news about my cultures for that surgery coming back with e. coli, and she simply followed-up with this bad news with "I know this sucks, it will mean another 4 weeks of antibiotics... and if we're feeling 'nervous about things', possibly followed by another 1-2 week course of orals" before discontinuing the antibiotics altogether.

Along with dealing with all of this, including more leg pain, has been issues with my PICC dressing site. It is inflamed and could easily become a source of infection itself, given I'm allergic to adhesives. The worst of these contributors is the StatLock that tethers my PICC to my arm. There is always this yellow discharge around that area and little has been done to remedy it. Finally, I called this morning to not only have the dressing changed out, AGAIN, but also to eliminate the StatLock altogether and replace its anchoring with Steri-Strips. While I think I have found two of the best dressings possible, the IV-3000 and 3M Tagaderm, my skin is still irritated and forming a rash, but ultimately less irritated in the long run. If the edges of the dressing are coming up, the 3M cotton tape is more tolerable than the plastic tape.

So to make a long story short, I don't know what's on the horizon and I have been left out of the loop on the reasoning, other than my limb specialist simply stating: "we don't want to remove the drain too early, otherwise the incision won't heal shut... I am trying to keep you out of the operating room as much as possible." While I understand this reasoning, there has been very little in the way of improvement (other than switching to the antibiotics to treat the previously untreated e. coli); while the output has decreased some, that portion of my incision refuses to heal shut as well as now blood coming out of my drain... all the while I'm teetering on the edge of severe anemia,

Given we are supposed to be planning on discontinuing all antibiotics within a 3 week minimum (5 week maximum timeframe - and yes by now the antibiotics on original course were to be discontinued over a week ago) means that things are in a perpetual state of limbo. Both providers are pointing the finger at one another. While my limb specialist has been more pro-active in her approach to things, right now I think she is relying on feedback from my current infectious disease doctor. I'm sure, given that she recalls all of the mis-steps that have brought us to this point, she really doesn't know what to do and my limb specialist all the more doesn't know what to do other than proceed with the watch and wait sort of thing.

So the bottom-line is I feel like there is very little support for me right now. I realize switching infectious disease doctors in the middle of this process presents its own set of risks, but ultimately might be the best decision in the long run, given her very "hands off", "don't listen to the patients' concerns" kind of attitude. Moreover, she was not apologetic about the untreated infection of three weeks (possibly longer) as a mis-step, but only made manifest in the words: "I was meaning to get in touch with you, but wanted to wait to tell you the next day during your planned appointment, but I'm not sure if you heard, but you have an e. coli infection and I want to switch you to a different antibiotic. I know this sucks. Do you think you could drive down to the infusion center today? I set up an appointment 1.5 hours from now and it's important that you get it right away." That's a lot to throw on a patient given I have been providing her warning signs. Even the warning sign of me bleeding out of my drain I have been told is something that can wait until Tuesday and that it's an incidental finding and not an emergency from my leg specialist's on-call PA, Julia, who is complete shit anytime I have reached her during the weekend. So unhelpful, especially when she talks me out of being seeing in the emergency room, either.

I'm tired and I don't know how much more of this I can handle. I'm not being heard and I'm the one actively dealing with it and it feels often times like there is zero help. I'm even expected to source the supplies to change out my leg drain by myself and also expected to change the drain out myself. This doesn't seem to be in normal course to me. The longer we put off another surgery before they put my new endoprosthesis in, the more we risk having a brand-new incision that will already experience difficulty with healing. This is an element that I warned my limb specialist about before the first surgery was my anemia as a co-morbidity going into this. Her response was that, yes I am anemic, but not that anemic... whatever the fuck that means. Now my nephrologist is saying from my most recent bloodwork it is a concern and he would send orders to BCH foothills, but I call today to find out they haven't been sent yet. Then of course, finally, my concerns about my PICC site have been ignored up until today, when the nurse that came by actually changed things without the StatLock for the first time. They tend to get pissy about changing it out more than once per week, per risk of infection. But they should also be taking a look into the viewing window of the PICC site and see there is a build up of yellow-discharge... which in itself could be a source of infection, especially when they decide to discontinue antibiotics, there will be a period of likely 2-4 weeks where it will remain in place, before awaiting culture results. Finally, the icing on the cake is my current infectious disease doctor's plan is that I won't receive any antibiotic regimen after my final surgery to put the new endoprosthesis in. If I develop pain, or infection, then I guess I'll just have to start over, have my leg fused (again) , have a new PICC line put in (again) and go through another 16 weeks of this (at a minimum, AGAIN).

That doesn't begin to mention the fact that I already went through 6 months of treatment before this. 4 surgeries last year, two from the failed one-stage revision, and 2 this year from the fusion 2-stage revision that doesn't appear to be working. I honestly wonder if the next time I talk with my leg specialist if she doesn't break the news to me that she's going to recommend having my leg amputated, or at the very least discuss my case with a plastic surgeon so obtain further skin grafts (auto-grafts) for my leg. They have been cutting into the same scar tissue for all 12 surgeries to date, which probably in addition to the anemia explains why I'm not healing.

But something needs to be figured out and again I don't know how much longer any sane person could go through this. If it wasn't for my Mom being around and an understanding employer, things would be dark and I wouldn't know how to go on like this.