Welp, at my ortho appointment yesterday, while I was there, he called the ID doc and they talked over the phone right then and there. Due to the location, with it being skin right over the plate, hardware is definitely involved, so they decided on the 6 week antibiotic routine.
I must admit, I am beyond terrified. The idea of something sitting in my chest, that close to my heart, capable of killing me if things go wrong I find more than a little disturbing. This is probably the most scared I've ever been about anything medically related in my entire life. Part of it is that I'm not "sick" in the sense of being laid up and off work and having nothing better to do than take care of this thing - no, I still have to show up to work, I still have to deal with my daily routines, and how the fuck am I supposed to do things like infusions in the middle of the day?!? Go sit on a toilet for an hour?!? THAT sounds nice and sanitary! [I really hope you read the dripping sarcasm going on here].
I'm terrified of needles to begin with, but after being in the military I learned to cope and get through it. I still cannot watch, and having someone poke and prod around I've literally been gripping my sheets not to punch them....while I'm guessing this will be better than dealing with that every day, I'm not seeing any other positives in this.
The plan is this for 6 weeks (god o god please don't let this get infected - with a 1 in 4 chance of it getting infected, a 30% chance of complications, I don't see the odds being in my favor when the reason I'm on it to begin with is due to an infection!), then, once this is done, give things a couple weeks to see if the infection re-emerges. Assuming it does, then we'll schedule hardware removal. Right now, basically, the whole point of this is trying to buy a couple more months of bone healing so there's less risk of re-fracturing the leg once hardware is removed. I think we're pretty much assuming it's going to have to come out...
Only "good" things (if you can call anything good at this point) is that I will be done with the antibiotics before I'm supposed to leave for Italy (barely), AND, I'll still have my hardware in at that time so mobility won't be an issue. Who knows how I'll be feeling though :/
Secondly, IF we have the luxury of a little leeway on hardware removal timelines, there's a chance I could avoid missing any race rounds - if we pulled it right after round 4 in July, then there is a 6 week window until the next race round...which, hopefully, would be plenty of healing time. For people who don't have to have things removed early recovery is usually 2-3 weeks, so 6 weeks would be pretty generous...
Lastly, according to the ID doc, there are no "limitations" from them on what I can or cannot do. Not what I hear from other people or read online, but it does seem to vary a little bit. Guess I'll find out more on the dreaded day.
Mostly though I'm very, very scared of complications with this picc line - because the complications can be very, very serious (like deadly) and can often require ER visits and the like even if you catch it quickly. Living alone, with no BF, family, or anyone else nearby who can help is another level of complications. Traveling to and from work, dealing with this while at work - all of it. That, and let's not forget that you have something sitting, literally, millimeters off your otherwise healthy heart....
Yes, I'm terrified. Like, panic attack terrified.
I do have a friend who's had one for a similar situation (otherwise healthy person who wasn't sick and laid up) and she reached out to me and is patiently providing some info and answering my questions as I come up with them.Most of the online stuff I find is for people on chemo or with advanced Lyme's disease, or elderly people - very, very little out there for otherwise healthy, active, adults which isn't helping the situation since I fall into the last category!
Most reports say it's not as scary as it seems - for the love of god I hope they're at least a little right.
Hi Aj,
ReplyDeleteI came across your blog through your comment in the pilonfracturerecovery website. I want you to know that someone out there hears what you are saying, I live in India I also have pilon fracture and my first surgery after all the metals and fixtures, my Achilles tendon got contracted and I am walking on forefoot. Doctors also say I now need an ankle fusion which means another surgery and I am really terrified ( panic attack terrified). I am not into any high level activities and I had a fall through which I broke my ankle and I understand what you are going through and depression is bound to happen. Even I had become so irritable and less tolerant to listen to anyone’s problem in the past few months. I haven’t been able to walk for 8 months after my surgery its frustrating and more than the physical pain the trauma is huge.
When I read your blog I understood that you have a lot of anger against the person who hit you and its pretty natural to feel that way. For the sake of your healing its easier said than done but you need to try and let go of the anger there is a saying from Dalai Lama that “Anger is like a hot charcoal that you are holding in your hand waiting for the day to throw it at the other person”. So what will happen in the process is that you will get burned everyday. I know you are very stressed out and I send my prayers and good wishes for you that you heal soon. Try and read something that will make your head a bit more calm sometimes meditation helps. Your mind can channelize at times a lot of positive energy to heal and also help change the situation around you.
I wanted to personally come and comment on your blog, to send you lots a healing energy from seven seas across. You deserve a lot more better in life so hang in there. Everything is impermanent and this will also pass.
Nims Laishram
Also try and be in present, most of the time we spend time thinking about the past which we cant change and worrying about the future which is not in our hands. Whats in our hands is today the present moment so Nothing will happen to your heart. If your kind to your heart it will stay healthy !!
ReplyDeletetry reading less online instead of solving problem at times it adds more to the stress. One of my friend told me stop diagnosing yourself with online materials and try to trust your doctor because I was also reading online a lot and getting more and more freaked out. Take care !
Nims, thank you for the well wishes, and returning them back to you as well since it sounds like your situation is not going particularly well either!
ReplyDeleteThe online research is double edged sword - it can have us freaking out about things, but it can also help us know if our doctors are proceeding in the best way possible (not all doctors have their patients best outcome as their primary objective, and many more are not up to date on current information). It can also prepare us for something we are going to be dealing with (for example, my pre-planning and research before getting the PICC line has made my life with it a million times easier).
Pilon fractures aren't that common to begin with, and anytime we end up with a complication, the pool of data shrinks ever smaller making a prognosis very difficult.
I can imagine your frustration with your situation, and do hope that you can make a mostly-full recovery!