I had the appointment with my infectious disease specialist this morning.
I am so fortunate to have my mum with me for most of my appointments - I freeze when I see my doctors. Half their words fly over my head while the remainder swirl round my brain, leaving me muddled and confused. Being a nursing student and learning how hospitals and therapeutic nurse-client relationships function has not helped this. My mum is there to ask the questions I forget, or the ones I purposefully don't bring up because I don't want to know the answers.
We talked about several things:
Bone pain and discomfort (not to bad at the moment although it was pretty bad last week) - might cause some issues when my 12 hour clinical shifts start next month. Will have to see how it goes.
Night sweats - ID specialist said that they can occur with chronic infection, but doctors do not have an explanation for why. This doesn't help me. I am waking up drenched in sweat several times a week - really affecting the quality of my sleep, causing a lot of extra laundry, and an outright nuisance.
CT scan (couldn't see is because computer keeps glitching; will get to see it next week when I see my orthopedic surgeon). ID specialist said that the scan shows a deformity in the bone, about the same location on my tibia as the spot on the MRI from December. It has shrunk a bit since the end of last year. "Yay!" I think - great if it is a tad smaller, but boo for it still being there.
Antibiotics - will stay on Doxycycline until the end of May and then stop taking it. I need to call my ID specialist if my leg flares up or there is an increase in pain. Stopping the antibiotic is exciting news because Doxycycline increases photo sensitivity. I have already experienced this several times. I will be out in the sun for about thirty minutes and feel perfectly fine. A couple hours later my skin will become red and hot and burn. Several hours later it is as if nothing ever happened. While on it I need to stay out of the sun, which is not so fun after surviving a Canadian winter indoors... I need to be outside! I will be put back on antibiotics if anything happens, and before, during, and after the proposed surgeries.
Surgery - I have the go ahead from my ID specialist to schedule surgery when I see my surgeon next week Friday. She stated that the surgery is elective because it is not an emergency, but it does need to be done at some point. This gives me the opportunity to schedule it into my life. My mum an I are going to ask for late August (after the 14th when final exams end) or early September. This would hopefully put the second surgery (the bone graft) in November. My mum had a lot of questions about surgery regarding how invasive it is, other options, etc. We found out the surgeries my orthopedic surgeon proposed would make it possible to make my legs the same length (one is almost two centimeters longer than the other. This is not a very large difference and does not causes many problems, but I do notice it when I walk, it causes some discomfort when I stand for long periods of time and it has made my hips and shoulders a bit uneven). The chance of the bone graft taking is very high because I am young and otherwise healthy. There may be some alternatives to using a metal rod to hold the bone graft and the edges of my tibia together. We are a bit apprehensive about putting more metal in the leg given our previous experience with hardware. We could also potentially go with a less invasive surgery (same as last time - simply scraping away the affected bone). While this sounds great - only one surgery, smaller incision, much shorter recovery time - I am leaning toward the bone graft. We tried the simpler surgery before and it obviously did not work. In February the surgeon said that doing it again would likely not fix things for good. The bone graft option just seems to offer the best chance for me to beat this thing for ever, which is what I really really really want.
Always being cold - ID specialist had me get blood work today to make sure my thyroid is working properly. Mum and I are a bit baffled that this has never been done before. I have been mentioning how I am constantly cold since I was referred to Hamilton in 2011. This is not "put on an extra sweater" to get warm cold. This is "I have 4 sweaters and 2 blankets on and I am still shivering" kind of cold. Freezing to the point that I feel my eyelids are cold when I blink; feel that the tip of my nose is cold from the inside out, without touching it, shivering under a mountain of blankets in bed, toes hurting from the cold, etc. etc. Hopefully we can figure out why. The cold, along with bone pain and night sweats, makes for one grumpy miserable person.
There were several things that really stuck out about today's appointment:
1) My ID specialist said that she does not understand why I was misdiagnosed/sent away by my previous doctors for so long. Given my symptoms it should have been obvious to the doctors that I had osteomyelitis. It is important for me to hear this from her. The physical pain and emotional distress my family and I went through when I had surgeries, saw me become ill, and were continuously sent away from appointments being told we were worrying to much was avoidable which resulted in the infection getting as bad as it did in 2011 was completely unacceptable. What could have been a routing case turned into something that has affected my life for over nine years, and will continue to do so as I have more surgeries this fall.
2) The ID specialist said "We are all affected by this, your doctors and your family, but it is the worst for you." I have been struggling to cope recently. I feel guilty toward my family for needing their support and causing them stress and anxiety. I feel bad for requiring them to take time out of their lives to care for me everything I have surgery. It helps me to know that my doctors and family recognize how hard this is for me - physically and emotionally. I am so fortunate to have the family and doctors that I do have. On the drive home, mum and I talked about my feelings of guilt; how I was afraid to say that I really want the surgery this fall because I don't want to inconvenience anyone. I explained how I feel we are all in this together so I try to consider how everyone feels, is affected, and experiences things. My dear mum looked at me and said "It is not nice to hear sometimes, but this is actually all about you, and that is o.k." I could have cried when she said that - she understands how hard this relapse is for me. I want to do something to shoe her how much I appreciate her and how she is forever standing by me.
3) Everytime my ID specialist pulls up scans, she explains that my tibia is much thicker than it should be because of all the trauma and surgeries. Today was not different - she commented on how my tibia was deformed, I immeditely replied "I know, I think you tell us every time we are here." I was not trying to be rude. I think my ID specialis ti s fantastice, but we have dones this so many times now... I am tired. There is nothing new to say. We know what the problem is - been round the block before. Which leads me to my next point
4) As we were walking toward the care in the basement parking lot, mum and I did not say much. We are usually excited about good news or a bit upset or distracted while we digest not so great news when we leave appointments. Today was just about acceptance... we knew that this was what it was coming to (surgery) - I think we are tired of dealing with this infection and sad it had returned. I just want to get the surgery done with so I can get on with my life. I won't say it is indifference per se, but I am ready to get it over with. I am fed up with having this thing take up so much of my time and energy. Something has to come to a head, and that means surgery. So we just accept it.
5) Last but not least, I was not upset that the CT scan showed something. Even the ID specialist said not to be surprise - that we knew something would come up on it. This is probably part of the last point (acceptance). I just hear the news and went with it.
On May 1st I will see my orthopedic surgeon to discuss (and see!) the CT scan and my surgical options (although I know which I will choose). We will also ask the surgeon to schedule a date for the first surgery. This scare the hell out of me since I have never had a multi-step plan like this before. It also fully set in today that between the surgeries I will not be able to walk on my leg at all... bummer. I will then have about four months to wait. Four months intermission to get on with my life before we hit pause for eight months. At least without the antibiotics from the start of June onwards (if nothing goes wrong) I can enjoy some sun and enjoy the summer!
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