I can see the end of the road....almost

With this condition, I haven't always gotten the best news when it comes to doctor's visits, but this past week that changed! I went for my 6 week post-op follow up with my vascular surgeon and he is very happy with the progress. He said that my left leg (operated 1/27/16) was doing better than my right leg (operated 9/1/15) but that both were still in the normal range. He explained that the lower number on the right leg could have to do with the damage that was done by my blood clot in June. As long as things are fixed and working well, I wont get too focused on perfection.

Another thing we discussed were my scars. I had an old set of scars from the surgeries I had done in October, 2013 and they were just re-opened and extended with these most recent operations. On the left leg, my surgeon was able to take out the old scar and sew the new one up nice and pretty. The right leg does not look as nice. On the inner thigh, there is about a 6 inch portion that is con-caving and it is also discolored and still looks bruised but isn't. Doctor said that eventually he can fix it. He wants to wait around a year and then he will go back in and make it look pretty. That was such great news! Its not an exaggeration to say that the right leg looks a bit Frankenstein-ish, so knowing that it can be improved down the road is a great relief. 

Unfortunately, I do have another surgery on the horizon. I have a labral tear in my right hip that I have been waiting to have repaired for 5 years now! The orthopedic surgeon was unwilling to work on the hip until the issues with my legs were sorted out. At that time, I still didn't have a diagnosis for the PAES so the hip went on the back burner. Well, after my first round of surgeries in October 2013, I initiated the process to get the surgery going. Being Canada, the wait took a little while. I finally got the call to get ready for surgery in June 2015. If you've read some of my other posts you may have caught on that I had other things going on that month. A lovely little blood clot situation. I had to put the hip surgery plans on hiatus until the legs were sorted out...again. This was another devastating blow but I was getting used to those. So after I got my left leg done in January I made the call to my orthopedic surgeon's office to book me in. I hope to have that surgery done in the next couple of months and then after that I have no plans for any more surgeries!

This year has been really tough on me and my family and I am so happy that all of this junk is almost behind me. I have had to give up so much this year and I am tired of giving stuff up. I've missed a year of school, I have been off work for 7 months, missed countless social activities, had to cancel vacations and miss a close friend's wedding. It has been one disappointment after the next, but that is over now. I have registered for a course at my university this spring, and I am making plans to take a little road trip this summer to see my best friend in Alberta. I am learning to let go of the anger at what I lost and focus on the future and all the promise that it holds. My optimism is coming back, and that is what I am most grateful for.

One lesson that I have had trouble getting right is listening to my body's cues. At the start of this most recent mess I wasn't listening to what my body was telling me and it got me into a dangerous situation with the blood clot.

The other night I had the house to myself for the first time in months so I decided to have a beer and movie night. I haven't been drinking much at all since the end of May when this all started and I hadn't had a drink since the week before my surgery. I had one beer during the movie  I was watching and when I stood up I felt very weird. My body almost felt drunk but my mind was fine. I was dizzy and my vision was shaky. Since my awareness is heightened since the summer, I was feeling really nervous. Then I had what was similar to a panic attack which was awesome and just what I needed at that moment. Not actually. I was only 2 weeks post-op so I decided to be safe and go to the hospital just so they could check my vitals. Thankfully everything was fine and the ER doc said that it was likely a drop in blood pressure and that the vasodilating properties of the beer didn't help.

I could have felt embarrassed by this over-reaction but with my chronic history of ignoring warning signs, I am glad that I am progressing and learning to listen to my body more :) Needless to say, this has scared me off of drinking for a bit longer.

Isn't it ironic...

So tonight I was feeling like a wanted a sense of community and I went looking (again) for any blogs on PAES. These are EXCEEDINGLY rare. I went deep into the Google search and by page 6 I found a comment on a compartment syndrome blog! Woot! I got all excited and started to read. Maybe they had wisdom to impart on me! A couple sentences in I thought, "wow this sounds just like me!"  I look at the name. It was me. It was my own freakin post from 7 months ago. Argh!! There is so little on the internet for people to get a first hand idea of this condition. It's frustrating. Well this motivated me to blog about it because it just points out how my blog may come in handy some day. Even if only one person finds this useful, then I will feel pretty good with myself 😊

Netflix and Heal

So it has been a while since my last post, but hey, I've never claimed to be consistent.

I thought I should give a bit of an update at to where everything stands with me. It was confirmed this past summer that both of my grafts had failed and that both would need to be revised. This was of course terrifying! Anyone who has had a bypass-graft knows that these surgeries are not a walk in the park. You might be able to manage a shuffle in the park after a week or two.

After one of the most anxiety ridden three months of my life, I had my right leg revised on September 1, 2015. This leg was the top priority because it was the leg that had already clotted and was more damaged on the imaging scans I had done. With that surgery I got a whole new set of scars that made my old ones look like child's play. I went from a comparatively small, 6 inch scar to a total of 14 inches of incision. The original incision site was extended to 10 inches, and then mid-way up my thigh is a horizontal incision of 2 inches, and then the same thing at my groin/inner thigh.

This healing process was completely different than the one I endured two years earlier when I had my first round of surgeries. I chose to have an epidural this time instead of the general anesthetic.If anyone reading this has any reservations about which to choose, my hands down recommendation is the epidural. Obviously your personal case should be discussed with your doctor. With the epidural you still have the option of being sedated. You do not have to be intubated and the recovery from it is much less stressful on your body.

After waking up from the surgery I was really alert and in minimal pain. I only stayed in the hospital for three nights and was discharged home. I went to my parents house to recover, which in hind sight was not the best choice. My parents were spectacular, but there is something to be said about the comforts of home. I will elaborate a bit more on this in a later post. I had good mobility almost immediately and was able to physically tend to most of my own needs. My parents did to stuff around the house and the meal preparations because my energy was so low that I did not have the energy required to make my owns meals. After about two weeks at my parents house, I flew home solo. For the first couple of weeks I was feeling great and my energy was coming back steadily until about mid-October when I plummeted. There were several days where I would get out of bed at noon and stay on the couch until 8:00 PM and then go back to bed, exhausted. I would then spend the next 12-14 hours trying to get enough sleep; waking up 4-5 times during the night. A blood test confirmed that I was borderline anemic. I started on iron supplements which seems to help the problem a bit.

As the months dragged on, I was still getting no word on when my next surgery was going to be. During this whole time I have been off work on disability. People seem to think that is great and I must be enjoying my time off. In all honesty, I would give anything to be able to go back to my normal life before all of this. There is only so much Netflix a person can watch before she starts to question everything about her life. And I reached that point early November. 

Finally, on January 20th I got the call I had been waiting for from my surgeon's office with my date: January 27th. OK. It took me a minute to take it in but then I started yelling for joy. I'm pretty sure my surgeon's MOA thinks that I am crazy.

Today is February 2, 2016 so I am 6 days post-op today. This go-around was even better than last time! I did the epidural again and was only kept for 2 nights this time. I am very mobile around my house and I have already driven to the local coffee shop and had my first outing. This time we decided, and my wonderful mother graciously agreed, that I would recover better in my own home. She flew in the day before surgery and she leaves next Monday. It has been wonderful to have her around for groceries, meals, tidying up around the house, and of course its no fun being sick when your mommy isn't around.

Overall, I am feeling optimistic this time and I am looking forward to being healed up and getting back to my life! I may change what that looks like but at least I have the chance now :)

Next step

I have another CT scan tomorrow. This is big because it will tell us how to proceed surgically. I know that I need both of my surgeries redone, but there is a question of using synthetic grafts and rerouting the artery. Options that both my surgeon and me  are not too keen on. The worst part of all of this is the uncertainty that is my life right now. I can't plan on school in September, as I had hoped, I can't be sure I will be able to go to my friend's wedding in Miami this winter, I can't even plan a weekend trip a month in advance. All the positive events that I was looking forward to, I can no longer plan and anticipate. What I have to look forward to now is 2 more painful surgeries with 3+ months of hard recovery. At least for the last surgeries I didn't know what I was in for. Ignorance was bliss. Now I will go into it remembering how much my skin hurt afterwards as the nerves were regenerating. How painful it was to make a wrong step and, just for a fraction of a second, lose your footing. I remember how excruciating it was to have blankets touching the hairs on my legs, but the idea of shaving would be so much worse.

Last time I thought that I would be so productive during my two months off of work. I imagined reading a lot of books, knitting, writing, painting (even thought I rarely/never do any of the last two, I thought my creative spark would be lit). What actually happened was far from productive. The first 4 weeks I was lucky if I slept less than 16 hours/day which consisted of two 4 hour periods of being awake with a 4 hour nap in between. The boredom was brutal. I was quite lucky that the depression didn't get too tight of a grip initially. I was so elated from having my legs fixed once and for all *rolls eyes* that I was able to see past all of it and be happy about walking. This time around, the cloud has already descended and I am going into it all in a much darker state of mind.

I have been trying really hard to focus on positives and only the things I can control. One of my mantras when I get stressed and really anxious is "I can only control this moment" and it really calms me down. Reminding myself that I have no control on any of the outcomes, but I do control how I respond in the moment is completely up to me. Also, I believe, "everything will be alright in the end, and if its not alright, it's not the end"

Changing the dialogue

Your body is a temple is a phrase we often hear. The idea of giving yourself the proper nutrients needed for a day is a tale as old as time. We all know exercise is crucial and that we need to get enough sleep. We all KNOW this but why do most of us not practice this?

The shift I am making in my mind is to treating my body as a separate entity from my mind and self-identity and showing it the respect that I would show my friends and family. It’s no surprise that I have struggled with self-esteem issues most of my life. I have always been the tall, chubby, freckled red-head. One thing I always noticed was how I would never speak to my friends the way I spoke about my body. I am actually very proud of the person I am, aside from my physicality. I am a loyal friend, good daughter; I am smart and driven.

Yesterday in the grocery store I was starving and I had had an emotional day. I really wanted to get the junk food or ready-made meals but each time I had that craving I asked myself, “Does this choice show respect to my body?” and I walked past my temptations. That is huge for me. I have always used food to soothe me, and in recent years with all the physical and emotional stuff that has been happening, it has become my main source of comfort.

I also caught myself in some negative self-talk yesterday and instead of letting it pass or distracting myself I stopped and said, “Is this a respectful way to speak to your body?” I decided that I have to stop blaming my body and perpetuating the cycle of anger and hate. Sure, it has failed and let me down but it has also done amazing things for me. I am going to stop holding in to a standard of perfection that is not attainable, and start praising all the joys it brings.

Prologue

"Happily, some of them kept records of their troubles. You'll learn from them—if you want to. Just as someday, if you have something to offer, someone will learn something from you. It's a beautiful reciprocal arrangement. And it isn't education. It's history. It's poetry."


What is "Popliteal Artery Entrapment Syndrome" you ask?  So did I. 

I first heard this term in May, 2013, when I got my MRI results back and those were the findings. When you Google it, there is surprisingly not a lot of information. Correction: There is a good amount of clinical information and definitions and such, but I have yet to find a good first person account from someone who actually experienced it. Being the internet and all, I expected a lot more out of it.

Here is what I have learned on the topic; please don't mind the excessive copy/paste.

Popliteal artery entrapment syndrome (PAES) refers to symptomatic compression or occlusion of the popliteal artery due to a developmentally abnormal relationship with the medial head of gastrocnemius (MHG) or less commonly with popliteus. 

Translation: The popliteal artery (one of two arteries that feed your lower legs) becomes entrapped within the muscles of the back of your leg. Over time, the artery does not bounce back and becomes occluded (closed up). 

What is feels like: It can be hard to describe the symptoms of this condition but one of the best ways I've found is that it feels like a tourniquet being tightened around your leg with each step. Also, your leg becomes very "tired" and the longer you walk, the more you lose normal gait and start to limp. It causes numbness and pins and needles in the feet as well. 

I wanted to start this blog so that maybe someday some other desperate person would stumble across this in their futile search on the condition and be given a glimmer of hope. A lot has happened to my body since symptoms first started (2008) and I think it is important to contribute to the dialogue on a topic that is woefully under-represented.