Jan 7, 2015

Post Op Parkinson's

I ended off 2014 with surgery unrelated to my YOPD.  However it certainly did not go without affecting it.  I started to be plagued with dysplasia since my early 20's.  I had a surgery done many years ago to cut out the bad pre cancerous cells and in turn still be able to have children down the road.  It only worked for a period of time before growing back slowly.  After having our second child these cells started to grow a bit more aggressively and I was having them checked every 6 months to ensure they didn't turn to cancer.  At my most recent test back in February they had started to grow a little more aggressively although still slow.  A decision was made at that point for me to have a complete hysterectomy and salpingectomy.  In regular terms I had my fallopian tubes, uterus and cervix removed. 

Surgery was routine of course for the Doctors.  However I knew it would be far from routine for PD when it came to recovery.  Although I wasn't even prepared for how tough it would be post op.  My hubby and I arrived at the hospital, did all the necessary paperwork and pre surgery talks with anesthesiologist, my surgeon etc... We discussed my PD meds which thankfully they allowed me to take that morning and the fact that I would miss one dose during surgery.  Then the time came for me to walk to the OR.  I had a sudden flashback of my oldest daughter Samantha having her tonsils out just before she turned 5.  I remember how terrified she was and how thankfully they let me take her to the OR.  As I walked her into that scary sterile room full of gadgets she was shaking she was so terrified.  I tried my best to console her as she sat on the OR table and I held her in my arms as she fell asleep to the gas mask on her face and tears streaming down her little cheeks.  I managed to hold it together until she was out and they walked me out of the room at which time I bawled the ugly cry.  It had been years since I had had surgery myself, but in that moment of laying on the OR table a terrible sense of fear of the unknown came over me.  All I could think of was if I as an adult was this nervous and terrified imagine my poor little girl that day.  The last thing I remember is thinking of that and feeling a tear roll down my own cheek as the nurse looked down at me and said "everything's going to be just fine I'll be right here with you the whole time." And with that, I was out.

I woke up in recovery being told how well everything went trying to understand it all in my very stoned state.  And soon after that I was being wheeled down the hall to my room where I was to spend the night and leave the following morning for home.  I was thrilled to see hubby again and was even more thrilled later that day when he brought the girls to see me.  I tried my best to hide any pain I was in and bask in the excitement of Samantha showing me all the lovely homemade cards that her and the other children at the dayhome after school had made for me!  I then spent the rest of the evening in and out of sleep and in and out of pain and fairly shaky from all the stress both mentally and on my body.

The nurse I had that night started to discuss with me at one of my BP checks about how they would try and get me up the following morning.  I discussed my PD with her and explained that my biggest issue with it is not necessarily the tremor but the stiffness and rigidity that comes with it.  How when I even sit in one position for too long my body seizes up and is hard to get moving again.  I explained to her that their best chance for me to get up would be 45 mins after I took my morning Levodopa and that I would need two nurses to try and get me on my feet after nearly 24 hours in bed in one position.  We agreed I would hold off until 7:30 am for my morning meds (shift change for them) and that would give them 45 mins to get their day going before getting me up.  Sadly that didn't happen and it was nearly 1030 that morning before they came to get me out of bed for the first time.  Now over 24 hours in a bed and my morning meds long worn off.  When the nurse came in and said she was going to get me up I explained to her what I had the night before and how she was going to likely need another nurse to help.  She told me that I'd be soar but I'd be fine.  I tried to explain that I didn't mean from the surgery but from my PD and how seized up I was going to be.  She felt she could get me up on her own, but I stressed that I thought that may be a mistake.  She finally agreed and sent for another nurse.  With pain I got to a sitting position with my feet over the side of the bed.  Then with their assistance managed to get to my feet.  I think the majority of my weight was on each of their arms and my right arm tremor was pretty insane.  As soon as I got some weight to my legs my right leg started to vibrate.  I thought to myself "oh dear, this is worse than I had even anticipated".  They then urged me to take a step forward but my right leg was glued to the floor and I felt frozen for the first time since having Parkinson's.  I had read about 'freezing' and heard other people talk of this as it's common with PD but I had never experienced it myself.  They kept telling me to take a step and all I could say through my shaking right side was "I'm trying, my foot is stuck".  Finally I was able to slide my foot forward.  I don't think it came off the floor at all, rather just a shuffle forward with the other foot weighting any steps.  I have no idea how long it took me to get from my bed to the other side of the room where the bathroom is but it certainly felt like an eternity.  After three steps (or shuffles) the RN said to me "so that's what you meant?"  I simply said "yes, but I didn't know how bad it would be".  For the remainder of the day any of my times I need to get up and out of bed, two nurses came without being asked thankfully.  Come 3 o'clock that afternoon I said "so I'm suppose to go home today right?" she smiled and said "ya that's not going to happen".

Thankfully by the time the following morning rolled around and from the multiple times of short stints of sitting up and getting to my feet I was able to walk with only one nurse.   Then by about 1030 am the following day I managed to get up and walk although slowly unassisted.  My nurse that morning called me an over achiever!  Ha! Ha!  I definitely threw them for a curve ball that's for sure.  The night nurse the 2nd night came in at one point and asked me a whole bunch of questions about YOPD which I didn't mind at all.  She told me that they dealt with babies and post partum and gynecology issues, not movement disorders.  So she was curious to educate herself and I appreciated the effort and her compassion once she finally saw for herself what I had assumed would happen.  When it finally came time that I was given the OK to go home and they thought I was moving well enough unassisted she told me that it had been a pleasure taking care of me.  That she thought I was inspiring to talk to given how positive I was and all the things I do to try and keep my PD in check.  That given my circumstances she admired my attitude.  She was very sweet and in that moment of feeling crappy and being in a fair amount of pain I certainly did not feel in any way shape or form inspiring!

It was a slow road to recovering, PD definitely threw an added curve ball into things that an otherwise healthy person would not have to endure.  It's certainly not something I'd want to go through again anytime soon.  However the decision to have this surgery done was certainly a wise one after all as I just received the pathology results.  Although there was no cancer there had been a high grade change in cells since February.  Previous to that all the changes had been slow.  So these results were a huge relief that the right decision had been made and waiting any longer would have at some point been really really bad.  I think I'm pretty tough, but not sure I'm tough enough to have dealt with PD and cancer/chemo as well.  Thankfully the right choice was indeed made although a tough one to make!

So now I start off 2015 with that out of the way, the fear of the big 'C' gone and I can focus on getting back to my exercise to help keep my PD in check.  Now 4 weeks since surgery it's been hard on my body as it feels better and works better with regular movement.  So I'm looking forward to getting back into the swing of things with various activities like running, walking, swimming, yoga and of course getting back in the saddle at riding lessons again in the coming weeks!