Port-A-Cath…

As most of you know I went to Peterborough Regional Hospital on Wednesday, May 31^st to have a port-a-cath inserted into my chest.  I was to be there by 10:30am so that I could go to the outpatient lab department first and have my blood drawn and an ECG completed.  Once that was done I was sent down the hall to the day surgery department which is an extremely busy place!  I registered, filled out the required paperwork and then was told to sit and wait to be called.  My procedure was scheduled for 12:45pm so I sat down with my Mom and Dad and waited.  To my surprise I was called in by a Nurse about 10 minutes later.  We went into an exam room and we went over all of my medications, all my diagnoses and just the basic pre-op paperwork.  Then I was taken into another waiting room where all the patient’s waiting to go to the OR were sitting.  I was asked to change into a gown, put my belongings in a locker and then come back to the main area.  Thankfully I was given a stretcher but spending more than an hour on those things causes me SO much pain and discomfort.  The Nurse then prepped my chest and neck on the right side and told me to wait and a porter would come get me to take me to the OR at my scheduled time.

A couple of things here, due to the anaesthetic given in the OR, I was not allowed to drink anything after midnight the night before, I was also told to cut my pain medication dose in half.  Now this most likely would have been fine if I had gone to the OR for my regularly scheduled time.  Unfortunately, an emergency patient came in that my vascular surgeon had to operate on ASAP so they had to bump a bunch of us back, for the record I completely understand the need for this.  In the early afternoon, I finally asked if I could have my regularly scheduled medications as I was becoming increasingly uncomfortable with each passing hour.  Also, I would like to give a big shout out to my Mom who sat with me for HOURS in a crappy chair even though she is dealing with her own hip/leg issue.  So, finally at about 2:00pm I was informed that I was next so I told my Mom to go get lunch, a coffee, etc. and the Nurses said they would call her once I moved into recovery phase two.  The area that I was waiting in was emptied out entirely and the Nurse came to me and said that they close that specific waiting room at 3:00pm.  She was thinking the porter would be there to get me before she finished her shift so she kept me in the room with her.  She was super nice and even moved my stretcher over to the middle of the room and let me watch some of the Jays game while she finished her paperwork.  Shortly after 3:00pm she said she was really sorry but they obviously weren’t coming to get me so I would have to be moved to a different area, she wheeled me down to the phase two recovery room and parked me in a bay.  By this time I knew my Mom would be coming back soon and the Nurses said it was still going to be awhile until I was going down to the OR.  I approached the unit clerk and asked if I could please call my Mom.  She wasn’t going to let me and said I would need permission from my Nurse.  I politely explained that I didn’t have a Nurse and that I was still waiting for my procedure.  Finally she agreed and I called Mom and told her not to bother coming back for a bit.  By this time my Dad was back (he went to see my grandparents) so they hung out together waiting.

By 4:00pm I was a mess, I was going on almost 7 hours with no fluids and I was not properly medicated!  Due to my illnesses, this is not a good thing and I was starting to become really sick.  I used my call bell and a Nurse came down to speak with me.  Her first words were “you don’t look very good” and then she quickly said she would start an IV, give me IV fluids and IV Gravol.  I was so incredibly thankful for that Nurse and all of her kindness.  After we got a line started, fluids and medications running, the porter came to take me to the OR! The Nurse and I were both shocked as she was told that there were still multiple people ahead of me.  I found out afterwards, that due to the emergency surgery that had occurred, my surgeon actually cancelled multiple people and told them to reschedule.  I’m not sure how I got lucky enough to make the cut (no pun intended) but I sure was relieved!

Once downstairs where the OR bays are, I met with my OR Nurse who went over some last minute details, then my vascular surgeon came by and we discussed the procedure and signed the consent form, and the anaesthesiologist also spoke with me and helped calm a lot of my fears.  One thing I was also very grateful for was my surgeon listening to me, the Nurses prepped my right side because they said it was written in the doctor’s orders so I asked the surgeon if it was at all possible to put it on the left since that is my non-dominant side.  She looked at me funny and then told me that she always does it that way (unless there is a certain reason why she can’t) and that there were no orders saying to do the right side specifically so she went ahead and prepped my left side right then and there.  So I was just relieved since I use my right side for everything!  Once I was wheeled into the OR, I met the other scrub nurses that would be assisting in my procedure, I was put on the OR table and strapped down. For this particular procedure, the type of anaesthetic they use is called a local neuro, the OR team described it as being in a very, very deep sleep but you are still able to breathe and such on your own so no breathing tube is required.  Due to my Ehlers Danlos Syndrome (EDS) anaesthetics do not work well so a lot has to be used and it wears off really fast.  My anaesthesiologist assured me that he would monitor everything and NOT let me wake up (I’ve had this happen before and I will never forget the experience).  So, once I was strapped down they administered the first medication and the ceiling started to move (A LOT) but I was still wide awake and totally aware.  The anaesthesiologist leaned over me and asked how I was doing and I replied “well the ceiling is moving but otherwise I feel ok!”  He looked a little surprised told me to hold on a second, injected something else and the next time I woke up, I was in the recovery room, so definitely a big shout out to him also because I certainly did not wake up and I remember nothing!

Once in recovery I was in bad shape, I was crying from the pain being so bad (the local was barely masking the pain) and my surgeon did not order enough post-op pain medications.  In her defence, she does not know me so it is not entirely unexpected.  Once the Nurses in this recovery area were satisfied with my vital signs and my pain was somewhat managed, they wheeled me over to recovery phase two.  Now this I want to mention because I think that it’s a great idea, having phase one and phase two recovery rooms is the best!  I’ve had multiple surgeries and procedures where I’m in recovery still trying to fully wake up, the surgeon comes in and tells you a bunch of things and then you leave and basically think “huh?”  With having the recovery phase two room, the patients are much more awake and their pain is better managed, plus family is allowed in there so that any information or at home instructions can be explained then!  Anyways, they finally called my Mom around 7:00pm to come get me and take me home.  I was given some CCAC information and post-op instructions and was finally allowed to go.

I got home around 8:15pm on Wednesday night and was so, so grateful to be home.  My parents got me settled and then started their trek home.  Since the Nurse had prepped my right side and the doctor had prepped my left side, I was basically pink every up to my chin, very sore, and very itchy.  Thankfully Ryan was able to use warm water and soap to gently wash some of it off for me.  That stuff does not come off easily!  Then I took my own scheduled medications and was finally able to relax around 9:00pm.

Thursday was post-op day one and the hardest part of that day was definitely waking up in the morning.  I could barely move, it felt like I was being stabbed in the chest.  Thankfully, once I got up and was able to take my medications it really, really helped.  Ryan also brought me an ice pack to help with swelling, etc., ice packs are seriously a life saver for this surgery and also frozen peas/corn (thanks Sarah!).  You don’t want anything too hard or too heavy because it will just cause more pain, obviously.  After getting myself a little more settled, I got in touch with my CCAC case manager to let her know I had the port, was at home, and needed a dressing change.  She told me that a Nurse would be assigned to me and they would be coming to visit me that same day.  Late in the morning I received a call from Michael, my home care Nurse!  He came shortly after lunch time and he was amazing.  He is extremely knowledgeable, friendly and easy to chat with.  He did all the intake paperwork with me and then we removed my bandages, checked/cleaned the site and put new ones on.  He will be back next week to remove my sutures, teach me how to access my port, hook up fluids, etc.  My family doctor got the CCAC referral for IV fluids sent in on Friday so we’ve definitely got the ball rolling!  Unfortunately, Thursday was also chemo day so I gave myself that injection in the morning.  I didn’t have too many symptoms but I was definitely more chemo sick Friday and with it being the second day post-op my pain, bruising, etc. had ramped up as well.  It’s all good though, I’ve got this!

On Saturday around lunchtime, a delivery person from the home health company delivered my port supplies.  There are multiple trays with the sterile tools for accessing my port and hooking up the IV fluids.  I will have a small pump that I carry in a bag with the bag of saline and it will infuse the fluids through my port.  The plan is that home care will be doing a few in-home teaching sessions in regards to how to care for my port, as well as, how to access/de-access it and then I will be independent with the ability to call CCAC for questions/concerns.  CCAC will also be providing all of the necessary equipment and supplies that I will require in order to safely use my port.

So, the main thing right now is lots of rest and icing the site until we get my sutures out next week.  It is a strange feeling still and when I move in certain ways I can feel the port and the catheter which is really weird!  Then we’ll get my IV hydration organized, get my coverage for the Inflectra in place and get me on an infusion schedule.  The goal is to see what exactly we can do to improve my quality of life.  I was extremely nervous about getting a port but so many amazing people offered advice and pretty much every person I spoke to said that getting a port was their best decision ever.  Not having to get an IV for every infusion and also not having to suffer and end up in the ER will also be a huge thing for me.  Being on chemo and biologics makes me very immunocompromised so it’s extremely important that I not expose myself to potential high germ areas.  Being able to do more for myself at home is so much safer for me and less stressful then ER visits.

Finally, to everyone that has called, text messaged, sent messages through social media, etc. to check in on me not only on the day of but also the last few days, thank you! It is so nice to know that there are people that care enough to check in and offer support to me.  Hopefully now after a year and a half there will be some easier days ahead.

Wishing You All Health & Happiness,

Lyndsay