Still a Long Road Ahead…. The Days After..

Marc had the transplant late Friday night to early Saturday morning.  Then about noon on Saturday they decided to reopen him to see if the arteries were hooked up properly (that is not medical speak, that’s just the easiest way to explain.)

Marc was sedated and awaiting the second surgery and I spoke with one of the surgeons – he was the doctor who harvested the liver.  I had to sign forms authorizing the surgery and initial that he did NOT have a DNR.  In fact, I said “hell no.  You are to resuscitate the !@#$$ out of him!  We didn’t come all this way for nothing!”

Crazily enough, I had two interesting messages from friends. One was from a friend who lives in Singapore who had been having dinner with friends.. one of the Canadian friends were talking about their friend in Canada whose son had died suddenly and the parents had said that they were thankful that his organs were being harvested in London.  Then a second friend told me that she had heard of a man in the Chatham area who had died in a motorcycle accident.  She explained to me that motorcyclists are encouraged to sign their donor cards.  So maybe it was one of them…?  We will probably never know.

When I spoke to the surgeon, all he would tell me was that the donor was male and a couple of years older than Marc.  We may never know who that man is, but we are supremely thankful to him and his family.  We know it doesn’t make the pain of losing him any less.  But hopefully knowing that his donation has saved at least one life possibly helps them cope.  I will bless them in my prayers every day for the rest of my life.

On Sunday (April 30th) Marc hadn’t eaten for over 48 hours.  He was STARVING.  He was only allowed to have clear fluids as they didn’t want him to get nauseous or vomit (a lot of staples in his belly.) He had broth and jello and pronounced that they were delicious and the best things he’d ever eaten.  THEN he was cleared to be moved from ICU to the transplant unit. Things looked good!

May 1st – transplant unit.  Marc was put on many drugs due to the transplant.  The nurses and staff are lovely.  All good and things seemed to be going well.  They got Marc up and walking (I KNOW!! SO SOON!) It was hard work but he made it around the ward.  They had him up and sitting and they started him on physiotherapy as well… Marc referred to his physiotherapist as “a horrible monster”… LOL!  She is apparently very good at her job but Marc was very sore afterward so somewhat bitter. There’s going to be a lot of sore days I think.

Marc still has mobility but prior to transplant he had a lot of muscle wasting. It’s part of the liver disease. So very much skin and bones.  He will have to build up a lot of muscle mass during his recovery.

Marc and I hung out in his room for the day.. struggled with the WiFi but figured it out and was able to do some work.  Marc told me to leave him a little early so I could go play trivia at the pub local to my hotel. Marc and I met whilst playing trivia.. it’s our thing. So I went.  I did not win.  (I think I came in 3rd.)  I did get a cool shirt though .. it says “That’s what I do.. .I drink and I know things”… (Game of Thrones reference, I know.. even though I don’t watch the show…)

May 2nd – I woke up and started to pack up as this was supposed to be my last night at the hotel. I needed to get home and get our tax stuff together and take care of some stuff.  And then I got a call.

First, Sandy (transplant coordinator) called me to say Marc was having seizures.  I had looked up any drugs they had prescribed and knew this may be a side effect.

I decided to stay in London one more day… and was arranging that with the front desk when Marc called me and with slurred speech told me that he was having a stroke.

I ran out and drove very quickly to the hospital (obeying all speed limits and laws)…. Marc called again to say to get there as soon as possible.

Got to the hospital and Marc’s speech was impaired but he was otherwise OK.  He had started having seizures about 7:30am and had several… some lasting a few seconds up to 90 seconds.  They managed to get them under control with anti seizure medication…another drug added to the cocktail..  The doctors figured it was from one of the anti rejection drugs but needed to do some tests.. a CT scan.. an MRI.. more doctors involved. Neurology came to assess. Marc had severe tremors – even his eyeballs were shaking.  He was very upset.  He was assured that it was under control and the tremors would subside.  By the end of the day his speech was very much improved – still some tremors but his speech was clear and he felt good…. until the Sens lost.  That was pretty sad.  But Marc looked cute in his Senators gear.

May 3rd – I packed up all my stuff at the hotel as it was important for me to head home for a bit to take care of some things.  Everything happened so quickly we didn’t have time to finish up our taxes in order to submit Marc’s application for Trillium Benefits.  The benefits will cover the drugs he needs to stay alive and well and not reject the liver, but they check into your financials (hey, it’s the government) … we didn’t realize that was required and we are a year behind filing.  We had started working on it, but then with Marc ending up in the hospital… things got derailed.  So I needed to get back to get organized.

On the bright side, our friend Leslie came to visit … she drove to London and had a nice visit with Marc and took me out for a lovely lunch.  We both ordered lasagna at this funky old Italian restaurant… delicious! I saved some to take back to Marc – lasagna is one of his favourites – which he enjoyed very much.

I headed back to the K-dub to get tax preparation underway and see my kids and my puppy.  🙂

May the 4th be with you — Overall Marc is doing well.. the seizures weren’t a total surprise (to me anyway… I had read up on the drugs he’s being given…)  Marc was pretty alarmed and a little worried, but the tremors have calmed down and he hasn’t had a seizure since.  I spoke with my friend Karen who has epilepsy.  I have witnessed many of her seizures so they don’t “scare” me but it’s a pretty scary thing for the person having them I know. Karen said the tremors last for days on occasion and the whole experience is very frightening.  After pains for days sometimes.

The doctors added another drug to his regimen.  Until we get the taxes done and the Trillium Benefits, the drugs will be expensive.  Immunosuppression is a fine line.  Enough drugs to not reject the liver, but too much and it can cause the recipient to become ill as their immune system will be compromised.

Marc’s immune system will be compromised.

More updates to come.  In the meantime, if you’re so inclined, please donate, share this post, say a prayer or good thoughts… and of course, cheer for the Senators.  It will make Marc happy.

And again, we SO SINCERELY appreciate everything everyone has done to help.  You have no idea how thankful we are.

You can donate here:  www.gofundme.com/marcneedsanewliver.

I have to pack up and head back to London – Marc says we have a lot to discuss.  And I have to go find Marc’s shoes at St. Mary’s.  :S

 

 

 

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