So this post is more for the benefit of those with TAH's in their future, or for those who are morbidly fascinated with open wounds, blood, bile, and the gamut of aches and pains. Honestly, this is the kind of post I've been putting off, because it's probably a little more personal than I'm comfortable with. But when I was preparing myself for surgery, I asked Perry a million questions. I wanted to see everything. I even wanted to touch everything. You probably do too.
Fair warning: I'm going to include pictures and a few videos in this post, and some of them are not for the squeamish. But if you're about to undergo this procedure, there's nowhere else on the web to get a first hand look at the process. The Syncardia website makes the TAH implant look like a day at the carnival. The doctors don't tell you all the things the nurses will have to do post-op, or really what to expect physically once you're home. These are all things I wish I'd known ahead of time, because in all seriousness, if Christie were not a nurse, I'm not sure how I would have handled all this. Not to mention that she works at the hospital where the procedure was done and knows how the system works, and how to get things done.
There are two major issues I want to address over the next few days:
1) The actual physicality of the procedure, along with post-op and daily living challenges, and
2) Navigating the murky waters of hospital protocols once you're home.
Let's start with #1
The Procedure
Before surgery, a nurse or aide will shave everything from your nostrils to your nethers and in the words of Perry - "...and I mean everything." Haircuts are not uncommon. Surgeons don't like hair in their OR's and you shouldn't either. This is significant because about 2-3 days later, it starts to itch. This is particularly a problem because you are covered in wound dressings, taped up in about five different places, and possibly taking pain meds that make you itch even more. Lotions are prohibited because of healing surgical sites and the risk of infection. The solution for this? Suffer. It will be over in a day or two and hopefully the pain meds take the edge off. You'll be asleep most of the time anyway.
In the OR, you will have an "A line" placed. Basically, an IV line with a needle the size of a pencil inserted into the very most tender, mommy-loving, part of your wrist - that part that you check to see if the bottled milk is too hot for baby because it's the most sensitive part? Yeah, right there. For me, this was the absolute worst part of the whole ordeal, and it only lasted about four seconds. I'm just being straight here because you need to be mentally prepared. I have no words to describe the excruciating, mind-numbing, primal pain of the A-line. It was all the pain in the universe packed into a tight four seconds, but then it was over. They actually strap your arm down and give you 4-5 local anesthetic shots in your palm and arm to lessen the pain of the IV - probably because people would pass out without that mercy. I let out a blood-curdling, I'm-being-murdered-slowly-with-an-axe- scream - and the docs said it was pretty run-of-the-mill for an A-line placement. I don't remember much else after that.
You awake with a tube down your throat and not much sensation anywhere else. That part wasn't as bad as I imagined - just relax and breathe with it. When I first came to, I listened for the familiar sound of the TAH that I knew from being around Perry. The thumping is a pretty good sign that everything went well. Fog for about a few hours, then the realization that you're rigged up much like Neo in The Matrix. The sooner you start breathing on your own the sooner the tube comes out. The nurses will ask you to cough and take a few deep breaths with it. Once you can, out it comes. A little burning, but not bad.
Five chest tubes protruding from the lower edge of the rib cage, two tubes feeding air to the artificial heart at on the left side of the abdomen, the afore-mentioned A-line, and if you're very lucky, a Picc line in your right bicep that was placed with little ceremony or pain prior to the surgery. More on the
wonders of the Picc line in a the next post.
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| About 2-3 hours post-op |
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| Pic line. I still have this today, though most people can't keep them sterile for that long and they have to be removed after about a month. My veins are trashed from continuous lab draws pre-surgery, so the nurses can now draw blood or administer meds through this. Not sure how long I'll be able to keep it clean and safe, but it's already saved me nearly 50 needle sticks (probably more, since no one can really get a vein on the first or second try) |
I could actually feel the contours of the chest tubes coiled inside my chest cavity - there being lots of empty space now where my over-sized heart had been. They didn't hurt, they were just uncomfortable, making it difficult to draw deep breaths. This was disturbing because breathing deep is one of the things I looked forward to the most after the hellish shortness of breath over the last few years. All was well by the third day and out they came:
This only burned a little, but the pain was immediately rewarded by glorious oxygen - deep, full breaths. I could feel the coils unwinding as they came out - a little odd feeling, but not very painful at all. Deep breathing made me suddenly aware that someone had broken my ribs. Bone pain is awful, and Christie made sure the nurses stayed on top of my pain meds accordingly. The incision in my chest was healing nicely, but the skin is incredibly tight, and breathing deep definitely makes you aware of it. Nevertheless, being free of the chest tubes allowed me to start moving from the bed to the chair and back with assistance, and trying to use the bathroom. It's all important to get the digestive system moving - a sure sign that the body is recovering nicely and the plumbing is working. This took quite a few days for me as anesthetic tends to slow things down. Trips to the chair, bed, or bathroom are tedious - I was connected by the tubes in my abdomen to the Companion 2. This is the machine that accompanied me everywhere I went. The bathroom, walks around the halls, etc.
I had to be stable on the Companion 2 before I could be switched over the Freedom Driver:
(For videos on how the Freedom Driver works, go to Syncardia.com )
People will want to visit you during these first few days, but the trouble for me was that it was an incredible effort just to stay awake. Even talking was exhausting, but your family and friends will be excited to see you as soon as they can. It's probably a good idea to discuss this before hand with everyone and have a plan - I wasn't truly up to company until about 2-3 weeks post-op because every action is a huge expense of energy, there's a lot of digestive uncertainty, and privacy goes a long way toward helping you recover at a good pace. A trip from the bed to the chair, or the bathroom and back required a 3-4 hour nap to recover. It took me about 4-5 weeks to be independent and strong enough to consider switching to the freedom driver, and by then, I was more than happy to see friends and have people in the room. Obviously there are people you'll want to see as soon as possible, just be warned that you will be way more knocked out than you expect, and keeping you eyes open for any length of time requires a supreme effort those first few weeks.
Once I was stable on the Freedom Driver, and family and friends had undergone the week of training, I was discharged. Though I had a little scare and had to be re-admitted a week later, I only stayed another six days. Then the real fun started.
Once I was stable on the Freedom Driver, and family and friends had undergone the week of training, I was discharged. Though I had a little scare and had to be re-admitted a week later, I only stayed another six days. Then the real fun started.
The immediate challenge was (and is) making sure the canula dressing stays nice and clean. This means weekly dressing changes, and again, I'm so fortunate that Christie has experience with these. I generally "shower" once a week, followed by a canula dressing change, and hopefully, a pic line dressing change. These don't always line up due to life and Christie's ever-changing schedule, but we get pretty close.
Showers - most people take sink baths and use lots of powder and lotion. We've actually devised a way of waterproofing the canula and pic line dressing with water shields and plastic bags. This allows me to at least stand in the shower and use the spray shower head to wash off. I don't stand directly underneath the water, but I can at least get wet, use a real washcloth and soap, and lean over far enough to wash my hair. Note that this whole time, the actual backpack with the pump sits on a chair outside the shower. It makes a bit of a wet mess, but we're getting better at it. This generally takes about 30 minutes. Then I dry off quickly and move to the bedroom where I lay down on the bed for the dressing changes. Rich and Christie work together to create a sterile space, then prep the various tools and materials for the change. They gingerly remove the dressing, because if too much hair has grown under the bandages, it becomes a very unprofessional wax job. They use chloro-prep applicators to remove any bile build-up, sanitize the area around and under the tubes, then carefully shave the whole area. This can be a bit tricky because there are raw spots and stitches to avoid. It often burns and it definitely freaks me out to have everything exposed like that for half an hour. When everything is clean, they use a skin prep solution to coat the area where the bandages will go. I'm violently allergic to adhesive (as it turns out) and without this barrier in place, I develop nasty, oozing blisters that get infected, raise my white blood cell count, and potentially landing me in the hospital. Once it dries, the bandages are carefully applied, followed by an abdominal binder as an added layer of protection. The same procedure is used to replace the Picc line dressing, though I sometimes have that done by the nurse at the hospital after my Wednesday lab draws. This all takes anywhere from an thirty to forty-five minutes, and creates quite a mess.
It holds me for the week, but I have to be careful not to get too sweaty or overheated between shower days or everything can get really manky.
Beyond this are the meds. Be prepared to spend around $200 a month, even with good insurance. This is for meds, supplies, binders, and might cost more depending on your coverage and need for a home health nurse. We used one for a few weks but it became cost prohibitive, so now we make a trip or two a week to the anti-coagulation clinic for my blood checks. Again - be prepared to have someone drive you if you don't use home health.
Speaking of driving, you can't. Period. I know some of my readers are HCMers like I was (WAS...feels so good to use that tense) and are used to doing small things like light trips to the grocery store, or taking the kids places, even running up the street to grab take-out. That's over. Not only can you not go anywhere by yourself, you can't be left alone at home either - meaning that the other members of the household can't go anywhere without you. One of the ways I used to conserve energy was staying home for things I didn't need to attend: dropping the kids off at book club, dropping off a package, a quick vet appointment. I'm in attendance for all of those things now because if they're going, I have to go. This isn't so much a burden on me, but someone has to haul the equipment to the van, load it, cart it around, unload it and haul it back to the house when we get home. Sometimes you need to run out and back, then out again soon after - the equipment goes every time. It's not uncommon for Christie or the boys to load and re-load my bags 5-8 times a day. We can't just leave them in the van if we're going back out because if the machine faults, the bags need to be within arms reach.
Sleeping can be difficult at first. I put the backpack on a chair by the bed to give myself the a generous stretch of tubing. I slept on my back the first two months, but if I wear the binder at night, I can sleep pretty comfortably on my side now. The machine tends to alarm if I stop breathing momentarily because of a dream, or hold my breath while stretching my muscles (which no one really notices themselves doing until an alarm tells you so).
I'm sure I'll think of more things in the future. Next post I'll discuss the obstacles involving insurance, hospital protocols, and the importance of a device coordinator who gives a rip.
This all sounds scary but I wish someone had prepared us for it all beforehand. It's both an emotional and psychological adjustment. Your life is literally at the mercy of this impersonal machine, and it takes a lot of effort on the part of loved ones and friends to keep everything moving smoothly. It's easy to get down in the dumps - while the Freedom Driver takes away all of the horrific sickness from before, it also chains you to itself and forces you into a life of even greater dependence on others. It's important to sleep well, eat well, and focus on the things you can do. Hopefully some of these details help someone to get straight with it all beforehand. I feel like we're still playing catch up.
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| So much bio waste, so little time |
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| Not as painful as it looks, just always in the way. But a clean dressing makes you feel a little more human again. |
Beyond this are the meds. Be prepared to spend around $200 a month, even with good insurance. This is for meds, supplies, binders, and might cost more depending on your coverage and need for a home health nurse. We used one for a few weks but it became cost prohibitive, so now we make a trip or two a week to the anti-coagulation clinic for my blood checks. Again - be prepared to have someone drive you if you don't use home health.
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| Every two weeks I'll load these guys up - too many pills to remember, so I have a list. Anyone going into TAH or transplant surgery MUST have something like this that is pedantically organized down to the hour so you don't miss meds. It could literally be a life or death issue. Spend the $10 and get good med organizer. |
Speaking of driving, you can't. Period. I know some of my readers are HCMers like I was (WAS...feels so good to use that tense) and are used to doing small things like light trips to the grocery store, or taking the kids places, even running up the street to grab take-out. That's over. Not only can you not go anywhere by yourself, you can't be left alone at home either - meaning that the other members of the household can't go anywhere without you. One of the ways I used to conserve energy was staying home for things I didn't need to attend: dropping the kids off at book club, dropping off a package, a quick vet appointment. I'm in attendance for all of those things now because if they're going, I have to go. This isn't so much a burden on me, but someone has to haul the equipment to the van, load it, cart it around, unload it and haul it back to the house when we get home. Sometimes you need to run out and back, then out again soon after - the equipment goes every time. It's not uncommon for Christie or the boys to load and re-load my bags 5-8 times a day. We can't just leave them in the van if we're going back out because if the machine faults, the bags need to be within arms reach.
Sleeping can be difficult at first. I put the backpack on a chair by the bed to give myself the a generous stretch of tubing. I slept on my back the first two months, but if I wear the binder at night, I can sleep pretty comfortably on my side now. The machine tends to alarm if I stop breathing momentarily because of a dream, or hold my breath while stretching my muscles (which no one really notices themselves doing until an alarm tells you so).
I'm sure I'll think of more things in the future. Next post I'll discuss the obstacles involving insurance, hospital protocols, and the importance of a device coordinator who gives a rip.
This all sounds scary but I wish someone had prepared us for it all beforehand. It's both an emotional and psychological adjustment. Your life is literally at the mercy of this impersonal machine, and it takes a lot of effort on the part of loved ones and friends to keep everything moving smoothly. It's easy to get down in the dumps - while the Freedom Driver takes away all of the horrific sickness from before, it also chains you to itself and forces you into a life of even greater dependence on others. It's important to sleep well, eat well, and focus on the things you can do. Hopefully some of these details help someone to get straight with it all beforehand. I feel like we're still playing catch up.
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