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So our lives took a turn for the interesting recently; Wednesday July 19, 2017. We got “the phone call” in the early afternoon.
For some time now it has been rather obvious that Denise’s heart function has not been improving. In fact, it has been gradually and steadily deteriorating. The doctors have done everything they can by adjusting medications and settings on her device but that has ultimately only slowed the descent. It has not stopped, much less reversed, the trend.
In short, medications and the CRT device had done all they could, and it was not enough. Her left ventricle is growing less and less effective and, if the trend continues, just isn’t going to do its job at all in the years to come.
We were already aware of the next steps, but it is still somewhat difficult to utter the words, “heart transplant.” While the end goal is truly exciting – a “brand new” (figuratively speaking) heart and a brand new life – the journey from here to there is not something one looks forward to. So when we got the phone call saying that recent tests had confirmed this was the conversation we needed to have – and we needed to have it right now – that was a shock. An expected shock, but still a shock.
Denise was admitted to the hospital the next day and began undergoing tests. We have also met with doctors to better understand the next steps. Very briefly, this is what (we think, as of this writing) the next few weeks will look like:
- The week of July 24 will be a plethora of tests to get a “profile” of Denise to ensure any donor heart is an appropriate match.
- We will also have various opportunities to meet with people who have undergone heart transplants and an LVAD implant, s will as doctors, social workers, etc, etc, etc.
- Speaking of the LVAD, she will get one of those at some point in the coming weeks. Exactly when that will be implanted remains to be seen; I will update when I know. You can read about LVAD’s here.
- She will need a few weeks of recovery after the implant. It’s a pretty invasive surgery, as you might imagine. But once it is in place she should be almost “like new.”
- After she has recovered she will be expected to rebuild muscle and lung capacity for about six months. Essentially she needs to be in as good of shape as she can be prior to the heart transplant.
- After about six months she will be put on the waiting list for a donor heart. At that point we wait. It could be a few weeks, it could be a few years. That’s entirely in God’s hands. What happens after the transplant will probably deserve its own set of updates – and that’s not likely to happen for another year or so – so I’ll leave it here for now.
That’s been our weekend; how was yours?
At this point whether Denise is ready for visitors will change from day to day, depending in large part on what tests are taking place. Most are fairly minor but, frankly, there are a lot of them. And we have a bunch of meetings with social workers, doctors, other people with similar medical journeys, etc, etc.
In short, please text / email Denise if you’d like to connect with her and she’ll let you know if that’s a possibility. She isn’t exactly bed-ridden, but the schedule is surprisingly full. Don’t be offended if her answer is “no” or “later”.
Any updates on the status will be added to this page. Given how useful Facebook was four years ago, we decided it made sense to have a centralized point of reference for family and friends. This page will serve that purpose because, frankly, I now hate Facebook.
As of yesterday, Denise has had a plethora of tests to ensure the rest of her body is functioning properly. So far all the results are very positive. It seems everything is working quite well (so far as we know right now) with the singular exception of her left ventricle. In fact, even the right ventricle of her heart is performing well, all things considered. It’s amazing how a single body part can have such a wide-ranging influence. It sure puts 1 Corinthians 12:26 into a new light.
The date for her LVAD implant still has not been set.
The tests are almost all done and everything is coming back positive. By middle of next week the testing should be complete. It is amazing how thorough they are being; she is seeing a dentist tomorrow. What do her teeth have to do with her heart? They are doing everything to get her ready for the LVAD short of a Mani/Pedi. I think an expert is coming in to braid her hair the day before the surgery.
She should also be allowed off the unit in the near future. It will be nice to go explore the hospital. Maybe play some piano.
Surgery has tentatively been booked for August 16.
No major developments. Surgery date should be firmed up this week. A few more tests, but they are rapidly winding down. We get some common questions, so I’ll answer some of them here:
- How are you guys doing? Honestly, fairly well. Two reasons for this. First, we’ve been through a lot worse. Second, we kind of saw this coming. While this may have been a shock to outsiders, we have already had plenty of time to “pre-process.” That doesn’t make the journey any easier, but at least our level of surprise wasn’t as significant as some might have experienced.
- How can I help? Given the fact that we move in Mennonite circles, “help” almost always comes in one of two forms; food and cleaning. Mostly we are doing fairly well in both of those areas thanks to our families. Our moms have been amazing. What might be nice would be supper invitations to other people’s houses, especially if they have kids of similar age to Cole and Sydney. That would be fabulous for us, and not a whole lot of extra work for the hosts; everybody wins!
- Can I visit Denise? I’m leaving this one in her court. She has her phone and access to email so feel free to get in touch with her to set something up. If she says “no” don’t take it personally; it’s always pretty random what her schedule looks like, not to mention her energy level, etc.
Those are all the common questions I can think of for now. If you have specific questions let me know.
First things first, I thought of a very practical way somebody could help us out. Once Denise has the LVAD implanted we will require electricity every night to recharge the batteries. Given the reliability of electricity in Calgary that’s not normally a problem, but what if the power goes out? It happens. Not often, but it happens. Think thunderstorm, extreme cold, etc.
We would like to borrow a small gas-powered electric generator. We would only use it if there were a power outage, so it would sit idle almost the entire time it was in our possession. But it would be very reassuring to have that extra protection. Having electricity in our house isn’t really a luxury anymore; once the LVAD is implanted access to electricity will, quite literally, be a life-essential.
Any leads would be appreciated.
In terms of other updates, we have learned that Denise will be the first patient in Calgary to have the “next generation” LVAD implanted. I’m very excited about this for a number of reasons:
- The risk of blood clotting is much lower, so the risk of stroke is likewise much lower. Denise was told that there are about 4,000 of these devices around the world (she’s only the first in Calgary) and there have been exactly ZERO strokes reported among them. I guess there is a small, but non-zero, risk of stroke with the previous device.
- The controller comes with its own internal battery that can provide power for about 15 minutes. That just makes it a little less stressful to swap out batteries, or deal with an unexpected disconnection or something. With the previous version, if the batteries get disconnected the device stops assisting the heart immediately.
- The plug-in batteries can last a lot longer; up to 12 hours! That will make getting back into the classroom significantly easier.
On another note, we believe all the testing is now ACTUALLY finished (so they say… again…) and Denise is in surprisingly good health other than her left ventricle. This makes the overall picture very positive because once they correct that one issue the likelihood of a vastly improved quality of life is extremely high. In some ways she is the ideal candidate for these kinds of treatments; she doesn’t have other physical ailments dragging her down, she is young and generally healthy, she is driven to make the most of life, she is religious about taking her medication, she doesn’t smoke / drink / take drugs, she has a strong support network, etc, etc, etc.
Prayers are appreciated as the effects of long-term (as in, more than a few days) hospitalization are starting to wear on us. And Denise isn’t likely to come home until about mid-September. This very much breaks up the family routine. Our extended family has been wonderful in helping us out – as have friends and neighbours – but sometimes we just need mom, dad and the kids to hang out together. That’s a lot harder to come by these days. It’s starting to show in the kids, not to mention Denise and I.
Even “date nights” are far fewer, and far more limited in options; which is a shame because we just discovered a really great restaurant. It’s called NOtaBLE, and it’s in Montgomery. Try it out! We have considered ordering in – which is an option – but the ambiance just isn’t the same with nurses taking blood pressure, calls on the intercom, and the ubiquitous smell of “hospital” everywhere you go. I’d rather smell fresh steak, or garlic bread. And I’d rather listen to the hum of conversation at other tables, or some quiet instrumental music in the background. So would Denise.
This will probably be my last update before the surgery because not much is changing in any significant way these days. Our understanding of the situation continues to be gradually refined, but not in any earth-shattering way. Here are some highlights:
- We continue to do pretty well. Denise seems to be in good spirits. Another VAD patient was sent to help her understand what life is like with the device and Denise ended up being an encouragement and a listening ear for her! It was supposed to be the other way around.
- The newest version of the VAD is even cooler than I thought! But that’s a subject for another day, and probably mostly for engineers and other tech geeks. For all “normal” people let’s just say every step forward in this technology represents an advance in how well it takes care of the patient, in part by reducing the likelihood of adverse side effects.
- August 16 looks virtually certain as the surgery date, and nobody has said anything about any delays. Prayers that day are appreciated. Not sure exactly when she’ll be done, but I’ll do a quick update when she’s out and all looks well.
- Post VAD-implant it is unclear how quickly Denise will be added to the heart transplant list. I previously said six months, but there are reasons why patients might choose to delay having a transplant. That’s a huge discussion, but for the rest of us is just means that life with the new device might be a reality for several years, depending on a number of factors.
The doctors keep saying over and over again (and other patients confirm) that the VAD really will represent a massive step forward in Denise’s health. Her energy level should dramatically improve after she recovers from the surgery (roughly 3-6 weeks). It’ll take another several months for her to regain strength, but now she will have a cardiovascular system that will facilitate that. Instead of being limited by her heart, her heart (with pump) will be limited by her muscle mass. And that’s not too hard to rebuild with a combination of exercise and protein bars. From now on she’ll only eat steak. Raw steak.
Kidding, of course…
One patient (if you can believe this) was able to return to kickboxing after having a VAD implanted! That doesn’t strike me as the wisest course of action, but at least it highlights the potential for improved physical stamina.
All said, this is a nail-biting journey to go through, but we have very good reason to believe this will represent a major turning point in her heart history. She will likely have energy levels she hasn’t had for at least half a decade. It will be very rewarding to go on family bike rides again, with the whole family.
Surgery is done, and it went well.
She is in the post-operative intensive care unit. The doctors were happy with how everything went. Denise’s body seemed to respond well to the process, though it’s only been a few hours so far.
Some questions got raised during surgery with respect to the right side of her heart. It’s one of her valves; it’s too much to explain quickly in a blog. They knew about this ahead of time, but (as I understand it) they wanted to see how the valve responded to the VAD. It’s nothing catastrophic, but there is a small chance they’ll have to take her in to the operating room a second time to do something about it. They will either do it or leave it before the end of the day so we won’t be waiting in limbo for days for closure on that one.
We don’t know when she’ll be woken up, but a rough guess is tomorrow some time. It will likely be some time before she can have any visitors other than immediate family. We thank you all for your prayers and support but it will have to still be remote for the time being.
I don’t mind saying that seeing her in the post-operative room brought back some unpleasant memories. I couldn’t stay for long. She is thoroughly drugged, unconscious, and has plenty of other tubes and stuff, including a breathing tube; not a pretty picture. However, I’m not seeing what the doctors and nurses are seeing. What the medical staff see is success. They are very satisfied with everything so I just have to keep reminding myself that it’s their perspective that matters, not mine. They have the whole story in mind; I’m judging the book by its cover.
Interestingly, the surgeon said that her left ventricle is about twice as large as a normal heart would be. I’ve always said that Denise has a big heart, and that proves it!
She continues to recover from surgery. Breathing tube (and a few other tubes) are out. Several remain. She can talk, but is still short of breathe. She still sleeps a lot, but when she’s awake she’s pretty much a “normal” awake, not a just-getting-off-of-major-drugs form of awake.
She has been out of bed with the physiotherapist early this morning, but only to stand beside the bed. She also sat up for a bit in the afternoon, but started feeling light headed after a couple of minutes. That’s pretty normal, we were told.
Overall the doctors keep reminding us that that are happy with the progress they see. I previously mentioned the possibility of a quick follow-up surgery; that’s not happening. She’s done with the scalpel for now. She has had a couple of echos done on her heart and it looks like it is adjusting to the new power source exactly as it is supposed to. I don’t know what all the numbers on the machines mean (though I’m learning some of them) but the doctors say they should be in certain ranges, and her numbers typically are.
There are no promises, of course, but they estimate she might be transferred to the next unit early next week, and they figure she’ll continue to recover quickly. Typical time to discharge is 2 to 4 weeks after the operation and they estimate she’ll be closer to the 2-week mark given that she’s young and otherwise healthy. I’m told VAD patients get a private room in the next unit, but without the room service and wet bar.
I had a chance to geek-out with representatives from the company that manufactures these pumps. Given that she’s the first in Calgary to get this particular model, there have been a lot of extra eyes watching her and the machines she’s hooked up to, include two Canadians representatives for the company. I got to ask a bunch of questions, hold one of the units in my hand, and take some pictures. I learned more about the pump than most people would care to know, but it was very personally gratifying. It is wonderful to see engineering applied directly to the bettering of human life in a way that is immediately apparent, and so personal. With my day job the benefits to humanity are somewhat more indirect, so it was refreshing to see an application that was so obviously directly beneficial.
I asked if they were hiring, but I’d have to move to Boston so that’s not in the cards.
Impressive strides were taken today; quite literally. She walked up and down the hall. Of course, then she spent the rest of the day drifting in and out of sleep. Clearly we have a long way to go. Still, this morning when she first stood up (with much help, of course) her comment – along with something of a stunned look – was “oh, this is much better than yesterday.” She can feel the improvements.
But not all is roses and sunshine. She isn’t getting nearly enough nourishment, so she spends a lot of time sleeping and doesn’t have a lot of energy when she is awake. She will need the energy once physiotherapy really ramps up this week. The doctors aren’t overly concerned, but the lack of nourishment is the most significant speed bump at the present time.
For readers of a Christian persuasion, here are some prayer items:
- Improved appetite
- More energy
- Renewed muscle strength
- That her heart would continue to adjust to the device
Visitors are still unlikely for the next few days, but feel free to ask. Just don’t be offended if we say, “not yet.” If I were to guess I’d say the following week; but that’s just a guess!
As an aside, I’ve had a few people ask about the backup power that I previously mentioned. I think we are covered for now. Your input has been greatly appreciated.
Folks regularly ask how the kids and I are doing. The short answer is, “surprisingly well.” I expected this to be harder on the kids, but they are continuously in good spirits. Personally, I manage to balance life’s eclectic demands these days reasonably well, with plenty of help from family and friends. I’m in a decent mental space and getting enough rest. We are still well fed, with lots of food in the fridge / freezer.
Of course, if somebody wanted to buy our family round-trip plane tickets to Hawaii for some time in, say, November… well… I wouldn’t turn it down.
This week was spent at the “step down” unit. She no longer needs the kind of attention she might receive in an ICU; things are very stable. She seems to be back into a regular sleep pattern. She is eating and drinking properly. She goes for walks everyday. The biggest hurdle right now is her lung capacity which will improve with time and exercise. I don’t understand all the medical stuff, but whenever the doctors are examining her (e.g. ultrasound on her heart) they seem satisfied with what they see. There are other things wrong with her heart (no big surprise there!) but nobody seems alarmed at this time.
All the previous prayer items appear to be well under control, so I would suggest her biggest challenge right now is her lung capacity. The quicker that can recover, the quicker her overall energy level will improve. A second prayer item would be that we can all properly master the use and care of the technology.
Speaking of which, I had a chance to change the dressing on the drive line because that will be my job once we are settled back into normal life. I’m not a nurse / doctor so there’s a bit of a learning curve on that. However, the nurse said I did a good job, so I’ll take that little pat on the back. I’ll have to practice a few more times before she is discharged but I guess I’m off to a good start.
All the nurses and doctors on the unit are super friendly. In fact, the staff associated with VADs are above-and-beyond friendly, which is a good thing because they will practically be family for the foreseeable future. One of the doctors bought her a very meaningful and memorable gift. And when Denise first came to after surgery one of the first people she wanted to see was one of the nurses she really connected with. The bonds far surpass mere medical professionalism; these are not just patient-doctor, or patient-nurse, relationships.
The representative from the company returned briefly and reviewed all the alarms and records associated with the pump. He verbalized how impressed he was that everything was so stable. Again, good news.
It’s been a good week. It really has.
Updates will be fewer and further between, from now on. Progress is generally positive, with a few regressions, some plateaus, and unexpected speed bumps along the way. She is eating well, sleeping well, getting more exercise and the fluids are gradually coming off. There is more talk of the path to discharge, though it’s still a week or two out. In the coming days she will be slowly weaned off her IV medications giving her some more freedom. There is talk of day passes and even overnight passes to go home for a few hours at a time.
Even after discharge, though, we won’t ever be too far from the hospital at first. She has a lot of physiotherapy ahead of her, for instance, among other ways the medical professionals will continue to monitor and assist her. The road to total recovery will be many months yet.
But, the end is near. In a good way.
Yesterday was a very big day. The last remaining IV drip medication was taken off, so she is IV pole free. And the device that monitors her heart – with all those stickers on her skin and wires leading to the electronics box – was also removed. The only “device” she now has is the LVAD itself, but that’s permanent.
Then, to add excitement to excitement, she was granted a spur-of-the-moment pass to come home and have dinner with us! After that she and I returned to the hospital, grabbed a wheelchair and found a window with a view other than the same view she’s had for about 8 weeks.
Discharge is almost certainly next week, but the specific timing remains to be seen. There are a few medical loose ends to tie up; nothing critical. In the meantime she was specifically instructed to start spending more and more time off-unit, even away from the hospital; chaperoned, of course.
Post-discharge we can expect weekly trips to get blood work, and trips for physiotherapy. And the slow road to recovery will continue as she rebuilds strength and stamina. But she will have the tools necessary to facilitate a great recovery, and all the staff are excited to see her recovery.
Here is a picture of her enjoying our patio. Many people worked hard on the back yard during her stay in the hospital. She seems pleased with the results.
2017-09-15 Update – last one (barring unforeseen circumstances)
So Denise is not officially discharged yet. Officially, that is. However, she is… how shall we say this… “quasi-” discharged?
She was granted a two-night “pass” so she gets to spend Friday afternoon through to Sunday morning with us, but she has to go back Sunday morning. And if all is well Sunday morning she may get another night pass to Monday.
Why the technicalities? There are a few niggling health issues they want to keep an eye on in the coming days. There will be additional bloodwork and likely some adjustments to her medications before she is officially discharged. They don’t have any real reason to keep her in the hospital – the issues could mostly be dealt with as an outpatient – but if anything odd were to happen they would need to readmit her. And, it turns out, doctors hate paperwork.
Seriously? So you will gladly accept the challenge of cutting somebody’s chest open and implanting a centrifugal pump into their heart, but darn it if you will accept the challenge of filling out paperwork.
Oddly, I can resonate with that.
At any rate, we have no reason to think anything else significant will come in the next few days so, functionally, Denise is “discharged.” And thus ends this chapter of the journey. No more updates at this page, and my blogging will return to the more typical subject matter.
If you haven’t yet, though, check out some of the odd sights and signs that I found at the hospital. I have a few more to add that aren’t on there yet.