Jiggity Jig, Home Again

I'm home. Well, I've been home for about a week but I'm in Seattle right now for an appointment. I'm headed back to Portland tomorrow.

The last few weeks have been fine. Dull, even. Dull is a good thing at this point. Every indication is that I'm recovering quickly. That's what the doctors keep telling me anyway. It doesn't always feel like it. I am able to get out and walk around for a bit most days, though I need to take a break every couple of days when I over do it. My cardiologist explained it very well to me recently; I've been in heart failure for so long that my body has to readjust to getting what it needs to thrive. And that readjustment seems to manifest as some pretty significant pain. But I can walk around the arboretum for 30 minutes, walk the dog, or march up a hellishly steep hill (If you've been to the Seattle house, you'll know what I mean) so that's a trade off I'll take.

I'm still struggling to keep fluid off. My fluid load was probably the highest its been since leaving the hospital when I headed back home last week. So once again I'm on a high dose of a powerful diuretic while they monitor my kidney function. Diuretics and kidney function are not friends. Luckily, the diuretics have been more effective this round and my weight is diving to an acceptable level quickly.

I'm able to do a lot more around the house at this point. I'm doing a lot of the cooking, cleaning, laundry, etc. It comes with some shortness of breath, but that is probably due to the paralyzed half of my diaphragm and a couple of years of de-conditioning rather than issues with the heart. Every heart biopsy has come back with no sign of rejection. That's really good news.

Being home has been both good and bad. It's been amazing to have Melinda, Crash, and Aggie to pester on the regular again. Aggie definitely didn't know what to make of me being home for the first 10 minutes or so, she hid in the bedroom and then crept out and watched me from around the corner. We got things sorted out pretty quick, and she was trying to take my legs out from under me in the back yard in no time. Crash just sat next to me after I walked in the door, waiting for the attention he knew he was entitled to. Melinda has been super sweet and supportive as always. I don't deserve her.

As for the bad, it's taking me forever to establish a routine at home that works for me like I had in Seattle. I'm doing a lot during the day, but I'm constantly forgetting important things. I missed an appointment last week. I'm running out of medications before reordering them.  There's things I brought home from Seattle that I haven't found in the pile of boxes and bags that I can't ever seem to get through. Worst of all, I've had to make decisions on which medications are the most important to buy, since I can't afford to get them all. I've only missed taking some things that deal with secondary symptoms for a couple of days, but the money situation isn't going to get better until I can get back to work, which probably won't happen until January. I have 3 social workers and 2 nurse coordinators trying to help me find resources to deal with this, so maybe I'll be able to afford insurance AND medication every month. What a crazy idea...

Long Overdue

Me and Jaimie, not in a hospital

I got out of the hospital a week ago yesterday, that would be Monday, February 25th, exactly a month after getting my heart. The house I'm staying in is perfect, and my sister has been with me since I got here. I've had some issues; the medication gives me some awful tremors making it hard to write or type (I'm keeping an eye out for typos, but I'm sure some will slop through), and I'm starting to retain fluid again. The former issue will get better with time, though I don't know how long that will be. The fluid retention is more frustrating because my kidneys are struggling to work with the diuretics and I've been switched back to a drug that causes a ton of pain throughout my body, mostly my arms and legs. Fortunately, the pill form is less intense than the IV version, so I'm going to try and just tough it out. The other option at this point would be re-admittance to the hospital. I am going to fight that option as long as I can.

Despite all that gloom, I'm staying pretty positive. I have a lot of faith in my post-transplant coordinator and I'm getting used to the new routines of medications, testing, and preventative measures. When you go to the grocery store with a surgical mask and latex gloves, people get out of your way. I should have thought of this earlier.

I know things are tough at home for Melinda. She's working as much as she can and squeezing in frequent trips up here. She's done so much; handling the insurance switch, finding this house, getting me things from home, and keeping me relatively sane. I owe her everything.

But there are a lot of others I'm grateful to as well. Thank you to everyone who has donated, we've madde that money go a long way and hopefully can make it go just a little further. Thank you to Andrew, Jef, Brent, Jaimie, Jennifer, Lindsay, Shawn, and April who have all managed to make it up here to take a shift or two (or three) at being my health care ninja. Thanks to all of them and to Kim, Paul, Sara, Chris, Dave, Sonya, and Russ
for the help at home and all the rides and dog care. And thank you Snorton for the best string of texts I've ever seen.

My biggest regret is that so many people have given me so much of their time and effort that things are falling on fewer and fewer shoulders. I haven't felt like I needed to ask for help in a long time, but there is a small group of people left who are at the breaking point. I need a little more help. Mostly help with the dogs and of course there is plenty of extra room up here if you want to stay in Seattle for a couple of days. I'm required to have someone with me at all times in case I fall and break my hip or something. You might even get to give me a shot!

Anyway, I hope to be able to repay all the kindness when I get home, maybe with gold doubloons or chocolate chip cookies. If you want to help, you can do one of the following...

Email me: astroloach@gmail.com

Contact the group (most of the people mentioned above):
      cyborg-heart-care-team@googlegroups.com

Contact the group managers at (and the 't' isn't a typo): 
      cybortheartcareteam@gmail.com

Thanks again.

The Good, the Bad, and the Ugly

My sister the health care ninja

Some good news: While I've had some tentative discharge dates thrown around over the last 2 weeks, it's looking real likely that I'll be out of here by the end of the week. My strength continues to improve; I can do several laps of the unit at a time and I'm doing it 3-4 times a day. My fluid load is way down, though I have a little ways to go yet. I've got no chest tubes and no IVs and can stand without help. My sister Jaimie is here and Melinda is going to be back up this weekend.

Some not so good news: I still get quite short of breath very quickly, and it was determined this morning that my diaphragm is partially paralyzed. Essentially, the left half of my diaphragm doesn't move when I breath. It's likely that a major nerve was damaged during the surgery. It's possible for it to heal, but there's no guarantee, and it's not going to improve for at least 12-18 months. The pain from having my sternum busted open is pretty bad, and with much of the remaining fluid settling in my lungs, the nasty cough doesn't help.

Some...other news: My surgical sites had been healing nicely until a few days ago, at which point they started oozing at different points. Nothing dangerous, but real disturbing to wake up covered with blood, and then having the dressings soak through every couple of hours. Anyway, that seems to have resolved.

Still Here

It feels like I'm burning through my luck points. I suppose that having to be in this position at all Isn't particularly lucky, but things beyond my control seem to be falling into place for me right now...

1. I got a heart without having to get the LVAD. That was huge, and not something anyone was expecting.

2. My progress in recovery has only been hampered by some very simple, common issues. There have really been no major setbacks.

3. Despite the fact that my kidney function is keeping my anti-rejection drugs at a relatively small dose, as of the biopsy yesterday morning there is exactly zero sign of rejection.

Awake!

4. I've had people here with me every day since the surgery. The first thing I remember seeing when I woke up is my lovely wife's face, and I've had to kick people out to sleep rather than feel alone for a moment.

5. While we're at it, my wife and friends have gotten a 3 bedroom house for my long Seattle stay. Tons of awesome people have donated to our fund, and both of my sisters will be out here soon. It has to be luck that I've found myself surrounded  by so many amazing people, I can't think of a thing I've done to deserve this.

So, right now my goals are to unload a few more liters of fluid, get my chest tubes out, and get stronger. The fluid seems to be finally coming off at a good pace, starting about 48 hours ago. The chest tubes that drain the chest cavity will be removed once the daily amount of drainage is about half what it is now. I figure they go in the next couple of days. Building strength is the hard part. I need to get up and out of bed and walking the halls, a feat I only first accomplished this past Saturday- that's a week since I woke up from surgery. It's a whole production with safety belts, walker, IV tower (pole does not do this thing justice), and one or two people to chaperone me. All of that for maybe 5 minutes of walking. And it is hard. I find that sitting up in a chair for much more than an hour drains my reserves, a walk around the unit is just exhausting. But it's getting better, and I know it will get easier the more I do it.

I miss these guys hard.

Today on my walk, or while I was posted up in the hall catching my breath, a man maybe 10 years older than me came around the corner and asked if I'd just gotten a new heart. I told him I had and he offered his congratulations. I asked about him, and he told me he'd gotten a transplant 6 years ago, and now it's going bad, so he's here hoping for another. But he immediately followed that Up by saying that the last 6 years were the best of his life.

A lot of people want to know if I feel 'different'. I'm not sure that I do, other than feeling lousy with pain and weakness. I will say that I try not to spend too much time thinking about the fact that there is a new heart in me, and when I do I don't get much past the fact that I probably shouldn't be here. But I'm still here, and my luck is holding.

It's Happening

This is going to be a shorter post than it ought to be, but my movement is limited in was that make it difficult to type. I'm still in Seattle, it has been 16 days since my initial trip to the ER in Portland. Three days ago, I had a run of irregular heart rhythm and low blood-pressure that turned into a moment of crisis in my hospital room. In the end, they had to put in a balloon pump to assist my heart function, with an LVAD still planned for Friday (today). As a consequence of having the balloon pump, my status on the waitlist for transplant jumped significantly, and yesterday morning I was told that they had found a matching heart. I have a heart.

It's 4:30 AM Friday morning and in two hours I'll be taken down to be prepped for surgery. In about three hours, it should be underway. It's hard to describe how I feel right now; joyful, hopeful, terrified...

In some ways the hardest part of this is just beginning, because now it's up to me to take this opportunity and make something of it.

See you all on the other side.

And now Seattle

I'm in Seattle. I was brought up here from Portland by ambulance last night. I don't know how long I'll be staying at the UW Medical Center, a couple of days to a week, maybe. I should probably start at the beginning.

Serious face in Portland

A week ago (1/9/2019), a friend took me to the ER in Portland. I was have a real hard time with my heart racing and shortness of breath. Turns out, I was carrying a bunch of fluid in my lungs (Pulmonary Edema). So, I was admitted to the hospital with the goal of reducing the excess fluid in my system with diuretics and restricting how much I drink. They also ran a bunch of tests to make sure there wasn't anything else going on, but there was nothing interesting to report.

The next morning, I placed a call to the transplant coordinator in Seattle to let them now what was up. The team at UW, being responsible for me as a potential transplant recipient, wanted to be involved in my care. They were in touch with my doctors in Portland, and asked that I be transferred up as soon as a bed was available.

Serious face in Seattle

By "available bed" they really meant an empty room with no one local waiting for it. It wouldn't make sense to take me out of a safe situation if someone in Seattle needed the care. So, it wasn't until the following Tuesday night that I was loaded into an ambulance and taken up I-5.

So, I'm feeling much better at this point, but there is still fluid left to deal with. I was on some real heavy doses of diuretics in Portland, and everyone involved decided my kidneys needed a break. They are trying out new medicines and tweaking with doses of others to improve my heart function and how I feel in general. I think, whether or not they are successful, what can be accomplished with me through medicinal management is just about run out. They may send me home feeling better, but that might not last more than a few weeks. I just have a feeling that there is going to need to be a more aggressive intervention. If not a transplant soon, than an LVAD.

Weight: 210 lbs, Symptoms: Shortness of breath, light-headedness, constant

fatigue, some nausea, anxiety, depression

Happy Birthday to Me

Xmas dinos and blankets, Love our tree/

So, it's 1 AM and I have that boring, old run-of-the-mill type insomnia. It's not due to my symptoms, I'm just not able to stay asleep. Seems like a good time to catch up here.

Yesterday was my birthday, the day before was Xmas, I got to spend two awesome days with Melinda playing games, watching movies, and visiting with her family.

If this is the first place you're hearing about it, I AM on the transplant wait list. It was a bit anti-climactic because I was on the wait list but on hold while they sorted insurance details out. I didn't expect to be activated before the new year, but they got it done before Xmas. So now I'm waiting for a phone call that might come anytime day or night, and I'll have 6 hours to get to Seattle. My bag is packed.

Waiting for birthday pizza.

Symptomatically, I've had a couple of really rough days in the past week or two, but I'm currently doing fine. Every time things get rough, I feel like I'm teetering on the edge of needing the LVAD heart pump, but even that has become a less daunting prospect. Turns out the recovery time for the LVAD would be mitigated by my moving up significantly on the wait list, so it's not the extra 12-18 months I'd worried about. It might add no additional time at all, but no one can predict when the right heart will be available.

All-in-all, by biggest complaint these days is how bad my shortness of breath is. I can barely manage to walk a block at a reasonable pace, and two or three blocks at my snail's pace is enough to require a sit down. Doing things like laundry, dishes, and cooking has become a real challenge, and won't be possible for much longer. I vacuumed the rug the other day, it felt like I'd run a marathon.

Weight: 212.4, Symptoms: Severe shortness of breath and fatigue, mild nausea, some dizziness