How My Husband Died

It's been nearly four weeks since my husband passed away.

His death still doesn't feel fully real.

Even though I knew -- we all knew -- he wasn't long for this world, it's hard to believe that he died. That Mark actually DIED and is GONE.

I think death is just very hard for us to understand.

He had survived so much in his 47 years. We thought he was going to die four years ago, but he didn't. He fought back just like he had done so many times before.

But not this time. This time was different.

***

My Husband's Obituary

As many of you may have heard by now, my husband, Mark, passed away.

He suffered cardiac arrest and although medical professionals were able to restart his heart and keep him alive with meds and machines, it was ultimately his time to go.

Mark died quickly and peacefully just before 6:00 PM on May 12, 2016.

There is much more I would like to say, and probably will, but for now, I just want to share the obituary I wrote.

How My Husband is Doing This Spring

Hello there.

The last detailed update about the state of my husband's chronic health problems was about two and a half months ago. There have been a few changes.

We now have another condition to add to the list: low thyroid (most likely due to taking the anti-arrhythmia medication, Amiodarone). This news actually gave us a little hope because Mark can take another medication to bring his thyroid level back up, and maybe that would help how he feels overall.

Since seeing his Endocrinologist, Mark's dosage of Levothyroxine has been upped twice. It has taken many weeks, but he is a bit less tired and bit more hungry.

One step forward....

How My Husband is Doing

I thought about titling this "How My Husband is Actually Doing" because there is the surface-y version and then there is reality.

Or his version. Because anytime someone asks Mark how he is, he will almost always, to almost everyone, say, "I'm good." While I, in the background, shake my head.

Sometimes I have to force myself to not snort at Mark's assessment of how he is. It's absurd to me that he can so easily prattle off the words, "I'm fine", without choking on them.

"How can you say that??", I'm thinking.

You Know, Like Groundhog Day

In September of 2014, infection was discovered in my husband's chest (where it was cracked open for bypass surgery four years earlier). He underwent a debridement and was left with an open wound 18 cm long.

For the next eight months, we did everything we could to heal that wound without surgery. We eventually caved and Mark had a plastic surgeon perform a muscle flap procedure, after which he spent a month in a rehab facility with strict sternal precautions.

A month after returning home, two small abscesses formed on Mark's chest. He went to the ER and was admitted to the hospital for several days due to infection. He came home on both IV antibiotics and an anti-fungal.

Just as those two small wounds were THISCLOSE to healed, another abscess formed right in the middle of his chest. A CT scan was done and Mark was referred back to a cardiothoracic surgeon.

Bullshit vs. Gratitude

I felt a whole lot of gratitude this week.

It's not that anything particularly wonderful happened.

I think what it it is, is that, at least for me, the circumstances of my life have taught me to easily notice all the things I could/should be thankful for.

To the point, honestly, where I am often dumbfounded by those who don't see. I am that person who, when listening to someone complain about something, can almost always find a way to spin the complaint into something to be grateful for.

Now before you go calling me Suzy Sunshine, it's not that I always arrive at my gratefuls without ever first feeling anger, bitterness or the urge to coat my feelings in sarcasm.

I am both easily frustrated....and easily thankful.

Waiting for Surgery

My husband is going to have a muscle flap surgery the day after tomorrow.

This comes after eight months of trying to heal a large wound left on his chest after debridement of infected tissue was necessary back in September.

We have talked, debated, hemmed and hawed ad nauseam over this surgery. At first we worried it was too invasive, with a lot of blood loss possible, and that Mark's body maybe couldn't handle it. Then Mark said he was having a bad feeling about it, which was unusual, because he usually says "do whatcha gotta do" to whatever the doctors say.

So we decided to stay the course with wound VAC therapy, which has included home health visits twice a week and wound care clinic visits once a week.

For eight months.

He is Fragile

My husband needs my help to get ready for a shower. He is currently sporting three different dressings that need to be kept dry.

I don't mind helping him, but I kind of hate seeing him without clothes on these days.

He's so thin.

6 Months of Trying to Heal

Sort of healing.

Halfway healing?

It has been six months since my husband was hospitalized for multiple infections and debridement of infected areas on his right heal and the middle of his chest.

I've been saying I would write up an update on how things are going that is more than a short quip on social media about doctor appointments or home health visits....

I've procrastinated, though. It's kind of hard to give updates on something that is fluid and ongoing. We haven't really had answers as to where things were going or any sort of end result.

Such is the nature of chronic illness. It's difficult to explain HOW THINGS ARE GOING when things, well, aren't really going anywhere.

Not to mention all the feels.

No One To Talk To

I might need to go back to my therapist.

The other night Mark and I were having some issues with each other.

OK, we were arguing.

While of course I've never liked fighting with my husband, I really hate it now that he's so much sicker. It feels wrong somehow. Like, why are we fighting with each other when we have so many other things to fight?

It feels counterintuitive.

For my part (because I can't just go speaking for Mark), I am trying to balance being a loving, kind, understanding and caregiving wife to a chronically ill man with the fact that he's also still just my husband. And yeah, sometimes my husband pisses me off. Should I let him get away with saying or doing things I don't like because he's sick?

Am I supposed to just roll over and let him hurt me because he could die?

Why I'm Really Looking Forward to Christmas This Year

In short, we've had one HELLUVA year.

I'm not usually one to begin thinking about gifts and decorations much before Thanksgiving (out of respect for the Day of Thanks), but this year is different.

I am eager and excited for the Holidays.

I am so ready to make merry.

My husband's health has been steadily worsening, most notably, over the past four years, since he had to undergo heart bypass surgery. A year and a half later, his heart went into Ventricular Tachycardia, a dangerous type of arrhythmia. We thought he might not make it through that, but he did, albeit weaker than before.

Mark struggled, but actually did pretty well for quite awhile after that crisis. Until this year. Literally all year long he has been fighting some battle or battles with his body. It is to the point now, that he has been on a leave of absence from work since the end of June and he hasn't been driving since mid-September.

He's not going to be returning to work, and we're thisclose to selling his car.

I am very overwhelmed as I type this all out....

Hold on.

Grieving for the Man He Used to Be

My husband is not the same man he used to be. Every health setback he suffers shoves this fact in my face.

It's been on my mind a lot lately.

After a good friend died seven years ago I participated in a grief counseling group with mutual friends of hers. I learned a lot from it.

One of the biggest things I learned, that I didn't already know, is that loss comes in many forms. Death isn't the only way we experience loss.

Mark is alive, but we are most definitely grieving the loss of the healthier man he used to be.

And all the changes.

10 Things I Think About When My Husband is in the Hospital

My husband has been in the hospital for a week now. He has had two procedures, one leaving an 18 inch incision running down his chest, and several cocktails of antibiotics.

He hopes each day might be his last (in the hospital, I mean), but then something else crops up.

Today is a regular dialysis day so they took him for the treatment....but his Quinton catheter is running slow now. Are they going to have to put a new one in? That's another procedure. Sigh.

I feel so badly for Mark. He isn't getting good sleep and he's hardly eating. A plastic surgeon was supposed to come see him about that chest incision, but just didn't over the weekend.

So yeah, hospital stays pretty much suck. And every time, there are many things running through my mind.

Admitted to the Hospital

It may seem silly for me to think about blogging when my husband has just been admitted to the hospital to treat an infection....

The thing is, he and that are a huge reason why I blog. It is my desire to blog my way through the craziness that is Mark's chronic illnesses. For me/us and for others. It's our story, our journey.

So I will keep writing.

I'm Having a Hard Time

This is going to be a completely selfish and self-serving post.

I haven't let on much to anyone, but I am having a really hard time lately.

Because my husband is having a really hard time.

The cumulative effect of all he's been through this year is weighing on us heavy right now.

No, there hasn't been any one BIG thing. It's been a bunch of small-ish (compared to, say, being in the ICU with a tube down his throat being told he was going to die) things.

You guys -- you lovely people who read my words here -- know this. You know this year has been all kinds of up and down (and upside down)for my family.

At this time, Mark feels like it's all just down.

He is so frustrated. Downright angry sometimes.

The Year of Surgeries Continues

I made mention on Facebook on Thursday that my husband was having another surgery, so I thought I should explain.

It was sort of sudden. I mean, we knew it was a possibility that the latest dialysis fistula "hook-up" (the 3rd) in Mark's left arm was diverting too much blood away from his hand. But we were for sure holding out hope that it wasn't.

After all the previous surgeries he's had this year (they now know and remember us on the 3rd floor of the hospital), Mark's vascular surgeon decided the fistula had to go. It was indeed stealing blood from his hand. He was in a great deal of pain from the lack of blood, and he has a couple of sores on his pinky finger that may not have healed because of it.

No Longer a Candidate for Kidney Transplant

I just opened a letter from the University of Washington Medical Center dated March 5, 2014.

I hadn't bothered to open it when it first arrived because I already knew what it contained. Mark's nephrologist had called us into his office to tell us what the UW transplant surgeons decided:

"Your risk of transplant surgery and immunosuppression outweigh the benefit due to multiple medical co-morbidities including coronary artery disease and vascular disease."

"We understand that this is a difficult time for you, but transplant is not the optimal treatment for all patients with kidney failure. Due to your high risk for complications, the physicians feel you will do better on dialysis. Our transplant team supports the best treatment plan for you as an individual."

It's All Topsy-Turvy

Do I want to write right now?

I do and I don't.

There are all these things I'd like to say, but I feel like it's not going to make sense.

Each and every blog post should be well thought out and have a point, right?

It's just that, everything is all topsy-turvy in my life at the moment.

Feeling Defeated

Life has been kind of extra stressful around the Hall house for a few months now (since February).

I learned awhile back that I have a tendency to lump a string of events together and let them inundate me. But I have been trying to keep things in perspective, making sure to take and deal with each thing as it comes, and try to leave the last thing in the dust.

I think I've been handling Mark's two dialysis access (fistula) surgeries, a five day hospital stay, his blocked iliac artery, a nasty sore on his left big toe, more than a couple of emergency room visits and adjusting to an income loss basically OK.

Then yesterday we went to what I thought was going to be a simple check-up with Mark's vascular surgeon. I thought he just needed to do a post-procedure follow-up sort of thing....

Yes, I Will Have a Holiday Weekend Brain Dump, Thanks!

It is the much anticipated Memorial Day Weekend here in the States!

It is so well liked because it is considered the "summer kick-off".

I don't want to rain on any one's parade (although it will probably rain on mine, literally), but class, do we remember what Memorial Day is really about?

Dead soldiers.

Yes, I did just say "dead soldiers". The title of this post says "brain dump" and it's on my mind, so there ya go.

When I'm out with my husband I've noticed that whenever he sees a veteran or active duty military, he stops, shakes their hand and says, "Thank you for your service." He did so just yesterday in the Safeway check-out line.