Wednesday, October 23, 2013

A Long Overdue Update on Hubby

Many of you have asked for an update on my husband, and I apologize for not having provided anything more extensive than brief updates to Facebook. The world doesn't stop when someone gets sick, and we've been overwhelmed trying to keep up with the day-to-day things while caring for him and trying to find a new normal in our lives.

It's been an especially tough year for our family. Last winter, my grandmother was diagnosed with cancer. The chemo hit her so hard, she almost died. Her doctor didn't think she'd survive the night, but she hung on, and bounced back when no one expected it. This spring, we learned she not only bounced back, but her cancer was in remission. Before we really got to celebrate that, SS's brother ended up in ICU after an infection got into his blood stream. He began to go into multiple organ family and we weren't sure if he would make it or not. He spent months in the hospital, and ended up losing one leg and part of his other foot before all was said and done. And then SS fell ill.

We've not really had a chance to deal with the emotional and mental fall out or truly celebrate the fact that we've been blessed time and again in each instance. So it's been an interesting and emotional few weeks here as we continue to work toward getting SS well and stop to process the last year and the changes and blessings it's brought to our family.

We've still got a long road ahead of us, but we're going to be just fine. :)

For those that have not yet heard, SS does not have lymphoma. Learning he didn't have cancer after being told he did was such a bright spot in a frightening journey for us. We were and still are relieved, grateful, and scared at the same time. We're also absolutely thrilled his doctors were wrong.

In late September, we finally got a final diagnosis. SS has something called chronic pulmonary blastomycosis with mediastinal lymphadenopathy. In English, that means he has a rare, severe fungal infection of his lungs and lymphatic system. The fungi lives in moist soil in certain areas of the United States, and is breathed in when spores are released into the air. In endemic areas, 1-2 people in every 100,000 are infected annually. Arkansas is not an endemic area, with less than 1 infection per 100,000 people a year. His team has no clue where he was exposed to this or how, and they will likely never know.

We've been instructed to wear respirators while doing yard work. It's just scary to think something this devastating may be lurking in our yard or little neighborhood. We've opted to forego yard work for the remainder of the year, both because SS isn't well enough to try and because we don't want anyone else coming into contact with this fungi if it is in our yard. The neighbors have decided to do the same just to be safe. We think that's for the best.

But back to SS...

Blastomycosis is a pretty terrible disease. It mimics cancer and other respiratory illnesses, and is incredibly hard to diagnos, as we learned intimately. As rare as the infection is, it's even more rare for it to spread to the lympathic system as it did for him. If not treated in time, the disease causes acute respiratory distress. Once that happens, the major of those infected cannot be treated simply because the damage to the lungs is too extensive.

By the time his team was able to figure out what was wrong with SS, the infection was very severe. We came close to losing him. Had it taken even another week or two, his doctors told us they probably would not have been able to save his life. The infection was simply spreading that fast and doing that much damage. I've never been so scared in my life as I was while he lay in the hospital bed, trying not to move because every time he did, his oxygen levels dropped dangerously low.

I cannot say enough have thankful we are that it didnt come to that point. His team began treatment as soon as they got the results in. The medications themselves have been hard for him. They're highly toxic, and he had a life threatening reaction to the first. His lungs shut down, and they thought he was having a heart attack because his heart rate jumped so high so fast.

Luckily, after consulting with other doctors more familiar with this sort of infection, his team opted to pump him full of medications to counteract another reaction, and restarted treatment the next day. He remained in the hospital for close to week afterward so they could keep an eye on him.

When he finally got to come home, he came with all sorts of medical equipment, a nurse, thousands of dollars in medications, and a list of instructions a mile long. We gave him infusions at home every 24 hours for the first two weeks, and then switched him to an oral medication that he'll be on for the next 6 to 12 months to fully treat the infection.

He's been home for a few weeks now, and is improving a little more every day. He's stopped losing weight. He's able to walk short distances without his oxygen levels dropping. His color is beginning to come back, and so is his appetite.

As of last week, the mass in his lung has begun to shrink... Enough so that he's finally pushing air into the lower chamber of his right lung. That is such a huge improvement! When they showed us the X-Rays the day they started treatment, the mass had taken over the entire upper and middle lobes of his right lung.


The big concern for him right now is kidney and liver function. One of the common side effects of the first medication is kidney failure. The big concern for the second medication is liver failure. That's pretty scary, but without the medication, the infection will continue to spread, damaging his lung and other organs before it eventually kills him

So far as we're concerned, that's not an option.

So his team has been monitoring his kidney and liver function on a weekly basis. Things are a little iffy kidney/liver wise, but slowing beginning to improve. 

On Thursday, we go back to the doctor coordinating his care to see how the kidneys and liver are doing this week. SS is really hoping the doc will release him to go back to work, but we'll see. Personally, I'd like to keep him home at least another week... if for no other reason than to make sure he's completely ready to be back at work. He's having problems with concentration and memory. I worry that he'll get into an accident driving. But I do understand his frustration. 3 months ago, he was leading a normal life, doing everything he wanted to do without help. It's hard to go from being independent one day, to needed help to complete even simple tasks like showering. I wouldn't handle that very gracefully either. 

In December, he'll go for a host of tests meant to see where is lung function is at and how badly the right lung was damaged from the infection. From there, his team will decide if they need to remove more of the lung or not. We're hoping they won't have to do so, but whatever is best for him is our motto right now. He's still here with us, and we plan to make sure he's around for a long, long time. We'll do what we have to do to make that happen. :)

Everyone has been really supportive, and it's been such a blessing to have so many of the people we love helping to lift us up through all of this. Our bosses, friends, and family have moved mountains to help take some of the burden off our shoulders while we get him better. We're truly humbled by the outpouring of love and support we've been given. Thank you all for everything.

xoxo,
Ayden

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1 comment:

  1. I'm so glad to hear things are starting to look up, and I'll keep both of you in my thoughts and prayers for a speedy recovery. I hope you have a great rest of the week! :-)

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