Living on the frontlines

The blog is back, I hope

noreply@blogger.com (Heather Kirkwood) — Fri, 10 Nov 2023 04:01:00 +0000

What started as a way to share news about HPS and what it is like to live with Hermansky-Pudlak Syndrome has fallen apart badly! There are a lot of reasons for this. Some are related to health. Some are related to time. And some are related to mental health. Finally, the last obstacle was technical. I lost access to my blog. Every time I started to work on regaining access, something interrupted the process and I’d have to start all over again.

Before you say it, I know. A blog is so old school. Haven’t you heard of a vlog Heather? Or maybe TikTok? I know my limits. I have a great face for radio. I’m not particularly eager to film myself. When I do, I feel I need to spend extra time putting on makeup or fixing my hair. Yet, often when I have the time to do something like this, it is early in the morning or late at night. I don’t want to “get ready.” I’m having a hard enough time squeezing this in without staging myself. Grin.

I’m trying to start with small goals. Right now, I’m hoping to write a lot, but the goal is once a week. If I can do more, great. If not, I’m going to try not to beat myself up about it.

Some content will be serious. Some will be very much stream of thought. Some will be just stupid things that float into my brain. I’m not out to build a huge audience. I’m out to create a record.

So, let the blogging begin again…..trying very hard not to add a qualifier like, I hope.

Hundred People Search Update

noreply@blogger.com (Heather Kirkwood) — Thu, 17 Dec 2020 15:42:00 +0000

It's been a rough summer and fall for me, so I am very behind on posting updates. More on that later. We have added eight new HPSers to the registry in these past few months, which puts us at 80 to go on this year's Hundred People Search. We are behind where we usually are, but given the sort of year it has been, I think that is to be expected.

Hundred People Search Update

noreply@blogger.com (Heather Kirkwood) — Mon, 20 Jul 2020 14:40:00 +0000

We have added two new HPSers to the registry. This puts us at 88 to go on the Hundred People Search (HPS). Both of our newest members are from outside the United States. It is so important to find our fellow HPSers overseas, as well as in the U.S. We don't want to leave anyone behind. And, who is to say the cure will be found here? There are brilliant scientists all over the world. The HPS Network currently has a program to reach out to scientists from around the world interested in HPS research. Often they want to know if we have HPSers from their given countries in our database. We are a rare disease. We can't afford to have our efforts separated by borders.

Hundred People Search Update!

noreply@blogger.com (Heather Kirkwood) — Tue, 30 Jun 2020 16:33:00 +0000

It has been a while since I've posted an update. Sometimes it takes time for people to work their way through the testing phase etc. We have added four more new HPSers to the registry. This puts us at 90 to go on this year's Hundred People Search (HPS). Outreach is harder during the pandemic. We can't attend conferences or hold conferences and outreach events. It is a worry because there is actually a lot going on in research just now, and soon we will really need all HPS hands on deck to push things forward. We need to get creative!

Going where no human has gone before

noreply@blogger.com (Heather Kirkwood) — Sun, 28 Jun 2020 05:35:00 +0000

When I was in elementary school, if an adult had asked me what I wanted to be when I grew up, and I’d given them an honest answer, I’d have told them I wanted to grow up to be a pioneer in the later half of the 1800s. I never gave this answer to inquiring adults, time travel being impossible. It was, however, what I really wanted to be.

I LOVED the Little House on the Prairie series. I read them over and over. It didn’t hurt that I was lucky enough to touch this era of history, literally touch it, pretty often. My dad was stationed at the Air Force Academy then. Our family spent many weekends on four-wheel drive roads in the back country of Colorado. The mountains were littered with “ghost towns” from the 1800s gold rush. If you went to the towns (and the mines) that could only be reached with an off-road ready vehicle, or more remote still, only by foot, there was so much to find. We were like amateur archeologists.

We found town buildings and cabins, some still creakily holding on to standing upright. Others had fallen around themselves probably decades before. We explored the ruins, and I used to have a collection of found treasures such as pieces of broken china, the leg from an old iron stove, many nails etc. Looking back at it with my sensitivity to infection, it was a tetnus wonderland. Thank God I never cut myself on any of it!

Closer to home there was a cabin in the woods near where we lived on the Air Force Academy. It was maintained as a historical site and built by one of the settling families in the Colorado Springs area. (Read a bit about the cabin here). I used to spend my summers dressed up like a pioneer (or as close as I could come to it.) We made a covered wagon out of our Red Flyer wagon, and being the bossy big sister I was, I’d press my little brother into service as the horse, or as the “Pa” depending on the need at the time. We spent hours on the porch of this cabin (it was kept locked) pretending it was ours.

There was something appealing, even romantic, about the idea of being among the first. Not understanding just how hard the work was, playing at it was so much fun! It was only as I grew older that I appreciated the gambles and sacrifices made by those who moved westward. (Or understood how negatively they impacted the peoples they encountered.)

Today it is hard to be a true pioneer. There aren’t as many firsts left. There aren’t many places you can go and not know when, or if, you’ll be able to communicate with the loved ones left behind. There aren’t many places you can go and likely never be able to turn back.

But the lack of pioneering opportunities will not last forever.

In 2013 my imagination was captivated by the Mars One project. They sent out a global call for volunteers to be the first on a one-way mission to colonize Mars. The project went bankrupt, received widespread criticism as to whether the project was feasible and was called a scam.

I wasn’t one of the 202,586 volunteers (the number of volunteer applications Mars One said they received, although some have suggested the number to be much lower) from around the world who applied for the mission. Were it not for HPS, I might have thought about it. Somehow I thought traveling as far away from a major medical center as anyone has ever gone wouldn’t be the wisest move on my part, even if the selection committee was willing to overlook it.

Yet, anyone volunteering for the mission would have to know they would be giving up certain things, like hospitals. They’d also, in pioneering tradition, give up hugging loved ones on holidays or life conveniences we probably haven’t even thought of yet.

Someday it will happen though. Whether it’s the moon, or Mars or space stations, the next frontier, I think, is just a matter of time. Yes, probably a long time.

Amid our pandemic and racial strife, another news story passed quickly through the headlines on May 30th. SpaceX, a private company and not a government agency, provided the rocket and ship to deliver two astronauts to the space station. Private companies coming into the mix seem like they’ll increase the likelihood of colonization. Royalty used to finance initial exploration, but somehow, profit seemed to work its way into the picture to keep things going. Perhaps we should think about that as we inch toward the future. Could we do it better this time?

There are so many obstacles to overcome to make this sort of dream ever happen. It must have seemed that way in the 1500s when people thought about a place across the vast ocean.

I won’t get to be a part of it. I doubt that even if I live many more years, I’ll get to see it. But when my mind wonders, I can’t help to think about it. I can’t help to think what the lives of those future colonists will be like, and how they will impact humankind in general.

There are still so many places to explore and unknown things to learn.

Pandemics and rejection

noreply@blogger.com (Heather Kirkwood) — Tue, 23 Jun 2020 04:27:00 +0000

I’ve often thought how lucky I am that I’ve gone through life able to avoid direct experience with any major negative world event. I’ve been blessed to have a front row seat to several world events, but not negative scary ones. If you look at history, the usual time between things such as wars, and it really is quite extraordinary. Yes, we’ve been at war, even attacked on Sept. 11, 2001, but I’ve never really felt my life was in direct peril – not really. I’ve never had to think about going without anything I could afford. I’ve never worried that my house would be bombed, or that I’d be kept a prisoner for some, hopefully, unjustified reason.

I still count myself very blessed in this respect. History has marched on though, and it might just have caught up with me.

For these past few months our world, yes the whole world, has been experiencing a pandemic. It has impacted every aspect of our lives no matter where we live. Personal liberties have been curtailed for the good of society as a whole. Together we’ve all made huge lifestyle changes. Children have been sent home from school and adults that could, have been working from home. And for me, a very immune compromised post lung transplant patient, I do truly fear for my life. I don’t feel it is an exaggeration to say I feel like a prisoner in my own house. Every once in a while I get out for some medical reason, but otherwise for months (even before the pandemic) I’ve been on a kind of germ house arrest. I’ve learned I’m a wimp and had better never do anything illegal. I’m going bananas in my 500-square-foot apartment with its TV, music and internet connection to the outside world. I know I couldn’t handle anything worse! Yep. Wimp.

Along about November I started experiencing some trouble with my new lung. It was gradual this time, not a quick onset like the previous bouts of rejection. I ended up in the hospital, again, and underwent several therapies in hopes of curing the rejection. Lots and lots of steroids, a treatment called IVIG and apheresis (where they took blood out of my neck in hopes of removing the offending antibodies, and then pumping the now “cleaned” blood back into my neck.)

We thought it worked for a while, but once again my spirometry began to fall ever so slowly. Back into the hospital again, then out, then back in from an infection I seemed to have picked up at an IV site. Out again, and then, yep, back in, this time for a bigger canon in the rejection arsenal – thymoglobulin.

Everyone who has an organ transplant is immune suppressed. The suppression is because of the medications we take to trick our immune system into not noticing the foreign body in its midst and mounting an attack against it. Add these rejection therapies, and well, you get extra immune suppressed.

It’s a great state to find yourself in amid a global pandemic the likes of which the world hasn’t seen in a hundred years. Besides being scared to death my body will reject my lung, I’m scared to death that if I touch the railing in my apartment building to steady myself, and forget to wash my hands immediately afterwards, it could be a deadly error.

I haven’t blogged much lately, despite everything going on in my medical world and the world in general. I have lost a lot of lung function. It is very possible I won’t get it back, although I intend to keep trying. My muscles are very weak from all the treatments. It’s as if I’m starting all over again. Walking a fourth of a mile (around my block) is a huge victory right now. It is frustrating to have come so far, gotten a little taste of an almost normal life for a few months, and then to be kicked back to the beginning and not know if all the hard work will ever even gain me any ground.

Disability is not enough to live on in the Washington DC area, so I work as much as I can to pay the bills, yet not lose the health insurance that pays for the literally hundreds of thousands of dollars in medical bills that seem to be a way of life now. I get tired easily, so I feel that if I’m feeling well enough to blog, I should be doing something I might be able to turn into income. I do think, however, that blogging is good for my mental health and that somehow I should make more of an effort at it.

I’ve also avoided blogging because, well, I feel so moody. Between the medications, the rejection and the pandemic, there are days I’m working really hard to seem pleasant. It might be a good thing I live alone, because if someone else were here I’d likely bite their head off often for no good reason. Finley is pretty lucky he’s so cute. Yelling at him would be like yelling at a baby. I just can’t do it. Thank God I have him for company.

In the beginning of the pandemic, as hard as it was, there was this sense of national unity. Everywhere you looked there were memes, music parodies or TV commercials declaring our unity to fight the pandemic. People followed the directions of medical experts and wore masks, stayed inside and many have paid a personal financial price to do their part.

We made jokes about the lack of availability of grocery items – especially toilet paper - and people banded together to start making facial masks when none could be found.

Grocery shopping was especially fun for me since I was not allowed to leave my apartment. I created shopping lists on pretty much every grocery delivery service I could find. I ended up spending more money than usual because I ordered way more than I needed. Even if the delivery systems would let you order an item, more often than not when they went to put your order together, the item would be out of stock. So, instead of ordering one type of paper towel, for example, I ordered five different brands of paper towels hoping at least one would be in stock. My sister-in-law and other family and friends would occasionally bring me things I was having a particularly hard time getting a hold of – like yes, toilet paper and of course, Clorox or Lysol wipes to try to keep everything free of germs. I ended up with some of the wackiest combinations of things!

The shortages are improving. I’m able to get a delivery time much easier now. For everyone else things are beginning to open up. They have a light at the end of the tunnel. But for me, an end to my germ jail sentence is no where in sight. I can’t help but feel a little jealous of people who can now go to a restaurant or get their hair done. I’m still extra suppressed from the rejection treatments. As things open up, there will likely be some increase in the virus transmission again. For me, that means more germ jail.

There are days when I seriously contemplate an escape. I knew a transplant was trading one lung disease for another, and that some of us had more post transplant medical issues than others. You go into it hoping for the best. You hope you’re going to be the one running marathons (even if you never ran before your transplant!) I somehow wasn’t contemplating being alone for months and months, and possibly indefinitely. But then I think of how precious this gift was from my donor. What if being able to hang in there a bit longer is the difference between this lung (which clearly isn’t going to last forever) making it several more years or not making it at all?

I am climbing the walls in here. Some days I feel like my brain is going to turn to mush. Yet, thanks to technology I’m able to talk to friends around the world. I’m able to work on HPS stuff, even if it never seems like enough. If my energy levels perked up (and they have been improving) I might find the stamina to do what I have to do, and still be able to write and paint. It isn’t all I hoped for, but I suppose I could adjust.

Still, what I wouldn’t give to walk around public streets and go to Starbucks!

Hundred People Search Update

noreply@blogger.com (Heather Kirkwood) — Mon, 13 Apr 2020 19:02:00 +0000

Today we added two new HPSers to the patient registry. This puts us at 94 to go on the Hundred People Search. Please keep up the great outreach! It is our biggest need right now - to grow the database and ensure no one with HPS is left behind.

2020 Hundred People Search - H.P.S.

noreply@blogger.com (Heather Kirkwood) — Mon, 16 Mar 2020 19:51:00 +0000

It's that time of year again! It's time to kick off the annual Hundred People Search campaign - our challenge to the HPS community to help us reach out and find those affected by HPS who either don't know about the HPS Network, or don't know they have HPS.

We all understand how scary having HPS can be. But consider what is really scary - having HPS and not knowing it. Think about developing pulmonary fibrosis and receiving a diagnostic open lung biopsy that causes excessive bleeding. Now that's scary, potentially deadly and completely avoidable. What about finding yourself in an auto accident. You do have injuries, but the doctors at the emergency department don't think your injuries are so severe that they should bleed this much. They can't explain it, but they can't make the bleeding stop either and the situation grows more dire with each passing moment.

These are just a few of the things that can happen when you have HPS and don't know it. Not getting tested, diagnosed and educated about the syndrome won't make a person not have HPS. It just makes living with it more dangerous.

On the flip side the HPS community works tirelessly fundraising and supporting science to one day find better treatments and a cure. Things are better for those with HPS than they were a decade ago. To keep that momentum going, our researchers need to know that they can bet their careers on us. We want their help. We will participate in their research. We will work hard with them to build the better tomorrow, but that means finding more people affected by HPS.

So, join us! This year we are kicking off the Hundred People Search with two more HPSers, making our starting point 98 to go on the Hundred People Search!!!

Hundred People Search

noreply@blogger.com (Heather Kirkwood) — Tue, 28 Jan 2020 18:35:00 +0000

We've added another person to the HPS registry. This puts us at 78 to go for this year's Hundred People Search. We are a bit behind where we usually are so close to our count starting over again.

The November rejection saga

noreply@blogger.com (Heather Kirkwood) — Wed, 22 Jan 2020 18:16:00 +0000

I stress a lot about laundry. I stress about it because I share one washer and dryer with nine families in my building. I can’t always do my laundry when it’s convenient for me. I also stress about it because I have this nightmare scenario in my head that something will happen, I’ll get admitted to the hospital again, and I won’t have any clean clothes to have anyone pick up. People I don’t know well enough to be aquainted with my underwear might have to get it from my apartment, wash it, and bring it to me. Over these past few years my brother, for example, has been in my panty drawer way more often than any brother should.

And so it was the day before Halloween this year. In Sept I was doing the best I’ve done so far post transplant. I could go into the city, or anywhere, and not worry that I wouldn’t have the stamina to do what I needed to do. I was still getting easily out of breath with stairs and hills, but I was doing great. In Oct. it seemed like there was a slow decline, so slow it was hard to notice. My spirometry would be down one day, then back up the next. I had a cough, but wasn’t sick otherwise and chalked it up my usual allergies. My cough has never completely gone away since transplant. I had some thrush too, so I figured that wasn’t helping either.

But then, right before Halloween, the bottom dropped out of my spirometry. Luckily, I happened to have a clinic appointment the next day. I brought a tooth brush and my computer to the appointment because I had a funny feeling I was going to get admitted. I hate to bring too much because I don’t want to feel like a whiny drama queen if, in fact, they don’t admit me. So far, however, every time I’ve been admitted, I knew they were going to do it.

After the usual wait, a bed was found and tests were ordered. The CT scan showed what the doc described as “gunk” in the lower part of my transplanted lung.

Infection, we thought, and so IV antibiotics and cultures were ordered.

There probably was some infection at work, but several days later I really wasn’t much better. Acute rejection was the next thought. Just as before, several days of high-dose steroids were ordered. I dreaded that because of the leg complications I had last time, but if I had to choose between breathing and walking, it was an easy choice.

After the treatment they sent me home. I wasn’t very much improved, but I went home determined to continue my exercising and puffing into various contraptions I’ve collected over the years. I was going to conquer it.

Three days later I got a surprise call from one of my transplant coordinators. A test they had ordered while I was in the hospital had come back and showed that my immune system was on to the presence of my new lung, and wasn’t happy about it. The immune system invaders were on the move, and I needed to come back into the hospital for some treatments to send them back into retreat, or even better, eradication.

At least this time I got to pack for myself. And yes, I had done some laundry, but not all. I did have to send a little bundle to my sister-in-law, but no one had to rummage through my things to gather it. Always a silver cloud right?

I underwent several rounds of an apheresis treatment. They removed A LOT – really a lot, liters and liters – of plasma from my blood. The plasma contained the antibodies we needed to get rid of. They then put the rest of the blood back in my body. They do this through a port they put into a vein in your neck with two large tubes. It doesn’t hurt. The biggest hassle is each treatment takes two hours. Did I mention they also put me on lasiks? Oh yeah, that part was fun! You cannot get up and go pee in the middle of this. There are tubes running in and out of a connection in your neck, and moving them could cause big trouble.

Unfortunately, your plasma doesn’t just contain angry antibodies after your new lung. It also contains all kinds of good stuff you still need. One of these is a blood clotting factor called Fibrinogen. My pee wasn’t just red. It looked to me like it almost turned black. Very alarming, let me tell you! Your skin often gets dry in a hospital, and suddenly the least little unconscious scratch resulted in bleeding, and not just a little that you could put a band aid on. Couple this with my underlying bleeding issues because of HPS, and well, I felt very fragile. Thankfully, as the treatments ended, the scary pee and easy bleeding returned to my normal.

When that was complete they gave me several injections of a drug that is on label as part of a cancer chemotherapy regimen, but which has been found to help with this antibody issue.

During all this I picked up another bug to add to my collection. It was a bug you usually get in hospital settings – so no mystery there really. I went home a month after the pre-Halloween admission with IV antibiotics and the help of a home health care nurse to check up that I was doing the IV correctly.

Just as before the leg numbness came back. This time, however, I knew what it was so it wasn’t so scary. It is now mid January and I am still not back to my baseline from a breathing standpoint, or a leg standpoint. That is the most frustrating part. Every time this happens, it takes months to battle back again. It’s like you’re climbing a hill, and someone gives you a little shove to roll you right back down to the bottom again.

There are, of course, a lot of other dynamics to these few months, but I wanted to finally at least post what happened. At the time I was leery to put out too much because I didn’t know a lot about what I was going through. I didn’t want to put out anything inaccurate. I may not always succeed, but I do my best. When I started to get better, there was a pile of work I needed to catch up on and blogging had to go to the side.

Now, I guess I’m back to that little panicky feeling when my laundry isn’t caught up. What if….what if that cough, that little catch-you-breath moment is the sign of something bigger. What if I need to go back into the hospital and I don’t have any clean underwear? The dread!

Anyone home?

noreply@blogger.com (Heather Kirkwood) — Mon, 14 Oct 2019 15:38:00 +0000

Where have all the staffers gone? It seems like that should be the line of a song. Grin! I just wanted to post a little about what is going on behind the scenes at the Network. I know those of you who actively follow the HPS Network’s social media etc. or who have needed things from us lately, might have noticed we’ve been less active online and maybe not as quick to respond to non-emergency issues.

There are a lot of times things are quite busy in the HPS Network offices, but we can’t always elaborate about everything happening. It isn’t that it’s a huge secret exactly. It’s more the boring nuts and bolts of keeping the ship afloat and the trains running (hopefully at least mostly on time.)

There are times we are working on things that just can’t be announced yet for lots of reasons. This is just like any other business. Sometimes things fall through, or developments can’t be announced until all the players are ready. Sometimes we are just so busy working to move the cure forward, we just aren’t in a place where we can stop and tell you about it.

This past month the office was working on a large grant application. Applying for grants, at least to me, a non-professional grant writer, feels like applying for scholarships when I went to college. You apply for lots of them, and if you do well, you get a few.

The difference is grant applications are usually more involved than an essay question and a few letters of recommendation.

We don’t know if we will win this grant. It would be a game changer for us if we did, so it was worth putting some of what we normally do on hold for a few weeks to try for this grant. There are not many funding opportunities that are made for rare disease groups. Rare disease groups are not all created equal. There’s a huge difference between a disease that is rare, but affects 200,000 people in the US and one that is rare and affects maybe 1,500 people in the US. Some groups have different socio-economic challenges among their memberships that others don’t. But for this grant, at least this time, it didn’t feel like we were trying to push a square peg into a round hole. I pray that because it felt like we were such a good fit, that our odds, and thus our time investment, were worth taking a chance.

I’ll blog more about this grant opportunity when the results are in – even if we don’t get it. It’s a very exciting project and it will help all rare diseases eventually.

Now we are on to the next crisis.

We have dreamed of a new website for a while now, but we haven’t had the funds. Or, perhaps I should say, we chose to put the funds into outstanding research opportunities and thus we couldn’t afford a complete overhaul of the Website with everything we’ve dreamed of. As happens so often with the Network, we have a wonderful volunteer that is helping us at least give the Website a facelift. She’s done a lot of work and has been patiently waiting for us to get back to her so we can go live with the new look.

Much of our content needed to be updated, and we are very careful about anything we publish that is in any way medical, so it all has to be triple fact checked. We want to get at least the bones of the new look live so any donors or granters researching us can see it. So, now we are putting a few things aside to get this project finished.

This is why a few other things have fallen to the wayside a bit. I have not done a great job keeping up with our social media, for example. We’ve had a relatively reliable monthly e-newsletter going out, but in Sept, and possibly Oct it had to be put on hold.

It is frustrating because everything we do is connected and meaningful to our mission. If it weren’t, we wouldn’t do it. We don’t have time to waste! HPSland is like a woven tapestry. You can pull a few threads out from time to time, but the product is diminished. If you do it too often, all the connected parts come unraveled.

So, please be patient with us while we try to do what we need to do to keep moving toward our goal – better treatments, and someday the cure!

Hundred People Search Update

noreply@blogger.com (Heather Kirkwood) — Mon, 30 Sep 2019 20:05:00 +0000

We've added a new HPSer to the HPS registry. This puts us at 79 to go this year. We had a number of new people coming in, but it has really fallen off through late July and August. Thanks to everyone who is keeping up the outreach. We don't want to leave anyone behind - especially with all the exciting things happening.

The healing power of Starbucks

noreply@blogger.com (Heather Kirkwood) — Tue, 27 Aug 2019 20:00:00 +0000

(Note: actually posting this a few days later.)

Yesterday it was one year and six months since my single lung transplant. In some ways it feels like yesterday, and in other ways it feels like so long ago.

In the beginning, post transplant time starts to take on strange properties. It feels like everything moves so slow. You move slow. You think slow. Everything seems complicated and foreign. You’re so anxious to get your life back. You’ve got all these things you were looking forward to doing after your transplant and it feels like you’ll never get there. There are still things on my post transplant wish list that physically I can’t do, but even now, even a year and a half later, I’m still making progress. There were some complications that slowed things down early on – although my team probably wouldn’t put it that way. They’d tell me to quit comparing my recovery to anyone else; we’re all different and there isn’t a schedule to this. Okie Dokie. Got it – NOT. I’m not wired that way. Grin!

I have savored even small mile stones. I think about a week and a half, maybe two, post transplant the doctors told my dad he could bring me a Starbucks. No ice etc. etc. etc……but I could have a hot latte. Mentally it was a turning point. It was one of the first parts of my “normal” that I reclaimed. It was a sign things were getting better…we were moving forward and discharge might actually be in sight.

I was on a kind of germ house arrest for the first four months post transplant. My new lung was high risk, and sure enough it came with three infections. It took some extra work in the beginning to deal with that. When I finally got out of what I dubbed, “germ jail” one of my first destinations to celebrate was Starbucks. I do my best thinking in the shower and at coffee places. (Maybe TMI?) It was truly exciting to get to go have a latte! It felt normal!

Getting a latte on or about the 19th of every month became a kind of tradition for me. It’s a chance to remember I made it another month. It’s a way of marking moving forward, sometimes even when things felt like they were moving backwards.

So, here’s to a year and six months – bottom’s up!

Where has Star Trek gone?

noreply@blogger.com (Heather Kirkwood) — Tue, 06 Aug 2019 20:50:00 +0000

With everything truly important on my list of things I need to blog about, we’re going with a really important one today – Star Trek!

I don’t think most people would make me for a trekkie, but I’ve always loved it. In general, I’m not a huge SciFi person, but I loved/love Star Trek because of its soul. It isn’t just space battles and space monsters. It isn’t just good vs evil. Star Trek used its universe to say things that, in our universe, might be sensitive. It allowed/allows us to look at ourselves in the safety of another place and time. In such a polarized environment, we could use a little more of that.

A few months ago I finally ditched my Netflix subscription and added CBS All Access to my Amazon Prime account. (Might be better named CBS Some Access, but that’s for another blog.) I was dying to see Discovery, the new Star Trek, but hadn’t signed up for CBS because my budget is tight. Even a few extra dollars can matter. But, I found I was watching a few series on Netflix, and then couldn’t really find anything else there I hadn’t already seen or that interested me. So, I finally made the leap.

Oh Star Trek, I miss you! I actually did like Star Trek Discovery, once I decided to put aside everything I think makes the Star Trek brand different and just decided to be along for the ride. It’s an interesting story, but it isn’t the Star Trek I love. The social commentary, when there, seemed pretty thin. I liked the characters, but I didn’t love them.

They are the kind of characters you’d be happy to work with, but you wouldn’t want to spend a laid back weekend with them.

It may sound silly, but one of the things I always liked about Star Trek characters is that no matter how foreign they were designed to be, you still felt like they were people you’d like to get to know better. You would love to meet them for drink in 10-Forward or Quarks and just talk.

Evidently there is another new series coming out involving my favorite captain – Captain Picard! Oh how I had a crush on Picard!!!! That voice just melts me!

I’ve watched the old series over and over and over again (maybe not so much the one from the 1960s or the animated version). I’m longing to sink my human teeth back into this universe I loved.

Picard, oh Picard – be still my heart and bring me something with substance and drama – but not so much drama that it goes beyond believability (as believable as anything imaginary could be.)

Hundred People Search Update

noreply@blogger.com (Heather Kirkwood) — Tue, 30 Jul 2019 19:07:00 +0000

We've added a new member.....this puts us at 80 to go on the Hundred People Search - HPS.

Hundred People Search - HPS

noreply@blogger.com (Heather Kirkwood) — Tue, 23 Jul 2019 16:08:00 +0000

We have added another person to the HPS registry. This puts us at 81 to go on the Hundred People Search. May no one be left behind!

Hundred People Search

noreply@blogger.com (Heather Kirkwood) — Mon, 24 Jun 2019 02:02:00 +0000

We added three new HPSers to the registry last week. This puts us at 82 to go on this year's Hundred People Search - H.P.S.

Awesome birthday present – oxygen out of my apartment

noreply@blogger.com (Heather Kirkwood) — Sun, 16 Jun 2019 16:53:00 +0000

This week I celebrated the second birthday since my lung transplant. When I catch myself having a thought about how old I’m getting, I remind myself how hard I’ve worked to get this old. It didn’t just happen. It’s perhaps unusual that you can feel like the mere act of existing is such an achievement. I worked hard, but so did so many people along the way – a LOT of people.

This year one of the exciting parts of my birthday was getting to send the oxygen equipment away. The transplant clinic was leery to let me send it away for a long time. They were worried I’d have another complication and require it again, even if only for a short time. It’s been annoying to me because I haven’t needed it (with the exception of a few days last June when I had rejection) since I’ve been home. Still, I’ve had to keep paying for it every month. Plus, I live in a tiny apartment! This equipment takes up valuable space that is already in short supply.

On Friday, when Carlos, the guy from the oxygen company that had delivered so many tanks to my house for years, came to get the last of the tanks, the regulators, the big concentrator and the huge tank meant as emergency oxygen in a power outage, I could hardly contain myself. I asked his permission to take photos and he agreed.

For years through this process I’ve seen others celebrate sending this equipment away and through the first year post transplant when things would get rough, I wondered if I’d ever get a moment like that.

I did!!!!!

It is important to understand that it is very possible the tanks will have to return one day. Lungs are the hardest solid organ to transplant and tend not to last as long as other solid organs. I’m hoping for years and years, even decades….but statistically there is a reality.

But right now, I’m hoping for the best and enjoying this little mile stone. Thanks to everyone who helped make it possible!

Hundred People Search

noreply@blogger.com (Heather Kirkwood) — Sat, 08 Jun 2019 22:41:00 +0000

We have added another HPSer to the registry. This puts us at 85 to go on this year's Hundred People Search (HPS). Keep up the outreach!

Hundred People Search

noreply@blogger.com (Heather Kirkwood) — Fri, 31 May 2019 17:15:00 +0000

We added a new person to the HPS registry this past week. This puts us at 85 to go on the Hundred People Search (HPS) this year. Keep up the great outreach!

Hundred People Search

noreply@blogger.com (Heather Kirkwood) — Tue, 28 May 2019 15:07:00 +0000

We have added a new HPSer to the registry. This puts us at 86 to go on the Hundred People Search (HPS).

Hundred People Search

noreply@blogger.com (Heather Kirkwood) — Fri, 10 May 2019 16:17:00 +0000

We have added a new member to the HPS registry. This puts us at 87 to go on this year's Hundred People Search (HPS).

Family hunting

noreply@blogger.com (Heather Kirkwood) — Tue, 07 May 2019 20:16:00 +0000

I’ve always had an interest in genealogy. I haven’t done anything about it really. Never had the time I guess. Perhaps it’s because I’ve always been a fan of studying history. Finding ancestors somehow feels like a personal connection to the past, as if the DNA populating my cells has some sort of time travel awareness of what has gone before. Of course that’s crazy.

When I was diagnosed with Hermansky-Pudlak Syndrome my interest in my roots, especially my Puerto Rican roots, intensified. Maybe it was the realness of mortality or the connection between my newfound fascination with genetics and how it connected me to my family history.

For years I’ve thought about whomever in my family tree might have had HPS. They would have lived so long ago that they wouldn’t have known what HPS was. It wasn’t really identified as such until 1959. My grandma Cockerill, whose father was from Puerto Rico, talked about relatives in Puerto Rico she heard about as a child that had died of tuberculosis. Could any of them have had HPS? Could doctors 100 plus years ago have thought pulmonary fibrosis was TB?

What about my non-Puerto Rican roots? Someone on my dad’s side of the family somewhere must have had HPS. Who was it? How long ago?

These HPSers in history...what was it like to live with HPS that long ago? What were they like and how did HPS impact their life stories?

As my involvement with the HPS Network became deeper and deeper and I was fortunate enough to go to Puerto Rico several times for HPS conferences, I would look at the crowd assembled and wonder who among the audience might be related to me. It would likely be a very distant relation, but the odds are that someone out there, someone else with HPS, is a distant cousin.

I hopped onto Ancestory.com the other night. Joining is not in my budget right now, but it lets you do a little bit (to entice you join I’m sure) and up popped a photo of my great grandpa from Puerto Rico. Someone, someone related to me most likely, must have uploaded it.

I then saw that you could upload not only documents and information about yourself (if you join) but you could upload an audio or video file. Wow! Now my imagination has been working overtime all week. I wonder how long those files stay up? Imagine someone researching their family tree 100 years from now and being able to not just find public records, and maybe some photos if they’re lucky, but an actual video or audio file of their ancestor actually speaking to them. Speaking, as in with words directly. Wow!

I’m not sure that this is the case. I haven’t really had a chance to look into it. But, if that were possible, what would you say?

I don’t have children. After I’m gone, the next generation of family will barely have known me. I’ll be this little tiny branch sticking out as a dead end on the family tree. No one will feel that kind of connection with me most likely. But, if I were able to speak to them – maybe that would make my little branch more interesting. Maybe it would make someone in the future feel some sort of connection with me.

Hundred People Search

noreply@blogger.com (Heather Kirkwood) — Tue, 07 May 2019 19:28:00 +0000

We have nine new members today! This puts us at 88 to go on the Hundred People Search! Keep up the great outreach.

Purpose and the Department of Motor Vehicles

noreply@blogger.com (Heather Kirkwood) — Sat, 13 Apr 2019 18:09:00 +0000

I don’t want to be a cliché. People that get a “second chance” at life are supposed to tell everyone else how much they should appreciate life. The roses smell sweeter. The sunsets are more vibrant. Blab blab blab ba. The thing is, a lot of days, it is true.

There are days when it mystifies me that marching bands aren’t walking down the street every day followed by fireworks every evening because I’m still here. (How is that for self-involved!?!) I mean it in the sense that there are so many reasons why I shouldn’t still be here.

The cliché annoys me because it assumes no one really appreciates living until they nearly die. That isn’t me. I appreciate living enough that I fought like hell to still be here. I may be broke. I may not have a lot of the things in life you’re supposed to have at, ummm….middle age….but I do have a strong sense of purpose. I’ve spent most of my life not assuming I’m going to live forever, and I know I’m not the only one. So, I’m not going to lecture anyone about the smell of roses or rate sunsets.

I won’t, however, promise that I’ll never sometimes gush with pure unadulterated glee. This past Monday was one of those days.

I had a day full of appointments. None of them were pleasant tasks and I can’t say it was a day I bounced out of bed with that sense of purpose about life.

After getting ready and taking Finley for a walk, I started out for my day by going to the pharmacy. That is typically never fun. It is rare that I go to the pharmacy without some kind of complication. It might be a copay that is more than I expected or a script I thought they filled that wasn’t filled because some doctor’s office needed to call something in. Some drug I need isn’t in stock so it has to be ordered. It’s always something. I never seem to be able to plan perfectly enough to avoid all the complications I should probably see coming. On this day, however, everything went smoothly. All my scripts were accounted for and ready and they cost just about what I expected them to cost.

Then, I ubered to the tax guy. It’s one of those yearly rituals that I dread. I make so little that I rarely owe income tax, but self-employment tax gets me. Normally, I’m able to pay along the way and estimate things pretty well, but these past two years with working less and less, and bills being more and more, my tax fund had to be raided for frivolous things like medicine. But, surprise! Everything came out okay. I was actually even for the year! Woohoo! This day was turning out to be just a fraction of the torture I had expected.

Next, I ubered to the landlord’s office to give them a copy of my taxes so they could finish my lease. This is another errand that every year is something similar to going to the dentist for a root canal. I complete no less than 30 pages of forms to live in a committed affordable housing unit. Often I have to make multiple trips because a form was missing, or they gave me last year’s form or some such thing. It always all comes due at the worst possible time of year for me too…right about when conference hits. Again, surprise, it was pretty painless. Besides waiting about half an hour for someone who could notarize some of the forms, it wasn’t nearly as bad as usual.

It was a beautiful day outside. My mood was improving since things had gone better than expected. I walked to the metro station, which was a bit of a hike, but after stopping at Starbucks to use the restroom and get a latte, I decided to try to walk to last errand, the Department of Motor Vehicles.

Why does a blind lady need to go to the DMV? My Kansas state ID was renewed only months before I moved to Virginia and I’ve never gotten it reissued as a Virginia state ID. Before my transplant, I was trying to get it done, and get a handicapped parking placard because of the oxygen issues, but it turned out to be a nightmare. After three trips to three different DMV offices and conflicting instructions from the Website and DMV staff, I finally just gave up. I had devoted a ridiculous amount of time to the project with no results, and this is when I was on increasingly large amounts of oxygen. It wasn’t easy to run around, be gone and not know how long something was going to take etc. I gave up.

Now, however, my ID is going to expire this summer. I’m planning on flying for the first time since my transplant in May, and I don’t want my plans ruined because my ID is too close to expiring to be accepted somewhere along the way.

I thought I knew where the DMV office was. I thought it was a long walk from the Ballston metro, but the weather was gorgeous. I needed the exercise and for once, I could take the time. So, I decided to walk.

It was so nice to walk. I didn’t feel out of breath at all (although the walk was pretty flat). The breeze was perfect even though it was warm. I was really enjoying just watching the people I passed sitting at cafes outside, or walking their dogs or rushing to where ever people rush to. It was one of those, the roses are sweeter moments.

I kept walking. And I kept walking.

And then I realized – the DMV office wasn’t where I thought it was. After a quick consult with Google Maps, I realized my error and started walking to correct it.

And walking, and walking…….and now I was walking slower because miles into walking on this day, my feet were killing me and my legs were starting to not function well. After passing bench after bench, suddenly I couldn’t find a place to just sit for a minute. The sweat was rolling down my back and face and the sunscreen was running into my eyes. I even walked past a park with no bench!

I looked to see if there was a bus I could catch to go the rest of the way, but nope. Well, I could have, but it would have meant catching two buses that didn’t line up well from a time point of view. It would have meant standing in the sun and taken about another hour and a half. As much as I now hurt, walking seemed like the better option.

I walked slower and slower…..and FINALLY I was there!

I opened the door to find a line. I had to stand in a line just to get to go sit down! Prayers went up to heaven that I wouldn’t fall over and cause a scene. Yet, as much as I was hurting, and sweating and feeling dehydrated…I felt like I was bouncing into the DMV.

I was just so happy to feel so miserable!

I made it! I made it walking to the DMV after all the other walking I’d done during the day, and after it turned out to be so far from where I thought it was.

The DMV has Donate Life signage everywhere. I noticed the license plates you can get for your car that say Donate Life…..the poster on the wall….and I beamed.

No one at the DMV was happy. The customers didn’t look happy. The staff didn’t seem happy. It was stifling hot. There was no fan and it is too early in the season for the air conditioning to be on yet. The windows didn’t open. My blouse was now soaked and my hair looked as if I’d just stepped out of the shower it was so wet with sweat. Yet, I stood in line grinning at everyone. I did it. I was there!

I got up to the “information counter” better thought of as the gate keeper to letting me sit down. I explained why I was there. Without even looking up, the clerk told me I’d need to come with the following documents. (I got the impression no one ever comes with the right documents.)

“I’ve got them!” I proudly announced still grinning so much I could hardly stand myself. She looked up at me, and maybe since I had my long white cane with me she thought I wouldn’t notice, but she gave me a look that told me she thought I was nuts.

Gratefully I went and sat down. I actually said a little prayer that the service wasn’t too efficient because I needed to sit a minute.

My number was called. I was trying to figure out which counter was counter three (heaven forbid anyone tell the lady with the long white cane which counter…as several looked open but were actually closed.)

I was undeterred. I explained to this clerk why I was there. Again, he sighed and told me I’d need to come with the following documents. “Got them!” I announced.

He gave me a form to fill out with the world’s tiniest print on it. (Did I mention I had my white cane with me?) I asked if he would help me fill out the form. Yes, you can magnify forms, but when people are waiting, usually it is faster to ask for help.

“I’ll have to ask my supervisor if I can help you fill out the form.” Okay, I’m thinking, it’s a little thing called accessibility. Normally, I would have felt cranky about this response, but today I didn’t even care. I walked there. I walked there even though I hadn’t planned to and even though it was way further than I thought. I walked there even though it was hot. I was standing there in front of this guy who had to ask his supervisor if he could do the obvious as I literally dripped all over his counter. Stupidity wasn’t even getting on my nerves.

We completed the form together. I’m dreading the photo he took for my ID. I’m sure I looked horrible!

As I gathered up my documents and put them back in their folder, I told the guy at the counter, and by extension his coworkers lined up on uncomfortable looking stools behind the counters, that I really loved people who work at the DMV.

“Why,” he asked?

“Because it is someone like you who helped someone like my donor check that box to be an organ donor.” I explained, “Fourteen months ago I got a lung transplant. That’s why I’m here getting my ID. Without the people like you who ask that question maybe a zillion times a day, I might not be here.”

Dramatic? Maybe, but they all smiled and grinned – every one of them. Maybe they just thought I was nuts. Maybe not. Who cares.

So many things had to fall in line in just the right way for me to be here today. From the family support, to the donor’s family awesome gift to the civil servants at the DMV dealing with all the grouchy people every day at the DMV to check an average errand off of their list of things to do – they all make miracles happen.

Yep, purpose. It can make you feel like fireworks should go off everywhere.