Monday, May 23, 2016

Hundred People Search Update

What a way to start a Monday morning! We have added four new HPSers to the patient registry. This puts us at 86 to go on the Hundred People Search (H.P.S.) 

Thursday, May 19, 2016

Groan – another complication

Just when I thought the end was in sight of all the tests and specialists visits to try to be listed for transplant (at least for this year); we’ve hit another bump in the road. Thankfully, I am doing very well right now. Sadly, the complications are dental in nature.

I hate the dentist. I’d rather have a lung lavage, or even a heart cath, than have dental work. I think it is because for those procedures they give you wonderful drugs. At the dentist, you get a shot which might mitigate some of the pain, but you are still aware of everything going on. You hear the drills. You smell the odors. You have to lie back in the chair (even if they don’t put it back all the way). I breathe better sitting up generally. I always seem to have sinus drainage that sticks in my throat. When they are working on my teeth, I feel like I can’t swallow and all that goo is choking me. Add to this some negative experiences at the dentist, and my anxiety about dentistry is sky high!

My bleeding incident in February is making me even more nervous this time. It has taken me a good three months of very constant and very hard work to recover from that, and I’m exceptionally lucky I have recovered as much as I have.

Finances are another issue. I will max out my dental coverage before I get everything completed, so this is going to cost several thousand dollars. Thankfully, this is what my lung transplant fund is for, but I worry about what I’m going to live on when I can’t do the things I am doing now to earn extra money. My disability check covers my rent, and maybe a utility or two, depending on the time of year. So, even though I’m on disability, I still have to come up with some supplementary income to pay the basic bills. (Especially here – the cost of living is much higher than in Kansas, but the disability check is the same amount.) My options are fewer now than they once were because of all the medical stuff in my world. I feel like a full-time, professional patient.


I wasn’t surprised about needing one root canal. I’ve had a problematic tooth, and I was guessing this would be the answer. But, the other needed root canal, two crowns and two fillings were a big surprise. I brush and floss at least twice a day. Sometimes even a third time. Groan!

On top of this, perhaps the scariest part, from a bleeding point of view, is that I need oral surgery. This was also a huge surprise.

I have an adult tooth that never came down. It is dead and lodged in the roof of my mouth. I didn’t learn this until I was an adult, but apparently in the womb I was developing to have a cleft pallet. Things didn’t progress that far, so I was born without anything to raise a flag. But, apparently, above the roof of my mouth there is some malformation where this tooth got stuck and died. I lost the baby tooth it was supposed to replace when I was 37!

Apparently there has been some bone loss around where the dead tooth is lodged and a space has formed. The dentist can’t tell from the x-ray if the pocket has filled up with puss, or if a cyst has developed there. He thinks oral surgery will be the only solution.

So, I’m scheduling a consultation with the oral surgeon. Of course, this will likely also mean a visit with the hematologist etc. etc. etc. Then there is the issue of fragile lungs and anesthesia. Oh what fun? I am not a happy camper at all.

Friday, May 06, 2016

Hundred People Search update

We have added another patient  to the HPS patient registry. This puts us at 89 to go on the Hundred People Search (HPS). 

Wednesday, May 04, 2016

Definition of anxiety

This past weekend I was listening to NPR, as I usually do in the mornings. I was half awake, only partly understanding what I heard as I cuddled with Fin and slowly woke up. Scott Simon of Weekend Edition was interviewing the author of Imagine Me Gone, a novel with a theme related to the anxiety experienced by characters. The book is by Adam Haslett.

Admittedly, I am not familiar with the book, or the author. Simon read an excerpt from the book as I rolled over to try to fall back asleep. Then, I heard a line that struck me between the eyes. It struck me so strongly that I had to get out of bed and go find paper to write it down so I wouldn’t forget it. Honestly, I can’t even remember what the excerpt was about. It was just this single line that seems to have penetrated my ears.

“Anxiety is the relentless need to escape a moment that never ends.”

Is it a definition of anxiety? I admit, I tend to lean a bit on the anxious side. It has never been a severe issue, as it is for so many, but it is there. What a perfect description. Yet, that isn’t why this line leapt out at me so.

The line, in my personal experience (I can’t speak for everyone) is also what it is like to live with a rare and chronic health issue.

We all cope differently. Some people are able to successfully somehow put their futures with HPS out of their minds when they are still healthy. I never could. A lot of people told me I shouldn’t work with HPS because it wasn’t healthy to spend so much time thinking about my disease. If not working on HPS made it possible to put it out of my mind, then perhaps there might be an argument for the strategy. 

I just couldn’t. 

It is the anxiety. It is the thing that lives in the back of the brain, a sort of low level anxiety I guess, that makes it impossible to escape from the moment that never ends. It is the moment of knowing what is in the future. It is the moment of feeling like there is a ticking time bomb living in your lungs.

Instead of trying to forget how that moment of final diagnosis changed my life, I feel empowered by working on trying to bring the ramifications of that moment to a conclusion for everyone. It isn’t a moment that has to go on forever. Pretending it isn’t there won’t make it go away. Even a lung transplant someday won’t make it go away. Transplant is really just trading one lung disease for another. The perk is that you get to live longer, and hopefully healthier.

I know there are a lot of HPSers out there living in that transformative moment. I know because they will sometimes quietly, one on one, talk to me about how they feel.

It isn’t just those of us with severe lung or bowel or bleeding issues that live day in and day out with HPS. It is also the HPSers waiting.

They are waiting for the day the doctor tells them they have fibrosis in their lungs. They are waiting for the day they have to start using oxygen. They are waiting for the day they must seek a lung transplant. It is a kind of creeping anxiety that can go barely noticed, even by those closest to you. But, for many, it is there – the moment that never seems to go away and the endless need to escape it.

Tuesday, April 26, 2016

Hundred People Search Update

Today we added a new HPSer to the patient registry. This puts us at 90 to go on this year's Hundred People Search (H.P.S.). 

Wednesday, April 20, 2016

Hundred People Search

We have added a new HPSer to the patient registry. This puts us at 91 to go on the Hundred People Search (H.P.S.). 

Thursday, April 14, 2016

Hundred People Search Update

We have added a new HPSer to the registry. This puts us at 92 to go on the Hundred People Search (HPS). 

Wednesday, April 13, 2016

Hundred People Search

We have added a new HPSer to the patient registry. This puts us at 93 more to go by next conference for the Hundred People Search. 

Tuesday, April 05, 2016

Hundred People Search off and running

Today we added four new HPSes to the patient registry! This puts us at 94 to go by next conference! 

Monday, April 04, 2016

New Hundred People Search

We are starting a new year in the HPS calendar!!!! So, what is the Hundred People Search? It's an HPS Network challenge to find everyone possible with HPS and help to make sure they have an accurate diagnosis if they need it. H.P.S. - Hundred People Search. 

Last year the Network changed its focus for the year to concentrate on building a better infrastructure for research. We have been working on opening the Young Lung Centers in hopes that someday, should another drug or treatment trial become available, we can fill it faster and thus get treatments to people with HPS faster. 

This year, we are turning our focus back to finding people with HPS. We do not, however, have much budget for this effort. The centers cost money. We are going to need the help of everyone to do outreach and to find others who may need a diagnosis, or who have one, but might not be aware of everything happening in HPS research etc. 

So, we are kicking off the year with two new HPSers added to the patient registry. This puts us at 98 to go on this year's Hundred People Search.