Wednesday, August 10, 2016

Getting closer – Health Update

Inova Fairfax Hospital - my hospital

It has been a year since I started pulmonary rehabilitation, and about nine months since I started the transplant work up process. I’ve finished all of the transplant tests, and everything came back just fine except my teeth. Go figure.

I’ve almost lost all the weight I have to lose to be listed and expect I will be there by my appointment in Sept. Ideally, I will still have to lose more weight, but at least I’ll be able to be listed if they decide it is now time. I have a feeling they will.

Sometimes I’m not sure if my take on symptoms is paranoia, or if it is accurate. I do feel like there has been some progression over the summer. My cough is worse. When my oxygen does fall, it takes longer to pop back up again.

The dental stuff has turned into quite the saga. I need a root canal. Everyone knows I’ve never been an easy dental patient to start with, but now it is worse. It isn’t the dentist. It is me. When you know someone is going to be drilling on your teeth and you can’t cough, yet you cough all day long almost every day, you can’t help but be a bit concerned. We aren’t talking about a nice dainty cough here. We’re talking about a violent cough that often results in throwing up or losing control of the bladder because I’m coughing so hard. My oxygen now always falls during a coughing fit, often into the 70s. I put oxygen on, but it doesn’t come up until I’m finished coughing. Now, instead of popping right back up on its own, it takes being on oxygen and several minutes for it to return to a safe level. Add all that to my existing issues at the dentist, and well, this upcoming dental procedure, while very routine, is scary! Because I need several things done, I hate to just pull teeth to avoid all this – but if it comes down to it, that may be what has to happen. That, of course, isn’t problem free either. There are a whole other set of risks with that option too.

I continue to go to pulmonary rehabilitation twice a week. I really enjoy it. I’ve never been into the gym, but now, with unlimited oxygen, it feels good to exercise and I enjoy competing with myself. Lord knows I can’t compete with anyone else these days!!!

I am now in the process of repeating some of the transplant work-up tests because they have to be updated every so many months. Yep, the hamster wheel never stops turning!

Thanks so much to all of you who have been so supportive. I would have never made it this far without awesome friends, family and doctors!

Monday, June 20, 2016

Two years on oxygen

I realized this past weekend that it has been a little more than two years since I started using oxygen. Wow! The realization makes me anxious. It would be typical for an HPSer to be doing much worse than I am now doing. Sometimes I wonder if I’m doing as well as I think I am. Then, I start to feel panicked because if I’m not, I’m running out of time to get listed.

The month I went on oxygen I had three other HPS friends who had to start using oxygen about the same time. Two of them have passed, and one had a lung transplant. It really does make one feel as though one is on borrowed time.

The last few days I’ve noticed myself more breathless as I walk around my apartment – something I can usually do for two to three minutes on room air. In an apartment as tiny as this one, that’s plenty of time to put away laundry or go to the bathroom without wearing oxygen. In the apartment it isn’t so much that I need more oxygen – I just seem to need it sooner. When I have one of my coughing fits I have real difficulty recovering on my own. I started checking my oxygen and found it could drop to the 70s when I was coughing. No wonder it is so hard to recover! So, I put my oxygen on when I’m having a coughing fit. It doesn’t help the coughing exactly, but just even a small “hit” of oxygen after coughing helps me recover quickly so that I can go back to room air and be fine.

After my lung injury in February, I had finally gotten back to my baseline by the end of April. This week, however, I notice I do need more oxygen when outside walking. That really troubles me! It puts me on the bubble of being able to use my portable oxygen concentrator. Tanks are just so much harder to manage. It makes it much harder to go anywhere, especially when you don’t have a car to put extra tanks in the trunk.

My allergies had started to improve, but this past weekend they were pretty bad. I feel like I have this tickle in my throat, like my throat itches. I’m hoping that this is the explanation, and not an advancement of my lung disease.

It is something I can’t help but worry about when I notice small changes. The panic sets in.

This weekend I wasn’t able to work or play as much because of a horrible headache, and a medium sore throat. That is when it is worse! I can cope with the panic feeling when I’m busy. But, when I’m not feeling well and in bed, all that is there is my brain and Finley.

Finley is such a sweetheart when I don’t feel well. He lays right next to me, only sometimes going to get a bone or a toy to chew on as if he were going to get a magazine to read. Yet, when he is sitting with me like this, I can’t help but worry about what will happen to him when I get really sick. I know he will be okay. He has a lot of people who will make sure he is cared for and always has a home, in case the worst happens. Yet, I will miss him greatly if I have to stay in the hospital a long time. We are so bonded that even if he is well cared for and has lots of people to play with him, I know he will miss and worry about me. I know it from just the week I spent in the hospital in February. He loves Jane, his dog sitter, but when I came home he literally leaped into my arms (quite a jump for a little dog!) When others want to take him for a walk, I have to fake him out and pretend I’m going out the door with him, or he won’t go. Often, when they get him outside, he refuses to walk and just wants to get back to the door.

It is touching, but it is worrying as well.

And, then I feel even more emotional when I think about what my fellow HPSers with children must go through and what they must be anxious about.

Yep, call me Debbie downer for the day. Thankfully, my headache is better today. It still hurts, but not so much that I can’t work on things today. That usually gets me out of my panic/worry mode.

Wednesday, June 08, 2016

Second opinion

Update on the dental saga. Last week I went to Ryan and Sara's dentist for a second opinion. It is amazing how many people told me I should do that. I'm glad I did. The second dentist doesn't think I need the oral surgery. The more I thought about it, the more I was questioning this part. My grandmother has the same tooth that never came through (probably another genetic thing). She is 99 and it has never caused her a problem. I do need the other work. 

Finances are so stressful just now. Every time I turn around there's another bill, another hoop I have to jump through, another thing that is out-of-pocket and not covered by insurance. 

I'll be okay with the dental stuff. I will simply have to use my transplant fund money. I can't thank all of you enough who have donated to this fund, held fundraisers etc. You have no idea how important and how helpful your efforts have been through this process. 

No dental work means no transplant, so it's a transplant expense. What I'm worried about is that when I get sicker, I'm not going to be able to do the limited work I do now. I keep thinking about what I could do when I came home from the hospital and was on 10 to 15 liters of oxygen. Going to the bathroom and getting dressed were a project. When I get that way (and it is likely before I'm at the top of the transplant list), I can't see how I'm going to do any earning of income. I need that money to help pay living expenses when that happens. 

And then there's the recovery time and those expenses. 

Can we say stress? 

The other day I met with one of the folks at pulmonary rehab helping me on my weight loss plan. She is very nice, so don't take this the wrong way....but when we were discussing why I've hit the wall on progress, she asked me if I'm under stress. 

I had to work hard not to just burst out laughing. You think? I need a lung transplant. I've moved across the country where I don't have a ton of friends etc. I'm constantly worried about money. I've lost 11 friends to HPS in the last 12 months. Stress? Just maybe a little. Grin! 

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).