Tuesday, September 20, 2016

Hundred People Search Update

We've added three more HPSers to the HPS patient registry in the last few weeks. This puts us at 81 to go on the Hundred People Search (HPS). Please encourage anyone you know with HPS to register, even if they don't want to be involved beyond that. It is a way to let research know we are here, and we want a CURE! 

Monday, September 12, 2016

Health Update – the dental saga continues

My next transplant appointment is in roughly two weeks. I had hoped I’d be listable by then, but it’s not going to happen. The dental saga continues.

Honestly, I’m a little frustrated.

I need a root canal before I can get dental clearance. After much back and forth (that I won’t get into here) the doctor that was going to do the procedure now cannot do it. The problem is that my cough is so bad; I can’t promise that I can not cough during the procedure. 

If you’ve seen my cough, you know it isn’t a dainty little cough. It is a violent cough. It can go on and on and on sometimes. So, the plan was to use sedation. The only way to stop the coughing, however, was to do general anesthesia. My pulmonologist (rightly so I think) nixed doing it at an outpatient dental anesthesia center. I was very worried all along that this plan wasn’t the best one, but everyone seemed to think I was overacting – so instead of checking this out first, plans went on and only came to a halt days before this was supposed to happen.

I know root canals are not bloody procedures. After my experience last February, however, it isn’t the expected bleeding I was worried about. It was the ability to handle unexpected bleeding. I met with my hematologist (who I LOVE!) and he put my mind greatly at ease about that issue.

The other concern I had was how I would bounce back after the anesthesia. Before I was on oxygen and had procedures done my oxygen levels would never require oxygen afterwards, but they would drop to the low 90s when they were always 98 to 100 percent before. I don’t have much reserve these days. If I do need oxygen after a procedure, it might be more than the average person coming out of the fog. I was very worried about this being adequately managed in an out-of-the-hospital setting. My pulmonologist agreed.

So, the good news is that if I have this done, it will be at the hospital. I expect that if it goes smoothly, they’d just send me home afterwards. But, if my lungs are a little sluggish afterwards, they have the option of giving me high flow oxygen and keeping me for observation. That goes a long way to helping with my anxiety about this.

The bad news is this will mean seeing and getting evaluated by dentist number four – one with hospital privileges. That could take some time to set up, and I’ve been working on this since my six-month exam in June! If I’m close to being listed, my feelings are (excuse my language) but screw it – pull the xxxxxx tooth! When it comes down to teeth or lungs, I’m going for those lungs baby!

Because I am already missing a back tooth on that side of my mouth, I wanted to avoid pulling it. I suspect that pulling it will mean some other work long term.

So, now my plan is to see where the transplant team is at in regards to their thoughts about me at my next appointment. If this is the one thing holding me back, then I know I can get it pulled relatively quickly. If, on the other hand, they want to see me again in a few months before doing anything, then maybe I have time to save the tooth.

I’ve always had anxiety about being listed. Who wouldn’t. But, now I’m feeling more anxious. In the pre-op for the anesthesia, I saw a copy of my CT report that was to be given to me at the next transplant appointment. (Not that it is a secret – I just didn’t see the point of worrying about it until the next appointment.) The report says there has been some progression. This doesn’t surprise me. I know my normal oxygen for casual walking has gone up a liter. To walk fast, I need more than the little concentrator can generate. I have to check myself and remember to walk slower, which is hard to do sometimes.

Health Update – the dental saga continues

Inova Fairfax Hospital

My next transplant appointment is in roughly two weeks. I had hoped I’d be listable by then, but it’s not going to happen. The dental saga continues.

Honestly, I’m a little frustrated.

I need a root canal before I can get dental clearance. After much back and forth (that I won’t get into here) the doctor that was going to do the procedure now cannot do it. The problem is that my cough is so bad; I can’t promise that I can not cough during the procedure. If you’ve seen my cough, you know it isn’t a dainty little cough. It is a violent cough. It can go on and on and on sometimes. So, the plan was to use sedation. The only way to stop the coughing, however, was to do general anesthesia. My pulmonologist (rightly so I think) nixed doing it at an outpatient dental anesthesia center. I was very worried all along that this plan wasn’t the best one, but everyone seemed to think I was overacting – so instead of checking this out first, plans went on and only came to a halt days before this was supposed to happen.

I know root canals are not bloody procedures. After my experience last February, however, it isn’t the expected bleeding I was worried about. It was the ability to handle unexpected bleeding. I met with my hematologist (who I LOVE!) and he put my mind greatly at ease about that issue.

The other concern I had was how I would bounce back after the anesthesia. Before I was on oxygen and had procedures done my oxygen levels would never require oxygen afterwards, but they would drop to the low 90s when they were always 98 to 100 percent before. I don’t have much reserve these days. If I do need oxygen after a procedure, it might be more than the average person coming out of the fog. I was very worried about this being adequately managed in an out-of-the-hospital setting. My pulmonologist agreed.

So, the good news is that if I have this done, it will be at the hospital. I expect that if it goes smoothly, they’d just send me home afterwards. But, if my lungs are a little sluggish afterwards, they have the option of giving me high flow oxygen and keeping me for observation. That goes a long way to helping with my anxiety about this.

The bad news is this will mean seeing and getting evaluated by dentist number four – one with hospital privileges. That could take some time to set up, and I’ve been working on this since my six-month exam in June! If I’m close to being listed, my feelings are (excuse my language) but screw it – pull the xxxxxx tooth! When it comes down to teeth or lungs, I’m going for those lungs baby!

Because I am already missing a back tooth on that side of my mouth, I wanted to avoid pulling it. I suspect that pulling it will mean some other work long term.

So, now my plan is to see where the transplant team is at in regards to their thoughts about me at my next appointment. If this is the one thing holding me back, then I know I can get it pulled relatively quickly. If, on the other hand, they want to see me again in a few months before doing anything, then maybe I have time to save the tooth.

I’ve always had anxiety about being listed. Who wouldn’t. But, now I’m feeling more anxious. In the pre-op for the anesthesia, I saw a copy of my CT report that was to be given to me at the next transplant appointment. (Not that it is a secret – I just didn’t see the point of worrying about it until the next appointment.) The report says there has been some progression. This doesn’t surprise me. I know my normal oxygen for casual walking has gone up a liter. To walk fast, I need more than the little concentrator can generate. I have to check myself and remember to walk slower, which is hard to do sometimes.



I can’t say I wouldn’t feel anxious, but maybe less anxious, if I knew I could be listed tomorrow if I had to be.

Sunday, September 11, 2016

Fifteen years later – Sept. 12th, Remembering the day after





On previous anniversaries I’ve blogged about where I was on Sept 11, 2001 and how I spent the day. I’ve blogged about my thoughts for all of those affected by the disaster. Today, amid an atmosphere so polarized, I want to remember the day after – Sept. 12th.

When I was a kid my grandparents’ generation talked about how America rallied together during the war. There was a feeling of unity that they remembered well. On Sept. 12th, I walked through my neighborhood in Overland Park, KS to get some fresh air. Every house, every single one, displayed the red, white and blue. No one’s house was Republican or Democrat, Christian or Muslim, White or Black – we were Americans. We were united in the way I imagined when my grandparents talked about the war. I spent the day of Sept. 11th, and several of the following days, doing stories from the American heartland for the South China Morning Post. I remember doing one about flag sales and how Americans were displaying the flags. By Sept. 12th, you couldn’t buy an American flag. I ended up making a wreath for our front door (that didn’t turn out very well honestly) out of red, white and blue ribbon because we didn’t have a flag and I couldn’t find one. Flags lined Metcalf and flew outside of every business.

Now, we are so divided. It was a spirit that only really lasted a few weeks at most. It unraveled. 

Of course Sept 11th was horrible. None of us would ever wish it. I am grateful, however, that for a brief moment I experienced that kind of American spirit. It’s the spirit which says, we are ALL Americans. This is us. You can hurt us. You can wound us. You can kill us. But, this is who we are. This is who we can be. We will not surrender. We are not defeated. In the midst of so much division and nastiness, it is nice to be able to remember that brief moment in time.

Thursday, September 08, 2016

Hundred People Search

I'm a bit behind on updating the Hundred People Search. In the last few weeks, we have added two new HPSers to the HPS patient registry. If you know anyone with HPS who is not a member of the Network, please encourage them to join - even if they don't want to participate in any other way. We need to prove to research that we are out here, and that we NEED A CURE! 

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.

Stress!

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.