Friday, August 28, 2015

My new neighborhood

This is the back side of my building. My apartment (from the back) is on the second floor. Here it is covered by the trees. 
Our street 

Fin's Flexi-leash field

Park near our house
Front of our apartment building - we are the first floor (from the front) on the right. We love the shade! 

In order to keep all of you that are helping me in this journey, or helping support the HPS community in general, I’m trying an experiment with blogging. I’m going to try to write several blog posts when I am able to blog, and then schedule the posts to stagger over a few days. Just FYI, lest you think I suddenly have more time to blog! Grin!

One of the things I’ve been eager to blog about, is my new neighborhood. I do miss my old neighborhood a lot. I miss the people and Homers. There just isn’t a comparable place here. Here, when you do find a little coffee shop, they don’t exactly go out of their way to make it a great place to stay a while and work. This is understandable given the economics here. Rent is so expensive that a coffee shop needs a good turnover to make the economics work. So, the tables are small. They don’t offer wifi generally, and there aren’t places to plug in.

That being said, I do very much like my new neighborhood. It has a lot of things to offer that are just different than the old neighborhood.

There is a large park only a half a block from our apartment. It is such a great place to walk Fin! It is also a great place to work on his social training as the park is always busy with people. I am amazed at how well used parks are here in Arlington. It isn’t like in Overland Park where you can go to a park during the day and hardly see another person.

Behind our building is a large green space no one seems to use. At one time, I can tell people hung their laundry out here – but now it is just a large grassy spot. I bought a flexi-leash for Fin that is 23 feet long. (You don’t use these types of leashes with service animals generally as it doesn’t give you as much quick control over the dog.) On the days when I am unable to take Fin for a long walk, we walk up and down this green space and Fin can run on his flexi-leash. He loves it! (I think he really misses his porch though.)

About a half mile away there are a number of little neighborhood shops, a library and a post office. I am so thrilled to have a post office so close by. It is a major hassle to have to lug packages to the post office. I hope to paint more and try to sell more…and a post office is important to that endeavor. The library is a place I can go and work. I am amazed at how crowded it is! It is the neighborhood version of Homers, only there is no coffee and you can’t chat as much. Yet, there are the work-at-home regulars there just like me.

My part of the neighborhood is mostly a bunch of apartment buildings from the 1940s. They generally have six to nine units in each building. Around us there is a lovely neighborhood.

There have been so many times I’ve wanted to take photos of the houses! They aren’t large by Midwest standards, but they are so well kept up and many have such beautiful yards! Many have lots and lots of beautiful gardens accented by paths and gates. I don’t take the photos only because I wonder if people would think I was strange. Grin!

I am looking forward to fall because there are so many large hardwood trees. I think the colors of the leaves will be so pretty.

Thursday, August 27, 2015

Hundred People Search

We've added another HPSer to the registry. I was just cleaning out e-mails and found one I had missed from the office! This puts us at 80 to go on the hundred people search! 

Monday, August 24, 2015

Hundred People Search

Today we added a new member to the patient registry. This puts us at 81 to go on this year's hundred people search. 

Sunday, August 23, 2015

Hundred People Search

We added a new HPSer to the HPS patient registry. This puts us at 82 to go on the Hundred People Search. 

Wednesday, August 19, 2015

Health Update – we are on our way!

It has been too long since I updated the blog. I have so much to share with everyone, especially friends back in Kansas! It is just harder now to do the updates. I get tired easier. I have a lot going on medically. And, I am trying to keep up my work with the HPS Network. By the time I am at that point of the day when I can blog, I am pretty tired out.

I will try to do better – but that’s all I can promise.

So, first, I wanted to post a medical update as it is just so much easier to explain all of this once than over and over again – grin!

There has been a lot happening.

I have a new primary care physician and a new pulmonologist. I’m excited that the pulmonologist seems very interested in learning about HPS and very open to seeing our relationship as a partnership. I’ve only had one appointment with the primary care doc, so I just don’t know her as well yet.

I do know I very much miss my doctors back at the University of Kansas. They were awesome. They were so giving of their time and themselves, way beyond the standard 15 minutes the insurance paid them to do. We really got to know each other and trust each other. They went to bat for me on several occasions. I can never say enough about how lucky I was to have them as my doctors.

I FINALLY have a transplant clinic appointment. That was something akin to an act of God. Really, the prayers come in handy because sometimes I swear God himself has to call just to get an appointment. My pulmo made the referral on June 24th! I just got the appointment yesterday, and it is for Oct. 15th. I’d like to think that it was slow because they just don’t see me as that sick yet. But, my gut tells me that there are just that many people trying to get seen. That is a bit of a worry. On paper the wait times and the number of people waiting at this center look pretty good. But, what the official statistics don’t show is how many people they turn down, and how many are trying to get into the program. Sometimes it feels like trying to get a lung transplant is like trying to get into Harvard. They’re looking for reasons to cull the herd, sort of speak. Perhaps being willing to become the lung transplant coordinator stalker and calling every day is what it takes to convince them you’re worth their time? Who knows? From my current patient perspective, transplant medicine seems a little cut throat. I know that sounds negative, but I don’t mean it that way. It is just the way it is when thousands of people need lungs, and there aren’t nearly enough to go around.

In the meantime, I have the advantage of now watching 16 of my HPS friends go through 17 total transplants. (One has had two lung transplants.) I’m lucky to have a better idea than perhaps some patients of what the transplant team will want to see, and what tests they want to do. I also have the advantage of seeing some of the complications other patients have gone through.

So, with that background, I already set up an appointment with the dermatologist. I don’t have any current issues exactly, but I’ve seen too many HPSers discover they’ve got a skin cancer they weren’t aware of during the transplant evaluation. Depending on the type of skin cancer, it isn’t necessarily a deal breaker, but it does slow things down while it is treated. Why not make sure that if anything needs treating, we are doing it now?

I also went ahead and got a mammogram. I know they will want a current one, and I could do that without waiting to see the transplant center.

Now that I know when this appointment is, I am going to make an appointment with a GI doc. Again, I’m not having any GI issues exactly, but especially with my history, I know I’ll need to be cleared by GI. Better to start educating them about HPS now so it doesn’t slow me down later.

I’m waiting on the hematologist until my appointment because hematology will be such a critical piece of the transplant process for me. I’d rather see someone the center recommends in hopes of speeding things up when we get to more invasive tests etc.

I’m also looking at a weight loss program through a cardiologist. I want to wait until I talk to the transplant program about it, however, because I don’t want a bunch of cardiology codes etc. on my medical records to make them think I have cardiac problems I don’t really have. Instead, this is more a way of getting a weight loss program paid for.

I have also started the pulmonary rehabilitation program and am about half way through it now. This is something I wanted to do a year ago in Kansas, but couldn’t really start until I got to Virginia.

Pulmonary rehabilitation is two-fold. There are educational classes that teach about common issues experienced by all lung disease patients. These are things like nutrition, how the lungs work, breathing techniques to maximize oxygen etc. The second part (three times a week) is one-on-one closely monitored exercise. I’ve never been huge on exercise, even though I’ve always been pretty active because I don’t drive. Still, I think I’ve never enjoyed exercising so much!

I feel totally safe there as they can give me as much oxygen as I need. Not being a gym baby and thin etc. I’ve always found gyms to be pretty intimidating. It is bad enough when you’re feeling so self-conscious, but then well-meaning people are always coming over to ask if you need help. With the cane, it is as if everyone in the building knows you’re there, and they’re all watching to see how you do. Yuck! I’d like to pretend no one knows I’m there! At pulmonary rehab I don’t feel that way at all. No one is judging and everyone is there to help. It doesn’t hurt that I’m the youngest one in my class by decades.

Tuesday, August 11, 2015

Hundred People Search update

Today we added a new HPSer to the patient registry - this puts us at 83 to go on the Hundred People Search (H.P.S.) 

Friday, August 07, 2015

Hundred People Search Update

This past week we have added three new HPSers to the HPS patient registry. This puts us at 84 to go on the Hundred People Search so far this year. Also a side note to blog readers (who have probably all given up on me) - I am so sorry I haven't posted more since the move. It has been SO BUSY!!!!! I do have so much to update, but just trying to keep up with the basics is a lot right now. 

Thursday, July 09, 2015

Hundred People Search Update

Just a quick update this time - we added another HPSer to the patient registry this week. This puts us now at 87 to go on the Hundred People Search (H.P.S.). 

Tuesday, June 30, 2015

Hundred People Search Update

This past week we added three new HPSers to the patient registry. This leaves 88 to go on this year's Hundred People Search. The search for those affected by HPS is more important than ever. Not only is it vital that the bleeding disorder of HPS is accurately diagnosed, but now there is a therapy for the lungs as well. Keep up the outreach everyone. 

Tuesday, June 09, 2015

Fin's new window

For all the Fin fans out there! Fin loves looking out the window and keeping an eye on everything. Here he is looking out the front of our apartment at the street. It's Fin TV! He's got another window in the back, but it isn't as exciting as the window in the front.