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.

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