That Time I Walked Down a Hill and Back Up Again

I had my regular biweekly visit to the cardiologist this past Monday (June 18th). My recent increase in symptoms seems to correlate to "high volume load", or increased fluid retention. This is really the source of most of my symptoms; heart failure describes scenario where the heart is not pumping effectively and so fluid can get backed up in the system. A lot of people get swollen ankles but I tend to distribute the extra load everywhere so that it's hard to tell, except by monitoring sudden increases in weight and, of course, changes in my symptoms (which is why I log both at the end of my posts). At any rate, it warranted another medication change which hasn't had an immediate effect. I had been concerned that I might have to be admitted, right up until the end of the visit. I honestly don't know if I'd rather just get on with surgery or a procedure that will get me on a waitlist for a heart quicker, or delay things as long as possible. I'd still like to be able to work through December; I feel really insecure about what my financial situation will be once I can't work for...3 months? 6 months? A year?

I know I worry too much and it's probably not good for me. I did get a chance to get out of town for a little bit this week and visit with friends. Aggie has gotten pretty good about waiting for me to catch my breath when we're walking and we managed to take a short walk down to the stream while we were there. I took a million pictures, and they all came out like this. It's tough coming to grips with the idea that a hundred yards on a hilly trail is enough to wipe me out for the day.

My July 12th visit to OHSU is the next big step on the path, so I'll focus on that date and try not to worry about the in-between.

Weight: 213.6, Symptoms: Shortness of Breath, Chest Pain, Mild Nausea, Light-Headedness, Fatigue, Fatigue, Fatigue

A Finish Line

After today, it's all over but the grading. The term is at an end and I'll have something like 10 or 11 days off once I'm done with all of the bookkeeping. I had an awesome group for my first ever statistics class and now I don't know why I was so hesitant to teach it. Being able to string a few days together soon where I can just recover from all of the work I've had to do over the past couple of weeks is going to be amazing.

Also, the move is done! We had a ton of help from some awesome people, and the house was just about in order by the end of day one. I still have an office to set up and a good pile of boxes to unpack, but it's totally livable, and I couldn't be happier there. The dogs couldn't be happier either. Melinda has continued to power through and get things done. I don't know where I'd be without her. Here's the backyard, I'll post a few pictures of the inside once I finish off my box pile.

I guess the only thing bringing me back down to earth is the return and worsening of some of my symptoms. I'm really experiencing chest pain like I hadn't before, the nausea is back, and the shortness of breath is more frequent and severe. My next scheduled appointment with my cardiologist is next Monday, and I think there is a small but real chance I will be admitted and have my final evaluation expedited. I'm not sure how long of a hospital stay that would mean, but it could be a while if they decide to go with a procedure. Anyway, I don't know what to expect, so I'd better try not to worry about it so much.

I'm happy to say that I've talked to both of my sisters in the last few days. They've found some of my mom's old journals where she might have kept track of some of her symptoms and medical progress. I'm not sure how useful they will be, but I can't wait to see them out of curiosity alone. I'm also grateful that both of my sisters are making plans to come out here and help me through parts of my recovery.

Weight: 208.6, Symptoms: Increased shortness of breath, frequent chest pain, mild nausea, some light-headedness

It's Never Good News

I had my regular meeting with my cardiologist yesterday. Now with the results of all of the testing, he was ready to make some recommendations. The discussion included everything from being admitted immediately to trying to make it through with medications until December. At the core of the discussion was the fact that my heart won't make it for another year. No percentages this time, just a 1 year time limit. (Of course, I realize there's no way of knowing if it will be 3 months or 3 years, but he was clearly trying to make a case for urgency.)

So the next stop is OHSU where the transplant would most likely be performed. They are going to decide if and how I should be waitlisted or what other surgeries might extend my time and improve my quality of life to fend off a transplant for a year or two. My impression is that within the next six months I will have one of two fairly drastic procedures, neither of which I'm comfortable thinking about, and then be put onto a waitlist for a heart. But we'll see what they say when I go up the hill.

As several people have pointed out to me, this does nothing but increase the likelihood of the situation I had already assumed was going to happen. It maybe firms up the timeline a bit. Regardless, I took it pretty hard yesterday. My plan to try and work more through December is looking less realistic, and I had my first meeting with the social worker who will help manage my case in terms of disability and support. I'm so grateful to have something in my savings account again thanks to the gofundme. All you guys are awesome, you have no idea what it means to me.

Hopefully I can focus on moving this weekend and get my mind off of all of this. Also, these guys help...

Stress Test...Moving Stress.

Yesterday I finished the last test I had scheduled for my transplant work-up. Not to say there won't be more, but I'm through the initial list. It was a stress test on a stationary bike. I nearly passed out after about 3 minutes of biking.

I'm pretty wiped out today, but recently I've felt pretty good. I've been able to walk the puppy almost every day and I have more of an appetite. I think with these medication changes, I'll be able to keep working through until December...unless something happens. The meds make daily life tolerable, but they aren't a cure. And of course it's an overpriced name-brand that seems to be making all of the difference.

The next big challenge will be moving next weekend. It's frustrating knowing that I won't be able to do much more than stand around and watch. I constantly feel the need to try and help, or continuously apologize, when I should probably just get out of the way and be grateful for the help. I am grateful for the help. And along with all of the help from my friends, Melinda has been amazing throughout this process. I'm pretty sure she would just do it all on her own if I let her. She's done all of the heavy lifting for us, both figuratively and literally.

One more week until we move and two more weeks until finals. Good times.

Weight: 207.6, Symptoms: Shortness of breath, some chest pain, serious fatigue.

Still waiting to start waiting

I suppose at some point it would make sense to give a thorough background of my condition(s) and all of the things that brought me to this point. That's probably a little ambitious today. Let me begin with what I posted to my facebook wall a couple of weeks ago.

"This is probably going to be a depressing post, unfortunately. As most of you know, I was diagnosed with heart failure a couple of years ago, and there have been complications along the way. It seems that my condition has developed into acute heart failure, and it's unclear how much longer it can be managed with medication. Today I started the process of being evaluated for a heart transplant. There's no plan or timeline, just more tests before any kind of decision can be made. It could be a couple of months or it could be a couple of years. In the meantime, my symptoms have made it more and more difficult for me to function in the day-to-day.

I'm writing this for a few reasons, not the least of which is to try and minimize future awkward conversations. My other equally selfish reason is that I have come to the point where I can no longer do everything that needs to be done on my own. I'm going to need to ask for help, even more than I have been. I have relied heavy on a few people - [I probably ought to keep these names private in this space], among others. I don't think it would be fair to them, as generous as they've been, to keep asking them to help shoulder my burden because I'm too proud to put this out to the rest of the world. Well, here it is: I'm going to need some help in the coming months to get through all of this.

There will probably be some very specific posts, emails, or texts going out as things come up that I can't handle. I am going to ask, but I don't expect anyone to do more than they are comfortable with. I have no idea why I've been blessed with such good friends for most of my life, I certainly don't feel like I deserve them. But right now, I need them. Thanks."

Since that was posted, I've visited the doctors on my transplant team several times, and gone through a number of tests. Tomorrow is a big day as I'm undergoing the last test on my schedule, and hopefully will get some real news. As things stand right now, I've been told that I have a 50% chance of making it through the next six months without surgical intervention. That would most likely mean getting an LVAD while I wait for a heart.

Finally, I should point out that when I made that facebook post, my symptoms (chest pain, nausea, shortness of breath, weakness, and fatigue) where probably worse than they have ever been in the last few years I've been dealing with this. In the days that followed, some changes to my medications have made some drastic improvements to how I feel. Today has been a reasonably good day.

Weight: 208.6, Symptoms: Usual shortness of breath, mild chest discomfort, mild nausea