Happy Birthday to Me

Xmas dinos and blankets, Love our tree/

So, it's 1 AM and I have that boring, old run-of-the-mill type insomnia. It's not due to my symptoms, I'm just not able to stay asleep. Seems like a good time to catch up here.

Yesterday was my birthday, the day before was Xmas, I got to spend two awesome days with Melinda playing games, watching movies, and visiting with her family.

If this is the first place you're hearing about it, I AM on the transplant wait list. It was a bit anti-climactic because I was on the wait list but on hold while they sorted insurance details out. I didn't expect to be activated before the new year, but they got it done before Xmas. So now I'm waiting for a phone call that might come anytime day or night, and I'll have 6 hours to get to Seattle. My bag is packed.

Waiting for birthday pizza.

Symptomatically, I've had a couple of really rough days in the past week or two, but I'm currently doing fine. Every time things get rough, I feel like I'm teetering on the edge of needing the LVAD heart pump, but even that has become a less daunting prospect. Turns out the recovery time for the LVAD would be mitigated by my moving up significantly on the wait list, so it's not the extra 12-18 months I'd worried about. It might add no additional time at all, but no one can predict when the right heart will be available.

All-in-all, by biggest complaint these days is how bad my shortness of breath is. I can barely manage to walk a block at a reasonable pace, and two or three blocks at my snail's pace is enough to require a sit down. Doing things like laundry, dishes, and cooking has become a real challenge, and won't be possible for much longer. I vacuumed the rug the other day, it felt like I'd run a marathon.

Weight: 212.4, Symptoms: Severe shortness of breath and fatigue, mild nausea, some dizziness

Quick update

My case was not presented on Thursday. No explanation. Maybe next week?

I'm unhappy.

Tomorrow?

Well, it seems like every time I make a post I'm correcting something I said in the last one. I thought they would be presenting my case on Thursday 11/15. This is when the transplant team gets together and decides if I should be placed on the wait list for transplant. Unfortunately, my cardiologist at UW took that day off, and given that these presentations are only done on Thursdays, Thanksgiving pushed it back even further. I was not presented last week, again because my cardiologist wasn't available. So, it should be tomorrow.

I can definitely feel the decline. I remember a time that I went up two flights of stairs with a full bag of text books on my way to class and it left me so winded realized that I kept my students waiting 10 minutes while I caught my breath. At this point, walking from one end of the house to the other is enough to put me out of action for a spell. My cardiologist here in Portland says I probably have a few good months before surgery will become necessary. I hope that surgery is a transplant and not a pump. That would push the process back by at least a year.

Weight: 212.8, Symptoms: Shortness of breath, nausea, fatigue, dizziness

Yesterday was a good day.

She's keeping me from falling down the ravine

Yesterday morning I woke up in a cabin on the mountain. I married the woman I love in front of the fire place. I spent the day with friends and had a great dinner with some of my favorite people. I had a great weekend.

I had the last of my transplant evaluation trips to Seattle last Wednesday (11/7). There was a lot to do, but we got it all done. Had a right heart cath, met one of the transplant surgeons, even managed to squeeze in an unplanned visit with my cardiologist there. They should be presenting my case this Thursday, so it's possible I'll make the wait list by the end of the week.

I got a call this morning from the office of my EP this morning. My ICD has been sending them signals that my heart rate has been irregular and elevated. "Not dangerously irregular," he said. That sure made me feel better.

Tonight my heart is racing and my fluid load is high. My hands won't stop shaking and I'm having trouble concentrating, making this entry a real chore. My options are to wait it out or go to the hospital, where they'll run a bunch of tests while I wait it out. So, I'll wait at least until I can tell if it's getting better or worse before heading to the emergency department. This is probably a result of not eating the way I should and over exerting myself the last couple of days.

Anyway, yesterday was a really great day.

Weight: 219.2, Symptoms: Fatigued, short of breath, light-headed, nausea, shaky, confused, and the skin on my hands seems to be changing color. Seriously, that's what I get to call my doctor about tomorrow.

 

I'm going to ride the damn bike again.

A lot has happened since my last post, so here goes.

Andrew lecturing me

For starters, the second trip to Seattle on Friday 10/19 was more encouraging than the first. I met with the infectious disease specialist who seemed perfectly competent and the nutritionist who might have been a little crazy, but was otherwise delightful. I met with the coordinator again to finish my required education on what to expect and had a couple more tests done. The traffic home was worse the second time.

My rhythm troubles worsened as sometime over that weekend I developed an atrial flutter. My heart was racing and my shortness of breath was so intense that I barely felt functional. It was a week before it was diagnosed, and having gone on for so long, they weren't able to correct it via cardioversion because a clot might have developed in my heart and could potentially cause a stroke. I underwent a procedure on 10/31 (spooky) to check for clots (none), and then was zapped back into rhythm.

Next week is going to be interesting; I'll be repeating the exercise stress test on

Brent: "Sit in the chair!"

Monday, I expect to perform much worse than I did in may, but it's one of those tests that my cardiologist at UW wants to repeat. Apparently I "don't look as sick as the numbers indicate", so I'm going through the whole course of invasive tests again. My next trip to Seattle will be on 11/7, when I will have multiple invasive tests. I'll also meet the transplant surgeon. Oh, and on Tuesday I start taking insulin.

While I'm on the topic, here's a list on conditions that are almost certainly a result of living with cardiomyopathy/CHF: Anemia, gout, diabetes, hypothyroidism, and I might as well throw in anxiety and depression. Good times.

Anyway, I have something to look forward to next week, something that makes all of this struggling worth it (see below). I'll try and update after the next Seattle trip.

PS If you follow me on facebook, I have a habit of saying 'brb, heart surgery' before every heart related procedure. I promise that if it's something more dramatic than sticking probes in there, I'll be sure to specify.

Weight: 215.8, Symptoms: All of the usual, but mostly just very, very tired.

6 hours to Seattle

Not really, it was 3.5 hours to Seattle, but if I get on the waitlist, I'll be able to wait in Portland as long as I can get to Seattle in 6 hours when the time comes.

The visit itself contained few surprises. I met with the transplant coordinator and the social worker and we talked about the same kinds of things that I'd covered with the people in those roles at Providence and OHSU. They both seemed competent and helpful and it was a generally good experience.

The visit with the cardiologist was a little discouraging; I'm to repeat tests that I've gone through within the last month or two, and that means more trips to Seattle in the near future. In the very near future in fact, as I have another batch of appointments on Friday, including the infectious disease specialist, nutritionist, back with the coordinator, and some tests. There will be at least one more trip in the next week or two.

As always, I wouldn't be able to do any of this with out the support of my friends, whom I'm certain will be sick of long car rides with me if they aren't already.

In other news, I'm having a test tomorrow to try and rule out Crohn's (yay) and I've been in an out of clinic trying to get my internal defibrillator to do a better job of handling the recent uptick in irregular heart rhythms.

Oh, on fun consequence of all of these tests this week is that I'm essentially required to fast for most of the next 3 days. I will be making the most of my brief windows of exceptions.

Weight: 216.8, Symptoms: Fatigue, shortness of breath (worse than normal), dizziness, nausea

It's been a long wait, but there's more waiting to do

I haven't posted here for a while. It took a lot longer to hear from the University of Washington than I'd expected. But things are booked now for Monday 10/15 - and I'll be able to take care of the evaluation in just one day, so no long term stay in Seattle for now. My sisters came out from back east to visit. I don't think I'd realized how depressed I'd been until they got here. Having them around was amazing.

There were a couple of weeks there where I waasn't getting much sleep, despite the constant fatigue. That seems to be done with, now I just have to try to sleep less than 12 hours a night. In any case, I think I prefer oversleeping to the alternative.

I feel like I should have more to report here, but I'm sure I'll have plenty to say after Seattle. My symptoms are getting incrementally worse, but I've not had any serious episodes for a while.

Weight: 216.6, Symptoms: Mild constant nausea, fatigue, shortness of breath, mild chest pain, dizziness, anxiety, depression

Maybe sometimes it is good news

This is unpleasant

So let's start with the good news: I'm back on the path to transplant. My hospital stay last week was to double check the pulmonary hypertension the was keeping me from being a good transplant candidate and the numbers came back about as perfect as they could. Of course, it can't all be good news.

While I am extremely relieved that I'm looking at a chance to get the procedure that gives me the best odds of living as long as possible with a relatively normal quality of life, OHSU is still suspended indefinitely. That means I'll be headed to UW in Seattle. We'll have to go through most or all of the evaluation again, which I sincerely hope they will have me do as an inpatient so I don't have to find housing and have things stretch out over several weeks.

More pleasant

From my discussions with my cardiologist here in Portland, it's possible that once I get to a waitlist, I may be able to stay in Portland, and after the surgery I might be able to get my aftercare transfered back home as well. If these things don't happen, I can only imagine how much it will cost to stay in Seattle for months during the wait and recovery times. And I can't imagine getting through all of this without my support people. Once again, it comes down to money.

Anyway, I'm taking this all as a net positive and working to do what I can to mitigate the negatives. One life altering surgery is better than two. Of course, as fast as things have been changing recently, who knows what next week will bring. I'll keep you posted.

Weight: 214.6, Symptoms: Anxiety, I-didn't-think-the-fatigue-could-get-much-worse fatigue, mild chest pain, shortness of breath, dizziness.

And just for fun, let's change the whole game

A lot of things did not go as I expected.

When I made my last post, I had assumed that LVAD surgery was eminent. I went into the hospital on Wednesday and slowly learned what the time line was actually supposed to look like. Tests through Friday, then scheduling the surgery the following week, leaving me in the hospital for a week or so without even know when surgery was going to take place. But that's not how it panned out. I was released on Friday with the plan to meet again with the team the following Thursday (today). The reason I haven't updated the blog until today was because I really had no idea what was going on. Now I have some idea.

First of all, there's this. My doctors at Providence, given the fact that I had been deemed unsuitable for transplant at this time by a transplant team on the verge of collapse, and given their own judgment, have suggested a second opinion/evaluation with another transplant team may be in order. So the new plan has me being admitted to the hospital on Tuesday of next week, undergoing a series of tests (one long test, really) to check on the pulmonary hypertension that ruined my eligibility in the first place. Then, toward the end of next week, I'm either going to be referred to another transplant program, most likely in Seattle, or have the LVAD surgery the following week.

I can't begin to express how frustrating this is. Going straight to transplant has always been the priority, and finding out that I might still have a shot at that is very exciting, but it would mean scraping together the funds to spend up to a year in Seattle. There was brief mention of looking for a transplant program in a location where I had friends/family that I could stay with, but even then I'd lose all of the support I do have here. And I'd be away from Mel forever. I have so much unpacking of this mess to do still. At least I have the weekend to figure out how to save my life.

Weight: 212.0, Symptoms: Fatigue, dizziness, anxiety, depression, shortness of breath.

The Path to Full Conversion Cyborg is a Slow One

I'm being admitted tomorrow for my surgery. It's open heart surgery that will result in a mechanical pump attached to my heart. I will have a power cord sticking out of my abdomen and a battery pack to carry around. I'm not sure if the actual surgery will take place tomorrow or Thursday, possibly even Friday, but I'll then be in the ICU for a few days, then in a recovery room at the hospital for a couple of weeks. When I go home I'll need 24/7 supervision for some period of time. A month? Honestly, I don't recall the details. I'm leaving the details in others' hands. At this point I'm just along for the ride.

I'm terrified. Not so much of the surgery, I'll be knocked out for the duration. Not so much afraid of dying; it's a risky surgery, but fairly routine for these people and I'm otherwise young and healthy. Not so much afraid of the pain, though I've been told that will be significant. There are drugs for that. I'm terrified at the prospect of adjusting to life with a heart pump. I'm told that this might get me to the transplant list in as few as 6 months, but if that doesn't happen, the pump is likely to keep me alive for about seven years. Seven years with a power cord sticking out of my abdomen and a battery pack to worry about. That's what terrifies me. And I guess death too.

So, I guess my next post will be after the fact. I don't believe in god or prayer, but if you do you're welcome to send some my way. I was going to end this with 'see you on the other side', but I realize that could be taken rather morbidly. So...afk for now. l8r.

Weight: Dunno, Symptoms: Whatever

Open heart surgeries, 2 for 1 special

I wanted to make a post this weekend about how hard it was to be out of work, but my cardiologist had other ideas.

I was told yesterday that I'm not suitable for a heart transplant because of the pressures in my lung (a new heart would struggle to keep up and likely fail). That doesn't mean I won't every be suitable for a transplant, but some serious intervention is going to be needed to keep me alive and to correct those pressures before that can happen. This is the LVAD heart pump. Ideally, this will be a bridge for me to reach a heart transplant, and this is a very common path for transplant patients. The downside is that this surgery is every bit as, if not more, traumatic that the transplant itself. So, if all goes as planned, I will be out of commission for 3+ months starting Wednesday August 22nd. And if everything goes perfectly, I might be on the transplant list as early as 4-6 months from now.

I'm going to be scrambling for the next few days getting things in order and lining up a support network to help with day-to-day life once I get out of the hospital. This is going to be so hard on Mel and she has put up with so much already. If any of my local friends reading this feel like they have some time to help out, even a little bit, please let me know, or contact Jef or Melinda. You can even comment here if you need a way to get in touch. I feel pathetic asking for help again and again, but this is the hardest thing I've ever done, and now between the LVAD and hopefully the transplant, I get to do it twice. I need all the help I can get.

Weight: 210.0, Symptoms: Mostly fatigue, dizziness, shortness of breath, anxiety

Too much to say

First of all, today was the first possible day that my case might have been presented to the board for consideration of being put on the waitlist for a transplant. I haven't heard anything, but I'm not sure that I would right away, regardless of the outcome. All I can do is wait, they may not even get to me for another week or two.

At OHSU.

The other big event was really last week. The morning after I wrote my previous post (the one with all of the complaining about how awful I felt) I woke up feeling worse and spent several straight hours vomiting and heaving to the point that I almost passed out, and I was having a real tough time breathing. An ambulance was called and I was taken to OHSU. They treated the nausea, though it took a while for it to help, and they started looking for a heart-failure related cause. There were a couple of indicators that it was heart related, but many indicators that it was not, or that it was unusual in it's presentation. By about 5pm, the nausea was gone and the heart failure team was cautiously optimistic that from their perspective, it wasn't an ongoing heart issue. So, with my symptoms gone and okay from cardiology, I was sent home around 7pm.

By 8pm, I was vomiting and heaving uncontrollably to the point that I was having trouble breathing. Mel ran to the pharmacy and got the anti-nausea meds they prescribed, and they did help, but only marginally. I spent the night on the cough hacking, coughing, puking, and spitting. I did fall asleep for about 90 minutes and woke up to find the symptoms had subsided. Mel stayed home with me, which is a good thing because that respite lasted about 45 minutes. By 10am we were on our way to the Emergency Department at Providence this time, since it was closer and Mel was driving. The trip through the Providence ED was similar only they had the advantage of the previous day's test results to guide them. The managed to alleviate the symptoms by 3pm using the same drugs they had used the day before. This time they decided to keep me for observation overnight. It was the right move as it turns out because by 8pm I was vomiting...you know the rest. They maxed me out on the anti-nausea medication they were willing to try with little improvement. But eventually, around midnight, the symptoms subsided and I was out like a light.

At Providence. Note the tube.

The next day (we're on Friday now) I was up at 7am to get a right heart cath. So I was zoomed down to the cardiology lab where they jammed a sensor on a line into my neck and along a blood vessel to my heart to gauge the pressures in there. I was told that things "weren't worse than expected" which is just what every patient wants to hear, and that they were leaving a "swan" inside of me and sending me off to the ICU so that values could be tested every few hours going forward. Now, if you know me you probably know that the idea of A FUCKING TUBE STICKING OUT OF MY NECK FOR THE NEXT, OH I DON'T KNOW, COUPLE OF DAYS MAYBE IS MY IDEA OF A LIVING NIGHTMARE. Every moment with that thing in I was twitching, shaking, complaining, or at least doing everything I could not to do one or more of those things.

Home.

But I digress. It was stuck in me for about 36 hours before they finally took it out, which was it's own kind of hellish experience. Within a few hours I was out of the ICU and into the cardiology ward for one more day of observation. With the fluid load out of me and no more recurring symptoms, I was sent home Sunday afternoon.

So, the conclusion was that I was carrying excess fluid volume, but that it was a relatively small amount that just happened to be collecting in the perfect spot to cause these symptoms. I suppose this means I will have to triple my efforts to restrict how much I drink and what I eat, because that is not an experience I want to repeat again. I'm so grateful for Mel who was there with me every day, and Jef and Andrew who both showed up to help keep me sane. I just want this to be over with. I'm not going to be able to go back to work, but I think I'll deal with that next time.

Weight 209.6, Symptoms: Worsening fatigue, shortness of breath, overall weakness

You Can Skip This One

I normally don't write these when I'm feeling particularly poorly, so excuse me if this one is more negative than usual.

Before I get to all of that, I met with the pharmacist and the social worker yesterday. The pharmacist really had very little to say, which is fine. The meeting with the social worker went on for almost 2 hours. She has me feeling more optimistic about my financial situation, though it sounds like there will have ti be more of the fundraising (begging for money). At least she knows of corporate and charitable funds that may help, as well as taking point on getting benefits and helping me with insurance when I can't work. And that brings me to the biggest news:

I could be waitlisted as early as next week.

A more likely timeline would put it a couple of weeks out, but either way it's sooner than I had expected. It's terrifying, but it's great news. What's not so great is that I'll have to stop working as soon as it happens, which means there is a very good chance I won't finish the term. It will be cutting things close anyway. That's really disappointing, I feel like I'm letting a lot of people down.

The other bit of good news that came from my meeting with her was that I'll be able to see the dogs while I'm in the hospital. That's a huge deal.

My Wednesday appointments have been moved, so not much else is happening this week. I have iron infusions this weekend, and a ton of grading to do.

Now I'm going to complain.

I feel awful. I can't get through a 2.5 hour lecture without chest pain and nausea, and I have to do it twice on Tuesdays and Thursdays. I'm teaching 2 classes when I'm used to teaching 4 and it feels like the hardest thing I've ever done. I feel like someone has been kicking me in the chest for the last 3 hours. My head is swimming and my body aches. I am fatigued to the point of pain. I've had the simplest things trigger waves of pain and nausea; tying my shoes, sweeping the floor, getting out of the car, walking for more than a minute or two. It's not like this every day, but on the days I work it can be brutal. Today has been one of the worst.

The things that are keeping me going are the dogs, my friends, and escapism. My friends show up. Mel is an angel, I wouldn't get through this without her. Every time I've asked for help, someone steps up. Jef and Andrew, if you're reading this crap, I hope you know that you've saved my life.

Okay, that's enough of that.

Weight: 214.6, Symptoms: All of them, bad.

Still worth it

Mel waiting with me for the surgeon

Yesterday I met a couple of surgeons and had some labs done. Today I met with the nutritionist, had an ultrasound, and had some labs done.

The meeting with the surgeons made a lot of very scary things very real. They came off as competent, confident, and optimistic, but they also took the time to describe in detail what a transplant would be like. The thought of waking up a day or more after it's over with tubes coming out of my chest is extremely unsettling. Mel came with me and I don't think it was any easier for her to hear than it was for me.

Aggie at her first training session,
right after peeing on the floor.

The meeting with the nutritionist was only slightly less upsetting, as she took the time to list every single food that I would never be able to eat again after the surgery. We went over how I should be eating leading up to the surgery which was helpful and less disturbing.

Everyone has continued to insist that I appear to be a good candidate for a transplant, which is still the best option...as it is probably the only option. One thing that has started to weigh on me is that I will be in the hospital and away from the dogs for several weeks. That's a bummer. I've started taking Aggie to a trainer with the hope that she will learn enough that I'll be able to walk her and handle all of her anxious energy as soon as possible during my recovery.

Next week I will take care of most of the rest of the evaluation and I'm still hoping to hear something about being waitlisted by the end of the month.

Weight: 213.4, Symptoms: a little chest pain, a lot of fatigue, shortness of breath, more than typical light-headedness

Here we go...

OHSU does not mess around.

I think I've spoken to one or more of the transplant coordinators or one of their schedulers every day for a while now, and that's probably going to continue. I've scheduled a slew of cardiology visits, device checks, meetings with the transplant surgeon, pharmacist, social worker, nutritionist, and palliative care specialist. I had some labs and a chest x-ray yesterday. I have a two hour patient class scheduled and I have to get checked out by a dentist. Again, I have to be checked out by a dentist as part of my heart transplant evaluation.

With all of this going on, I'm going to have to cut back on work in a week or two. I've also informed my school that I won't be able to teach after this term. That's going to be real hard, but once I'm on the transplant list, I'll absolutely have to stop working. I guess that just means we're getting closer, and that's good news, but it's still tough.

I do still worry about whether I'll get approved for a transplant, though everyone has gone out of their way to tell me what a good candidate I am. I'm worried about money, my relationship, my dogs, and everything else that has been getting more difficult recently. As it turns out, this is a fairly stressful ordeal. I do not recommend it.

I should have a lot more to say over the next few weeks, I just wanted to make a quick update here.

Weight: 211.2, Symptoms: So much fatigue, some shortness of breath, weakness, light-headedness

I Get to Keep It!

I went up the hill to OHSU yesterday - then I rode the tram back down because the transplant team apparently works at the site on the waterfront. I had a lot of my questions answered, most of them confirming what I had already been told or had pieced together. For starters, they are definitely going forward with the transplant evaluation and there is clearly an urgency to get to the waitlist. I will be going through another series of tests over the next month and I expect to know what my level of priority will be before the end of August. Otherwise, our conversation went all over the place...here are some of the highlights:

• I can keep working as long as I feel up to it, and there's nothing particularly unrealistic about trying to keep going until December, though changes in my condition will ultimately dictate the reality.
• After the transplant, I will need to be under constant supervision for at least 30 days. I predict some of my friends are going to get real sick of me.
• I will be meeting a lot of doctors and support staff over the next little while, and I may not see the same doctor twice for a bit as the transplant team familiarizes themselves with my case.
• It costs nothing to ride the tram down the hill, but it's $5 dollars for a "round trip" ticket up the hill.
• The wait time for a heart in Oregon is six months to a year, and that means there is still a very good chance I will need an LVAD (heart pump) as a stop-gap at some point.
• While giving transplant patients multiple hearts was done in the earliest days, it proved to be ineffective and so my request for a back-up weasel heart was denied.
• I get to keep the old one when it comes out!

I guess I'll have plenty to report in the next few weeks. I was reminded how lucky I am to have so many great people in my life when I learned how having a support network of family and friends around greatly increases the success rate of the procedure. Speaking of family, my mother's journals have arrived (Thanks Jen!) I look forward to getting into those.

In other news, I might have Crohn's disease. 

Here are some pictures of the pills I have to take throughout the day, morning - afternoon - evening.

Weight: 216.4 (ugh), Symptoms: Shortness of breath, mild chest pain, mild nausea, fatigue, fatigue, fatigue

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