Heart Failure to Transplant: Journey to Healing Continues...

I posted the following to my CaringBridge journal on Dec 6, 2014:

Because I felt good most of the week, I did a lot of housework, cooking and outside activities.  I enjoyed feeling productive, and I enjoyed feeling almost normal.  And maybe, probably, OK OK almost definitely, I overdid it.  There, I said it.  (I hate to admit it, and I hate having to revisit this lesson over and over.)  It's so hard to say no to good things when I'm feeling good.

Thursday afternoon the early warning signs that I had been overdoing it were there.  Trouble focusing on the task at hand, trouble pulling myself away from the lure of screens.

But Thursday night I really wanted to stay up and watch Peter Pan Live with my family, so we did.

Friday I tried to take it easy and went to bed before 9 as I usually do.  But I think I didn't drink enough water.  

It all caught up with me this morning when I really didn't feel rested when it was time to get up.  But I really wanted to stay productive and keep feeling "normal,"  so I got up anyway and tidied the house.  Then around 11 I started to feel like I had to go back to bed or I was going to crash.  I tried to get away with just sitting with Elliott and doing some reading to rest, but had trouble keeping my eyes open so finally around noon gave in and took a nap.  Now I'm feeling pretty good again.

<sigh>

After feeling so good this week I was so hopeful that I would be totally and completely healed. 

I did have a great week in terms of minimal symptoms and good levels of energy (at least feeling closer to normal for me, I have no idea what normal is for anyone else).  But my resting heart rate is still very slow.  Hovering in the high 50s all this week and only 52 beats per minute this morning.

And missing one or two hours of sleep like I did Thursday night, and falling just a bit short on my fluid intake still affects me disproportionately. In addition to feeling unrested after a full night of sleep this morning, yesterday afternoon and this morning I've had some slight shortness of breath and a few palpitations. 

I still trust God and know He is my Healer.  I praise Him for the refreshment and renewal He provided this week.  But it would seem I still need a new heart...

And I still need to learn how to live well and in balance within the limitations of my condition.

Heart Failure to Transplant: Stir Crazy

I posted the following to my CaringBridge journal on Nov 3, 2014:

Today I'm feeling very frustrated with my limitations.

This morning I decided to vacuum the living room floor and couches. Now my muscles burn and ache as though I just completed a marathon or something.

I have been feeling good because I've been pacing myself and not overdoing it. But I worried that maybe I was too cautious. Maybe I could be doing just a little more.

This morning I saw the crumbs on the floor and in the couch cushions and thought, "I can take care of that!"

Part way through the job I felt the burn, but ignored it so I could finish what i started. And so I overdid it.

Even now, my mind still wants to keep working, but my body says stop and rest too loudly to ignore. With two boys asleep on my lap, I really have no choice but to rest.

But I'm tired of resting!

I'm bored with most of my quiet sit down activities. I want a change of pace, a change of scenery, at least some connection and company.

I'm feeling irritable and unsettled.

And my arms hurt.

Maybe I should have gone walking with Soul Runners instead...

Heart Failure to Transplant: Don't Forget the Lasix

On Oct 26, 2014, I posted the following to my CaringBridge journal:

Yesterday I felt very good in terms of mood and energy. The air quality was good and my breathing felt almost normal. I think I did pretty well in terms of pacing myself, but it was so gratifying to be able to get more done. Polly couldn't make it and Adam had to work late but I felt able to manage dinner and bedtime on my own.

But other symptoms were there to remind me of my condition. I was very bloated in my abdomen because I had gained about three pounds of water weight over the weekend.

Monday morning, I had called my case manager in Santa Clara, Lina. She advised that I take a second and dose of my diuretic, and call her if my weight hadn't changed much by this morning.

This morning I had only lost half a pound, so I called Lina back. She wants me to continue taking a double dose for the next three days or until the three pounds comes off.

Problem: I took the last pill of my diuretic today. I had called in the refill for mail order toward the end of last week, but it hasn't arrived yet.

Lina scolded me for letting it get so low before I called in the refill. If it doesn't come in today's mail I may have to make a trip to Selma to get another refill or have Adam get it and bring it home to me.

Perhaps I'll have Adam get a refill even if one does come in today's mail. At least then I'd have extra on hand...

I have to get blood work drawn tomorrow for genetics and to check the health of my other organs and electrolyte balance. The genetics blood draw has to be done in Clovis. My friend Crissy is going to ride up with the boys and me, which makes the trip a lot more fun. :)

Heart Failure to Transplant: "No Pay Back Days"

I wrote this post for my CaringBridge journal on October 24, 2014:

Dr. Weisshaar has encouraged me to stay active and exercise as long as I don't have any "payback days."

This term is most often used in relation to Chronic Fatigue Syndrome and Fibromyalgia. Another fancy way to say it is "post-exertional malaise."

It's what happens when I do too much on a good day. It's part of what causes the bad days. It's waking up and feeling like I've been hit by a truck. Feeling run down, exhausted, weak, foggy headed, light headed, sometimes with digestive upset, maybe a little blue.

I knew exactly what she meant by payback days, because I've experienced them many times.

The tricky part is: the payback day may not always be immediately after overexertion. It can be one to three days later.

Last week I had a rough day on Thursday, probably in part to the poor air quality. I felt better on Friday and , kind of lousy again on Saturday, but pushed through to attend a communication skills training in Bakersfield I didn't want to miss. Sunday I felt a little short of breath and tired but we had a family get-together to celebrate my father-in-law's 70th birthday that I didn't want to miss. I fell asleep on the couch toward the end of the get together and missed most of the goodbyes.

Still, Monday I felt pretty good and walked two miles in the morning and still feeling good, decided to take my kids grocery shopping in the afternoon. (Edit: I took only Charlotte, Polly stayed with the boys). I could tell as I was shopping that I was hitting a wall. That evening I was completely wiped out and started having indigestion and IBS type symptoms that kept me up a good part of the night. Tuesday I felt pretty horrible, the shortness of breath was the worst it's been in a while and I felt fatigued and heavy with every motion I made. I was still pretty worn out on Wednesday but on Thursday was feeling good again.

Thursday a friend took Zachary to a pumpkin patch while I stayed home and rested with Elliott. Then my mother-in-law came over and watched the boys while I went to an appointment in Selma. When I got back, Polly was here. I wasn't exhausted in the least and felt up to making dinner for the first time in a while.

Wednesday and Thursday I did a lot of internet research and reading about the concept of avoiding payback days by pacing, and knowing when to rest.

"Rest when you feel tired" wasn't specific enough for me or something because I wanted to know how to tell I was "really" tired.

Following some interesting rabbit trails, I learned some fascinating information about the way the body's mitochondria use energy under various conditions. You may remember from biology class or PE that during anaerobic exercise lactic acid or lactate is a byproduct of the body's effort to keep up with the energy demands. The point where this starts happening is called the anaerobic threshold, and it's also the point where your aerobics instructor might be saying, "Feel the burn!" because lactic acid causes muscles to ache or burn. Due to the neurohormonal changes triggered in the body by heart failure, both the heart muscle and skeletal muscles change the way they use energy and reach this anaerobic threshold earlier.

(Side note, during my bicycle exercise test in Santa Clara, this is part of what they were measuring. Based on the measurements they were taking of my breath and heart rate, they could see that I reached my anaerobic threshold within the first minute of the test).

Bottom line: when I "feel the burn" I should stop and rest.

More science-y stuff: when I "feel the burn" and keep going, I'm forcing my body's cells to use up their stores of ATP (the TP stands for Tri-Phosphate), and delve into their stores of ADP (Di-Phosphate) to synthesize more ATP, and if I keep going, delve into their stores of AMP (Mono-Phosphate) to synthesize more ADP and ATP. Once AMP is used up, it takes a few days to be replenished, hence, the payback day or days!

Today I decided to not go walking, but instead to do a little yard work as I discussed in the Project Idea entry. I used a hoe to clear away debris and dead weeds from one small section of an oval planter bed to the east of my patio. I stopped as soon as my arm muscles felt tired, and rested. I continued for a bit again, and then knew I was done and rested again. I used my rest time to make a list of ideas for things I'd like to do in the backyard. When I felt rested, I hung up a basket on the patio and filled it with artificial flowers. Then I walked slowly to the front yard and pulled dead parts off of the plants in front of our white fence. I returned to the back yard and picked up a bit of trash and then realized Polly was here and went to let her in. Then I was definitely tired and spent the remainder of the morning on the couch with my boys, watching shows on Netflix until Zachary fell asleep and I got up to eat my lunch.

I'm feeling like taking a nap now, so that is probably what I will do.

This evening is Charlotte's school carnival. I bought 10 tickets for her to use, but I wonder if I will be up to going. Perhaps the fact that I'm wondering is a sign that I'm not. I need to learn not to push it (SO HARD when there are SO MANY things that are SO FUN and SO INTERESTING to do!)

We'll see how I feel after a nap.


Update on Oct 25, 2014:

Yesterday afternoon I did take a nap. When Adam got home we all went together for the last 40 minutes or so of Charlotte's school carnival.

I woke up feeling good, despite having a little trouble falling asleep after Elliott's 3 am wakeup.

So maybe I'm getting this "not overdoing it" stuff figured out. Or maybe the payback is still coming?

Either way I don't have much planned for today. Want to tidy the living room. Maybe chop some veggies for the week. Help Charlotte plan her outfits for Red Ribbon week.

Some of the reading I've been doing on proper pacing suggested never having back to back days of exertion. I'm pondering what that would Iook like and mean for my weekly schedule in the face of many appointments.

One thing I have to come to terms with is that fun things take it out of me as much as work. Going to MOPS or Bible study or the Mom2Mom support group counts as exertion ... Last night before I fell back asleep it occurred to me that the talking and connecting I do at those events is tiring in its own way. Which saddens me because I thrive on connection and communication...

Hmmm. I need lots of wisdom and discernment.