Heart Failure to Transplant: Good Days and Bad Days

The following was published on my CaringBridge journal on Oct 10, 2014

I ordered a free book from the Pulmonary Hypertension Association called "Someone I Love has PH" to help me explain to Charlotte a little of what is going on with me.


The book talks about good PH days and bad PH days, and that there is not always a good explanation for why one day has more symptoms than another.


Yesterday was a pretty bad day in terms of my shortness of breath and energy level. Today is a pretty good day.


My brain wants to know the reason. I want to make a magic formula out of whatever I did yesterday that made today a good day or whatever I did the day before yesterday that made yesterday such a bad day.


I do know that in general the less sodium that I eat, the better I feel the next day. I do think i can see a trend that eating so-called "inflammatory" foods, or really any processed foods, leads to more bad days, and days when I eat more whole foods in as close to their natural state as possible and minimize or eliminate my intake of grains, are days when I generally feel better. I have learned that taking Lasix helps with shortness of breath even on days when the scale says I haven't gained any weight.


I want to make choices that support my body as it copes with a heart that beats inefficiently, and pulmonary blood vessels that are a bit too narrow . It's not really anything mind blowing, just the same basic stuff anyone can do to stay healthy. Walking a few miles a few times per week, eating more whole fresh food. It just has such a greater urgency now.

Heart Failure to Transplant: Enough

The following was posted to my CaringBridge journal on Oct. 8, 2014.

I've been reflecting on this word a lot lately.

I'm so used to being busy, to being involved, to volunteering and helping others outside my family. 

So there are a lot of emotions associated with having to slow down. 

I read in Ephesians 2:10 about the good works God prepared in advance for me to do, and want to figure out what I can still do to help others within my new limitations.

And I hear the Spirit say and others confirm, "Mothering is enough."

Each day I look at what I think I should be doing around my house, and don't always have the energy or time to do it all. 

And yet, somehow by God's grace and power I am able to do enough.

Today I read a devotional in Word for Today that talked about the fact that God gave only enough manna for that day.  I was also reminded how Jesus taught us to ask for our daily bread and not to worry about tomorrow. 

So I will refocus when I get anxious and feel inadequate. 

Just today.  Just this moment.

It is enough.

Heart Failure to Transplant: Diagnoses

I posted the following on my CaringBridge journal in 2014:

In 2010 I saw my primary care doctor to investigate the irregular heart beats I had been feeling.  At first she wanted to brush it off as just anxiety, but decided to do an EKG just in case.  After reading the results of the EKG she was insistent that I see a cardiologist right away because the pattern of my heartbeats was consistent with left ventricular hypertrophy.  The cardiologist did an echocardiogram and confirmed the diagnosis of Hypertrophic Cardiomyopathy (HCM).

He told me it wasn't a big deal, just mostly annoying because of the palpitations, which I could control by avoiding caffeine and chocolate.  Oh, but in rare cases some HCM patients experienced Sudden Cardiac Death.  Mostly athletes, so just avoid strenuous activity and I should be fine.  Come back once or twice a year to make sure it wasn't getting worse, and that would be it.

Fast forward to 2014, and a few days after giving birth to my third baby, I was diagnosed with pneumonia from a chest x-ray.  Antiobiotics didn't make a difference, and a few days later, I went to the ER with extreme shortness of breath worse when lying down, new swelling in my lower legs, and one instance of coughing up blood.  They performed a chest CT and then admitted me, I thought for severe pneumonia. 

They treated me with IV antibiotics and Lasix, and performed an echocardiogram. As I neared readiness for discharge two days later, a doctor informed me that the primary reason for admission wasn't the pneumonia which was actually not that bad, but the pleural effusion related to heart failure.  I was sent home with Lasix to take and instructions for a low sodium fluid restricted diet until the remaining of my leg swelling dissipated.  Then I threw it away, because I was sure everything would go back to the way it was.  I stopped watching my sodium intake and limiting fluids as well.

I had an echocardiogram a month later and because of the results of that was referred to the Heart Failure and Transplantation clinic in Santa Clara.  My heart now had thickening on the right ventricle as well as the left, and the atria were dilated.  I had a few phone appointments and did some blood work remotely.  The doctor wrote me a new prescription for Lasix, which I kept forgetting to fill.  I understood that I should take the Lasix only if the leg swelling retuned, or if I gained weight rapidly.  I was supposed to weigh myself every day, but sometimes forgot.  Toward the end of the summer, the times I did weigh myself I noted the scale inching up a bit and my waistline getting a little thicker but figured I may have been slightly overeating or something.

Then at the beginning of September, the extreme fatigue and shortness of breath/discomfort when breathing returned.  I felt sure I had pneumonia again.  On the phone with the advice nurse, I was informed that my chart showed I have pulmonary hypertension (PH).  To my recollection, that was the first time I had been given that information, so I double checked with my PCP who confirmed that my most recent echo did show PH.  A chest x-ray ruled out pneumonia, so I was referred back to my local cardiologist, Dr. Z.

The cardiologist in Santa Clara who had been following my case had left Kaiser, but before he left he had mentioned wanting me to have an exercise tolerance test to see if I needed a implantable defibrillator or pacemaker.  I had been waiting for someone to call me to set the appointment and then had almost forgotten about it. 

Dr. Z got me in touch with another cardiologist at the Heart Failure and Transplantation clinic, Dr. Weisshaar.  She put the order in for the Treadmill EKG, and answered all my questions very clearly and directly. 

The PH is secondary to Stage C, Level II or III (depending on if I'm having a good day or bad day) Heart Failure, which is a result of my cardiomyopathy.  Because of my young age, I most likely will need a heart transplant one day, but hopefully not for a long time with proper lifestyle management.

I filled the prescription for Lasix, adopted a strict low sodium diet and began weighing myself faithfully first thing in the morning and last thing before bed.  I lost four pounds of water weight in the first two days and continued to lose a pound a day for the next few days.  My thickened waistline disappeared, and my breathing eased a bit. 

However, I'm still feeling worse now than I did over the summer.  I fatigue and get winded easily, and sometimes get lightheaded.  My resting heart rate is slow, between 57 and 60 beats per minute, and my blood pressure is quite low. 

I had the Treadmill EKG on September 24.  According to Dr. Weisshaar, the results mean I don't need an implantable defibrillator or pacemaker, but because my exercise capacity is so poor, they want to do an VO2/cardiopulmonary stress test to determine why. 

On October 13 I'll be driving to Santa Clara to ride on a stationary bicycle while hooked up to an EKG and breathing into a special tube.  Best case scenario, they discover my poor exercise tolerance is just because I'm deconditioned (fancy talk for just really really out of shape).  Worst case, they determine that I might need a transplant sooner than originally thought.

My case is a little tricky to treat with medication because of my slow heart rate and low blood pressure.  Most people in heart failure have rapid heart beats and high blood pressure, so most of the drugs approved to treat heart failure work by slowing the heart rate and lowering blood pressure. 

More Thoughts on Torah and Food

Just before we packed up from Southern California and moved to Central California, I read something that made me reconsider what I wrote previously. Namely this: that although God's word is valid at all times, there have always been parts that apply differently to different people. For example, there were restrictions that applied to Levites that didn't apply to the average Israelite, and there were restrictions that applied to men that didn't apply to women. Just as at the cross there is neither male nor female and yet there are definitely still differences and different roles for the genders in this world, so too it could be argued that although there is in one sense no distinction between Jew nor Gentile at the cross, in another sense there are still different callings/different roles.

I can still take a high view of the Old Testament without attempting to live out parts that were not meant for me.

So, seafood is still expensive and I'm not rushing out to try rabbit or snake or snail, but I am using up the ham we have for lunch meat and not stressing about it at all. One could say I fasted from it for a time but no longer feel led to do so.

Matters of the Heart

Palpitations, lightheadedness and fatigue have been a little worrying. Two abnormal ECGs this past Wednesday and Friday honed the worry into fear and even, at times, panic and a sense of doom. An echocardiogram tomorrow will reveal the truth. Is all the fear for nothing? Is it a minor problem? Is it a major problem? Is it a deadly problem?

Mortality is a fact of life. Nothing is certain except death and taxes, as the saying goes. How should knowledge or even the hint of a more specific threat to my life change the way I live?

As I lay in bed this morning, greeting God and a beautiful new day while snuggled next to my sweet sleeping daughter and husband, I knew the answer.

The facts are these: God has always known the number of my days, and only He knows it. Life by its very nature is fragile and could always end or change dramatically at any moment, despite our typical illusions to the contrary. Pookaloo’s accident, my father-in-law’s recent illness and surgery, and my grandmother’s recent shoulder-breaking fall have taught me that much.

Therefore, my choice must be to fight the feeling of doom and live as vibrant and full a life as possible with as many days as God has seen fit to give me. Whatever the diagnosis, it must always remain merely one piece of information to be considered in making wise decisions, not the ruling fact of my life.

This choice is one that must be made repeatedly: each time I feel another palpitation, each time I feel lightheaded, each time I get winded too easily. Perhaps I will reach a point where these episodes don't make me stop and question whether I'm experiencing my final moments on earth, but for now they do. As long as that is the case, it is the gift of faith and hope to acknowledge that feeling, let it go and press on to focus on the present, on the mundane and glorious details of every day life.

Idolatry

The Holy Spirit has been gently convicting me of a course correction I need to make.

The past few days I have been obsessively researching healthy living, holistic cures, diet plans, recommended supplements, etc. Yesterday I got so overwhelmed by all that I "should" be doing for myself and Pookaloo that I was on the verge of tears.

Then a gentle nudge. I read a message board post from a fellow mama about being healthy consuming her every thought. Some kind women graciously pointed in the direction of these two links:

Can Natural Living Become an Idol?

Health Food Junkie

What timely words for me.

Ever since I started on this journey to try to figure out Pookaloo's eczema, there has been a still small voice of warning that perhaps I could take it or was taking it too far. Upon reflection, I think I'm particularly vulnerable to going too far with this right now because it is one area I feel like I *can* control when so much of our life is truly out of my control at them moment (DH out of work -- only God knows when he will find work, our place up for sale -- only God knows if we will find a buyer and if the bank will accept the short sale, etc.).

So what now?

Balance.

Our bodies are the temple of the Holy Spirit and we are to be good stewards of our resources. I will not give up on making healthful choices when we can.

At the same time, I will consciously submit this area to God. When I catch myself obsessing or tempted to research one more thing, I will choose to stop and capture those thoughts to Christ. By God's grace I will redirect fretting to worship, and focus on the Creator rather than creation.

God is my Jehovah Jireh (God who provides) and Jehovah Rapha (God who heals). Ultimately it is he who blesses us with health. As it says in Psalm 23, He leads us to good pastures and still waters. I believe that is true spritually, but also physically. He is the giver of all good gifts!

Blessing in Disguise

This is a bit of thinking out loud.



I've been lactose intolerant ever since college when I was on a very strong course of two antibiotics (Biaxin and Ciproflaxin) for more than 3 months for a severe infection.



I lived in denial and suffered with the very unpleasant digestive consequences of eating dairy for far too long. Eventually I wised up a bit and cut back, but still used Lactaid or Dairy Care to help me eat one or two servings of dairy per day.



Pookaloo developed eczema that seemed strongly correlated to dairy consumption. We've been (mostly) off dairy for more than a month now.



I say mostly because there have been some slips due to poor label reading, and today I gave her skim milk as a challenge. (still waiting on results of that)



I've been feeling much better than ever before. Today I was reading about milk and excess mucus production and made a correlation I never had before:



Up until college, I would get bronchitis and/or a sinus infection every year, sometimes more than once. I've had pneumonia 4 times in my life. Since I started taking my lactose intolerance seriously, I've had bronchitis only once, and only had one sinus infection.



I used to pray and pray for God to take my lactose intolerance away so that I would be able to eat all the foods I used to enjoy and not suffer with the digestive symptoms.



He said no, and now I can finally see that it was for my benefit!



Pookaloo's eczema is what it took for me to go that extra step and be completely dairy free.



Now that we're dairy free I still have some unpleasant digestive symptoms, so I think the lactose issues were just covering up some other problems (leaky gut? yeasts and/or parasites? all of the above?). I'm feeling ready to tackle those and confident that I can be disciplined enough to change my diet for the better and fast from those things which are "permissible but not beneficial."

Eczema as a drive to self-discipline

Normally I use this blog mainly to post thoughts and links to parenting ideas as well as spiritual discipline ideas, but today I want to share an experience our family has been going through.

Pookaloo recently (6-8 weeks ago) developed eczema and we have been battling it unsuccessfully and watching it just get worse and worse despite globbing on lots and lots of lotions.

Then, she developed hives one day after trying ranch dressing, and again a different day after having some garlic cheese sauce. Her face turned red after one bite of eggplant a week or so later. I already knew that eating tomatoes gave her a red bottom.

She's also been having lots of sneezes, sniffles and an almost constant clear runny nose.

Clearly she was reacting to something and I read that eczema can be related to food sensitivities.

Based on all the evidence, two weeks ago, I decided to cut out the top two common ingredients in the ranch and cheese sauce, dairy & soy, out of our diets. I also decided to eliminate the nightshade family (which includes tomatoes & eggplants, but also potatoes and peppers belong) too.

It seemed to be stable, maybe getting a little better. Then 8 days in to our new diet, she accidentally had a bit of her cousin's yogurt.

Things went from bad to worse. She broke out in a new rash all across her torso. One of the biggest & oldest spots on her arm cracked open and started weeping fluid, and the back of her knees were bright red and angry looking. Whereas it never seemed to bother her before, Pookaloo was rubbing at the spots and saying something approximating the word "itches."

Then, suddenly, yesterday and today we've seen a dramatic improvement. It could be the new Aveeno Intense Repair Cream. Or the oatmeal bath or baking soda baths she's had the past two nights. Those definitely helped. But I'm pretty sure that Pookaloo is sensitive to dairy.

Did this just suddenly happen? Probably not. She was a fussy baby, but it was never quite severe enough to be categorized as colic. She has never been a great sleeper, and excessive night wakings can be a sign of food sensitivity too. I don't eat all that many dairy products because of my lactose intolerance, but I do indulge every once in a while. I never noticed a consistent obvious pattern of her fussiness or wakefulness related to the times I would indulge in a bowl of lactose-free ice cream or take probiotics so I could enjoy a slice of pizza with light cheese and extra sauce. That the eczema showed up only recently makes sense because she has been eating yogurt and cheese directly more and more since she's turned one. In fact, I thought she loved it; she was always asking for cheese. I learned recently that an obsession with a food can actually reflect a sensitivity to it.

Not only is her eczema better but her nightwakings have become much easier to handle too. I don't know if it was a fluke or not, but last night she woke only at 2:30 and 6:50 and we got up at 7:30. Twice in one night might be considered a lot for some 18 month olds, but for her it was like a miracle. Nights where she wakes up 5 or more times are not uncommon around here.

I'm feeling happy to know what is going on, but feeling a little sad too that I didn't catch on sooner. When she was tiny I sometimes wondered if something I ate bothered her but I didn't think her symptoms rose to the level described by those with clear-cut cases of food sensitivity/allergy and like I said, if there was a pattern to her symptoms, I missed it.

Too, I was lazy and selfish. I didn't think it was worth it to go to the trouble and discomfort of an elimination diet for what seemed to me like a remote possibility. I thought I just had a high-needs, spirited baby who needed a little extra TLC. How much frustration and discomfort and pain could I have spared both of us if I had been more willing to submit to a more disciplined way of eating? Praise God for his mercy. I can be thankful for the eczema because it was God's design for Charlotte's body to put up a red flag and get my attention.

I do think God spoke to me about fasting in order to prepare me to go on this elimination diet for both our sakes. It hasn't been easy. The first week I craved ice cream like nobody's business. But now I find myself thinking of it less and less. I'd rather have a banana or a fruit popsicle. And I definitely feel better without dealing with the slightly mild lactose intolerance symptoms that used to follow me everyday (because dairy is in so many things!)

I'm pretty certain of the dairy being a problem, although I will probably challenge it again in a few weeks just to be sure. Her reaction to tomatoes and eggplant was really obvious so I'm definite about needing to avoid those too. I'm less certain about the soy being an issue, but I'm content to keep avoiding it for now.

A blessing to be found in all this is that I am now much more aware of what we put into our bodies and seeking to support our health. It's opened my eyes to ways of approaching wellness that I never would have sought out or considered without this.