Tuesday, October 28, 2014

Heart Failure to Transplant: Specific Prayer Requests

I posted the following to my CaringBridge journal on Oct 28, 2014:

Number one, pray for healing, for my stiff thickened heart muscle to regain normal structure and function and for symptoms of heart failure to disappear. God can do it, He will do it, whether by changing the cells of the heart I have, allowing me to go through a transplant or resurrecting me to a new body in heaven.

But also, please pray for protection from colds and flu and stomach bugs. They are very hard on my body and take me longer to recover from than the average person. I've had pneumonia and flu vaccines, and practice hand washing and healthy diet to minimize the risk.

Please pray that my pulmonary blood pressure stays within normal limits so I can avoid going on inotropic IV drugs.

Please pray for wisdom and discernment in pacing myself, as well as knowing when to ask for help and who to ask.

Sunday, October 26, 2014

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. :)

Friday, October 24, 2014

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.

Thursday, October 23, 2014

Heart Failure to Transplant: Pulmonary Hypertension Healed?

I posted the following to my CaringBridge journal on Oct 23, 2014:

Praise!  The echocardiogram on Friday suggests that the blood pressure in my lungs has normalized.  This will be verified at the right heart catheterization on November 25, and may mean I don't need to be hospitalized or go on IV drugs, which would mean I don't have to wean Elliott. 
They'll draw blood for genetic testing on Tuesday, and also obtain blood samples from my parents.  The results of the test will not be ready for a few months.  The hope is that they can identify the gene that caused the cardiomyopathy so that my first-degree relatives can be screened.
I get my TB test results read this afternoon, and will also get a flu shot.

Tuesday, October 21, 2014

Heart Failure to Transplant: Hesed

I posted the following to my CaringBridge journal on Oct 21, 2014

Hesed is a Hebrew word for God's lovingkindness.

He pours it out on me through His people that He has provided as my community of support and love.

MOPS gave me $100 gas card, which will help ease the pinch from extra travel related to my many appointments.

Polly has been a godsend. She even has recruited a friend to come help her with cleaning.

Corrie did some shopping for me.

The MomsNext members of MOPS are planning a service project to help me with cleaning next week.

My church offered to set up a meal train for two meals per week through December 31.

My MOPS table leader April is coming over to watch Zachary for me to make the trip to Selma for Elliott's 6month checkup easier on me.

This and prayers and encouragement.

Monday, October 20, 2014

Heart Failure to Transplant: Rainy Days and Mondays

On Monday, Oct 20, 2014 I posted the following to my CaringBridge journal:

Rainy days and Mondays never get me down actually. I love the rain (wish this was a rainy day!), and Monday is the start of a brand new week. What could be bad about that?

I had a better night sleep last night than I have had in a few days. I woke up this morning breathing a little easier as well.

I walked for 2 miles with some friends this morning. My dear friend Corrie offered to go to Costco for me to get eggs and bread so I don't have to wear myself out doing that.

So I've been puttering around here at home, tidying up a bit in each room. And now I'm taking a much needed break rocking and nursing my sweet baby through a nap.

Zachary is having a hard time with weaning. I have started limiting him to three times a day and not at all at night and he really is having a lot of big feelings about it. I am keeping the limit in place while telling him I see his upset and saying I'm sad too and we can rock and be sad together if he wants. Or sometimes when he is mad I tell him I know how much he liked nursing and how hard it is to have to change that.

Other than the emotion, one of the reasons weaning Zachary is hard on me is because now he has more freedom to get into things while I'm nursing Elliott. For example just now he climbed up on the counter, got into my spice cupboard and poured out the whole canister of allspice and a whole canister of poultry seasoning and mixed them together in a mug.

Good thing he likes to run the stick vacuum.

I'm listening to a playlist on Spotify called baby shower for Eli. I found it when I was pregnant with Elliott, and its a really great mix of songs. Just now The Carpenters song Close to You was on. And it's funny because I was singing that to my kids in bed this morning, along with silly motions.

I really enjoy singing. If I could do one thing and know I would not fail, it might just be to be entertainer who sings for a living.

That got me thinking, that I could maybe make videos of myself singing. I even made one but then deleted it because I didn't like how ill I looked.

I might try again...

UPDATE: 
OK, I did it!  I made a video of me singing, "The Beat Goes On" by Sonny and Cher.  Seemed appropriate...
The sound cuts in and out, sorry about that.

Very fun to make though!  Hope it's somewhat enjoyable to watch/listen too. ;p

Sunday, October 19, 2014

Heart Failure to Transplant: My Aunt

On October 19, 2014 I posted the following entry to my CaringBridge journal:

I had a great phone call with my aunt this evening. She told me all about her experience with her heart transplant 2 years ago and her life now with her new heart. It was very encouraging!

I also shared a medical update: 

I heard from my cardiologists today. All my bloodwork is back and there is nothing that is a cause for concern.

I had an echocardiogram yesterday, and the technician was pretty chatty. He pointed out all the structures of my heart to me, and when I asked him about the blood pressure in my lungs, he said it looked fine or low to him but then he said I need to talk abut it with my doctor. I wonder if he could be right and I may not need to go on the IV medications after all?


Saturday, October 18, 2014

Heart Failure to Transplant: Imagine Jesus There With You

The following entry was published to my CaringBridge journal on Oct 18, 2014:

Friday's Jesus Calling entry was a much-needed reminder to not worry (granted I read it this morning, after worrying quite a bit yesterday when I read some pretty dismal post transplant survival rates). It said when the future must be considered, to imagine Jesus there with you. Very comforting reassurance that I needed to hear.

After reading that I felt a deep need to do the PERS-SOAP-ACTS devotion style again instead of just reading Jesus Calling or Words of Hope.

The Scripture recommended at the bottom of Jesus Calling was this:

Luke 12:25. Who of you by worrying can add one single day to your life?

Zing! right on target.

I wrote this as my observation and application:

I have been researching statistics and outcomes. I know I am NOT a statistic and more searching past a certain point does nothing to help me. I have enough information to guide my decisions. I know I will pursue transplant and pray for healing. I know days may be short, and so I must live accordingly - and isn't that always true? But how it is so easily taken for granted.

I need to be able to pay attention to symptoms terms without worry, without casting my mind ahead to see what this ache or that increase in breathlessness forbodes. I mustn't try to guess how much time I have left at every turn.

Living that way will rob me of the beauty and joy God has for me today, at this moment. Worrying doesn't add to my life - it steals from it.

I can trust Jesus my Savior, I can trust God my Father, I can trust the Holy Spirit my Comforter to guide me. Is this symptom a reason to call the doctor? God, the Triune God, cares for me, and He will let me know. He will lead, I will follow.

I'm alive today. I have this capacity now. Imagining the future where I dwindle or suffer or die is not a good use of this precious gift.

Turn your eyes upon Jesus, capture every thought to Christ. If I must think of the future, imagine Jesus there with me. That is the only way to really live in the face of death.

That's what I wrote this morning.

This afternoon, I wondered what the longest someone has survived after a heart transplant. I almost searched it, then hesitated. Was this information I really needed? But then I felt a nudge to search it out and a whisper that in doing so I would be encouraged.

I found this article:

http://m.hopkinsmedicine.org/news/media/releases/younger_patients_more_likely_to_live_a_decade_or_longer_after_heart_transplant



I am encouraged!

Friday, October 17, 2014

Heart Failure to Transplant: Fear and Trembling

I wrote the following for my CaringBridge journal in the wee hours of Oct 17, 2014:

I woke up short of breath.

I don't know if that's the reason I woke up. Maybe Elliott stirring beside me or something else woke me up.

But it's there. I must let my doctor know because it could mean things are getting worse.

I have been weeping on and off since reading the heart transplant packet.

I am scared.

Scared that I might not make it, that my children will be left motherless. Is there anything sadder than a motherless child?

I'm weeping again.

I hate that I have this condition for my own sake but even more for the pain and distress it is causing and will cause my family and friends.

I'm scared, of the possibility that I will make it to transplantation, but still not live long enough to see my children grow up.

My previous entries weren't lies, and they weren't sugar coated. I really do feel hopeful positive and trusting quite a bit of the time. It's my baseline.

But there are dark nights of the soul. There are big emotions that go with this big news. I will allow myself to feel and share them so they will not overwhelm me or turn to bitterness or depression. They will not last. I will move through them.

Thursday, October 16, 2014

Heart Failure to Transplant: Take this Cup

Later on Oct 16, 2014 my emotions grew darker:

God my God
I cry out
Your beloved needs you now

...

On Monday I was given a large packet of informational flyers, leaflets and booklets. I started reading the easy stuff, diet tips, lists of appropriate foods, sodium content of fast food, other recommendations for self care and healthful living.

Next I read the overviews of cardiomyopathy and heart failure.

This morning there were only two booklets left to read, neither of which I really wanted to look at:

1. Advanced care directives
2. Your care after a heart transplant



I decided to make myself read the post transplant care information.

I found a long detailed accounting if the multitude of drugs I may have to be on for the rest of my life and their many possible side effects, such as damaging my liver and kidneys, the always popular nausea and vomiting, causing high cholesterol, high blood pressure, excessive body and facial hair growth but regular hair loss, and acne.

I found a detailed description of the right heart catheterization test I'll have in November and which they will also use to perform frequent heart biopsies to check for rejection.

I found a discussion of rejection, how it it could happen at any time, the risk lessens but never goes away over time, and most transplant patients have some degree of rejection in their first year. With early detection it can be reversed before the heart is damaged enough to require a second transplant so its important to be alert to symptoms. But sometimes there are no symptoms, and sometimes the symptoms are the kind of mild "just don't feel right" things anyone could get when fighting off an infection.


I found discussion of how my new heart won't have any nerves and so may not speed up and slow down appropriately.

Its not as simple as new heart, cured. Those unpleasantries I just listed will always be part of my life.

And if I had a say, I don't want them to be part of my life!



Is the cure worse than the disease?

But, then again, I want to live!

Really, I want to find out this is all a bad dream or a big embarrassing mistake.

I want a miracle.



In some ways, I'm less afraid of death than of the suffering ahead.

Jesus prayed for the Father to take the cup of suffering and death away, and then said yet not as I will, but thy will be done.

That is also my prayer. I want to live for the sake of my family and because there is so much in this life that is good.

I will submit to the suffering ahead if God wills it, if He ordains my journey here is not done.

And in the midst of all the waiting, anxiety, failing strength and suffering ahead, in bad days and on good days,

I will lift my eyes to the maker
of the mountains I can't climb
I will lift my eyes to the calmer
of the oceans raging wild
I will lift my eyes to the healer
of the hurt I hold inside...

Heart Failure to Transplant: Against All Odds

The following was published to my CaringBridge journal on Oct 16, 2014:

On Tuesday I shared a scary statistic that people with cardiopulmonary fitness numbers as poor as mine have a 66-75% chance of dying within 12 months.

In the hours and days since then, I've done some reflecting and come to the following conclusion:

That is a statistic, not a sure outcome.

I am not a statistic.

I am God's precious daughter and he determines the length of my life. He sustains me and gives me breath.

Statistics are helpful to guide my treatment.  It's good to know there is a high risk so I can pursue a transplant.

Statistics are helpful, but they don't determine my fate.

In the studies they used to determine those statistics, a certain percentage of individuals with numbers as bad or worse than mine died. 

BUT... THE REST OF THEM LIVED!!!

Only God knows how long I might live without a transplant.

My heart is His.  My life is in His hands.




That same day I also wrote: 

ACCENTUATE THE POSITIVE!
  • No asthma
  • Good cholesterol
  • Kaiser coverage
  • Right cardiology team
  • Incredible support and love from my church, friends, family
  • Can still sing, draw, craft, sew, play piano and write
  • Nursed Elliott for six months, will make it to seven at least before I might have to wean

Despite these momentary afflictions, future bright no matter what... New lease on life with new heart or new body in heaven!

Heart Failure to Transplant: How Long Has This Been Going On?

The following was published to my CaringBridge journal on Oct 16, 2014:

During my consultation with Dr. Weisshaar on Monday we speculated together about how long I've had my cardiomyopathy, how long my heart has been beating inefficiently, how long I've actually been in heart failure.

It's genetic, so I was born with the potential for it.

It's generally something that develops in puberty.  I've never been athletic.  When I was in junior high, I was assigned to represent our school in the 800 meter race, and came in dead last and felt completely wiped out at the end.  I just thought I was a wimp who was out of shape.  Did the thickening and stiffening in my heart muscle begin that early? 

I can remember specific episodes my senior year in high school and my junior year in college where I climbed a steep slope and had trouble keeping up with my group and felt like I may pass out once I reached the top.  Again I blamed it on being out of shape.  Was I already in some degree of heart failure then?

Shortly after I got married, Adam and I trained together to run the 10K Mud Run at Camp Pendleton.  I had trouble sustaining a jog and didn't build up tolerance the way I thought I should according to the training program.  I spoke to my doctor about it.  He listened to my heart, mentioned I might have a murmur or mitral valve prolapse, and said I probably had exercise-induced asthma. (But didn't test my pulmonary function to confirm).  I completed the Mud Run, even ran portions as I felt able, but was the last to finish in my age group.

The summer after Charlotte was born, I joined Team in Training and prepared for a half-marathon.  I fully intended to run it, sure I could do it if I just trained properly and pushed myself.  But once again I had trouble sustaining a jog.  I decided to switch to fast walking, and became good friends with a wonderful woman who matched my pace (Hi Pat!).  I completed the half marathon in pretty decent time.

Once the cardiomyopathy was identified the next year, the cardiologist advised me to avoid doing aerobic activity any more strenuous than fast walking.  It was somewhat affirming to know that I hadn't just given up too easily in my attempts to run rather than quickly walk the 10K or half marathon. 

In the four years that followed my diagnosis in 2010, I've been getting gradually worse.  I was reading up on conditions that can exacerbate heart failure.  They include infection, taking NSAIDS, consuming caffeine or using other stimulants, and eating high sodium meals.  In the past four years, I've had two babies.  Each time I took high doses of ibuprofen after childbirth to control pain.  In the summer before I got pregnant with Elliott, I had pneumonia, and I had bronchitis several times in that time period also.  Although my first cardiologist advised avoiding caffeine, I thought it was just to prevent annoying palpitations, and while I adhered to it strictly at first, over the years I began to make more and more exceptions until I was drinking a cup of caffeinated coffee at least once a week and sometimes three times per week.  Because I thought my breathing problems were caused by asthma, I inhaled albuterol, which is a stimulant, as prescribed.

I suppose it's no wonder that I got worse. 

I'm not really playing the "if only" game.  It is what it is.  I didn't know, and I did the best to take care of my body with the knowledge I had at the time.

It's helpful to look back at the past this way to make a coherent narrative of my life.  It's helpful to see that all the times I thought I was lazy or a quitter because I had to stop or couldn't do something, I was really very strong because I was fighting so hard to be normal.  

One last thought on the subject of items that exacerbate heart failure: The other thing heart failure patients are advised is to avoid getting pregnant.  The extra blood volume places further strain on the heart. 

I was told not to get pregnant again after I was hospitalized with heart failure and pneumonia in April.  I've been terrified of the possibility ever since. 

If I knew sooner the true extent of my condition, I may not have my three beautiful precious children, and certainly not my two boys.

Wednesday, October 15, 2014

Heart Failure to Transplant: The Workup Begins

The following was published to my CaringBridge journal on Oct 16, 2014:

Monday I started the workup process to see if I'm qualified for a transplant in terms of the health of the rest of my body and my immune system.

They took 12 vials of blood on Monday, and another 12 on Wednesday, plus a urine sample.

Oddly, though I expected to feel drained, weak and possibly faint after giving up that much blood, on both days I felt BETTER afterwards.

Some of the test results have already come back (they are released via automatic process to my health profile on Kaiser Permanente's website).

Most of them provide a standard range for comparison along with the result, and for almost all of those I tested within normal limits.

Dr. Weisshaar said on Monday that some people with cardiopulmonary fitness numbers as poor as mine would be bedridden, but I'm doing remarkably well. She compared my heart to an engine, and the rest of my body to a chassis. She said the reason that I'm doing as well as I am, is because my chassis is in such good shape. That bodes well for my prospects of a successful transplant.

There were three results outside of normal limits, and a few that have no interpretation guide.

The first result outside of normal limits was BNP (a protein that indicates the heart is under stress or in heart failure... to be expected really). The other two outside normal limits were protein and a byproduct of white blood cells in my urine. I did some research and this could suggest that something is going on with my kidneys.

I will wait a few days until all the results are in and then contact Dr. Weisshaar to discuss them if she hasn't contacted me already.

Tuesday, October 14, 2014

Heart Failure to Transplant: The Initial Consultation

The following was posted on my CaringBridge journal on Oct. 14, 2014:

The trip to Santa Clara was a little rough on Mr. Elliott.  He slept in 45 minute to an hour bursts, and then cried no matter what we did for about 45 minutes, and it just kept alternating like that.  In all I think we stopped four times on the way up and twice on the way back (thankfully he slept soundly for the second half of the trip home). 

I was so happy to have my parents with me yesterday.  It was fun to spend time together on the road and in the waiting rooms, and it was wonderful to have them there to process the results of the appointment.

The meeting with Dr. Weisshaar was so helpful.  I really love that she tells it like it is, very directly and frankly without leaving things vague or implied.  She has a great understanding of my condition and heart failure in general and is very skilled at explaining things clearly.

Our appointment together was quite lengthy.  First I gave a summary of what I knew about my condition.  Then she asked me a lot of questions about my medical history and current symptoms, and did a physical examination to check my blood flow, fluid levels and pulses at various points of my body.  Next she gave a synopsis of what hypertrophic cardiomyopathy is and how it can lead to death. 
1) Through sudden cardiac death from fatal arrhythmias.  I'm not at high risk for this.
2) Through heart failure as the muscle thickens and stiffens and loses the ability to pump blood. 

She explained how they assess the risk of death from heart failure.  The best prognostic tool they have right now is the VO2max and VE/VCO2 slope, which I explained in the previous post.  My numbers there are quite bad, which is why she recommends seeking transplantation sooner than later to give me the best chance to live, and a renewed quality of life.

She explained that waiting for a heart transplant is like waiting to board a plane with Southwest.  There are different lines for each of the blood types, and then within that line there are three risk categories: 1A = imminent death within a few days to weeks without a transplant, 1B = on IV medication or hospitalized with symptoms, and 2 is for everyone else who is sick enough to need a transplant but not sick enough to be a 1A or 1B.  The O line is the longest because it's the most common blood type. 

Each time a heart becomes available it goes down the priority list until a match is found.  The first person on the list may need a bigger or smaller heart than what is offered, or have antibodies against the heart that is offered, and so they'll keep checking down the list until the right match is found.  There are about 4100 people on the heart transplant list right now, and only about half of them will get a heart this year, mostly 1As and 1Bs, but rarely some 2s.

She talked to us about screening first degree relatives.  I'm in the midst of having genetic counseling and testing done.  If they can identify a gene related to my cardiomyopathy, then they will test my siblings and kids for that gene.  Those without the gene are free and clear, those with the gene will require echocardiograms every two years through puberty and five years thereafter to screen for evidence of disease.  If they don't identify which gene it is, then all first degree relatives will need to be screened on that schedule, because given my paternal grandfather and aunt's medical history with heart failure, it's clearly genetic even if we can't pinpoint the gene.

She explained some of the transplant workup process and some of the recovery process.  After I get on the transplant list I need to be seen once per month, but some of those can be video appointments as long as I go to Santa Clara at least once every three months.

I did some research into the IV drugs that I will likely be given during my likely upcoming hospital stay, which is scheduled for Thanksgiving week.  There are three choices of inotropes that may be given.  I called Infant Risk to find out their compatibility with breastfeeding.  Two of them are L2 - Possibly Compatible with Breastfeeding.  One of those has a risk of reducing milk supply.  The third drug is L4 - Possibly Hazardous to the Baby.  This means it should only be used in a lactating mother in a life or death situation, and it's best if breastfeeding is interrupted while the drug is administered and be resumed after the drug passes from the blood, in this case 8 hours after the last dose. 

My breastfeeding relationship with my boys is very important to me.  I'm OK with Zachary being done at this point although I will miss having that tool to comfort and connect with him, but I'm really not ready to wean Elliott.  I'm going to do everything I can to avoid weaning for as long as possible.  I will pump milk for when we are separated, try to minimize our separation, ask that the L2 drugs be tried first, and other strategies.

After Dr. Weisshaar and I finished talking, then she sent in a case worker and a nurse and one of the other cardiologists to meet me.  By the time we were done and headed to the lab for the first round of blood work, it was already 3:45.  The first step of the workup process was to give about 12 vials of blood, some of which had to be sent to Stanford for analysis.  We had to wait quite some time while they figured out if they could get it to Stanford in time.  I was relieved that my blood flowed well and quickly and I didn't feel woozy at all. 

Once the blood work was done we went down to the lobby for a final potty and nursing break before hitting the road.  After I washed my hands in the restroom I noticed a woman in a wheelchair behind me, trying to make the automatic paper towel dispenser work.  She seemed to have cerebral palsy or something similar that made it difficult for her to control her movements, so I offered to help and waved my hand in front of the red light and pulled the towel off for her.  She asked me if I would pick up her purse which slid off her lap and fallen to the floor below the sink area.  We were the only ones in the restroom, so I offered to hold the door open for her as well.  I felt so glad to be able to help her, but when I came out of the restroom my parents told me they had been worried that I passed out in there!

Heart Failure to Transplant: Test Results

The following was published on my CaringBridge journal on Oct 14, 2014:

Bottom line:  I need a heart transplant sooner than later to save my life. 

My VO2 max before I had to stop the test due to dizziness was 9, which is 31% of what would be expected for someone my age, and the ratio between the amount of breaths I took per minute and the amount of carbon dioxide exhaled (VE/VCO2 slope) was 46.  For reference, someone with a VO2 max below 12, or below 50% of age expected performance, and/or VE/VCO2 slope greater than 35 have shown in studies to have 66-75% risk of death within one year.

My cardiologist recommended that based on my O positive blood type that I begin the workup process right away to determine if the functions of my other organs and immune system will allow for a heart transplant.  The workup process involves lots of blood work, meetings with a social worker and psychologist, and a test called a right heart catheterization to measure the blood pressure in my lungs.  I likely have to be hospitalized for about a week after that test because they are going to attempt to lower the blood pressure in my lungs by trying different combinations and levels of IV medication.  If they find something that works, then I'll be on IV medication until an matching heart is identified.


The cardiologist said if I'm on IV medication that puts me in a higher priority class on the transplant list, and it's realistic for a matching heart to become available within the year. 


The recovery process will be quite long.... 6-8 weeks before I can drive or lift more than 5 pounds, 3-6 months before I can resume my mothering duties at the level I'm at now, 6 months to a year before I am up to my new improved full capacity.  It will involve moving temporarily to within 20 minutes of whatever hospital does the transplant for the first month of recovery. 


It's a lot to take in.  I really don't like the idea of being cut open or having to hope that someone dies so I can have their heart; on the other hand, I want to be around for my kids and Adam as long as possible.