Guestbook of Julia Hsu

On June 22, 2014...

Ginger posted a note for Julia that says:

Julia,
Thank you so much for letting us know how things are going. It had been three days and I began to become concerned. I knew you were still doing some struggling, and just wanted to know you were still healing.

I think I can tell you what is most likely going on in a way you will understand, but if it is not clear, let me know, I'll give it another shot.

You are absolutely right that there is an inverse correlation between heart rate and blood pressure. This is the work of your body to make sure you are getting enough oxygen in your blood, and getting enough of it pumped through your body. The brain and heart are the two organs that the body will save at all costs.

If everything else has to be shut down so there is adequate oxygenated blood flow to the brain and the heart, the body will do things to make that happen. For instance, you eat a big Thanksgiving dinner and the digestive tract needs a certain amount of blood flow to deal with all that food. But if one eats a big load and then goes out to play football with the family, blood supply to the GI tract will probably show down to keep plenty of fresh oxygenated blood to one's heart and brain. On the other hand, the person who "takes it easy" after overdoing the food will probably be okay in terms of adequate GI blood supply that results in "normal" digestion. The other person eating the same huge meal and playing football is more likely to get stomach cramps or indigestion, because the blood supply will go to the areas needing it most, and the GI Tract is a lower priority than the heart and brain. All that recreation means more blood is needed by heart and such.

A person has an optimal amount of oxygen in their blood that the brain is trying to get to and maintain. That oxygen saturation is measured in a percentage and the brain works the vascular system to try to maintain the optimal level.

Heart rate and blood pressure are like two ends of a seesaw. If one goes up the other should go down. They are doing this to try to maintain the optimal amount of oxygen (oxygen saturation) carried by the blood to the areas of the body that need it the most. If one goes running and the heart rate goes up, the blood pressure may drop so the optimal level stays the same or close to the same.

The body has different ways of changing the blood pressure beside the inverse relationship to heart rate. For instance, it can relax the walls of some of the blood vessels in certain areas of the body so the volume of blood reaching the heart varies.

If your heart rate is fast, there will be messages to lower the blood pressure. The areas not as "vital", like the arms and the legs, are most likely to have their vessels relaxed or dilated. That results in, for your legs, less blood being pumped back to the heart while the heart rate is up. And since the blood is not being pumped out as fast and the blood vessels are more relaxed or dilated, your ankles swell.

The brain can also tell the musculature around the blood vessels to constrict. It's like having a hose. If the walls of the hose are loose, and X amount of water is going through it, it will go through more slowly and come out at the other end more slowly. The same will happen it the less water is going through the hose. But it you turn up the faucet - turn up the pressure - the same amount of water will run through the same hose much faster and shoot out the end faster.

The circulatory system is amazing and complex. But everything is built around the brain knowing what is happening, what areas are getting enough freshly oxygenated blood and which need more. Then different areas can be regulated by how fast or slow the heart beats (because the heart is the pump instead of the faucet handle) and by how large or small the diameter of various blood vessels (mainly arteries that have much more muscle than veins) are.

All of this is to get optimal oxygen from the blood to the places that need it most, and to keep the amount of oxygen in the blood itself (saturation) stable.

Every muscle you move and a variety of other things can make the system react.

Now, this is my understanding, and it may not be exactly right, but without question your body has gone through a traumatic experience. And someone like you, Julia, with the Ross Procedure, has had a lot more trauma done to your body than if a minimally invasive procedure was done with a single valve replacement.

Your body is reacting to that trauma. It is trying to figure out how to keep the system optimal. But the system has had major changes.

And keep in mind that for some time to come there will be areas, often internal and not seen, that are swollen or may have had some other kinds of insult that have to be taken into account. A week later, or maybe a day later, or with some other timing, the swelling may go down. Then the system has to readjust again. Some areas will heal faster than others, some changes will stay the way they are now, some will not.

Your body is working hard to keep that optimal blood saturation and your brain is sending messages to your heart and to your blood vessels to make needed adjustment. The bigger the surgery, the more the adjustments.

Just think if all you had done was to replace just your aortic valve -- what a shock and trauma to your system it would be.

So I guess the final message is, you are benefitting from all of this very hard work your body is doing to get you to your new "normal". And it will work ceaselessly to fine tune your body as though it were a Formula One racing car.

The swelling in your ankles is not because your body is trying to frustrate you. It is all a part of this huge healing process you are going through.

None of us want to deal with all kinds of issues, but if you can keep foremost in your mind that everything that is happening is part of the healing and mending process, normal work of the body in its current state, then you can relax a little more and realize that whether your ankles are swollen again or not, your body is doing exactly what it was made to do so that each day you are closer to having trauma and swelling gone and your body closer to being able to handle oxygen saturation maintenance without a quadzillion fine adjustments constantly occurring.

You will have reached the healing point that God intends, and Julia, you will feel great!

So smooth and steady needs to be you in terms of dropping anxiety over every change and actually recognizing the changes are getting you closer to your goal.

Bless you, Julia! I know this is a lot to take in, but you are in good hands, you have wonderful doctors, wonderful friends including your heart friends, and you are being lifted up in prayers for healing.

Yes, call your doctor if something seems hugely abnormal, but you are going to find that much of what you are currently enduring is a part of making you better and stronger, and if it were not occurring, your end goal would not be met.

Love and hugs - always,

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On June 15, 2014...

Ginger posted a note for Julia that says:

Julia, I have always thought that being in the middle of any change is much tougher than being on the before or after side, no matter what or how big the change may be.

You made good decisions. You are doing all you can to care for yourself. You are not back in the hospital. Yes, you are moving forward and you are way past one month ago.

The Washington Monument wasn't built in a day. (I prefer something closer to home than Rome!)

So Sleep. What to do?

Figure out what you can control and what the problems are and start eliminating them.

Benadryl - just 25 mg or 50 mg?

Melatonin does not work in one night. Know that ahead of time. It works to get your system into a decent circadian rhythm. A solid 5 nights to a week or more before full effect. Do not skip a night! It should be taken 30 minutes before sleep is wanted, preferably at the same time each night. Choose your time. Do not miss it by more than 15 minutes on one side or the other. It is a contest with your health as the winner. Put a little chart next to bed with desired time to be asleep, and time to take melatonin 30 minutes before. Every single night mark what time you are in bed. When you take the melatonin is a good time to shoot for. Why? Studies show that brains need to slow down to allow sleep.

That last 30 minutes no: TV, iPad, Computer, Cell Phone, etc. Only use music if it is soft, barely so you can hear it, and soothing. Or get a 30 minute CD of rain. I like that. Or even someone you love speaking softly. If you love to read, get an audiobook and set it to run for 30 minutes, but not a thriller. I referred to using my iPod with small speakers before. My doctor knew I was in excrutiating pain. Surgery had been done very close to four nerves in my head. She also knew my iPod was loaded. Her suggestion really helped.

Are you in pain? Do you need to include a pain pill of some type, even acetaminophen, 30 minutes before zone out time?

What temperature is the place you are sleeping? Most people sleep better if the air around them is cooler. That does not mean you cannot use many blankets and quilts, but make sure it is cool and you breathe in the cool air and you are not overdressed.

The pediatrician for my wee little grandchild told her parents she should sleep in a room with a temperature of about 69 degrees. May sound crazy, but fewer babies die of SIDS if their rooms are cold. Try lowering the temperature in the room. Maybe even direct a small fan toward your head so you will breathe in cool air.

Are you lactose intolerant? If you are not, and I know you have heard it, a warm glass of milk before going to bed helps to bring on sleep. (Yes, it can be chocolate milk, but it has to be real milk, not soy or almond.) Why? Because milk has tryptophan in it. It is more easily absorbed and active sooner if it is warmed before drinking. A full 8 ounces is best. A person can buy tryptophan tablets at various places, but then they have to dissolve and then the particles have to be liquified before absorption. And you may not get the whole dose. So, 8 oz warm milk. As long as you are not lactose intolerant, this will help not hurt. It does not interact with the vast majority of medications. (I have my Doctorate in Pharmacy, I think I may have told you earlier.) If you do not know if you are lactose intolerant, but you have a small bout of cramping and diarrhea within and hour of drinking the milk, you are probably intolerant. Two choices then. Buy lactose free milk (which still will have the tryptophan) or ask the pharmacy. There is a little bottle of drops that have enzymes to break down the lactose. Put the appropriate number of drops in your milk and stir before drinking. Another bedtime ritual you can do every night.

IS THE place you sleep as DARK and QUIET as possible? Some bedrooms have lights from the TIVO and the TV and maybe a computer or laptop. They seem small, but they can be covered. Even a piece of black tape or taped over with a bit of thick paper. They all add up.

Limbs twitching: You may be able to arrange pillows to minimize this. Some people get a small amount of medicine that calms the muscles before sleep. But you probably will not want to do this for long. Pilliow, bolsters, a hot pack, a cool pack, whatever may work, try an assortment until you hit the right thing. Or it may be that with the tryptophan, lower temperature, and steady doses of melatonin, you will be able to sleep whether or not these go away. but they probably will with time.

One other trick I sometimes use when I can't get a cold room: Wet a washcloth with cold water and wring it out. Get a cold pack out of freezer. Or Ziplock bag with ice cubes and water with air squeezed out. Into another Ziplock in case of leak. Lie on back. Cradle head with pillow. Gently drape wet washcloth from forehead over your nose. Put ice pack up around forehead/eyes area. It will keep the washrag cold without putting pressure on your nose. You will now be breathing in cold air. If the goal is to get to sleep, who cares where all of this ends up in the morning? Just pick it up to be used next night.

Try a routine of several of these things. Be patient. Allow your body to get used to the changes and relax. Breathing in through nose and out through mouth helps some people. Putting one hand on abdomen so can feel it go up and down and assure filling lungs helps some people.

Someday soon, you will be telling us what works for you. Sleep well. If you are a believer, pray, do Psalm 23, Lords Prayer. If not maybe some Ralph Waldo Emerson, Bronte poem, but it should be something familiar and soothing. OR pretend brain is a TV. Turn it off. If you notice it has come back on turn it off to blank screen. This is a good habit when carrying concerns.

Post me tomorrow so I know how you are, what your questions are. I will pray that God holds you in His hand, totally safe and comforting. That he keeps angels around for protection. I have heard, but cannot confirm, that some newborns who had near death experiences, when old enough to talk will smell rain. And they tell their mothers that that is how God smells. Rather comforting..

Sleep well Julia, and every night will be better than the last, which will make each day better, too.

God bless you. Hugs

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On June 11, 2014...

Terrie posted a note for Julia that says:

Julia. I do not know how it feels to go through what you have been experiencing since your surgery.
I have just now actually read about your story and journals and have to tell you I wish I had just the right words that will help you at this time.
I will be having my own surgery on Aug. 20th. and have tried to put myself in your place to offer up something, anything that might ease your way.
I have to tell you that I was amazed at how active you have been prior to your surgery and how I understand going from one phase where you are largely asymptomatic into being in a severe state with your heart can be overwhelming.
All there is to learn about the condition of your heart and all the choices as to what treatment Is the right for your heart. Your example of how to progress with these things has been of great help to me and no doubt others.
I can imagine it must be difficult as active as you are normally to be going through these changes with your body calling the shots.
I know that lately when I have felt sleepless now that my date is set and the clock is ticking I have laid in bed dreaming of the mornings I used to get up at 5:30a.m and be in the water doing laps with friends at the local YMCA up in Redding, Ca. I would do the breast stroke for 40 minutes and time it perfectly to glide over onto my back and look up to find the sun rising over the mountains. Near Mt. Shasta, Ca. the mist rising from the water and sometimes a good cold morning rain. These were joyous moments that are engrained in my soul. I loved the way my body pushed underwater my arms strong and healthy enough to pull me swiftly to the edge of the pool. And oh, the mornings where I got their early enough to watch the last of the stars fade away were mesmerizing and I felt like the luckiest person on earth to live such a life.
I imagine that the activities that seem to be a part of your life are also being missed and making there feel like "being Normal" has left the bldg.
But just imagine how good you will feel when that strength invades every part of you again and all of the other things fade into the background when you feel whole again. When you know it is time to move forward without the lack of sleep and the aches and pain and without all of the symptoms that moved forward to prevent normal from being normal.
I don't know if this makes sense as I am tired and on my way to bed but wanted to reach out and tell you how very much I wish and pray for you and all of our heart Brothers and Heart Sisters a good nights sleep with pleasant dreams and even better days filled with a healing of spirits.
Good night all! I will be looking forward to watching as you improve!

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