A Stress Test. And Finally Treated as a Human Being ...

Boy, they don’t call it a “stress test” for nothing, right? I think about this every time I have one. And not just the simple, hey, hop on the treadmill, run a few minutes, we’ll take your blood pressure, now go home, you’re all good! But the nuclear stress test is pretty long and inconvenient. (But then, I’m a wimp: anything involving an IV is inconvenient to me).  

I am not sure what it’s like when you’re not truly a cardiac patient and you’re doing it just to rule out cardiac issues. Maybe it’s easier to run uphill at whatever speed they set for you till your heart beats reach the stratosphere for a normal person. But I think any cardiac patient will tell you that it’s not a walk in the park for us - no pun intended here. 

I’ve done maybe 5-6 of these in my life. Maybe more. Definitely not less. I fair it pretty well. These are the basic steps:

• First, they hook you up to an IV and they give you some contrast solution (this is part of the “nuclear” part of the test).
• Then, they make you drink a glass of water and sit in the waiting room for an hour.
• Then, they call you into a room and you lie on a skinny table for 10 minutes and they take pictures of your heart. (These are the pictures of your heart “at rest” - this is another part of the “nuclear” part of the test, as the pictures capture the contrast going through your heart blood vessels to see how well they’re functioning).
• Then, it’s back to the waiting room for a bit longer (if you’re lucky and they have no one else ahead of you, you’d skip this step, but for me, it was another hour).
• Then, they hook you up to all sorts of wires to monitor your heart (similar to those you get when you get an EKG), to a blood-pressure cuff, and to an oximeter. Yeah, you’ll feel like an alien. 
• With all that gear, you then walk on a treadmill and they increase the speed and the incline of the treadmill as you go. 
• The goal is to make your heart rate go up to a goal that the medical science deemed appropriate for your weight/ height and age. This is the most important part of the test (the “stressing” part)  and I fail it every time.  
• Once you reach their goal, they inject some more contrast through your IV and they slowly decrease the speed and incline of your treadmill till you come to a full stop. 
• Then, they have you sit for a bit and then walk back into the picture-taking room to take pictures of your heart, now “stressed”.
• And that’s it! 

During the test, they ask you if you’re experiencing any discomfort (shortness of breath, chest pains, cramps in arms or legs, dizziness, light-headedness, anything else), and they have you rate their severity on a scale from 1 to 10. They also have you rate your perception of the severity of the level of exercise you’re performing - this goes from 6 to 20 (they call it “the Borg Scale”). I rated mine a “49” by the time they stopped the treadmill! 

The whole procedure took about 4 hours for me. There are lots of things that could happen during this whole thing. For instance, the first set of pictures (ar rest) was not good for me today, so they had to take them again. They said “there was intestinal activity” that obscured some parts of the heart. To “fix” this, they made me drink (on top of the water they gave me before the pictures) a whole can of Sprite. Somehow, Sprite is supposed to “fix” the “intestinal activity” and allow for better pictures (it feels like it does the opposite to me, but hey, I am no doctor). 

Then, they told me that if I don’t reach my beat-per-minute goal (which is 147 beats!!), they will have to inject me with something similar to caffeine, to stress my heart “artificially” even more. This would make the test at least an hour longer and would come with side effects (which the contrast solution does not have). Well, this is the part that I always fail: I have never reached my goal. I have at least two (maybe three) things working against me:

• I have a sick heart, to begin with, so my level of endurance is low. I get symptoms early on while my heart is not beating as hard yet.
• I take atenolol, which is a beta-blocker. The whole purpose or atenolol is to slow down your heart rate. A normal person’s heart should be about 60 beats per minute, but in real life, it’s more like 62-65. Mine is usually in the low 50 range (52-55). So, when a normal person’s heart is stressed out it would beat at 147 beats per minute (my goal), my heart would make it to about 130, if that! 
• A third thing is: so far, I have been young and skinny. So my goal (always done for a healthy individual, not for one with a compromised heart) is too high to start with.

But the lab techs have no choice. They have a grid, they must apply it. That’s all they are trained to do. And they can’t stop the test and just say “hey, she didn’t make goal, so this is the problem, she has a weak heart, let’s send her back to the doc”, because this is not the purpose of this test. The purpose is to take those pictures when the heart is most at stress. 

Today, I actually saw my heart go up to 141 which was my max (still, 6 beats shy of the goal). There are usually two techs in the room: one that monitors your EKG, your blood pressure, your oxygen, and writes everything down, including your symptoms, and one of them who is injecting you with contrast (or giving you caffeine and injecting contrast, if needed) who will also take the pictures, after you’re off the treadmill. The monitoring lady wanted me to go higher than 141 and I simply just could not. The contrast-and-picture tech had to make a call: should he give me caffeine to stress my heart artificially to reach 147? Or leave me be, since I was close to it and my symptoms were so severe that my heart simply could not take any additional stress, either natural, by me trying to add more to it, or artificial, through taking some drug? 

And for the first time in a long time, he actually looked at the patient, and not at the grid! He said: “her symptoms are already at 10+. I cannot, in good conscience, give her more caffeine, because I know her heart is already stressed out based on her symptoms”. I had shortness of breath of 10+ on the severity scale, chest pain of about a 7, dizziness of about an 8, a sharp, sudden headache in one side of my head of about a 6, a completely numb arm, from shoulder to fingertips - the arm was not in pain but it was so numb I could not hold on to the treadmill bar anymore, I would call the numbness a 10. In my experience, these are all symptoms of atherosclerosis and cardio-vascular disease. Because of the damage FH has done over the years, these are the symptoms that my body exhibits to indicate reduced vascular circulation due to plaque buildup and blockages. So, he injected me with more contrast to take the stress pictures and called it good at 141 bpm! 

I am so grateful for that man! Something in my heart (quite literally) tells me he made the right call. I usually don’t drink caffeine (I drink decaf coffee and no sodas), so I am not sure what the side effects would have been on top of the exercise I got that felt so, so, so far over my threshold of normal activity. 

I was just pleasantly surprised that for once I didn’t feel like a Guinea pig and actually felt like a human being. Seen. Heard. Understood. Listened to. 

We need more of these techs in the medical world. Again, I am not a doctor, so I am not sure if he broke some kind of law here - but as a patient, it felt like he had my best interest at heart (no pun) and did not stick me in some artificial mold that everyone has to fit. He assessed me, my performance, my symptoms, my “clinical presentation”, if you will and evaluated that. 

At one point, because he was paying attention, he told the monitoring lady to stop increasing the speed but to increase the incline more - which was smart and true: from my own experience, I know walking on an incline is infinitely more stressful to my heart than walking faster on flat ground. I didn’t tell him anything, but he noticed where the numbers were going up: and they were going up more when they increased the incline, not the speed. So, he adjusted the effort for me. He even said “her legs are so short, she can’t do the incline if we speed her up anymore” - and that is right! (I am barely 5ft tall). 

No results yet, but I was grateful for a positive and humane experience for once. This is incredibly hard to find nowadays.

A Mixed Bag: Some Good Things, Some Bad, and a Whole Bunch of Guessing, as Usual

Today was an odd appointment with my cardiologist, to say the least. It was my 3-month appointment (this is routine for me), where we were supposed to discuss the recent tests that he had ordered (a heart echo, a carotid ultrasound, recent blood work, and the results of my neurological tests) and, as always, assess if there are any changes needed in medication.

Right off the bat, he admitted that he didn’t review my tests before he walked in the room. He said he did see them when they were done (in September), but he had not reviewed them this morning before he walked in the room (intern in tow) to see me. So, he needed a minute. (My appointment was at 8:40 AM and he was already an hour late, so I guess: busy morning!)

My cholesterol went up slightly, as you can see below, but he said he will consider it a “lab error”. Well, which one was the error: the last one that showed it the lowest I have ever had it? Or this time, which is more in line with everything else we’ve done for the past year? No answer.

My AST (a liver enzyme) is elevated but only slightly (43 U/L and it’s normal between 15-41 U/L). But I have had it as low as 26, so … there is some reason for concern there. He said to repeat it in 3 months before our next appointment. We repeat the same tests before every appointment: a lipid panel, a liver and renal panel, a uric acid (because of the Nexletol/ bempedoic acid which elevates the uric acid and because in my 20’s I used to have gout attacks frequently).  The AST is part of the liver panel. He asked me if I want to do an extra measurement at 6 weeks but he said “he didn’t care; it was up to me”. OK, then … let’s just do them all at the same time which is in 3 months. (I love when he says “he doesn’t care” or “to him it’s six of this or half a dozen of the other”. Sounds so reassuring!)

My heart echo write-up mentioned for the first time “diastolic disfunction”. I asked him about this and he explained that what this means is when the heart fills up with blood, it increases in volume but it should not increase in pressure. In my case, there is some pressure that is measurable, but that it is “mild”. He said this is “normal” and “almost expected” in my case, having had a heart attack, open-heart surgery, and coronary vascular disease for many years. He said he is not extra concerned about it, as long as my aortic valve is clear (which it is) and my ejection fraction is good, which at 55% it is.

The narrowing of all my carotid arteries is increased compared to the measurements of two years ago, but the percentage is all the same – between 50-69%. This seems like a huge range to me, but that’s where they place my numbers.

For those more curious, here are my measurements for both the right (first) and the left (second) carotid arteries:

MEASUREMENTS – Right/ Left
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Central Carotid Artery
CCA Proximal 249/ 19 cm/sec - 216/ 23 cm/sec
CCA Mid 168/ 21 cm/sec - 230/ 23 cm/sec
CCA Distal 141/ 19 cm/sec - 199/ 24 cm/sec

Internal Carotid Artery
ICA Proximal 136/ 24 cm/sec - 191/ 22 cm/sec
ICA Mid 189/ 36 cm/sec - 134/ 21 cm/sec
ICA Distal 160/ 30 cm/sec - 157/ 22 cm/sec

CCA/ICA Ratios 1.340 - 0.960

External Carotid Artery
ECA 550 - 260
Vertebral 93/ 16 cm/sec - 115/ 15 cm/sec
Subclavian 305 - 327

He said that the worst narrowing is in my External Carotid which is of least concern, because it’s the one that vascularizes the face which gets blood supplies from a “million other places” (his words), so there is no concern for no blood supply there.

I have an appointment with a vascular surgeon and he asked me to follow up with him for a second opinion on the carotid findings.

If it were not for me to mention the neurological test that he ordered to diagnose peripheral neuropathy, he would not have discussed it. I told him that the test showed that I did not have peripheral neuropathy. He was glad about that. He had suspected there was something neurologically wrong because my dizzy spells. Well, not sure what worked, but my dizzy spells are very mild now and very infrequent, and my muscle spasms and cramps are also much better, too. The dizziness definitely does not last for a whole day anymore. I started taking CoQ10 (my decision) which I guess must have made my muscle cramps less frequent, but I don’t think that it had anything to do with fixing the dizzy spells. In addition, my primary doctor diagnosed me with possibly anemia (low red cell count) and a B12 deficiency, so I started taking B12 vitamin supplements at about the same time as the CoQ10 – about 2-3 months ago. He agreed that this deficiency and the anemia could have caused the dizziness for sure. So, we’ll just continue with this treatment and the regular doctor is planning to check the B12 levels again at our 6 month follow-up.

We also talked about the heart symptoms: how’s the blood pressure, how’s the chest pain, how is the shortness of breath? How do I get along with the newest drug he put me on to treat all these (Amlodipine). I told him that the chest pain and shortness of breath are stationary, but I have more stamina when I walk (I can go further and on steeper inclines through the shortness of breath and the angina because I feel like my heart is getting enough blood supply). My neck still cramps, but after a longer walk. The blood pressure is medium-high (in the yellow-orange range on the machine) a lot more often than mostly high (red range), like it was before the Amlodipine. My gums are still very sensitive because of the Amlodipine but I am working with the dentist to use softer brushes, better paste to not irritate them too much.

After the physical consult, he said he thinks “I have more fluid than what he would like for me to have” and to back off the salt. This is the first time in my “heart-patient career” that anyone has said anything about salt, because typically my fluid is under control. He said my legs look fine but that my chest shows signs of too much fluid. He gave no reason as to why all of a sudden my fluid retention is higher, and no recommendation on what to stop or start doing (other than salt intake) to help with this.

As for the FH treatment, he said he would like to try the “twice a year siRNA PCSK9 inhibitor which might come out in the US sometimes next year” – his guess -  (he was referring to Inclisiran - https://www.novartis.com/news/media-releases/novartis-receives-eu-approval-leqvio-inclisiran-first-class-sirna-lower-cholesterol-two-doses-year) to replace the twice-weekly Praluent injections that I take now. I have asked him again (http://livingwithfh.blogspot.com/2021/07/who-knows-more-about-fh-you-or-your.html) about adding Evkeeza to the current treatment and he said “that would be another option as well”, but he made no recommendations about it. About this, I am puzzled: my LDL is nowhere near the “target” number of 70 mg/dl or lower, but he did not recommend adding anything else to my current drug regimen.

So, a mix of findings and if I were to summarize, I would say:

-          Heart function is stationary (no idea what the coronary arteries are doing because we would need a cath angiogram for that)

-          Arteries are showing advancing disease

-          Cholesterol (LDL) is still elevated, not at ideal levels for my disease and my history

-          Liver function a bit modified

-          Quality of life/ symptoms (dizziness, muscle cramps, chest pain and shortness of breath) somewhat improved.

I walk gently towards The Holidays with kind of a mixed bag and lots of unanswered questions. But … it’s better than six years ago when I was walking in with “you must have open-heart surgery in one to three months at the longest.” So, I’ll take it.

Beginning of the Year

Happy New Year, everyone! I think we all put more meaning into this wish this year than any other new year before.

It’s been a while, but not many things have happened.

On the FH front, I am still on the same therapy as I have been since early last year – since the Bempedoic Acid was approved.

Because my joints have been more painful than ever, and because my muscles are tender lately, we (the cardiologist and I) stopped the Bempedoic Acid in the fall (as described here: http://livingwithfh.blogspot.com/2020/10/trying-to-achieve-best-results-with.html) for about a month to see if the pain would stop. It didn’t, really. So, he added it back to my usual cocktail (Lipitor + Zetia + Praluent, at this time). Because we stopped that for a month, the levels for the LDL and Total Cholesterol went up at the last test, as you can see below. Interestingly enough, my HDL is now almost normal, something of a rarity for me – usually that is abnormally low.

Another interesting finding this time is that my Lipotrotein (a) value, which is supposed to be a constant, almost doubled. I will come back with another post about that one.

The cardiologist, along with my PCP, do recommend that I should stop the Lipitor for a month to see if this will stop the joint pain. They are both convinced that it will, at which point I will need to decide whether I want to be on it or not. I would rather not experiment with this, as long as I can take the pain, which for right now, is sufferable. As long as my liver and kidney levels, as well as the levels of CK are normal (and they are, as we continue to monitor them every 3-4 months), I am determined to keep the cholesterol therapy as aggressive as possible to keep my arteries healthy. CK indicates whether there is any muscle damage which would show up in an elevated CK in your blood. So far, this level has been normal for me. So, I am muddling right on through, joint and muscle discomfort or not.

The cardiologist agreed to watch the numbers for these three areas and let me handle the pain. I do not take anything additional for pain. I do find that exercise actually helps with it. It does hurt very much to move, but after a sprint-y lengthy walk or an hour of yoga, when I am at rest, my joints do feel more mobile and less painful. If I go even a day without exercising, my joints are stiff and painful.

I did buy a standing desk for work and I stand as much as possible during meetings, which I have many, sometimes up to 6 a day. This helps as well, as it gives my body more range of motion than when it was just sitting for 8-10 hours every day. I noticed that trying to keep my inflammation down also helps. I do have an mostly plant-based diet which helps keep the inflammation down as well, and to that I have added more avocado, more fiber, and turmeric into my every day meals. This seems to help keep the inflammation down as well. So, here’s hoping …  

On the heart front, I am still fighting with drugs and playing around with them and different strengths to see what the best combination is for keeping my blood pressure down. I am still not at a point where I can say with confidence that we have gotten my blood pressure under control.

The one drug that really helped for me, Amlodipine, causes extreme sensitivity in my gums, as well as makes them bleed. As any heart patient knows, but especially those with a mechanical valve like me, we need the best possible oral hygiene to avoid infections of the heart. So, living with bleeding gums was non-negotiable for me. Losartan is another drug he put me on for blood pressure, but it’s not really working all by itself. So, now he has me on a combination of Losartan and a very small (child) dose of Amlodipine. The gums are fine, the numbers look better but not in the normal range yet. Or at least not on my left arm.

FH throws another kink in the blood pressure values: because of the different levels of stenosis I have in my arteries, my blood pressure in my left arm is much higher than in my right. For an example, see the table below – these are levels in the current month. Apparently, the different numbers on the two arms  is normal for everyone, and the big difference you see between the arms is “normal” for people with atherosclerosis.

Shrugging. Just another measurement that you have to get used to not being “by the book” when cholesterol wreaked havoc in your body, I guess …

I am not really happy with the current drug arrangement for the blood pressure for two reasons: the numbers are still on the high side, the symptoms are still there (chest pressure, calf and neck cramps with exercise) and I would rather not add two (instead of one) medications to my overall cocktail of 12 drugs or so a day (http://livingwithfh.blogspot.com/2016/07/my-current-drug-regimen-and-diet.html). So far, he wants to continue this regimen for another month (till the end of February, I think) and then we’ll meet to reassess.

I feel like we're always guessing and always trying to figure out what regimen is the best to keep. There is no certainty in anything and I truly try to make the decisions that seem to be the less harmful to me and allow me to have the best quality of life. They might not be the best, but they seem the best from where I am sitting. 

Aside from all these technicalities, and all the side effects and pain I have mentioned above, life is generally good. Outside of the “normal” restrictions we have in place as a family for Covid19, I have no restrictions that prevent me from doing everything I want to do. I work, I walk, I do yoga, I do all my  house chores, we take short weekend road trips and hike, and otherwise, I lead a normal life. Or whatever you call normal for me.

Sure, making sure all the drugs are taken on time, that the Praluent shot is done on schedule, the blood pressure measured every day or so, the INR is measured and reported to the clinic once a week - but these are all part of my routine for life. So, I think more than the bugging joint pain, more than the let-down of the blood pressure being weird or having to take two extra drugs to get the numbers to look a little better, the one thing I feel most of is gratitude. For still being alive and for still being mobile. For everything.

I started out this journey at 8 and they told me I won’t see 25. With a bit of luck and the grace of God, I will be 46 this year. I am so grateful, it renders me speechless.

I sincerely wish everyone much health in the new year. May you know as little loss as possible, if any,  and only peace, health, and love.

Between Tests, Doctors' Visits, and the Rest of My Life

It's been a while since we chatted. Life seems to have sped up there for the past few months. I guess it's good when you make plans but even better when you get to carry them out. But delay no longer.

I have been traveling, mostly. Some of it for work, and some of it for pleasure. Since the beginning of August, really, I have been hopping airplanes and Marriott hotels like it's my full time job. I am tired. I won't lie. I am doing it, mostly alone, but it's taking a toll on my stamina.

During this whole time, I have also worked full time and have carried on with my cardiac rehab appointments, sometimes as often as three times a week. Just writing this makes me yawn.

In September, my regular doctor did some blood tests to check for a few things, but especially my cholesterol and liver values.

The good news is that my cholesterol values are at an all-life low. It is truly unbelievable how well drugs work for me, and how lucky I am. Not even one hour of apheresis in my entire life, and the drugs I am on just dropped the cholesterol this much. My LDL is still not at the target that the doctors want, which is below 70, but I am happy with it. News like these don't happen often for HoFH patients!

The bad news is that my liver enzymes continue to be elevated. This trend started two years ago when I added the Coumadin, an anti-clotting medicine, after my heart surgery, as well as the Praluent injection. Now, my doctor is ordering a liver ultrasound to understand what is going on with it, if it is visible on an image. I am not really sure what the course of action will be to try to get the enzymes back to normal. Although I do have pain in my upper-right abdomen, I have virtually no other new symptoms from all this medication which seems to work so well. But … we will have to weigh the good with the risks and make some decisions pretty soon.

During one of my work travels, I had the chance to go back to Utah and meet with my surgeon for my yearly appointment. He insists that he still wants to see me every year till further notice. I love this, because I love him. What he has done for me, the life he has put into my remaining years is absolutely humbling. He was truly scared when he realized I had not only had my recommended yearly echo but also an angiogram since I saw him last year. He thought that something bad happened that required the angiogram. I explained that because I had moved to another state, I have a new cardiologist who is trying to understand my angina symptoms and explain my weird blood pressure numbers. Part of that quest was the angiogram to figure out whether there are severe blockages in my heart. (http://livingwithfh.blogspot.com/2018/05/another-cath-some-more-answers-and.html)

I shared with him that the same blood vessels that were 99 and 90% blocked before he did the surgery are now between 30-50% blocked. I asked him how could that happen, because as I said before, I cannot credit the Praluent alone with this huge improvement. He reminded me that not only did he bypass the blocked arteries, he also performed endarterectomies (https://en.wikipedia.org/wiki/Endarterectomy) on all of them. He also reminded me that it is clearly written in my operative report which I have. Now, if I didn't just chalk this up to a “fancy medical term” and I would have actually looked it up, I would have known. But I did not. Now, why didn't my current cardiologist know this, when he has my operative report himself, I am not sure. The cardiologist looked puzzled that I had bypasses at all because the main arteries were in good shape. Again: many thanks to my brilliant surgeon!

He said he not only bypassed them “he also cleaned them out for good measure.” I am telling you – the man is a saint! So, now the mystery of my virtually clean heart arteries is solved: endarterectomy + bypass grafts = functional arteries.

As I mentioned briefly, I have also been going to rehab since August, too. I am still very much underwhelmed with this program: there is not much monitoring, or explaining what is going on. We write our BP and pulse values in our charts ourselves. How long or fast we exercise seems to be up to us only. Whether it's because of my very fast lifestyle this year, running through airports with heavy carry-ons, or rehab, my stamina seems to be much improved and my breathing is also a little less shallow and my chest a little less painful when I exercise. We have this steep hill in our neighborhood and every time I climbed it until recently (maybe a month or so ago), my chest would tighten and my left upper body would be completely numb and painful. These symptoms are gone now, and I can climb the hill, still slow, but with no pain.

I am sure that since we moved closer to sea level (we were at 4000 ft in Utah, and we are at 500 ft now), my breathing has gotten deeper and my heart feels better overall. Every time I go to Utah for work now, I clearly see the difference between how I breathe at home and how I breathe there.

There are days when I want to call the cardiologist and quit rehab altogether (still have 17 sessions to go – argh!), but I am really hating having to argue with him. He believes very strongly in this rehab business and that this alone will improve the blood flow in my heart, grow new arteries, and improve the pump function. I might just stick it out. Or at least I will try my best to for as long as I can. Trying to balance work and travels with a very strict rehab schedule, though, might decide otherwise. If I truly saw the full benefit of this exercise alone, without what I do on my own, I would definitely put my health first and finish the 36 sessions that come with this program. But I don't see that going in for an hour and 45 minutes a couple of times a week and walking on a treadmill (which I can do at home, with no schedule, no driving for an hour one way, etc) makes that much difference for my health. We shall see …

I hope that all of you had a great summer and are having a beautiful fall. I hope you are ready to close out this year in health and peace.

Much health, to all!

Not All Cardiac Rehab Programs Are Alike

So, I am back in cardiac rehab – two years and 6 months after my surgery. It feels odd, and a bit tardy, but I only have so much energy to argue with my cardiologist.

The reason he sent me back is because I still have shortness of breath, I still have a chest squeeze and a pronounced numbness in my left arm, shoulder blade, and collar bone when I exercise even “a little bit”. Or whatever they consider a little bit. He doesn't think this is valve related, although the On-X mechanical valve I have is leaking a little bit. But not enough to make a difference in symptoms, he says. But enough to cause my large gap between my systolic and diastolic BP. He sent me back because he thinks the symptoms come from the fact that my smaller arteries are still clogged up with cholesterol (because of my FH) and my heart won't grow new vascularization unless it's very active. Since I am limited by my symptoms, I cannot exercise enough to grow new blood vessels, therefore the need for cardiac rehab, to recondition my heart and also monitor what it's going on when I do exercise.

And this is where the disconnect happens. I have just ended my first week in rehab (the second time around, like I said). This time it's a different state, facility, medical system than before and it is by leaps and bounds different from how my first experience was. This time, it feels like just going to a gym all by myself, with the only difference being that there are spectators around me watching my exercise. But that is all they are doing. Almost.

They do take our blood pressure when we walk in and when we walk out – and we need to record it in our folder ourselves. But they don't take our blood pressure as we exercise (they did the first time I was in rehab – several times, in fact).

We do wear a monitor that we hook up to our chests ourselves when we walk in (I pray every time that I do it right, but who knows?!). And they tell us that our heart “looks fine” because the monitor talks to their computer during our exercise. They said they would tell us to stop exercising if they see any EKG modifications. But it's like 10 of us and one nurse looking at the monitor and doing 10 other things, so I am not sure how they would be able to catch the modifications as they happen. She doesn't seem too focused. When I first went, we had an assigned person who would monitor just us the whole time we were exercising.

We have to pick our own machine that we want to exercise on, and we need to use that machine (treadmill, two kinds of bikes, elliptical machine) for 45 minutes. How fast, or steep we go is our call, but they do want us to reach our “maximum heart rates” which they base on our weight-height-age. After 45 minutes, we all go to the strengthening and relaxation room and exercise in a group as we all follow the physiologist in strengthening exercises for 20 minutes before we slow down during the relaxation time, which is roughly 10 minutes (that is a total of an hour and 15 minutes, if you didn't count).

During this whole time, you have to write down in your folder your own numbers: how fast you walked on the treadmill, your speed, your length of time and your RPE (Rate of Perceived Exertion) – in other words “how strenuous” you think your exercise was. They only take your blood pressure when you walk in and when you walk out, so when you are rested. They tell you what the highest heart rate was during your cardio exercises and you write that yourself in your folder. They ask you to take your own pulse at the end and record it in your folder (thank you, Apple watch! - almost everyone in the room is counting theirs themselves).

This was all done for me by the physiologist, and my blood pressure was taken 3-4 times during the cardio exercising the first time I was in rehab.

This past week, the physiologist I worked with the first day said there “is no need for them to take my blood pressure during my exercising, because by looking at my history she does not expect my blood pressure to drop.” She said that she expects it to rise with exercise, which is perfectly normal, but not drop. I was dubious, so dubious that I was speechless and didn't argue that nor told her about my jumping blood pressure for no reason at all. I also did not tell her about the regular huge gap between the BP numbers (which is my number one concern) and which I would like to see/ understand whether it can be cleared by exercise.

The second day I went in, the second physiologist asked me if I have questions and I told him that I was not expecting to be monitored so little in a program that is branded as a highly medically assisted one. I told him that the first time I was in rehab, my blood pressure was monitored closely and the numbers were not good, but they did show that my heart is not happy when it's pushed too far. I also told him that my cardiologist told me they would do a stress test before I would even start rehab so they'll know my limits, rather than tell me what my limits are based on my weight, height, and age. Given the condition of my heart, my limits should be lower. They never did a stress test before I started this. They said, however, that they based my limit on the stress test my cardiologist did in March (5 months ago). But even that one was different than the one they had done in December last year (9 months ago), so my heart is always changing, it seems. Don't they want to know what it's doing now?! Apparently not.

He apologized hurriedly and he said “oh, we can do the stress test any time during the program, no big deal.” But for now, he said, let's try to get your heart rate at least above 90 (my goal was 119, apparently, based on the last stress test they had access to see, but he wanted it at least above 90 given that the first day I was there it was only 86). Although I did put an RPE of 9 the first day when I exercised on the bike, indicating that I was very tired and breathless during that day, had my chest squeeze, he still wanted me to do more the second day.

So, I tried. I also told him one of my biggest concerns is my blood pressure and I am surprised that they do not monitor it during my cardio. He said he will monitor it that day closely. So, with me pushing myself and him taking my pressure, off I went.

My blood pressure climbed up to 155 over 55 (yes, the diastolic is always that far from the first number), and at that point I was out of breath completely. He said I was not at 90 yet, I was still at 86. I told him it's hard to really make my heart rate go really high because I am on atenolol, too, which is designed to keep the rate low. He then eased up and let me slow down. OK. Now, they got what they wanted: they stressed my heart out enough that I was a 10 on the RPE scale. My rate was 89!!

My left arm, shoulder blade, and collar bone were completely numb at this point – this is when he was really sold that I should slow down. And then, all of a sudden I started feeling very dizzy, very light headed and like I was going to faint. He took the blood pressure again, it was 142 over 50. Two minutes later, if that, he took it again: it was 106 over 34! So, in like 5 minutes, it went from 155 over 55 to 106 over 34. I thought I was going to faint!

They asked me if I should take a nitroglycerin, and I told them that usually I just wait it out and all this discomfort goes away on its own – so they left me be.

I didn't do the strengthening exercises that day. I just got some water and waited for my balance to come back so I can drive back home. I felt horrible the entire rest of the day.

The third day I went back, I took it very slow: my heart rate went up only to 79 (it is usually between 54-60 when I walk in), and I did reach an RPE of 7 on that third day, so I exercised within my own comfort level. I do not want to try to reach their weird goals because those are not MY goals! I know I am not a doctor, but I feel like my heart will never be an athlete's heart – this is not out of laziness and hypochondria, but it is out of being in touch with my body and knowing what it can and cannot do.

I still believe a stress test would have given them a more accurate picture of where I am today. Now. I flunk every test they give me – they all have a goal and I come way under that goal but my symptoms start way before I am anywhere near that goal. And when I do exercise, normally, on my own, I never push myself as hard as they always push me on the treadmill of a stress test (my goal for my age/ weight/ etc is 150 BPM – I have never been able to reach that). And even with me not pushing that hard, the symptoms are there.

It was the first time in rehab that they diagnosed my weird BP, and when they found that sometimes my MAP (Mean Arterial Pressure) is too low. And when this happened, I would start seeing symptoms, too – so the symptoms were heart related. This time, no one else in the room gets their blood pressure measured during their exercise till they actually can no longer do what they are doing. Definitely a different approach, maybe not as proactive as the first crew I was exposed to.

So, not so sure about this second go-around of rehab. I feel like they are not monitoring us closely enough to really understand each of our needs – had I not spoken to the second physiologist, they would have never found out about my jumping BP during exercise because the first person said “there is no concern that it would ever drop.” Now, he said (promised, even) that he would take it during my exercise every time I go in. He did tell me he would push me harder as time goes by but honestly, after the episode I had this week I wonder if that's even safe. Maybe the limitations in my heart will never get it working as hard as the doctors need it to work for the blood vessels to grow again, or the circulation to improve?!

I used to encourage people about going to rehab, because my first experience there was really good; it really gave me the confidence I needed after a very involved surgery that my heart CAN and will get stronger again. But now I understand why some people saw no value in theirs – because every place is different and some places are really not working with you to understand, explain, and monitor you so you know what is happening with your heart. Some places are really just a gym with heart monitors. But those who know me know that I'd rather know more than less.

All I can say is: always speak for yourself. If something does seem off, speak up, ask questions, be curious, know your numbers, challenge them – they owe you at least an explanation, even if they're not willing or able to make a change. At least that.

Much health to all!

About Camping and Life in the Past Six Months

I still remember every day the words of my surgeon, on the first day I saw him in ICU. Drugged up and all, I still remember him saying “Alina, this will be a loooooonnnggg recovery ...”, and he made this gesture with his hand, as if he were showing a long, wavy and bumpy river flowing in front of me. This is what drives me, most days, when I get impatient with myself and with being pulled behind.

This month, I have reached 6 months since surgery, a milestone that was only a dream when I came out of surgery. I’ve had undoubtedly less bumps than most people on here, but I had some, and I know today that my life before the surgery will never return. But that only means that I have to learn to live the new life, for which I am grateful and humbled! I’m not missing the old life, most days, but then what would be the point, right? Onward is the only direction I know.

I follow this site (www.heart-valve-surgery.com) where heart valve patients tell their stories. Reading about all their journeys and living my own is amazing to me - we’re lucky to have such great gifts: our lives, to begin with, and then this Heart Valve/ OHS community and leaning on and learning from each other. Such a blessing. The opportunity that I have had to meet my medical team, other patients, in rehab, and people online, in such forums, has been a true gift. The knowledge I have gathered during this time will save my life. I know this! This gift alone has made this journey worth it to me.

While living through the past 6 months, I’ve always thought that we all went in this thinking we’ll fix our hearts and we’ll be better. And I think some of us will do just that. But at the same time, for me, I’ve also learned that I’ll never be ‘OK’. I’ll never be “not” a heart patient. I’ll never be able to leave my house without my Coumadin, or my MedicAlert bracelet. I’ll always have just a little bit of an odd feeling in my chest. Different than before, but always a reminder. I’ll always check my heart rate and my BP almost daily, sometimes more than that. And these are all OK things. These are my new reality. I try to not label it, and just be aware of it: it’s not ‘good’, nor ‘bad’. It’s just there.

This journey gave me a new life, for sure. Not one without pain and worry, but one that is more grateful. More patient. Slower and more in-tune to my body and the world around it. I pick my battles very carefully nowadays, and I know, at the end of the day, what was important to me on that day, when I went in for OHS. For this life I am grateful and humbled, and I would not trade it for the world. Even if it will never be devoid of bumps.

We tried camping for the first time in the beginning of June - just for  one night, at a campground about 45 minutes from our house, and I thought, then, that I was going to die. My heart felt heavy and was beating erratically, my chest and back were killing me, and I felt extremely tired, and fainty.

A couple of weekends ago, we tried camping for one night again. This time, we camped “off the grid”, just on the side of a national forest road, by a stream, in the middle of pretty much nothing. Lately, I have felt better and I am s-l-o-w-l-y pushing boundaries, and try to venture out where there is no cell phone signal, although in close proximity to our house (this time we were only about 45 away, too).

This second time, I felt really good. I don’t sleep very much elevated anymore, so just a couple of pillows were enough for my sleeping arrangement. I actually could go to work and not feel like I was going to faint or die the next day, too. I did get some pains in my ribs and spine and lower back, but they were probably from being in the camper bed, which is not as comfy as my own, at home. The first time I went camping, I worked for a half day the following day, and then I came home and crashed! I could not even cook, or wanted to eat, or anything, I was drained and my blood pressure was odd. This second time, I worked full days, on Monday and Tuesday and then I came home, after 5 PM and worked in the yard for about an hour and a half each night, watered plants, planted some new ones, and cleaned up rose beds. Wednesday, I finally felt exhausted! I still worked a full day, but I came home after 5 PM and crashed! It was time - my body had had enough.

We went camping this last time at altitude, again (over 6000 ft; our house is at 4000 ft), but it didn’t seem to bother my chest at all. We went for two short hikes (less than a mile), before sunrise and after sunset, and one of them was uphill, but it was not hard to do for me. No out of breath feeling, or anything - which always surprises me.

All this time, while I was out there, and in the two days following the camping trip, my blood pressure inched towards being close to normal, too. Usually, at rest and with no exercise, the numbers are odd, 140 over 40 or some such thing, but after exercising (yard work, mostly), I saw the numbers getting closer to what is considered normal - like 113 over 48 or 113 over 52. So, although I am not ready (nor will I ever be) for a marathon, yet, I think my heart wants to start moving again.

I still live with constant reminders of my OHS, of course, and I am aware that I will never be fully free from thinking about it, or adjusting my days around it. My chest is still sore; I still call it “crunchy” as I think I have the distinct feeling that it’s made of multiple pieces, and is not one, solid bone. My incision is still sensitive - I still cheat on my seat belt, as it’s too heavy on my chest.  I still cannot lift much (like my computer bag and lunch box), and I still use a dolly for all my “work stuff” and I park in the handicap parking, at work.

My nerve damage in my left arm is still there and actually, I think it’s been getting worse. I have this frozen feeling in my pinky and ring finger which is constant; sometimes, my whole left arm feels frozen. My left leg is still numb, but different than my arm. It’s more like a log that I am pulling around. (they harvested an artery and a vein from my left chest and left leg, respectively, for the 4 CABG’s they did along with my aortic valve and ascending aorta replacements).

Heat still bothers me to no end. Even when I do nothing, even when I just sit there, the heat makes me short of breath and tired. This was the only thing that bothered me during our camping trip - it was supposed to be in the low 80’s but it was in the low 90’s instead. And even in the shade, and drinking water constantly, I felt lethargic and my chest felt heavy, as if my heart was working overtime.

I still obsess over my INR. Now, I measure it at home, and I panic when it’s something like 1.7 (my range is 1.5 to 2), because I know there is a margin of error of something up to 0.3 points. But so far, knock on wood, no bleeding nor clotting events, than Goodness! I have my cell phone alarm set permanently for 7 PM at night, to make sure I take my Coumadin the same time every day and not miss it. This will be set forever, I am sure.

I am still nervous about flying, and I think I’ll wait for up to a year before I venture out on a plane. This is just my own decision, I have not run this by any doctor. I just want to make sure I can rely fully on the new equipment I have in there. But every day, I gain a little more trust in it. I used to be nervous to be alone in the bathroom, taking  a shower, with my husband just downstairs. But now, he goes to work before me, and I am alone in the house, as I get ready for work. I drive 30 minutes to my office and I am in one piece, thank Heavens, every day. I had to get used to feeling OK about being independent again in these past months, but it’s happening.

For those of you just starting these heart journeys, all the doubt, and the questions and the fear are very normal. There is no such thing as a dumb question, so ask here, ask your medical teams and probe them till they make you feel at ease. This is about your life, and they owe you all the answers you need to know.  Learn as much as you can to set your minds at ease.

I found, for me, that knowledge has been power, and that helps me through the days when my body feels sorta shaky. Because I know some things, and because my doctors schooled me, I can trace why my body is feeling shaky some days - work, heat, non-sleep, eating or drinking the wrong things, stress all affect the way my heart feels. And as one of my PA’s said “you gotta respect the heart, man!”, so the way my heart feels is the way my whole body will feel. This journey teaches me that with every step.

Much health, confidence and strength to all of you. Smooth roads, and heart hugs to everyone. 

 

At the campsite, in the dusk, awaiting dinner. The leaves are changing already, in The Rockies. I feel like the whole year is behind us already ...  

Figuring Out How Much Is Too Much

I can't believe it's summer already! We hit mid 90's around here this weekend and that, for sure, is summer. Given that my surgery was in February and the most of my heavy recovery time has been through the spring (not that now I am fully out of the woods!), I feel like I have skipped a season this year.

So, it took my body a bit by surprise when my husband and I decided to go camping for one night this weekend. Am I ready? Will I be tired? Will the altitude bother me? How will I sleep in the camper, since my sleeping “scenario” is so involved at home? All these questions and more bugged me, but we did it anyway.

Altitude didn't seem to bother me, as I was around the camp and as we took a walk around the campgrounds. My blood pressure was still the usual crazy self, with a low diastolic, but my pulse was normal and the systolic in the 130's. Yes, I travel with a blood pressure monitor now, to stay in touch with what's going on “inside” and I do keep a journal with the values I find.

 

This was at the half point or so of our campground walkabout. It was a warm day, and before surgery, by this time, my face would have been completely burgundy red. It never got that way, even by the end of the "hike". As you can tell, the trail was a paved road, so not very strenuous, but you can see the incline. 

The backdrop, like everything around where I live, is stunning. 

  So, it all seemed like my “now, normal” self during the first day we were there. At night, though, just laying down, I could hear my heart beating strong and fast and somewhat arrhythmical, too – faster and slower, then fast again … My chest didn't bother me while walking, but when we hit a steep incline, I felt like I was not taking enough air in. Nothing hurt, but I just needed more/ deeper breaths. It felt very different than the angina I had for years before the surgery.

We didn't do much along the lines of physical activity, on this overnight trip, other than the 20 minute or so very slow walk around the campgrounds. We mostly rested, read, painted, made a fire, played a board game. We took it very slow.

Then, when we came back home, I was out in the 90+F heat for maybe 30 minutes, just helping my husband park our RV and trying to help with unloading. I got extremely tired doing that. I came inside and left the unloading to him, as I washed a couple of easy dishes. Then, I took a shower, and honestly after all that, I felt like after coming home from the surgery – extremely, incredibly, unbelievably tired. I felt like something knocked the wind out of me. Very weak, and like I was going to faint. It was not quite light headed-ness, but it was very marked weakness and a drained feeling. I had to – had to sit down and just do nothing for a couple of hours. I did some laptop work and I ate a salad, but not anything else. My blood pressure was a little high, at this point, too (141 over 53).

No idea why such tiredness after this one night escapade. Maybe just being displaced and not all the way comfortable in the camper took its toll? Or maybe the changes in altitude did have an effect on my heart? Or maybe the 30 minute heat did it? Or maybe all of them. No idea. Just taking one day at a time and finding out where the new boundaries are.

Camping was amazing! So good to be in nature again, and to breathe fresh air, to look at endless mountains with peaks still heavy with snow and to smell sap on the pine trees all around and the smoke of a real fire. It was good to at least try to be “normal” again, and do really normal things.

I am not sure what kind of strength I have at this point (almost 4 months), so I'll keep trying to do things in small bites, just to find that out. I still have range of motion and weight lifting limitations, and I still get tired very easily, so I do take things easily, compared to what I did before the surgery. But I try to push limits just a little bit some days, to see how far I can go into normalcy again. My body always reminds me, though, quite often, that pushing it is OK as long as I back it up by plenty of rest.

 

 This is a "bonus" picture of what I eat these days. And unlike before, when I didn't stick to my diet when I camped or traveled, I do stick to it now, because of my food allergies/ intolerance, which make(s) me feel miserable: I still try to stay very low fat and vegan, with the exception of some wild fish. Here is my camping dinner: corn, vegan baked beans "dog" with organic, low fat potato chips and tomato salad. 

The benefit for my cholesterol (although with FH, diet has little impact on it) is that it's a lot easier to stay low fat/ no fat on vegan foods than it is on animal products. 

Park City Main Street

I just wanted to stop by today and add a post where I celebrate a huge milestone, for me. I have moved to Utah 6 years and 2 days ago. Ever since, I have gone to Park City in every season. It did not matter whether it was too cold or too hot, or like today, just perfect, every time I'd walk the whole stretch of Main Street (which is all a huge hill), I was completely out of breath and feeling like my heart will be jumping out of my chest and beating itself to death on the ground!

Today, we took a slow stroll (which we normally did in the past, too), and initially I said "Oh, let's just do half the hill to see how I do". And we ended up parking in the middle of the hill, first going down to the bottom, then climbing all the way back up to the top of the hill and then climbing down another half of the hill, back to our car. I did not lose my breath once. My pulse was 107 at one point, sure, but I did not feel like my chest will explode for even one second of this whole short journey. 

When I first moved here, going to Park City alone would give me an instant migraine and my chest was heavy just because of the altitude (7000 ft), but today was another story. No migraine. Just beautiful spring weather and a nice, refreshing walk. Sure, I was pooped by the time I made it home, but I really do feel like this surgery changed something. I just hope it changed it all for the very much better and I hope, for a while to come. 

 

This is me at the top of that Main Street hill today. See?! No panting!

Update on Recovering

Today, I am roughly at a month and 2 weeks from my heart surgery. In some ways, I am looking back and I cannot believe how far I have come (I am not in a hospital bed, wired and attached to machines with everyone doing everything for me), and in some ways, I cannot believe I am still recovering and re-learning to do the easiest things daily (like putting on my socks and shoes).

A month and two weeks is hardly enough to get back to who you were before – I have learned this every day since then. One of the Rehab Center techs told me my body “was assaulted like never before” during this surgery, and trust me – this is exactly how it feels.

I still go through the pictures of all the scars and wounds and bruises I left the hospital with, just to remind myself what I am pulling myself from and to encourage me that change is happening and I am doing better. Some days, the hard ones, it is hard to remember this.

I have found a routine for my recovering weeks, and it usually goes like this:

• during the week, I wake up and after shower and breakfast, I go to rehab in the early morning – my husband is still driving me, because I am nervous to be on the highway with my upper body hurting from steering and with the seat belt not in the right place - I wear it under my left arm, because it hurts my chest;
• I come home and I snack – those exercises take away all my breakfast;
• Sometimes, I take a light nap or I catch up on email or the news;
• Then, I either read, or do some sitting down work/ crafts (mostly something I can do with my right hand) or I do house chores; I can't do strenuous ones (like vacuuming and cooking pots of food, or taking the trash out), but I put (small) dishes away, I dust, I put away clothes that have been washed, or clean up the cat's corner, etc;
• In the afternoon, after lunch, I either walk on my treadmill, or walk around the neighborhood, or lately, I have been going to a store and walking around there with my mom and my husband; my mom has gone back home now, so it will be harder to find excuses to go to the store often in the afternoon;
• Then, it's dinner time, and watching some tv;
• I try to stretch and do breathing and arm strengthening exercises all throughout the day; I am weak everywhere, but my arms feel it the most.

I have not been able to cook much yet. I made some hashbrowns in the oven the other day, and I reheat a lot of stuff, but I cannot peel a potato, or lift a pot of water of more than 1 qt from the sink.

I drove just around the neighborhood pretty much today, for the first time, and I was out of breath by the time I got to WalMart which is like 3 minutes away from my house. The steering wheel feels like it has no power steering at all, and it hurts my chest with every move. Plus, the “adjustment” I made to my seat belt does not hurt less, it just hurts in a different place – my left arm, instead, which is numb to begin with. I am definitely in no shape to start driving to work, which is at least 30 minutes away with no traffic, one way, all highway driving. I am not venturing on the highway yet.

Other than my weekly INR checking appointments, I have not had any other appointments lately. I am also blessed and every so grateful that I have not landed in ER or any other “unexpected” appointment yet.

The INR is a slippery, tricky beast, though, in itself. My target for now is 2-3. I have been fine … till last week when I decided to introduce leafy greens and broccoli to my diet, and boom! It tanked at 1.8. So, now, they increased a dose a little, only one day a week. I have no idea how it all works for them to decide which days to have 2 mg of Coumadin on and which days to have 1.5 mg, but this is what they do... They alternate the dose and spread the higher ones out through the week. It's OK for now to have the INR all over the place, because I am still learning what to eat, what affects it and how to be consistent about eating it, so I can balance the INR. Until then, weekly checks is what's needed.

I have gotten a phone call from my disability insurance to interview me and check whether “I am still sick”, basically. As much improvement as I have seen since leaving the hospital, I still cannot tell you that I have the stamina, and the strength in my body to resume work yet.

I am tired most of the time, even with a slightly easy schedule (above). I cannot muster more than 2 hours tops out of this house, and after that I must sleep and lay down for the rest of the day. I don't go out of breath from showering anymore, or washing my hair, but I still am completely done for the day after rehab in the morning (an hour or so) and a similar workout in the evening. And I don't trust myself to drive yet – which is a big part of my working life.

Another big part of my work life is typing – and with my numb and painful left hand, this is a challenge. I correct my misspellings all the time, because my typing is poor with my left hand.

My left arm is completely numb and very painful. All. The. Time. I can carry my purse, which is about 3 lbs, but I would not be able to even lift my work bag, which has my laptop in it, and my entire contents of my purse, not just the “abbreviated” ones I have now. I am thinking because of my upper body strength being so weak still, my back still hurting, my ribs, too, and because I am not gaining weight at all, I will have to use a dolly to carry my work bag and my lunch bag, when I do go back to work, for a long, long time.

I know you are wondering what can be so heavy to lift in a 2 qt pot and a 15 lbs (or maybe more?!) computer bag?! But I weigh 95 lbs right now. 15 lbs is more than 10% of my body weight, so to me, with no muscle mass to speak of, and just bones, and with the arms depending on the still cracked and healing sternum for support, this is a huge deal.

My incision is almost all healed, except for two spots which are still scabby. I still have a huge scab in the bend of my left knee, where they harvested the vein from. The left leg is numb but not as painful as my left arm.

I am getting there, albeit slowly. I am still paranoid about catching the flu or pink eye or something from the huge children population of my state, so I keep my visits to public places limited. I do have people visiting me, though, and I eat out maybe once a week – although I choose my restaurant carefully (cleaner, less kids, perhaps?!).

I am still uncomfortable sleeping – I don't see this changing any time soon. I am still learning a lot about Coumadin and my new life with it.

My blood pressure has been very low lately! Even with exercise, the last two times I went to rehab, it's been around the 108/35 range. Even after 40 minute 2.8 miles/ hour walk (I have small feet and short legs, so this is like running to me!), the blood pressure sits stubbornly at 110/45 or something crazy like this. I asked the rehab nurse and my cardiology nurse whether this is a problem, maybe my beta-blocker dose needs to be lowered, now that I have a “different” heart, but they insisted that if I am not lightheaded, then it's OK. So, I am keeping the 100 mg dose of atenolol that I have taken for 15+ years now.

I also asked about why being so tired all the time and why not assimilating anything I eat to gain some weight – they said all this is normal post-surgery fatigue, it will go away with time and patience and they said all that I am eating now goes to healing my body, and not to increasing my weight.

I am back on my vegan diet, because the animal protein I was trying to eat to increase my hemoglobin and address my anemia has made me sick (hives and GI issues). I am sticking just with fish (tuna and salmon mainly) and vegan meals. I do eat and the taste for food is mostly back, but for some reason assimilation of all I eat is the problem.

And that's what's new in the heart surgery recovery corner. Spring is slowly coming and I hope to move most of my exercise outdoors, whether I'll prune my roses or walk in the neighborhood to peek at neighbor's yard improvements. My sister and older nephew are coming to stay with us for a week, and I hope to take him to parks, to the aquarium, to a mall (not all of them in the same day, mind you!), so that will give me a reason to walk, too. One day at a time and one foot in front of the other is all I know, right now.

The short disability insurance person asked me how long do I think I will need before being completely ready for work – it's really just like asking someone how long do you think you're going to live. There is no telling. Days are sometimes good and some are really bad. Some days, I wake up in the middle of the night grabbing for a Tylenol, but wishing it was a Percocet, and some nights I can grind my teeth and end up just sleeping through the pain. I wish I knew what my body decides to do every minute, but it's like a crystal ball.