What the Last Three Months Have Taught Me

I cannot believe this week it'll be three months since my heart surgery. Where has time gone?! Apparently it flies by, even when you're NOT quite having so much fun.

I am starting work next week. Ready or not, I have to, lest I should lose my job. So … off I go. 

 

I have one more blood check this week (mostly for cholesterol and the effects of Praluent) and then one appointment with my cardiologist after that, to assess how many hours of work a day I am allowed to perform when I go back. He called me last week and he said he wants me to go in for at least one month of part time work before I start my regular schedule. Luckily, I can do that, and I have a reasonable team that will support me in this.

As far as I how I feel, I would say “fair” if I compare myself to the “before surgery me”. I do some things (light chores, laundry, with help, cooking, with help, light gardening, with lots of help, driving but not long distances, dusting, feeding my cat, small dishes, not heavy ones), but I am also limited in my abilities and also in my stamina. I still last for about 3-4 hours of slow to medium activity max, and if this time includes a drive, I last for a shorter time for “actual” active time. I still sleep in a funky position, propped up by 6 pillows and a thick folded duvet, to ensure my upper body is reclined. Still sleeping fully on my back, which is not my normal, but I sleep with less interruptions (1-2 compared to 3-5) during the night. So, comparing myself to 3 months ago, right after surgery, this is HUGE progress and I would say I feel great.

As far as the limitations in my body: I still can only lift about 3-4 lbs with no discomfort (my work purse is about 15 lbs, since it has my computer in it too). My right arm and right side of my chest are still numb (I cannot cut my nails, for instance, by myself, on my right hand). I still cannot open jars, or use my left arm to steer much, or to open heavy doors. I still type slower than normal and the left hand keys need help from the right hand to get them right, or capitalized. My chest still feels like a huge bottle of superglue has been spilled on it and it's holding my skin back from stretching properly. My left leg (from the knee down) is also still numb. 

The unbelievably great news is that no re-surgery is required or needed, or advised at all at this time. My surgeon reviewed the last echo with my cardiologist and said that my aortic valve will forever be leaking (given that I was given an aortic composite graft as opposed to just a valve), and the leaking is normal. However, it's sitting at "mild regurgitation" and it should stay there for the rest of my life. This is normal. When I heard the news that they won't call me back in to replace the valve, my legs cut from under me - I was so filled with joy and gratitude! What a huge favor!  

I am still playing with the Coumadin dose, especially since this week my INR range will go down from 2-3 to 1.5 to 2. So, I have to go in this week for a dose readjustment again, and play with the new range for another month or so, after weekly appointments. I am also still playing with my Atenolol dose, as my BP and pulse are still all over the map. After cutting off the Atenolol completely, I had to be back on it, at a smaller dose (25/ day rather than 100/day). This improved my diastolic pressure a bit (from 30-40 to mid to upper 50's), but my systolic is higher than before (upper 130's and 140's) and the pulse is also higher (70's and lower 80's, at rest, compared to 60's from before). We're still trying to figure out what dose works, or maybe change the beta-blocker.In the meantime, I will have to take things slow, no running, nothing to cause my heart to work extra, for the foreseeable future. I think I can do this. 

The other day, I tripped on my patio and fell on my left shin. It hurt like crazy and I felt this huge rush of blood in my shin. I got a bruise, instantly, and for a minute there I thought “holy hell, I am going to have internal bleeding in my shin and I'll lose my leg!”, or something. Coumadin paranoia kicked in, of course. I do still have a bruise, 2 days later, but nothing that I have not seen before on my body.

I have also had a throbbing tooth and I thought “oh, no, tooth infection! It'll go into my heart!”. I went to my dentist and then to an endodontist, to make sure there is no infection in the tooth, and there isn't. They don't know why sometimes my tooth throbs, but if it's not hurting and it doesn't look like it's cracked, or leaking, they will leave me be for now. They both said there is positively no infection, at this time. But it did scare me there for a bit.

All these (and then some) will be constant concerns going forward, so somehow I will need to incorporate these in my regular “go to work” routine from here out.

All in all, though, I am so incredibly grateful I am mobile and I can do the things I do today and that for the most part, all my other organs function well. This is NO small thing to be lucky to enjoy, as most heart patients will tell you!

I thank God, my team of doctors, this wonderful community of people on this site, and last but definitely not least my family, especially my husband for helping me get here. I took one day at a time and as you know, each day will bring new things you never thought about with it.

All I can say is that what helped for me is the fact that I stayed flexible. I keep telling myself this is what it is (if every day is a square, I don't wish for it to be round), and I deal with every day's new reality as it's given to me. I have no preconceived notions about anything anymore. I make no more plans, really. I know now that anything can happen and nothing, not even our own breath, or especially our breath, belongs to us to control. Whereas before I was more like a rock, strong, stubborn and unbreakable, I am now more like a willow – just very humbled and definitely bending, so I won't break.

I have no idea what tomorrow will bring, or a month, or a year from now, and this is not the purpose of this life, for me, anymore. I finally understand the meaning of “the journey is more important than the destination”, because I have no destination, all of a sudden. Every second is new and I cherish it with the most thirst and curiosity I can muster. In the end, looking back, the trail I leave will be what it will be. But I no longer can say I can see the end or care much about it. All I care about is right now and how I can bridge the breath I am taking now to the next one. This is as far as my eyes can see anymore.

I wish all of you out there, on either side of this, or in the middle, will find the strength and power to go on. I know it is in each one of us. Trust your teams, and love your support groups, and together you will build a wonderful life. Despite the fact that this is a disease of the heart, it is definitely not for the weak hearted, and we're all here to prove this.

Much health and strength on all your journeys.

Thinking especially of all of you who are in surgery this week, and who are struggling every day to find your new normal.