Hello All,

This week has been a quiet week. No appointments at all. I think this a very first week since my surgery that I haven’t had some sort of appointment. It felt good.

I had a great week at Cardiac Rehab. We are up to 45 minutes of Cardio. 15 minutes on the treadmill at speed 2.5 with an incline of 1% (a big increase from last week), 15 minutes on the bike (approx. 3.0 miles) and 15 minutes on the NuStep (basically a seated elliptical). The nurse said we will also start adding strength training and working on transitioning me to the regular elliptical (starting with just a few minutes) over the next week or so. My heart rate and rhythm look great throughout the sessions. so HIP HIP HOORAY!

Mom and I (and some very helpful helpers) set up an recumbent bike and a new tv downstairs, so I have even been able to continue my workouts at home.

I am feeling great. I’m getting used to the early am wake-ups for cardiac rehab (and taking naps after work). I am enjoying having the willpower to make better food decisions and reminding myself that each small decision is part of my bigger heart health.  Small and steady progress in the right direction.

 

To the newly diagnosed heart patient,

I see you there on the other side of the screen, googling heart disease and webmd’ing yourself like its your job.

1. keep reading
2. stop using WebMd, you will pretty much convince yourself you are dying if you read that, talk to your realMd.

First things first, you got this. Yes, you are going to have moments that scare you, like when they roll you into the Cath Lab for the first time and about 8 people you dont know start surrounding you to do their respective jobs, while all you are doing is looking for the familiar face, your doctor. But, you got this. Fear is not of God. Acknowledge it, know that it is real and then remember that you are in the hands of trained professionals and in the hands of God. If you arent sure of your doc’s credentials, And just ask for their credentials, like I did.

Find your safe place/people. Your recovery is going to suck at times. Really. If its post Heart Cath, its probably going to be your groin that hurts from them shoving a catheter into it. If its from open heart surgery, its because you just had your chest sawed in half. I’m not sugar coating it because I had one doctor who was completely honest and the rest said “it wont be that bad”. And Im grateful for that one doctor who said, “this is going to suck and you are not going to like me for a few months but it will get better”. Its hard on your body physically, you lose the energy you once had, because its devoted to your healing. But find your people. The ones who you can laugh, cry, be honest with, ask to brush your hair and even help you shower. Find those people, because they will be your saving grace. Don’t be worried about who isn’t your people, worry about who is.

Be okay with not being okay. You have a disease, a very serious one that is life threatening if not treated properly. If you are young, you will feel like an island at times, because while your people are experiencing it with you they aren’t experiencing it for you. Get help if you need help processing your disease/illness. I wish I had known that at my weakest moments, I am far stronger than I ever thought was humanly possibly. Pray for God’s grace for you to accept the need for help and for wisdom to know the right person. If I could tell myself one thing from over the past 17 months, it would be to get help earlier and when I went to counseling those first few months after my heart attack and surgery, to be real; to be authentic; to be broken. Don’t say what you think people want you to feel, say what you are feeling. A whole army of people is behind you, and if not, know you have at least one person here rooting for you. Me.

Find solace in your pain. If one more person told me to offer it up, I was going to smack someone. You try living with pain that no one can figure out for 15 months, that was so bad you went to the ER, praying for relief and hoping for answers, and then come talk to me. A dear friend I know is suffering with chronic pain. He’s a simple man and a joy-filled follower of Christ and he recently said that he find’s solace in his pain, because he know it can be redemptive. Yes it wears on him, and he too hopes for relief, but he finds comfort in his pain, knowing that he is union with our Lord.

Maybe you aren’t living with a disease, but I bet you each know someone who is struggling with a new diagnosis or a long standing illness. I hope this blog post brings you understanding if you are a caretaker and comfort if you are the patient. Its honest and its real, because its my journey with heart disease.

My counselor recently encouraged me to share more of my journey, because she thinks it could help someone. If my suffering helps one person, then Thanks be to God. Just think God thought this world needed a You. He created you for a unique purpose and plan and together we share in that. You are worthy of his love. He loves you, even in the moments you can’t see him.

We have this quote on our wall at home, “when you can’t see God’s hand, trust his heart”. Remember that.

 

 

 

 

Two weeks of Cardiac Rehab is in the books! This is the longest I have ever been able to go in Cardiac Rehab, because we usually had to stop due to chest pain, further testing, not getting clearance again. But thats okay, because I so just broke my own record by getting two weeks in.

Its been great to be going and not have chest pain. Praise the Lord for the Doctors at Hopkins during my last stay who refused to give up and found a beta blocker that works for my heart. Beta Blockers control heart rate and keep the demand on the heart lower, because its not pumping as hard/fast. I was always sitting in tachycardia and for the past 17 months we have fought to find a drug that worked. Some made my chest pains worse, some interacting with other meds, some just didn’t do squat. But hello Atenolol. You are my friend.

Atenolol works in cardiac rehab by not allowing my heart rate to get to high, but also exercise and condition the heart while completing cardiac rehab….enough about meds more about Cardiac Rehab.

I go every Monday, Tuesday, Wednesday at 6:30 a.m., which means I leave the house between 6:05-6:10 a.m. I arrive at the hospital and go to the 5th floor of the physicians office, only to be greeted upon my exit from the elevator by a whole crew of gentlemen. Thats right I am the only girl at that time. I also am the only one below the age of 40. Something I was prepared for.

This morning a few of us were a few minutes early and were sharing our stories, all heart attacks, but I was the only open heart surgery. There is no judgment at Cardiac Rehab. You can only bike 5 minutes  your first day..thats okay. Because we all start somewhere and it is 5 minutes more than  you did yesterday. There is no comparing workouts or trying to outdo each other, there is a good camaraderie amongst each  other, chatting about how that session went and lots of “see you next time”.

We gradually increase the type and intensity of our workouts, overseen by nurses and exercise physiologists. As of the end of week 2, I am biking 3 miles in 18 minutes. We are only going up from here.

I’ve been thinking a lot about Cardiac Rehab and the fits and false starts I’ve had with it in the past. It wasn’t God’s time for me to start before, he knew my heart needed further healing. God’s timing is always perfect. Maybe God is telling you yes to your prayers, or maybe its a no, or maybe its a not right now. Its disappointing and it hurts when its a no/not right now.  because we are human, but if we trust God more than ourselves, great things will happen. Not there yet, in  your trust, take it a day at a time, or an hour at a time or even 10 minutes at a time. That’s how I’ve gotten through 2 weeks of Cardiac Rehab. I was anxious to begin, but I know each hour belongs to him and so I trust that hour to him, that He will continue to strengthen and heal my heart as He wills.

…Well I am off and running to another hospital to do a sleep study to follow up to my diagnosis of mild sleep Apnea.

Youngest patient in cardiac rehab? Do a ring check, maybe your prince charming will be on the treadmill next to you. 😉 Embrace it.

The blog has been pretty quiet lately. I had those goal to post a lot and then life happens. January was no different. 2017 did not start off well.

Christmas night I went down for the count with the stomach flu for a few days, shared it with mom and then she shared it back with me for a few days. It was miserable.

Then, I started not feeling well. My number one piece of advice is go with your gut. Its usually right. I ended up at the local ER twice in one week due to not being able to breath. They immediately ruled out a heart attack (which I didn’t think I was having) and sent me home, even going so far as to say, “I don’t know what more to do with you”.

I knew I didn’t feel right. Luckily I had a 3 month followup with the Lipid Clinic at Johns Hopkins (they specialize in treating lipid disorders and getting my cholesterol numbers to be a “thing of beauty”). I mentioned my symptoms to my doctor there and he took one look at the vein in my neck (its like the pressure gauge for the pressure in the lungs, apparently) and immediately said, you need to start diuretics and follow up in one week.  So alas I did, and a week later I still wasn’t seeing much difference so he added another diuretic for the holiday weekend and I was to call on Tuesday morning.

Tuesday morning came and I was not feeling well at all, difficulty breathing, my abdomen swollen, chest pain. I phoned his assistant and immediately got a call back that I needed to get myself to Hopkins that evening, I was being admitted.

Turns out I was in diastolic heart failure. All that not being able to breath was me being in heart failure. Thank you doctors, but I know what is up.

And so mom and I spent a week on the cardiac floor, she read her kindle and was there for moral support and help in many ways 😉 and I was there poked and prodded for 7 days.

I also got to be a part of a sleep study that they are doing to gain research between heart failure and sleep apnea. As in, they wanted to do a sleep study to see if I had sleep apnea. Turns out I have a mild form and my local pulmonologist is referring me to a colleague in his practice who specializes in sleep disorders. Sleep apnea and heart patients are not a good mix, so we are going to get on this stat.

They also started me on a  beta blocker to get my heart rate down, I was sitting at 130-140 at rest and it needs to be between 60-100 at rest, my doctors would prefer I sit closer to 60. They know my heart pumps well, but doesn’t relax as it should. It took 5 beta blockers and 19 months and multiple doctors to find one that my body could tolerate. But my heart rate is now between 60-85 at rest.

I followed up with my local cardiologist yesterday and everything looks as it should. He even commented that he doesn’t know anyone else who would be more excited to see how well I’m feeling, but he was pretty sure he was the #2 most excited person. Its been a long journey, that took many turns to getting on the right medications, the right balance of things to where I feel well. The past 10 days since discharge is the best I have felt since before my heart attack and that is saying a lot.

We savor the good days. We make our way through the rough days and we soldier on as heart warriors. Its what we do.