in no particular order, of course.

1. When in doubt, shower. Thinking you can wait until tonight to shower that hair? Think not, always be clean. Because if you end up in an ER or even worse, being admitted to the Hospital, you probably wont be able to shower. Especially, if you are on cardiac monitoring.
2. Learn how to have your companion (aka mom for me) learn how to wash your hair in the hospital sink. You will feel so refreshed and at least your hair will smell good, if you have been at the hospital for a week.
3. Always shave if you are a lady, because nothing is more embarrassing then having your doctor go to check your legs for swelling and having a cactus patch.
4. Lastly, always make sure your toenails look good. Your luck, you will get the cute unmarried doctor or nurse who has to check your pulses. You want to win the “best toenails on the unit” while you are there. #alreadywonthatawardatHopkins
5. As previously mentioned, do not use WebMD. The last time I used it, I had convinced myself I had 12 different conditions, when in reality I had a stomach bug. Leave the diagnosing to your doctor.
6. Pack a go bag. This is my number one tip. Buy an extra phone, kindle, ipad, etc charger and keep it in this bag. Also pack your own toiletries (travel size shampoo ,see #2, soap, brush, toothbrush, toothpaste). Keep those extra set in your go bag, along with some comfy pajamas or shorts, to wear under your gown. The easiest thing is to tell your mom to grab the green bag, when you jump in the car or ambulance. Most importantly, keep a non medal rosary in your go bag. If you end up in the Cath Lab you can carry anything non medal in, so I have always taken my rosary, I only think I’ve usually gotten to the 3rd prayer before the meds kicked in, but it brought me comfort. It also helps to have for nights you can’t sleep, to ask for our Lady’s intercession.
7. Find a way to organize your medications. We use two over the door shoe hangers to organize mine. Each slot is labeled with a index card with the name of the medication and the dosage. That way, I can tell my mom to go grab the Atenolol, and she isn’t searching for days.
8. If you are on more than 3-5 medications, sort them into little baggies for each day of the week (we do it every two weeks), so that your daily medications are already presorted. With 30+ pills a day, it would be quite confusing to have to go through each medication every morning and evening.
9. Have your emergency medications in one location and notify people around you where it is. All my coworkers know my nitro, baby aspirin, inhaler, benadryl is in my polka dot pouch in my purse and my medication list is always in my blue folder in my purse. It helps them feel at ease to know where it is, if they ever need to help me.
10. Always carry your medication list with you. Include dosage, time taken, name & the generic name on your list. This helps the doctors and nurses when they are ordering your meds during your hospital visit or at followup appointments. I also have a list that includes all my specialists with their name, address, phone number and fax number so that they can easily be in touch with one another. Finally, I have a list of allergies and my medical conditions ,(it also includes what vessels were grafted), so that in an emergency situation it can be handed to the doctor and he can see what he’s looking at.
11. Order a medical alert bracelet. I was able to find a nice website, called Lauren’s Hope, which feature fashionable medical alerts that  you are able to engrave on the back. I should be better about wearing mine, so that if I was ever unconscious or alone somewhere, people would know that I am a cardiac patient. I also have a keychain that says “medical alert-Heart Patient”, so that if I was ever in an accident, the EMT would hopefully see it on my keys.
12. Find good spiritual reading, to keep your spiritual life alive. I didn’t do this for awhile and amongst all the doctor visits, hospitalizations, and chaos, my prayer life took a hit. When you are bed bound for days, you have no excuse to read that good spiritual book that you’ve been wanting to read.
13. Read funny books too. My counselor gave me this advice and she was right. She and I talked about how I needed to have a healthy way to ‘leave the medical stuff for a while’ and enjoy myself. Reading a good, funny book has helped distract my mind. She was right
14. Get help if you need it. I mean professional help. Who cares if you need to go to a psychologist and/or psychiatrist. No one has to know, but you would be surprised how comforting it is when you do share, and someone says, yes, I go too. You can ask each other medication questions, talk about if its a good day or a bad day and be a great support to one another.
15. Trust God. When you can’t see God’s hand, trust His Heart”. I have had to pray that line so many times over the past two years. Trust his heart, that loves you so abundantly. Having a chronic illness will be difficult at times, manageable at times, but it will also be the journey you walk. You can walk it with God, or you can walk it without God. It’s up to you…but walking with God, is a whole lot easier.
16. Have a good support team and that one person you can say whatever you want to. My mom has to be my greatest companion through all the ups and downs. I see her wish she could take it all away, I heart the fear and concern in her voice when she asks the doctors a questions, but I also see the mother’s heart who is their to fight with me and fight for me and protect her baby girl. Word of advice to my doctors: don’t make Mama Bear mad, because you are gonna see a whole other side of that bear.
17. Look into social media support groups. I am in a couple for heart patients, and it is a great way to ask and get information. Have a question about if a certain medication also caused others a certain side effect, people can weigh in. It certainly isn’t medical advice, but its there to encourage one another. Usually, there is at least one person in one of the groups in the hospital for something, so its also become a prayer ministry, praying for other people. I have also become connected with other young adults who have cardiac issues, so it has helped me a lot.
18. Only stay with Great doctors. I have gained some and I lost some duds along the way. Make sure you have good communication with your doctors. With 11 specialists, I have to make sure they work as a team. And usually everything gets run by cardiology, because they want their clearance. The good part about being a 28 year old cardiac patient, is that I am not just a name on a chart. Doctors remember me (and usually my extensive medication list). They have to work well together and if someone isn’t playing nicely with others, he is gone.
19. Find out which doctors you are most comfortable with. I prefer male doctors for urology, GI, cardiology, pulmonology, surgeon, etc. But I prefer female doctors for Psychiatry, Psychology and as my GP. I like the matter of fact information male doctors usually provide, but I also feel more comfortable with my female doctors for the emotional side of things, because I feel more open to talking to them. This is a matter of choice. Find what works for you.
20. Be honest. If you are tired, take a nap. If you are not up for going out after a long week, be honest. If you are struggling with depression and need help, be honest. Be honest with yourself and be honest with others. You can’t manage this illness by yourself, but you can have a lot of great help if you are honest with others.

Things have been status quo for the past two weeks. Getting back into my routine, doing followup appointments from my hospitalization. This week I learned the difference between a good doctor and a great doctor.

A great doctor is your advocate. He fights for you and he fights with you. All of the care I have received at Hopkins has been great. Everytime I see a baltimore, maryland number I usually answer, because its usually regarding an appointment, medication or bloodwork. But this week, it was my Hopkins Cardiologist.

He was calling to check in since my hospitalization and answer a few questions I had. He also advocated this week to reach out to a colleague whose speciality is difficult diabetes cases and they were able to get me in today, instead of in 3 months. The new endocrinologist was great, changing meds that research has shown that they help cardiac patients. He also wants to speak with my Hopkins cardiologist to go over a few things and his game plan to make sure it sounds good to him. Its a team approach and they both are helping me fight heart disease.

I am feeling okay, still not great. The mix of medications makes me nauseous, I am still experiencing some chest pain (but I’ve been given instructions on what to do..if it changes, I am to call in or go to the ER). I am supposed to be monitoring my BP and heart rate as we might make one more change on my cardiac meds. I’m hanging in there.

I ask you to pray for a little heart warrior who is fighting a battle far more difficult then my battle right now. I’d change places with that little one in a heart beat. There is a bond among heart patients you can’t explain. You feel connected to each one, because they are fighting a tough battle just like you. So please keep this little prayer warrior in your prayers.

Hello Friends and family,

We have had quite the eventful couple of weeks since I last wrote. Last time I wrote, I had started strength training at cardiac rehab and all was going well and I was pain free for two months.

…And then the past two weeks happened. It started late Monday night, that annoying chest pain feeling came crawling back and more intense than previous “episodes”. I was also having some difficulty breathing, so we called EMS and they took us to our local hospital. That hospital ran troponins (a rise in troponin indicates a heart attack, and is taken 3 times every 6 hours), gave me morphine every couple hours and sent me on my way, saying “you didnt have a heart attack, but call your cardiologist).

I called my local cardiologist as my Hopkins cardiologist was at a conference and out of town. My local cardiologist decided that we should stay the course medication wise and maybe that was a one time event. Except it happened the next night and Mom and I were on our way to the hospital that my cardiologist practices at to get. They kept me for two days, ran some more tests and sent me on my way.

We got in the car, ran home to shower and grab a bag and headed up to Hopkins, calling my cardiologist’s office up there, so they were aware.

We went via the ER to Hopkins and were admitted within a couple of hours. Given my history, I am considered a “high risk” patient so they ran a few more tests and I was admitted to the cardiac care unit. They ran multiple tests, considered taking me back to the Cath Lab, but decided it was not worth the risk, and worked on my medication dosages. They basically titrated my doses down and then reintroduced them one at a time and titrated doses back up, all the while watching my blood pressure, heart rate and I was on continuous cardiac monitoring.

We maxed out medication treatment to their maximum doses so there is nothing left to do on that regard. They want me to try something called External Counterpulsation Therapy, which is an alternative treatment for angina, when all other treatment has failed. If this does not provide relief, then we will possibly be walking down the heart transplant road. Its a lot to process.

I still have periods of chest pain and am diagnosed with microvascular disease and refractory angina and its debilitating. The doctors cannot explain why I responded so well for two months to medication and then all the sudden had severe episodes. I’m learning what my limits are physically and mentally and am learning to accept that we have done all we can to manage symptoms and that this may be the quality of life that I have.

Please pray for me, my doctors and my health. I really appreciate it!

and I survived. Today was my first day of strength training and it actually wasn’t bad. The exercise physiologist was with me the whole time and showing me how to correctly do the workout. We did 10 reps (1 set) and will build up in weight and reps/sets over the next few weeks. Today we did legs and arms and one chest exercise and will add in more next Monday upon my return to cardiac rehab.

In other news, I have to say I love the care I receive through Johns Hopkins. I emailed my cardiologist up there to say I was having a hard time finding an endocrinologist that was good and felt comfortable with my case, given my cardiac risk factors. Diabetes is a huge risk factor for having a coronary event, especially in those who have known cardiovascular disease. A nurse explained it that heart disease causes built up of plaque in the vessels and diabetes thickens your blood, so having thickened blood move through a narrowing vessel =not good.

Within two days of emailing my cardiologist, he reached out to a colleague of his to discuss my case and see if he would be willing to take me on. Just two days after his email to the Doctor, I had an appointment scheduled and will be heading up to Hopkins for endocrinology at the end of this month. This is the level of care that I have always received at Hopkins and I am grateful for it.

My cardiologist also ordered one more set of blood work, just to make sure my kidney function is still good after the heart failure, just to be safe. So alas, I will be poked and prodded again this week on my day off.

My care includes a lot of specialists (11 to be exact) and a lot of coordinating with various doctors. It can be tiring at time and I spend a lot of time following up with offices for test results, making sure things were sent to another office, etc. It can be draining at times, but I look at the team of doctors on my ‘complex case’ and remember how long it took to find the right doctors and the right team and I am grateful for each one of them.

But don’t worry, I got this. I can handle all these doctors and all the details of my case. I just like to remind them I am a person and my case is complex. I am not the complex case. Learning that myself, took a lot of hard work and prayer. Thanks be to God for his grace.

…and beyond the numbness. Lent is upon us and here goes 40 days. Don’t count the days, make the days count.

We are going to start strength training this week at Cardiac rehab and I was explaining to my coworker today, that I am a little anxious to see how things go. Because well part of me is still numb from my surgery.

Yes, there was a side effect of the surgery no one told me about. To the left of my incision and the back of my left leg are numb. I have no feeling in them. It is because to create my grafts, the doctors took a vein from my leg to create two grafts and the mammory artery from my left chest, to create one of the grafts. When I asked my cardiologist about it, he told me ‘some people get the feeling back and some don’t. Mmmm. Gee thanks bud.

Anyways, I am anxious to see how strength training goes. Will I feel the muscle being strengthened? Will I be sore? Will I know when I have stretched far enough? But its time to move beyond the numbness.

Not just the numbness in my leg and chest, but the numbness in my heart. During cardiac rehab, I usually think about things that are going on in my life, or weighing on my heart and at the end of rehab, I leave it there. Its not just about the numbness in my body, but also reaching out to the places in my heart that were numb…

…the disappointments in doctors. The “you are a complex case saga”

….The disappointment in friends and family, who moved on with their lives (as they should have) as we navigated the past 19 months.

..the loss of friendships, as we slowly drifted a part, simply because I was either in the hospital or not well enough to stay in touch.

….the loss of control of my life day to day. Never knowing what the day may hold or what ER I would end up in.

…the struggle to want to pray, pray at all, trust God.

I survived the numbness in my heart. Only by God’s grace. I will never forget the homily of a priest friend of mine for Christ the King Sunday a few years back, where he concluded with “is there any part of your heart that Jesus is not Christ the King?”. I have thought a lot about that question as we rolled up to lent. He wasn’t Christ the King to all the places of numbness within my heart.

We all have places of our heart that are numb and in need of Christ. What if we cleaned it out and let Christ reign as Christ the King in our heart this lent? I know I will be striving to let Christ into the numb areas of my heart this lent. What about you?

 

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.

 

 

This morning, I was sitting on Facebook and so I took a few minutes to roll through my page, to look back on how far I have come.

This Monday,  I have an appt at my cardiologists office to do an ultrasound of my carotid arteries. They want to check for flow and function. They will decide if they need to do a complete ultrasound again of my heart after this one.

On Tuesday, I am headed to Georgetown to meet with a rheumatologist to check for an autoimmune disorder that may be underlining, given the inflammation in my bladder, inflammation in my stomach lining, the fact that I got pericarditis twice in a short time period. There appears to be chronic inflammation in my body and now the doctors want to know why.

Then on Thursday, I will see my psychiatrist for a tune up/check up. Its usually a symptom check and medication refill time.

Its sometimes overwhelming having 9 different specialists who all want appointments and the weeks where I have a few appointments, it often brings back memories of everything that has happened. But I Feel different going into this week. I look back on these past few months scribbled into Facebook posts, and I see how far the Lord has carried me.

I have renewed strength, not because of my own merit, but because I am trying (key word: trying) to remain grounded in how far the Lord has brought me. Its not easy and I am always quick to point out to Him the work and healing He could be doing. But in looking back, it helps you to look forward. But just like in this season of advent we wait with joyful anticipation, I look forward to being healthy again. My counselor reminded me this week that I have tendency to replay the past (PTSD) but also focus so much on the future that I forget the present moment. What if I miss the presence of God in my life today, because I am too worried about tomorrow?