I can’t believe it’s been so long since my last update. Life has a way of doing that to you. 

I would say we are in the “pain management” stage of life right now, on multiple fronts. The doctors are using some new meds to manage my PTSD and it also works to manage the chronic pain and it appears to be working. It’s building up in my system, so until it’s resolved, they do not want me working full time. The plan is to go back in a week or so. Praise God for my awesome coworkers who are helping cover for me and for a fantastic Pastor who cares more about me as a person, than the bottom line. He has been very supportive and understanding and I am most grateful. Today, I had the last of the scheduled cardiac/pulmonary tests and for the first time EVER with one of these tests, I didn’t end up being sent down to the ER or admitted for further observation! Praise God! I think the quote of the day was, “I’m so happy, I’m doing a jig over here.” -Mom
My Pulmonologist will get the results in about a week and a half. So we sit and wait. Or rather just keep moving with life until we hear back. 

Overall, things have been steadily improving over the couple weeks and it’s good to be going in the right direction. I’ve been blessed abundantly over the past few weeks so I want to remember these:

1. Regular skype time with a dear friend. Highlight of my day. 

2. The love and support of my mother and my “inner circle”

3. My boss and coworkers continually supporting and wanting what is best for me and working extra hard to cover and serve the parishioners we so love. 

4. Better pain management. 

5. My medical team of doctors. I have an awesome team and while they drive me nuts at times, they work so diligently with me on my case. #masscardsforallaround

just a little heart humor for you.

Nothing crazy happening here, but just popping in to update. 

The Good: 

• This doggy was top dog in puppy class this week. She did awesome! We are seeing some improvements on the home front too.  
• I was seen by a new Physical therapist today and she thinks she unlocked all the pain…more on that below. 
• Family is in route this weekend for a visit. 

The bad: 

• My bloodwork showed that my A1C went up significantly since last month. This happened before, so we are restricting diet and upping the meds again. 😦  
• I have had an appt everyday this week with a different specialist, so I am exhausted. 

The ugly: 

• Finley has destroyed/chewed two sweaters, one soccer ball, one mailing envelope, two cardboard boxes, 2 Ziploc bags and her personal favorite: TP. 
• It’s been raining for days. 
• I have had pain consistently without any relief since Sunday. 

What’s the story with the pain? Here’s the facts:

• It is related to the sternotomy.
• It’s not cardiac or pulmonary natured, although I do have angina controlled by nitrates. 
• Narcotics are a no go as an option for treatment, muscle relaxers barely touch the pain, and ibuprofen only dulls it. 
• My cardiologist had me follow up with my GP about two options.: tramadol and some other nerve pain med. My GP would like to try a 3 prong approach (aka: “you and I will figure this out with cards/Pulmonology”)-massage therapy, aquatic/land physical therapy and adding tramadol for moderate to severe pain.
• It is becoming clear that one approach just won’t work. I just pray for some relief. 

What was the PT breakthrough today? 

• Turns out that post surgery I never learned to expand my diaphragm to allow my lungs to fully expand. I pull by back and neck back just enough so the lungs can expand a littl bit. Your body is supposed to move 4-6 cm with each breath. I move zero. My PT has never seen this before. 
• I have such pain in my neck and back because they are doing the work with each breath. They are supposed to do none of the work. 
• I am having shortness of breath, cardiac chest pain, lightheadedness and increased heart rate because my heart is having to work hard due to the lungs and blood stream barely getting enough oxygen due to my very shallow breaths. 
• Some of the sternum pain is probably due to the muscles being so tight (like a clenched fist instead of an open hand that easily moves) due to not being used/adhesions from my incision. 
• Aquatic therapy will open me up without stressing the body, land therapy will work on the incision & strength building. 

Gluten free?

• With all my allergies, my anti inflammation diet, cardiac friendly and diabetic friendly restrictions, it’s been tough. 
• I cheated once and felt so sick all night, so that won’t happen again. 
• I almost had a meltdown in the grocery store, next to the can of beans. 
• I’ll be meeting with a nurse/nutritionist at my GPs office who is going to help me with coming up with a plan. 

I never wanted to complain about this chronic pain. But my GP put it well, “stop trying to be so strong, so we can help you”. A.K.A: being honest with yourself and knowing it’s okay to ask for help, even if it means a 3 pronged approach, is huge. 

Chronic pain takes a toll on the body, emotionally and physically. And also spiritually. This was the first week that I was honest with myself about how tired I am of pain and with God. There is a lot of anger in my heart, because I can’t answer the why of “why do I have to live with such chronic pain?!?”.

 I sat after communion last week, begging for any relief and pretty much laying it all out before God. I smiled at the nice usher as he passed the basket, all the while bearing my heart to God, and not gently. Much laid behind that smile. 

But as I sat there, I thought  about what I’ve learned from my new job; is you never know the burden one is carrying: a broken marriage, addictions, emotional, physical or sexual scars, a sick loved one, emotional trauma, a wayward child, the list goes on… But  The church is beautiful in the brokenness of her children. It offers peace, grace, love, forgiveness to its sinners and it saints. 

So where am I going with all this? The reality is that I had to be honest with myself to be honest with God. He waits patiently to restore his children and I have confidence He will, I just pray for the grace to continue to carry this Cross, ask for my simon of Cyrene when needed and choose joy amongst the pain. 

How was y’alls weekend? Ours was pretty good, errands, church and floating in the pool. Hello summer! Last summer I wasn’t allowed to swim and so mom in solidarity didn’t either. So we are making up for lost time! 😎

In the back of my mind were two appointments today. Rheumatology and cardiology. We were waiting with baited breath for the rheumatology results which showed no connective tissue or auto-immune disorder, so we have no answer beside the fact that they broke my sternum and put me back together for the inflammation and pain. 

..although I was tempted to skip my cards appointment, reason got the best of me and I went. My Cath site looks good, still good news on that front and because of the recent testing, we know my grafts are open and my heart is functioning well at the moment. Doc said “see you in 3 months”. We’ve tried this road before and so my prayer is to actually make it that long-no ER visits, hospital stays or calls to the office. Nada. Zilch. Nothing. Please say a quick prayer for that. 

Pain remains a big problem. Because of my other medications, they are out of options to give me. So I have just accepted that this is as good as it gets. Take a breath. Did that hurt? People have asked me what my pain is like so I can only explain with every breath I take I experience pain. And even throughout the day, pain. For now, no more tests, I’m allowing my body to rest. 

In other news, I have gone gluten free as of today. There are some great resources for anti-inflammation diets and gluten is the first one to go here. We are praying we see a difference. 

We had a problem with a medication causing me to gain weight (it’s been promptly removed/replaced) and a problem with a cardiac patient saying “to hell with this cardiac diet” for a few weeks. But as of today, we are back on track. 

I also got some direction on exercise today, so I swam some laps when I got home and it felt good to be active again. Today, I’m taking my body back. 

As I was leaving I was talking to my friend Carina and she said “girl you need more than these doctors, I know what you need…you need God”. It was a good reminder to stop and allow God to be a part of this healing, from the inside out. She sent me this song:

I was asked this week by someone how are you handling your recovery? I smiled and said good when in reality, I’m still processing everything and working with all my doctors to still figure things out like medications, diagnosis, etc. I was talking with my counselor recently about my PTSD/anxiety and I explained how frustrated I am that I keep feeling like the wheels are stuck moving forward emotionally, and she put it so sweetly, “everytime you try to move forward, you have another scare or hospital stay, lets work on this one step at a time.”

So how am I handling my recovery? one step at at time. physically. emotionally. spiritually.

We had a little scare last week in regards to my heart. I was at work and did not feel right. My coworkers were busy with various things/around the church somewhere, so I called 911 on myself. My coworkers quickly came to my aid once they realized what was going on.

The EMTs got me wheeled out of the parish office and into the ambulance. Before we had even left the church parking lot, they had started an IV, given me nitro and run an EKG. I knew something was up when the lead EMT, said ‘borderline in lead…’ and they were transmitting the EKG to the hospital and calling ahead. Then he said to the other EMT, “they are activating the heart team”.

When we arrived they yelled, “is this the 27 year old STEMI? Room 7, the crash cart is there”. I wanted to scream at the nice nurse, “what other 27 year old female to have being rushed in here with a heart monitor on?” But I kept my mouth shut. The nice EMT said its going to happen fast so get ready”, ‘um, excuse me, what is happening fast?”. In walks two doctors, 3 nurses and some techs. The doctors introduce themselves, start asking my history, checking my medication list, and saying ‘prep her for the Cath Lab.’ They see a change in my EKG from the last time I was there that indicates to them what could be a ‘borderline STEMI’. Do I consent? Yes, go, if you are saying I am having another heart attack by all means, lets go.

Heart Cath #5  in less than a year.Being that we were at a different hospital than usual and me being me, I ask the nice nurse as they are wheeling me, if this doctor is a real cardiologist and has he done this before? Not realizing the doctor was right behind us. (I also asked my cardiologist his credentials the first time he did one of my CATHs, so apparently its just what I do). Good news. He was a real cardiologist.

In less then 15 minutes, we were in the Cath Lab and starting. Once he is done, the doctor informed me that there were no blockages and it could have been a vasospasm (spasm of one of my coronary arteries). They send me home a few hours later and tell me to follow up with my cardiologist in a week.

Did I have another heart attack? No. Could it happen? Yes.

We are drawing very close to the anniversary of my heart attack  and so all those memories came rushing back, the feeling of fear, loss of control, having to surrender myself into God’s hands and pray a quick examination of conscience and Act of Contrition on the Cath Lab table before they push the medications to put me in La-La Land.

Its scary. Its real and its my life.

I will for always and forever me a cardiac patient and my life will be filled with many more tests. Is it exhausting? Yes. Is it scary? Yes. Is it painful? Yes. But don’t you worry, silly little heart, I am not going down without a fight. You may throw some good punches somedays but, I’m a heart warrior, thank you very much.

So please keep the prayers going, my doctors are still watching me verrrrrrry closely and working diligently to get to the bottom of all of this. We need your prayers!

The past few weeks have been so frustrating. The flu, pain at a level 12/10 and being disappointed and frustrated with my medical team of doctors. 

When I was in with the flu, Pulmonology pointed at cardiology and vice versa. It was like a game of “tag-not it”. I did tell one of them in a pain-killer induced state to get their acts together and their stories straight… Oops! Sorry to whichever doctor that was. I never once doubted my team until now and that is a very hard place to be. I know my body and something isn’t right. 

There is now talk of different procedures and repeating my right heart cath. I don’t even know how I feel about that. I don’t have the greatest confidence in my team right now. It seems that they only push so far and then they give up. I just want to scream, listen to me. Stop reading your darn charts and listen to the patient in front of you…. Oh…and keep going until you find the answer for all this pain. We already know I don’t follow a textbook so maybe they should start thinking outside the box. 

When I was at Church this weekend, I asked the Lord to send me a reminder of a gift he has given along the way and to even be able to see it amongst the pain. And God has certainly reminded me of a gift that he’s provided along the way. It comes in the form of a friend named Carina.

I met Carina the first time I went to the cardiologists office and she was my Medical Assistant. She did my EKG and roomed me…and has for all my follow up visits. As in I don’t let anyone else room me. 

When you see your doctor so often, that means you see the MA just as often. So over the past year, I’ve built a friendship with Carina. She visits my room when I’m in the hospital, we text back and fourth and most of all she’s always treated me with compassion. She’s been saddened with me when things weren’t going right, she got excited when things were going well and she’s been a source of support though it all. 

Not many people understand things like nitro doses, my medication list or my medical history as well as my Dr and Carina. It’s been so comforting to have someone to reach out to in the moments of fear, of pain, of frustration. She’s encouraged me, laughed with me, challenged me, prayed for me and been such a good friend. She’s just one of those people when you meet them that you know you will be blessed to have them in your life. So keep rockin’ it Carina. 

…And mom was right. It went a little like this:

…I had a cough for a few days, but otherwise felt good. Mom suggests calling to schedule an appointment on day 2 of the cough and continues for the next several days to encourage it.

…The cough continues and I get a coughing fit while walking Finley after work, that takes my breath away and my chest feels tight. I think…”mmm…Maybe Mom is right and I should go to the Doctor. I head up to urgent care around the corner and mention I’ve had a cough since Saturday and my chest hurts to the nurse. In walks the doctor not 2 minutes later, sees my heart history, sees my medication list and starts calling 911 for a medical transport to the nearest hospital.

…Within 5 minutes, they had an ambulance there (because I was having active chest pain, I couldn’t drive myself), were trying to start an IV, had given my 3 baby aspirin. I insist its not cardiac and could someone check for bronchitis but they dont want to take any chances so off to the ER, I go.

..Turns out I had the flu…and viral pneumonia.

Because I have Pulmonary Hypertension on top of my cardiac history, it makes my reserve less to be able to fight the infection. I remained on oxygen for 3 days and began breathing treatments every 4 hours. Cardiology watches closely, but pulmonology takes the lead on this hospital stay, given that it is the pulmonary hypertension that is making the flu worse.

So for 7 days I remained in the hospital, hooked up to a heart monitor, and fighting the flu. Once they gave the all clear to leave, we didn’t even wait for a wheelchair and made a break for the elevator on foot.

I was told to rest at home for the next several days and its good to be feeling much better than a week ago. I am headed back to work on Monday and looking forward to it. Unfortunately, due to the flu, I am experiencing chest pain again. They think that it could possibly be related to pericarditis, so we are treating for pericarditis again.

I am grateful for the weeks that I did feel good, because I know its possible. We now just keep pushing to feel that good again. Please pray for my continued health.

Lesson of the week: Listen to Mom when she suggests going to the doc the first day.