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.

20 days. That’s the longest I’ve lived without chest pain since this whole thing started. 

3/26: The Vigil of Easter and the day the chest pain stopped.

45: the number of visits to my doctors’ offices before we got things right. 

Yes, nothing has been easy. But this week I had a follow up appt and it went a little like this.

My favorite Medical Assistant, C, checks me in and takes my vitals.

Doctor walks in and sits down, “how’s my favorite patient?”

“I’m feeling good, no chest pain, no palpatations, no lightheadedness, BP in reasonable range, no Shortness of breath. Overall I feel good”

Doctor grabs his chest and says “I think I’m going to start having chest pains” (a little cardiology humor) and nearly falls off his stool, (literally). He has a huge smile on his face. Today’s victory of feeling good was just as much a victory for him. We’ve had honest conversations about how hard my case is and he’s been fighting to figure this out just as much as I have. 

We chatted a few more minutes about some lab tests, my meds, etc and then he walked out to get his doctor pad, into their staff area, pumping his fists in the air. It was a good moment, that has been a long time coming. 

..it’s been so good to feel good. But it also came with some fear. Fear of how to “live again” in a way. There is no manual on how to resume your life after being sick for so long. I always wonder how my body will fare in a situation, will I be tired, will I get palpitations? Chest pain? 

But earlier this week I got the will power , to start fighting Satan’s attempts to steal my joy each day by filling it with fear. I have some work to do in the spiritual and emotional (and physical too) life that is going to hard, messy, dirty, tiring, so I ask for your prayers for the grace to be courageous to do the work.

But overall life is good. Still working on chronic pain and working building up my stamina but overall, I am good.

Thanks for the prayers! 

  

And we are back for another installment of Friday’s with Finley. She currently is sitting in jail (aka her crate).

The bandit stroke a few times this week:

1. A blue pen
2. Toilet paper
3. My freshly made lunch today. 

The crime scene and the bandit are documented below  

Last weekend, mom and I were each at the kitchen table working on tax stuff and we thought Finley was quietly chewing on a toy. I got up to grab something and noticed her nose was blue…and so was part of the carpet. 

…$7.00 bottle of resolve

I’m not sure when the toilet paper bandit struck this time. But all I know is the bandit struck. 

…$13.00 value pack of TP 

Finley expenses this week: $20.00

…Memories and laughs and a very forgiving mother of mine…Priceless. 
 

To all the Hannah, Jaque, Annalise and Sams and so many of my other nurses out there:

You are my heroes in medicines. 

On paper,  you cared for me at my weakest hours, monitoring my vitals, distributing my medications, helping me even just feel some relief from pain, charted for hours, and advocated to the physicians for me. 
But most importantly you cared for me. Yes, the doctors are due their credit for all their work too. But you were the ones…

 …at my bedside at the call of the button

…you were the ones making me laugh, when I got down

…you were the ones helping me do the simplest of things again, all with encouragement and patience as though you had no other patients. 

…you were the ones being advocates to the doctors, when a new idea was needed. 

…you cheered me on before every cath, and gave me hope before my CABG. 

…you treated me after my CABG with empathy and treated me as though I was your friend. 

..you always treated me as a person and as a patient, but never just as a patient. 

..you did so much more than words can express. So when your shift seems never ending, remember the patients who couldn’t have done it without your help. When your tired of charting, remember your words help us. And when you lose a patient, remember there is another one grateful that what you do everyday kept them alive and they are grateful for it.  

Keep fighting the good fight my nurse Warriors! You rock. 

Meet our newest series: Friday’s with Finley on the blog. Meet Finley, the dog on the blog.  

 

Finley was also known as “bandit” this week. The little rascal has been quite the theft lately. Need a laugh? Imagine this, you are all ready for work, brushing your teeth when in walks Finley. First she tries to jump in the tub, because she’d take a bath anytime. You get her out of the tub while still brushing your teeth. Then she goes for the toilet paper, Grabs it off the holder and makes a run down the hallway. You have 5 seconds to decide if your dental hygiene or having TP is more important. My teeth won and I walked out to the roll destroyed. That picture above is her admiring her work. Bandit I tell you. (Not to worry: other TP was procured)

People have asked and even commented that they don’t understand why we got a dog right now. Don’t I have enough going on? Yes, but Finley has been a life saver. She brought joy at times on days where the pain was all to much. Shes made me laugh and focus on something else besides myself. 

She’s also taught me a lot about Gods love. She may be the bandit of this house, eat my shoes, try to steal my socks BUT SHE’S MINE. 

I think about how many times I’ve sinned, turned away from God and yet He still says everyday SHE’S MINE. 

These past two weeks have made me quite grateful. The new meds are working, PRAISE GOD and my chronic pain is getting better through physical therapy. 5 words: GOD. BLESS. MY. PHYSICAL. THERAPIST. 

…and her trusty assistant at my house who heats up my heat wraps and gets my ice packs. Thanks mom! 

I’m back at work part time for now and I am so grateful for my coworkers. I love them and our little family. We are a small team and they watch out for me, making sure I’m not overdoing it and caring enough to say “hey” when they notice I am. We share laughter and it’s great to work with them with such joy as we serve the Lord and the parish. 

…I’m grateful for all the Lord is doing right now in my heart, physically, mentally and spiritually. Opening my heart again to allow him to work is truly the victory of the heart  I  am most grateful for. 

Since we are still in the octave of Easter, Happy Easter from Mom and I.  

 

Thank you for all the prayers. Our Lord heard your prayers quickly. I was released from the hospital a few hours ago. 
The doctors now believe the pain was the result of coronary vasospasms and “of unknown origin” (I.e. They have no clue). They believe there were two sources of pain. For now we are treating the coronary vasospasms and I am to take it easy. 
It will be a good to enter Holy Week in a different way than the usual pre-Easter bustle, but rather at a slower pace.

I’m going to spend time during this Holy Week to focus on our Lord’s journey to Calvary; how weak He must have felt, how tired, how much pain He endured, the suffering His mother endured watching him suffer, the times He fell, how long the journey must have felt, the words of the believers and non believers persecuting him and jeering along the sidelines, the amount of love it must have taken to keep putting His one foot in front of the other and not lose hope in his Father’s will. 

One of the scenes from the passion that has stood out in my mind from the first time I saw it  (here), is when our Lady sees our Lord fall and it flashes back to his childhood. And she runs with the same fervent love to her young child as she did to Her son on his way to Calvary. That was still her son who was suffering, yes, the redeemer of the world, but still her son. 

Everytime I see the scene above I think about just how much when we fall, our Lord picks us up, embraces us, dusts us off as any good parent would do and places us back on the ground to keep moving. 

…Sometimes he lets us rest upon the floor, fallen for a while longer. Or He holds us close for a while until we are ready to go back on our own two feet again, or he places us back on the ground with a nudge to keep moving. 

I think as Holy Week begins its a good idea to enter into the scriptures, to place ourselves there. Where would we find ourselves? Would we find ourselves amongst our Lords persecutors?  Would we find ourselves with Veronica wiping the face of our Lord, would we find ourselves  willing to suffer like Simon and help carry the cross, would we find ourselves at the foot of the cross with St. John and our Blessed Mother? 

Wherever we may be, would we have the faith and trust it takes, because where there is Easter Sunday, there is also Good Friday?

Wherever you find yourselves sharing in Our Lords passion, this Holy Week, may you be blessed abundantly. 

Please continue to pray for me, as I do for you. 

Today’s victory of the day: being able to sleep in my own bed. Praise the Lord. Amen! (Seriously!)

I’ve been in the hospital for the PAST 10 DAYS! 

It all started with a bout of chest pain that was not responding to nitroglycerin as it usually does, so off to the ER we went. We went to the one closest to home, not my usual hospital, so I became very proficient in telling my history to every nurse, doctor and tech who asked me questions….

…and all I heard was “you are too young”. Yes, thank you, I know. I smile and laugh it off as it hits me right in the gut. This has been the hardest part of this journey to wrap my mind around, my life is drastically different then most 27 year olds that I know. Being back in a hospital, running tests, being a medical mystery to the docs, brings back memories that are all too fresh. 

I had someone tell me recently to “just get over it” in regards to my health. It was one of the most hurtful things someone has said to me about this whole journey. I think it’s partly because on the outside I look okay, but on the inside a war is waging itself in my body. 

  
..I have chronic pain and arthritis in my sternum, I have pulmonary hypertension and right sided heart disfunction so we are always watching for signals of heart failure, I have high blood pressure, unstable angina, coronary heart disease, diabetes, high cholesterol which is known as premature heart disease, oh and PTSD and anxiety from my MI and CABG. But yet the only visible signs are my medical alert bracelet and my sternotomy scar. 

As much as I would love to “get over it”, the fact is that I can’t. I’ve been running for so long from the reality that this is my new normal, that the last thing I should do is “get over it”. Jesus has patiently waited to dive into it with him versus being so angry about being so sick. I’m going through it, not over it. 

  
Meanwhile, I sit in a hospital bed writing a post to ask for your prayers for the wisdom of the doctors. We’ve checked the GI tract, which came back normal, we did the non invasive cardiac testing, which came back normal. So for now all they can do is treat for pain that is of unknown origin. I long for the day when the longest stint between hospital visits is more than 4 weeks. 

Even my normal cardiologist called to check in when he heard I was still in the hospital. I tried to convince him to come bust me out, but he doesn’t have privileges at this hospital, so sadly he couldn’t. He apologized that “you feel like crap and that you can’t catch a break”. I mystify doctors and that’s hard. Even my cardiologist is running out of ideas. They rack their brains and even admit their defeat at not knowing where to go because of my age and history. They hand me off to the next specialist in an epic game of hot potato. It’s hard to always smile and bear their defeat with hope. It’s disappointing and very isolating and I usually spend part of my day begging the Lord to reveal something, anything. 

It’s funny a coworker came up to visit and he explained that he believes God is asking me to suffer with intention, for specific people and intentions. The night before I had prayed that God would provide some answer to the why of the suffering and my coworker started his visit with that exact conversation. So if you need prayers, know I’m praying for you. If you have an intention you want prayed for, know I’m praying for that intention. 

It’s my meek and lowly attempt to take a dark, frustrating situation and claim victory over it, for the Glory of God. Trust me, it’s taken a long time to get to this point, so if you feel stuck, frustrated or abandoned in a situation by God, don’t lose hope. Pray for the grace for the desire for hope, for the desire to seek God and continue to put one foot in front of the other, God in his timing will reveal himself to you. 

This week we had some victories. Blood work showed an awesome improvement in my cholesterol levels which put me outside the high risk area. My improved numbers were partly due to a new medication on the market that my cardiologist put me on. It involves giving myself an injection every two weeks. We call it “repatha day” in our house, because I usually get a cold for a few days after, so we hold our breath each time I take it, with the hope I don’t get too sick.

Being able to take Repatha was another victory because it was also just approved by my insurance.  Kudos to my doctor for fighting with the insurance company to get my coverage approved. Without insurance it would have cost more than half of my yearly salary for a years supply.

My doctor and I were happy with the victories….

But we have also been fighting some battles lately…

…In the words of my GP, when we adjust medications in what would be considered ‘normal’ fashion, my body auto corrects almost like a driver that over corrects the wheel.

…I started feeling like I was going to pass out all the time.

…My heart rate has not been stable, I drop low and then run high.

…And then there is the chest pain (Angina) that we can’t seem to control. It is usually controlled by Nitro, but it appears that I have developed what is known as Nitro tolerance. We just adjusted another medication in the hopes that will work. But unfortunately, the past 5 days have not been going well…

……and then I was admitted to the hospital last night and will be here at least through tonight. We are playing with medications yet again. My cardiologist is running out of ideas, a new cardiologist who is weighing in thinks it will just a a chronic problem, that has to be managed. But no one has been able to figure out why.

It’s been a long tough road, but even more so this past week. I have  heard multiple doctors tell me that we are running out of medical options and treatments and that I may have to accept that this is as good as it gets. I refuse to believe that the young age of 27, this is what my life will look like. Don’t worry… we are already looking into Johns Hopkins, Cleveland and Georgetown.

Please pray for me and the doctors.  I am specifically asking St. Therese for her intercession during this time.

If it’s astatistic, that only 2% of a diagnosis is going to have this or that symptom, I am that 2%. 

Today, I was reminded of that statistic. I have what is known as coronary vasospasms or printzmetal angina. Only 2% of those who suffer with chest pain, suffer with this type of angina, which often happens at rest. It can come on at the most random of times, and is often very intense. It means I never leave home without sublingual nitroglycerin. I am on two different types of anti-angina meds and still suffer. After 3 doses of my nitro, I’m instructed to go to the ER. 

It’s incredibly frustrating and sometimes scary. Usually with one dose of nitro, I get relief but today, I had to take two. I hadn’t had an episode this intense in 4 weeks, so it took me off guard. 

I am weary. We’ve been battling so many issues with my little ticker as of late: tachycardia, fluid overload (which is bad for someone who has heart issues), uncontrolled BP, and chest pain, all despite very aggressive medical treatment. In the past couple months I’ve heard words like diagnosis and prognosis. 

I’m tired of not feeling well. God bless my cardiologist, because he’s learned how to deal with me when I don’t feel well. Last week, I wasn’t feeling well, and the last time I didn’t feel that well, I ended up in the hospital for a week. I was less than thrilled to be in his office last week, mostly because I didn’t want him calling down to admit me. But, we added another medication and kept on moving. He gave me some words of encouragement and said see you in two weeks! 

I just want to feel better and have spent a lot of time thinking this past week about how to accept if this is just my new quality of life. I have multiple diseases that put me in the 2% category. And it makes day to day life hard. Many of them are invisible to the human eye, but very real. I have had to learn to slow down and relearn what is important in life.

Would I choose to be the 2%? No. But neither would anyone choose to be a part of any other statistic that makes life just as hard, if not harder. 

A wise Priest once told me, not everything is good, but everything works for good. I choose to believe 100% that is true. That is where faith lies, in hope. 

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