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.