Hello All,

Buckle up. This is going to be long so I can update you on everything thats been going on.

To start, lets just say that I’ve had a very rough start to 2018 but it appears to be turning the corner.

Lets back up to late January. We made a late Sunday night trip to Hopkins ER, due to some abnormal chest pain, accompanied with shaking, high BP, nausea, sweating. When we arrived they did an EKG and told me they were full so they would have a doctor review the EKG and then it would probably be a little while. I caught a glimpse of my EKG and I knew something looked funny on it (b/c I’ve seen so many of mine to notice that it wasn’t my normal…but don’t ask me what it all means). My suspicions was confirmed when no less than 5 minutes later they were taking me back to sit at the nurses station as they moved a patient to put me on the cardiac monitor.

They also saw something abnormal on my EKG. Once they got me to an ER room, we had quite a few doctors (residents, fellows and an attending) in my room quickly. I knew it was serious when the Dr’s were hanging out at my door for a while and the nurses were telling each other “she’s a real chest painer” (my nurse wanted other entering/helping nurses that this was not an anxiety/GI chest pain issue). They were quickly repeating EKGs, starting a heparin drip, BP lowering meds, anti nausea meds, pain meds and calling Cardiology ICU for a stat review of my EKG and me. My BP was in stroke range (220s/130s), I was shaking and they thought I was in cardiogenic shock. The oncall CVICU doctor came down, determined I could go to a normal Cardiac Floor instead of the ICU and told them to hold off on sending me to the Cath Lab, so they could properly pre-medicate given my allergy to the IV Contrast dye they use to get imaging of the vessels.

Luckily, Dr. Jones who has treated me in the past and works in the Lipid Clinic with my cardiologist was the attending on service and took care of me this time. We got my BP and heart rate back under control over the next 24-48 hours and he decided given the continued abnormal EKGs and my pain, we should go back to the Cath Lab, but told me “they probably won’t find anything”. But I proved him wrong.

THE KICKER: Two of my bypass grafts had failed and were respectively 80%/95% blocked. We knew from a Cath in the Spring of 2017 that one of the grafts had a 40% stenosis, but no intervention was needed at that point. They needed to do an intervention on these occluded grafts.

But there was a problem: I was still vomiting uncontrollably, and not able to ensure I could keep Aspirin and a Anti-coagulant down also known as Dual Anti platelet therapy (DAPT). The interventional cardiologist called Dr. Jones 3x while I was in the Cath Lab to try and get clearance to place the stents to re-open the grafts. Dr. Jones gave a firm “no”, “she’ll have another MI if she cant keep DAPT therapy down.” The plan was to wait 30 days and see if I was keeping meds down. They did not believe their was an immediate threat of another MI, given that they were grafts and not native major vessels.

That week, they did do an abdominal CT scan to check for a stomach blockage, another Endoscopy. They were hoping they would see something new that would explain the vomiting and we could fix that and then my heart. But the tests revealed nothing, so I was sent home with anti-nausea meds, in the hopes I could start keeping meds down,  stop vomiting and eventually do the Cath/Intervention.

We returned home and I took the Cath Report to the original interventionalist who did my Cath/stent placement after my MI in 2015, on a Monday, for a second opinion. His plan was to see if I could stop vomiting and he’d be willing to do the intervention. He was suggesting rectal Aspirin (uh…no thanks) and we’d try to take the anti-coagulant away from food, to see if it would stay down. If that worked, I could have the stents placed.

That Friday, I was in my GPs office for a follow up and mentioned I was having pretty severe chest pain and she sent me directly to VHC and called the VHC Cardiology team to tell them I was on the way. My local cardiologist, Dr. P was out of town, but his colleague got the call whose first response was “sh*t, Dr. P is out of town”, but he assured my PCP he would take care of things until Dr. P returned. His colleague, who I also really like, saw me in the ER, told me “I can’t send you home, I’ll babysit you all weekend and Dr. P will see you in the Cath Lab on Monday”.

Back to the Cath Lab we went. We knew going in he was doing an intervention on at least my OM graft. And then he unexpectedly had to place two in my RCA graft. So I came out with 3 more stents.

Thats right before the age of 30 I’ve had 1 heart attack + stent placement +  1 triple vessel Bypass Surgery + 3 more stents.

So what happened? As I mentioned, we know I had the 40% stenosis in Spring 2017, due to my coronary artery disease, my propensity to over produce cholesterol due to Familial Hyperlipidemia, diet, diabetes, my history. But remember how I was vomiting 6-8x/day in September? Well,  I was no longer absorbing any of my medications so my CAD was left to its own devices, cholesterol built up and clogged off the graft.

Ready for the twist of events? Remember how everyone told me the vomiting was GI related? Well, once they placed the stents, I stopped vomiting. Now, cardiology and my PCP believe it was my heart all along. My grafts had probably occluded to a point that needed intervention when I started vomiting. The vomiting is known as an “anginal equivalent”, which basically means the heart indicates in another way its under distress. As one nurse said it, “its like in a home, when mama ain’t happy, no ones happy..same with your heart, when your heart ain’t happy, neither is the rest of your body”.

Well, you know what else got mucked up? Killing Marty, the little sh*t, tumor on my kidney. It was scheduled in February, but once the Interventional Radiologist, heard I had occluded grafts, he was not comfortable putting me under sedation until it was fixed. Once it was fixed, I had to be on the Anti-coagulant for 6 weeks before cardiology would allow me to go off of it (but remain on Aspirin) for 5 days prior to the procedure.

We are happy to report that on April 9, Marty met his match at Hopkins, at the hands of the nicest doctor I have ever known.

I was put under moderate sedation, but not before I told the techs, resident and nurses that we had named the tumor Marty/the little sh*t and that we were going to kill him that day, so as they were prepping me they were walking around saying “we are getting ready to get rid of TLS”. They were professional, caring, compassionate and put me at ease as they prepped me and the room until they were ready to start and put me under sedation.

It took about 2 hours and then I was in the Recovery area. The plan was to stay for 2 hours and then be sent home. We stayed for 8, because my heart did not handle the sedation well and I had angina.  The attending wanted to admit me for observation, but I convinced him not to, since we were staying at a hotel down the street, because we were scheduled to see my cardiologist the next day.

I was pretty uncomfortable for about 2 weeks after the procedure. It felt like someone was stepping on my side. My PCP said it was because they had to move a lot of tissue, muscles & nerves, to get to the tumor. We go back in July for a repeat scan to make sure the little sh*t has not grown and is “dead”.

So how are things today?

-Well, my cardiologist/I had a good honest conversation and he said given that I had the stents placed, was on optimal medication, the only really thing left to do to try and manage symptoms, was to lose weight and to really go after my blood sugars. My microvascular disease is made worse with diabetes. The higher sugars cause inflammation in the vessels, which causes blood flow problems through the small, already highly occluded vessels. The little vessels provide the blood to the big vessels so I have so much pain because the heart has to work really hard to get that blood from the little vessels due to the disease in them.

-Thanks to my awesome PCP, I’m happy to report that we started long acting insulin and my sugars have dropped into better range and I have seen an improvement in my chest pain/angina. Instead of living with a pretty constant/daily pressure in my chest and severe flare ups, I now have had small periods of pain that have been relieved through rest/nitro.

-With that progress and given that I had the 3 stents placed, I was sent to Cardiac Rehab. I started this past Tuesday with the initial appt which involves a mini physical and getting baseline EKGs, blood pressures, weight, heart rate, etc. Because, going to Cardiac Rehab at Hopkins was not an option due to the distance, I chose to go to a hospital about 30 minutes away, which has the area’s Heart and Vascular Institute, is our local trauma center and a lot more resources/training than the other community hospitals. Even on the first day, I saw a difference in the competency of the nurses and Exercise Physiologists. We are hopeful we will see some progress this time in Cardiac Rehab.

Mom and I have been walking almost every night with our girl Finley, so we are both helpful that us doing that, helped me prepare for Cardiac Rehab.

Thanks for all the continued prayers/messages. I had to go radio silent for a few months to process everything. My depression/anxiety returned with a vengeance in the past few months which is totally normal and almost expected after a cardiac procedure with interventions and a Cancer procedure. I’ve been working hard with my psychologist and psychiatrist and we’re making progress to the point I was ready to share this part of my story.

I just want to include the following to explain something: we kept this very quiet, telling only family and a few friends because thats what we needed. Because this journey has been so long, now 3 years going, it is emotionally exhausting to answer questions/share the story with multiple people. When you see us, please feel free to ask us “how are you?” like you would anyone, but if we don’t elaborate, please leave it at that. People have gotten their noses out of joint and have continued to press us in conversations when we haven’t been in a place to share and that is both helpful and hurtful. Love us by respecting our boundaries, continuing to pray for us and being along for the ride.

Your love, prayers, support have meant the world to us.

P.S. thank you to everyone who suggested songs for my cardiac rehab playlist, I wrote this while jamming out.