I’ve rewritten this update a few times as the past month has been one of the most frustrating and stressful times in my cardiac history for a lot of reasons, but namely because there are still a few unknowns…

How do we move forward? Where do I receive cardiac care moving forward? When do we move forward with the next intervention?

As some of you know, the last admission to Hopkins was very traumatic which ended with Hopkins Cardiology trying to argue that all of my health issues were psychological. Let me just pause her to say, this made my therapist of three years very angry and her exact response was “what the ____?”. What I didn’t share after that admission was that Hopkins accused me of not taking my medication, lying about getting sick, told me that I was just hypersensitive and tried to document that I was an uncooperative patient. All because I declined for them to retry medication changes that we have tried in the past only to have to discontinue them for various reasons (usually side-effects).  They had me meet with Pain Management and a Psychiatrist, who thankfully, strongly disagreed with Cardiology. Followup appointments with my cardiologist were tense and ended with both of us frustrated and in disagreement on how to move forward. I may have hit end on one of the calls, before we were completely done, because well I was done. Just a little aside here and a little known fact, except for those who really know me, I can be very stubborn and when I believe something, I will dig my heals in. It is a trait that I shared with my grandmother and when I’m being really stubborn my mother will call me Rose. I have been invoking my sweet grandmother’s example with doctors lately, because I am the greatest expert on my body and I believe something is off with my heart.

All the tension with cardiology, comes back to the vomiting that was the reason for my admission to Hopkins in May. First, let me just say that Cleveland Clinic Cardiology, my local interventional cardiologist, my PCP, pain management and psych are all in agreement that the vomiting is of cardiac origin. Any exertion (climbing the stairs, walking around the house, etc) causes severe nausea and/or vomiting. The doctors believe the nausea is an anginal equivalent or another way the body indicates the heart is stressed. This happened 2.5 years ago, when my bypass grafts went down for the first time, I vomited for 5 months before we convinced cardiology to look at the grafts in a Cath. They added multiple stents and the vomiting stopped immediately. This is in the back of our minds.

Hopkins cardiology is arguing that the vomiting is not cardiac in origin and that it is ‘not their problem’. But in the same sentence, they were arguing that if I missed one dose of my plavix or aspirin because it doesn’t stay down, that I had to go back inpatient. They also said that they would not place me on a cardiac unit if I did go inpatient. My PCP refused to send me in unless it was to a cardiac unit. As you can imagine, its real fun being the go between when my doctors disagree.

While the rest of my ‘home team’ agrees that not keeping every medication dose down is risky, they did not agree with Hopkins that it needed to be managed inpatient at the time. Over the past 6 weeks, we have thrown every nausea medication we could at it, pulled back doses of other medications that could possibly be causing nausea to no avail. While we have slowed it down from vomiting anything I ate, we still have not stopped the vomiting.

Every day, before I even get out of bed, I take a nausea medication, wait 30-60 minutes, eat, wait another hour, take my morning meds, take more nausea meds, try to eat in the window they have kicked in, but by 3pm everyday, the nausea is very severe and at some point during the day causes vomiting. The timeline for the nausea onset correlates to when my morning cardiac meds start to wear off and the demand on my heart is worse.

I’ve had several telemedicine appointments and even saw my PCP in her office two weeks ago so that she could do an exam, EKG and labs. My EKG didn’t look great, but pretty close to my ‘normal’. We also did a covid test just to make sure it wasn’t Covid. Good news, it was negative.

At the appt with my PCP, we had a really good conversation with her. This conversation was probably a long time coming. The reality is that Hopkins, while they have maximized my medication therapy, really does not have anything left to offer me beyond a standard Cath and I am trying to find a solution besides going back to the Cath Lab every 2-3 months for another stent. By time time I recover from one Cath, we are going back in. It is no quality of life and we aren’t fixing the problem. Getting two cardiologists to agree on the next step is not easy. Even the two cardiologists who reviewed my case at Cleveland Clinic disagreed on what the next step should be…Chronic Total Occlusion (CTO) cath or redo bypass.

When my local cardiologist got the Cleveland Clinic report and we spoke about it on June 3, he strongly disagreed with the CTO Cath. Namely, because having taken me to the Cath Lab multiple times, he believes within 6 months I would have another blockage and we would be back to square one. My PCP and I talked about this and agreed we should pursue trying to find someone to redo the bypass. She reached out to a cardiologist colleague at Medstar who gave her the name of a cardiac surgeon.

Some of you are probably asking…what about Cleveland? The reality is that Cleveland Clinic is 6 hours away and Medstar is just about an hour away so for long term care, it just makes more sense. My PCP brought up the idea of moving care to Medstar at my last appointment, but didn’t push it, giving mom and I the opportunity to  talk and think it through. With a case as complicated and unique as mine, we don’t just switch doctors willy nilly. Doctors are added and removed from my team with a lot of thought, consideration and after making sure they can be a team player. The convo with my PCP about looping in Medstar was two weeks ago…

Fast forward to last week…Tuesday night I had a severe episode of chest pain, vomiting and burping (my usual cardiac symptom when trouble is brewing…women have some weird symptoms). I have a home EKG device, Kardia 6L, so I took the EKG and emailed it to my PCP Wednesday for her to look at during our weekly telemedicine appointment that afternoon. I have seen enough of my EKGs to know that it didn’t look great. She agreed, but wanted me to repeat an EKG in her office Thursday to confirm it was accurate. Because I was not having active chest pain, the EKG Thursday looked more like the one she had taken two weeks ago.

She and I texted back and forth on Thursday, after she received the EKG from her office (it was her day off, but she was still in close communication with me to come up with a game plan). She had forwarned me that if it looked like the one from Tuesday, she was sending me to the ER.  We’ve also learned over the last 5 years, that doctors who review my EKGs but aren’t familiar with my case, tend to overreact and immediately send me to an ER, so it was just easier if she reviewed it.

After looking at the office EKG and determining I didn’t need to rush to an ER, she asked me if I had given any more thought to Medstar. Mom and I had decided that it was worth having them review my case. I reached out to Medstar Thursday around noon and by Friday afternoon, they had all my records from Hopkins, Cleveland & my local cardiologist at their office. The amount of doctors offices that I had to call to make that happen is probably a world record. I was also able to get an appointment with the interventional cardiologist at Medstar, that my PCP had reached out to during my appointment with her….

Back to where we were, after the EKG situation was settled last Thursday, I had reached out to my local cardiologists office, Dr. K, to get his notes sent to Medstar. The nurse was having a hard time finding the note where he originally suggested that we needed to consider the re-do bypass. Dr. K has over 30 years of experience as an interventional cardiologist and is very aggressive in the Cath Lab, so he does not take suggesting surgery lightly. Because the nurse couldn’t find the note and given the recent worsening of symptoms, he suggested speaking to Dr. K via telemedicine on Friday. He’s usually booked out 3 months at least, so an appointment the next day in of itself is a miracle.

This past Friday, he and I spoke for a good 20-30 minutes about the worsening of symptoms. He was concerned when I explained the very minimal level of exertion that induces severe symptoms and that it felt similar to when I’ve needed stents in the past. Such a change in symptoms requires some type of action on the part of the cardiologist, so we talked it through..do we try another medication change? Does he take me back to the cath lab immediately? Do we wait and see if symptoms improve? If he does another cath and it shows a small blockage does he stent it? If it’s a big blockage, does he touch it or pull me off the table and send me to Medstar for surgery? Does Covid complicate the timeline? Do we let Medstar do the Cath and if it indicates the next step is re-do bypass right now, we are already there with surgeons who actually do the surgery? Not every cardiac surgeon does re-do bypass procedures, so we have to keep that in mind. So many unknowns. Dr. K does not make the decision to take me back to the Cath Lab lightly, so for him to bring it up is a big deal.

We ultimately decided that I would retry a medication for chest pain, Ranexa, for a few days at the smallest dose. We had tried it 3 other times in the past 5 years, but it had to be discontinued due to a prolonged QT(c). Dr K instructed me that if it works, that I would need to come into the office this week to get a repeat EKG to recheck the QT(c) and increase the dose if it is still in normal range. Prolonged QT(c) can be very dangerous so they watch it closely, as I like to hover on the longer side of normal. He wanted to try Ranexa for two reasons: so he could say he had completely maximized medication therapy and in the hopes that Ranexa would bandaid the situation a little longer before needing a Cath. Given the continued worsening of symptoms, Dr. K and I were in agreement in the end, that while we were originally on a 3 month timeline to get established with Medstar, that my symptoms and my heart may force us to play our hand a lot sooner and probably in the next few weeks.

Also of importance was that while Hopkins was very dismissive that there could be an issue with the stents Dr. K had just placed in February, Dr. K disagreed. He said that this is the exact window of time where he would expect an issue like re-narrowing, especially in someone with a case like mine. A cath provides the surgeon with the up to the minute level of restenosis and a guide on how to move forward surgically, so no matter what we decide, surgery or just another Cath/stent, another Cath is around the corner.

This week, I will be heading into DC for an appointment with the interventional cardiologist from Medstar that my PCP had reached out to. The reality is that Dr. K is likely to retire sometime in the next couple years and that my case is beyond our local hospitals capabilities. Even if they work in tandem with my local team for now, adding someone from Medstar now so that they can become acquainted with my case is important in the long term. When the time comes to completely transition to them, it would already be  an established relationship.

Medstar offers a couple benefits: the expertise and advanced procedures of academic medical institutions and a more local option than Hopkins, while still having experts just as knowledgable of complicated cases.  Truthfully, we were connected to the Chief of Cardiology at Georgetown in the fall to review my case and he agreed that re-do bypass was an option or transplant down the road.

If we have a good experience at Medstar and they handle my case appropriately, it provides us with a local option. As you can imagine none of my team loves the fact that even on the best days on the beltway, Hopkins is at least 90 minutes away. Time is muscle in cardiology and therefore every minute counts. 90 minutes isn’t great when you are having a heart attack. Hopkins would still be a part of the team if they can play nicely in the sandbox with others. The reality is that I have a lipid disorder and I see one of the top lipid specialists in the country and am enrolled in a trial there, so they would still need to be part of my care.

Really, we don’t know how the next few weeks will play out. Will the medication work? Will I stop getting sick? When and where will we do the next Cath? Will it be another stent with the reality that we are going back in 3-6 months for another blockage? Will we have to wait for it get worse so that surgery is the next best option?

Why not just do the surgery now? The surgery is kind of like the CTO Cath in that you get the most benefit from it once the vein grafts are down again, because then you are restoring flow, rather than just creating another pathway. Its major surgery so they usually want to do it for more than one vessel. We might have to have the same approach we were going to have with Cleveland….be sick enough that another intervention is needed, but not sick enough that the blockage is to the point where it should be fixed immediately.

To sum up the current state of affairs with us girls:

• Mom is nailing it as my resident nurse, cooking up whatever sounds good to me. If you know her, then you know the kitchen is her least favorite room in the house. I’m really grateful she puts aside her lack of interest in cooking, just for me. She is also still working from home, as it looks like her company will continue to do so for the foreseeable future. I’m happy to report that we’ve survived without any roommate fights. We just sometimes go to our respective corners of the house for a little change of scenery besides each other’s faces. Kidding…maybe?
• I vomit at least once a day, am dealing with worsening chest pain and trying to figure out how we are going to move forward. I spend most of my day managing nausea/vomiting, medications and coordinating with various doctors offices. I have a few good hours in the morning and then the afternoon and evenings are the worst. I spend a lot of time reading, doing puzzles and watching every episode of Hometown on HGTV.
• The pups, Finley and Gracie, have gotten used to the fact that we are around all the time. They benefit from my ability to keep crackers down and come running at the sound of the crackers opening. They make us laugh and they keep me company. Gracie also notifies us each day at 5:15 that it is time for her dinner, and it might be our favorite part of the day. Finley continues to be perturbed that we want to use one of the blankets on the bed, which happens to be her favorite napping spot.
• COVID: We are on strict isolation except for doctor appointments. My team had ordered some non cardiac testing in the next few weeks, but have cancelled them due to the current resurge in cases of Covid-19. Once my doctor lifted the no outside food rule while the medical community learned more about how the virus spread, during the first few months, we should have never learned about UberEats, Grubhub or Instacart. We have also survived off of Walmart contact-free pickup and a few good people who have consistently reached out to pick things up for us.
• My doctors, this week, have extended our strict isolation at least until about Labor day, so I will be writing another post this week about practical ways that you can help us during this time. I hope it will also equip you to help others around you that are also under isolation, such as the immune comprised, the older population and those with underlying health conditions. As you return to/establish a new normal, don’t forget that some of us are still stuck at home.
• Basically, as per usual, things are very much left, right, up, down, now backwards, skip three times, twirl in a circle and see where you land with my health. As we know more, we will share how things are going. Please continue to pray for my doctors wisdom and our discernment of the next steps.

We are back home and unpacking from a trip to the Cleveland Clinic over the past 3 days.

After a whirlwind trip late last week up and back to Baltimore to pick up records to hand carry with us, we packed up our bags and headed up to Cleveland. The cardiologist who had been involved with my care at the Cleveland Clinic, left the clinic last Friday, so he handed me off to his colleague in interventional cardiology (the ones who do the procedural side of cardiology).

Dr. K is one of the top interventionalists at the Clinic if not in the country. He is also one of a handful (and I literally mean you can count the amount of cardiologists who do this procedure on one hand) of cardiologists who do an advanced Cardiac Cath procedure. They are extremely high risk.

The good news is he believes that I am a candidate for an advanced Cardiac Cath procedure. The bad news, not right now. Here’s why:

We know from my tests at Hopkins that my native vessels (think the arteries we are all born with) are blocked, which is why they did a Coronary Bypass 5 years ago. The severity of the blockage has progressed over the last 5 years and in the words of Dr. K, they are hanging on by a thread. Most cardiologists agree that this is most likely why I still experience a lot of pain. Dr. K would like to reopen the native vessels and stop messing with/stenting the bypass grafts.

Unfortunately, in order to reopen the native vesssels, we need one of the bypass grafts to ‘go down’ again. Basically we need the 50-60% blocked bypass graft to progress to a point that it limits flow (usually around 80%).  You can’t have blood trying to flow through two channels (the native vessels & the grafts) in the heart. Dr. K suspects that given the rate at which my disease progresses, that this will most likely happen in the next 3-6 months. At which point he could do the Cardiac Cath to reopen the native vessel.

The good news is that we have an option to move forward, versus the “we have nothing left to try” from Hopkins, because they don’t do the procedure I need to have done. The good news is that we have a plan and a renewed sense of hope, after meeting with Dr. K.

The bad news is now we are in this waiting period/holding pattern. We are basically waiting  for my disease/heart to get worse, to make it better.

What happened to re-doing the bypass? Dr. K really doesn’t feel like this would garner any real benefit. He was also looking at our long term plan. We also discussed that if we are looking at a Transplant (which many cardiologists agree will ultimately be required), then they try to limit reopening the chest multiple times. The cath to reopen the native vessels would really be a bridge to transplant, but in a long term sense.

While it’s great to have a plan for the next step, we still don’t have a solution for my pain and vomiting. It’s a lot of telemedicine appts and emailing back and forth with my doctors right now. There is a little bit of a disagreement and finger pointing amongst the various fields on how best to proceed, so it causes a lot of back and forth and slow progress forward.

My PCP and I are going to do an in person appointment early next week so that she can do a proper physical exam and some labs.  This will be the first time I will see her in person, versus our weekly telemedicine appointment, so I would ask for protection as we venture into a doctors office. She is having me come as their first appointment to limit exposure to others in the office and of course we will wear masks, but its not without risk. We are going to brainstorm some ideas on how to treat the pain and nausea after she has had the chance to do an exam.

My cardiologist and PCP are in close communication and work so diligently to try and keep things stable and moving forward with my case. Unfortunately, we have walked into a new season of my cardiac story and its a tough one. This is a tough season to be in  and most of the time I feel super strong, ready to fight and yet other times I want to tell every doctor involved in my care to buzz off. It’s not easy to have the complicated case, the “we’ve never seen a case like yours” case. Trust me, its not fun to be special. Right now, we just try to navigate these waters the best we can. We take the good days alongside the bad days and try to remember that God is faithful.

Dearest friends and family,

And we’re back! Hello All!

If we are facebook friends, you saw my prayer request earlier this week regarding some decisions my cardiologist and I had to make to try to manage low heart rate and near-syncope episodes. We still aren’t seeing much relief, but we need to give the medicine we stopped about a week to get fully out of my system. I appreciated everyones kind words and prayers! And it prompted me to bring back the blog.

My intention with the blog has always been to help others, especially young adults living with chronic illness, so we are back but with more of a focus on living with chronic illness, helping someone who lives with chronic illness, celebrating victories and asking for prayer requests rather than just sharing health updates. Due to insurance, legal, disability related issues, I was unable to share a lot of what was going on over the past year. It was a doozy of a year, but we made it through.

Since my update last May, we went back to the Cath Lab 10+ more times, had multiple interventions, had a vascular surgery, got a surgical infection and was on IV antibiotics for 6 weeks, went back to the Cath Lab two more times and had more interventions.

My case continues to baffle doctors, simply because no matter what medications we throw at it, I continue to occlude my vessels. We know its due to the two genetic conditions I have and one of the conditions we treat with 5 Lipid medications while the other condition is currently untreatable.

Over the past year, we lived simply to survive. We spent more time driving back and forth to Hopkins, in the hospital (cumulatively, I spent about 4 months in the hospital) and each admission required us to recover and try to reintegrate into daily life. Perhaps you felt we disappeared or withdrew from life, but in reality we simply were trying to get through each day, one day at at time.

With that in mind and in resurrecting the blog, I would like to kindly share a PSA. Remember you never know fully the trial that someone is walking through. We have heard some hurtful things, experienced gossip/detraction firsthand, had things shared in confidence repeated and overall been disappointed by those who we thought were our circle. Sometimes we don’t share because 1) its my story to tell. 2) we have to process what just happened 3)its very personal in nature 4) we simply don’t want to. And quite frankly, we’ve been burned. So, please accept that what we share, is what we are willing/able to share at this time.

We love and appreciate everyone that has checked in, asks us how we’re doing, invites us to dinner at the spur of the moment because they know we aren’t in the hospital, listens to us vent, takes care of our puppies, has laughed and cried with us and prayed for us. Your companionship on this journey is invaluable.

We live a life that can change at any moment. New symptoms throw us into more doctors appointments or admissions and any day can start great and feeling good, but end with at trip to the ER. Our life is unpredictable and we often have to cancel plans or just mom goes, because I don’t feel well. Our time is not our own. Take for instance in the last 3 weeks, I had 15 doctors appointments. Thats more than most people go to in a year.

Here’s what I wish people knew about our last year. It was tougher than the first 3 years. We battled a cancer curveball, we lived in and out of the hospital and my heart had doctors basically running in circles. It was frustrating, it was heartbreaking and it was physically/emotionally/spiritually draining.

But I am so proud of how Mom and I made it through. We leaned on each other in the tough moments, laughed in the comical ones, prayed through the most difficult moments and praised the Lord for the victories, both big and small. We fought through it all and we made it. We continue to fight the good fight.

Please keep the prayers coming for resolution the the heart rate, near-syncope episodes!

All that to say, welcome back!

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.

Heart month is almost over and I’ve been thinking. Life with heart disease is no joke.

When I look in the mirror every day, I see the 8 inch scar that reminds me I’m living with heart disease. And that my battle required serious intervention early in my life. It also reminds me I’m alive and medically speaking, doctors have told me that could have very easily not been the case. But I tell them, meet my God.

God and I have had a few moments these past few months. As my heart grew weary and my spirit weak. That my friends is why I’ve been so absent from the ol blog.

I’ve taken a break from the blog the past couple months for my own healing. We had a major setback with my heart in the last month that has now been fixed. For right now I’m not ready to share that part of my story. With these setbacks, come the emotional stress and my time right now has to be devoted to healing those wounds.

So for now, I’ll be signing off the blog for a little while, so that I can devote 100% of my time to my physical and mental health. I hope to return in the coming months to update you and share more of my story.

For now, if I may, I leave you buy asking for continued prayers for the following:

1. For success keeping a new heart medication down. I’m still trying to learn how to manage My gastroparesis diagnosis and we need to keep a new heart medication down or I could end up back in the hospital and in need of cardiac intervention. My Gods healing, after, getting sick 5+ times a day for 4 months, I’ve been able to keep food down for the past two weeks, which means meds stayed down. That means my body was able to absorb the meds my heart desperately needs for the past two weeks. We keep praying this continues. This is a big prayer request.

2. For the grace to work through all the mental wounds of the past and present. Multiple hospitalizations, a cancer diagnosis, continued heart problems are in themselves a trauma and my counselor and I are working through untangling the web of lies, past wounds, fears, hopes, wishes for the future.

3. For my team of doctors. That God would continue to guide them with a spirit of wisdom and counsel. That their decisions would help me not only survive but also thrive.

4. For some important appointments coming up that will shape some decisions about how we move forward in my overall care.

5. For mom and I to continue to have the grace we need to fight these battles together. She’s been a hell of a trooper these past 4 months.

I thought I’d take a break from all the medical updates to do something a little fun! Fun facts!

1. I was born in Alabama

2. I have a bad habit of leaving string cheese wrappers around the house.

3. My left ring finger is double jointed so I can make the top lay flat.

4. I had curly hair when I was young and they called me yahoo hair.

5. I have a lot of allergies and am lactose intolerant.

6. I don’t drink alcohol, because it gives me migraines.

7. My sister died when I was 7, during scoliosis surgery.

8. My dog and I are too similar: sensitive skin, she snores too, heart problems, stubborn.

9. I was baptized episcopal and credited with bringing my family back to the Catholic church.

10. I’ve always had freckles and a dimple.

11. My favorite saints are St. John of God, JPII, St. Therese of Lisieux and St. Francis de Sales.

12. I had to take a test on the entire Catechism and miss less than 7 questions to graduate with a Catechetics/Theology degree from college.

13. My middle name is Gail, after my aunt.

14. My favorite candy is Twix.

15. My favorite drink is Diet Dr. Pepper

16. I do the cooking for mom and I. She tries, but Bless her heart.

17. I just started using essential oils and they work!

18. I recently got sick multiple times a day for 8 weeks before doctors figured out what was wrong.

19. My favorite color is teal/mint green.

20. I love all things polka dot.

21. I’ve seen various counselors for the past 6 years to battle depression/anxiety.

22. I have a slight problem with amazon, thanks to amazon prime and two day shipping.

23. We root for Auburn while the rest of the family roots for Alabama. War Eagle.

24. I have a scar on my left thumb from where I sliced it on a pizza cutter in a grocery store when I was 5.

25. My mom and I have grown to best friends in my adulthood and I am grateful she was a mom during my adolescence.

26. My confirmation saint was Saint Juliana Falconeri, a less known saint who I picked after reading her story in the Arlington Herald.

27. I got a Dalmatian for my 10th birthday, thanks to my Uncle Tom.

28. I once challenged my college roommate to see how high the trash pile would get before she took it out. She never did so I lost that challenge.

29. Stopping at 29 in honor of my age. I can’t believe I’m almost 30. But I look 18.

Hope you enjoyed! Share one fun fact in the comments!

As you may have noticed my last post was very matter of fact. yep. I have kidney cancer. yep. we are hanging in there. yep. reality is settling in.

First, good news. We were able to get in to see the urologist aka “this type of cancer expert” on December 8, 2017. The feast of the Immaculate Conception. Mary’s conception full of grace and without sin. God planning ahead and preserving our Blessed Mother to carry His Son. Pretty much my favorite feast day, because 1. I’m a fan of the blessed mother and 2. It just shows God’s faithfulness.

I’ve found myself anxious to get to the appointment to talk about the treatment options to get Marty, T.L.S. out. Yep, I named my tumor. He was first named Martin by me after my cardiologist who played like Dr. House and his test recommendation found this little sucker. My mother on the other hand calls it The.Little.Shit. so a friend of ours combined it into Marty, T.L.S. Yep, he’s gotta go. It was nice of him to grow off the side of my kidney, instead of inside, but still he is not welcome.

Anyways, I was thinking the past few days about how I don’t want my thanksgiving to be filled with heart disease and cancer so what is my thanksgiving made of this year? What’s yours? do share!

T: Totally belonging to Christ. There is no way I would still be standing here without Faith that I belong to God and His plan is far greater than my understanding.

H: Hopkins. They have done more in the 14 months that we have been going there to understand my heart disease and now my kidneys than what was expected. I have a cardiologist who made a visit at 7:00pm after a full day of appointments just to check in after the cancer diagnosis was confirmed. They go above and beyond.

A: All of you. You are our prayer warriors, supporters, loved ones, friends, all of you that makes our “family”.

N: Nonnie’s memory. My grandmother fought lung cancer courageously and heroically. She lived on magnum ice cream bars when she was so sick. She always answered my Monday night phone calls with words of faith and courage, even when she felt so sick. I found myself asking what would Nonnie do, how would she fight? Like hell!

K: Kristin. My life. my story. Knowing God chose to tell the story of salvation with me in it. (AND YOU TOO).

S: Sherry. You know that lady I am lucky enough to call my mom. She some how manages to meet work deadlines, volunteer at church, snore in a recliner next to me laying in a hospital bed for days on end, pray for me, love me, laugh with me, take on doctors and watch her daughter suffer and yet still have faith. Her faith could move mountains.

G: Those crazy Grassons (and of course the johnson’s) . The goofballs I’m lucky enough to call my family. A phone call away to activate my prayer warriors (including the poor clares..My Deacon uncle does adoration for them). We know if we ask, that’d be here in a jiffy.

I: Ice cream of the coconut milk variety. Yep, thats right. Being lactose free and being able to enjoy after a long hospital stay.

V: Victory of the heart. Having this blog to share prayer requests and my thoughts/heart and having the story of the past two and a half years and being able to look back on God’s faithfulness.

I: Individuals who choose to bear Christ to others. There are days I don’t feel God’s presence, but I am always reminded by these individuals by their faith that He is here.

N: Nurses. Every nurse I have ever had. I would have never made it through all these hospital stays without the nurses who treated me like they were caring for their own family member.

G: God’s faithfulness. Even despite my doubts, joys, trials, he remains the same loving God.

We all carry much into thanksgiving. A year full of joys, sorrows, loss, the addition of a little one to the family, health, illness, friends, family, hurt, laughter, joy. We all have something. I pray whatever you carry into this Thanksgiving, that the Lord nestles you into the sacredness of His heart and feels your heart with peace.

Hello all,

I write with a bit of an update and some unexpected news.

What’s been happening the past 8 weeks:

It’s been a while since I wrote an update for the good ol’ blog. I mentioned in my last post that I had been vomiting for unknown reasons. Unfortunately, this has continued for the past 8 weeks. We tried medication changes and food changes first, which provided no relief. So we went on to imaging including an EKG, CT Scan, Abdominal ultrasound, MRI and Pet Scan.

As a last ditch effort, my cardiologist suggested a CT scan to look into the blood flow to the stomach. This test may have saved my life.

What did they find?

Kidney cancer. Much to our surprise the CT scan showed a tumor on my left kidney. We had further scans up at Hopkins this past week and it was confirmed that the tumor is in fact cancerous.

Whats the prognosis?

The urologist started the conversation with us that “this will not kill you” so as you can imagine, we are breathing a little easier.   The cancer has been contained to my kidney and possibly one spot in my chest. The doctors believe that they will remove the tumor or if necessary, the entire kidney. They will monitor the spot on my chest for now. Oncology believes that radiation and chemo are not needed at this time.

What’s next?

My case was presented to the tumor board at Hopkins on Monday. This board is made up of group of doctors across multiple specialities who collectively come up with a treatment plan, which we will follow in the next few months.

How are we doing? 

As you can imagine we are in shock and perhaps even numb to the news. Had my cardiologist not pushed for the CT scan, we would have never found the tumor and the outcome could be quite different. We are taking it day by day.

We are so grateful to be at Hopkins. The doctors have been great answering any of our questions and help us through this first week. The attending was able to put my case before a colleague who is studying this specific type of cancer so we are benefiting from the ground breaking research and practices at Hopkins.

How can you help us?

Please pray for my doctors, myself, my mom and for my heart. We need my heart to remain at its baseline so that we can move forward with the surgery.

Please also pray that they will not have to remove the whole kidney. This would cause my other kidney to work harder which would be a challenge in managing my heart failure and fluid retention.

Please allow us to guide the conversation. Some days we will want someone to listen, while other days we will want to talk about anything but the cancer.

Thank you for all your love and support, we really eternally grateful.

Love, Kristin