As of 12:01 Friday morning, the team can start accepting calls for a new heart. Honestly, It’s an odd place to be..to know that out of someones great loss will come new life. There isn’t really a word to describe what I am feeling, other than grateful and in prayerful anticipation. A few people have asked some questions so I thought I would do tonights update in a longer blog post…

How does it work? When a donor’s heart becomes available the Cardiology transplant team will be called along with the cardiothoracic surgeon. The can say yes or no, based upon a variety of factors and should they say yes a Hopkins Cardiothoracic surgeon will go get the heart. The team then transports the heart back to Hopkins and final preparations for me for surgery begin (discontinuing blood thinners, fasting, final labs, etc. The quickest we could go to the OR is 4 hours (after blood thinners are stopped) or it can take several hours, even to the next day to go to the OR. At any time the team decides the heart is not a good fit, up until the point my heart is explanted, the team can decline the transplant. Afterwards, I will be moved to the Cardiovascular Surgical ICU and intubated and sedated for a few days. At the proper time, the team will start to wean sedation and meds. Then the hard work of recovery begins. They anticipate that I will be in the hospital for an additional 2-3 weeks after transplant.

Because this is my second time having a sternotomy, there is an increased risk of bleeding and likely scar tissue that the surgeon will have to work around. Please specifically pray for my safety and for the hands and wisdom of the surgeon.

What Happened? (the short version)

After the heart attacks in February and March, my heart and body was never the same. Even I knew I didn’t feel well but didn’t realize how sick I was. After the heart attack in July, my heart began to fail and once we arrived at Hopkins, the team saw just how sick my heart and body was. I was retaining fluid due to lack of blood flow perfusing to the kidneys and I was getting so sick, because of lack of blood flow to the gut. The longer I have been on the balloon pump, the team is seeing greater cardiac output and my gut and kidney are responding favorably and working properly. The nurses literally cheer for every #1/#2, because it means the body is getting the blood supply it needs and is able to function. Once the team realized how sick I was, the discussion turned from chest pain management to a very serious concern that if I was to go home, something catastrophic would happen.

My primary cardiologist was truly amazed and even commented to the team when he came by after the balloon pump was put in, that he has not seen me feel this good in years. While not an official vote on the transplant committee, his input was important to me, as he has walked through every twist and turn my case has taken, and our discussion that this was the next right step, ultimately helped me to accept transplant as a medical option. The teams have all commented that my case is extremely rare but they want to see me have the opportunity to not only survive but thrive, thus the transplant. The official diagnosis/criteria for transplant (ischemic cardiomypathy).

FAQs?

Are they accepted covid+ Hearts? No.

Can I receive a man or womans heart? Yes.

How long will we wait? Unknown, but the team does not anticipate very long.

How long is recovery? 2-3 weeks inpatient. Followed by close followups, right heart caths, labs, which start weekly then eventually get spaced out. Sternal Precautions for 3 months minimum.

Am I scared? We both have perfect peace about this and truthfully it is only because of the grace of God.

Am I nervous? Yes, but I also trust that God is with us.

Will it be hard? Probably one of the hardest things I will ever do in my life.

How do I feel about it? I’ve felt every emotion over the last two weeks and I have grieved the life that I thought I would have had at 32. But I also see the work of God in the past few months and weeks looking back.

Will this new heart have as many blockages? The answer is maybe yes, but hopefully no. They have already spoken to my primary cardiologist (i.e. Lipid specialist), about the post op regimen I will be on to protect the new heart. The hope is that with better plumbing (arteries), that we will not have the same issue.

How can you support us?

1. Prayers. Hands down the best.
2. There are several food restrictions due to the transplant, so we will be unable to accept any meals. However, gift cards to places like target, walmart, giant, instacart or amazon would be of tremendous help.
3. Please do not send gifts, flowers, etc to the hospital. Due to Covid precautions and ICU settings, they are unable to be placed in the room and it creates more work for the nurses.
4. Please check in and send messages, just know that it may not be responded to.
5. Continue to follow along & pray with and for us.

FYI on updates:

Once the team says yes, Mom obviously gets the first call from me. Then we will be letting family know and then eventually friends. I will likely post an update on facebook prior to surgery and then afterwards, Mom will be making the update on my facebook page until I am awake and able to do so.

Thank you for supporting, loving and praying for us. We are truly grateful for you standing with us in this season with prayerful anticipation.

Love, K.

Well friends, I am back in the hospital. Mom dropped me off at the front door of Hopkins on Friday, after a telemedicine appointment with my cardiologist, Dr. M. He felt like I needed to be admitted…why? Well, we have to back up a few weeks.

After the last heart attack in mid July, I noticed I was retaining a lot of fluid. An echo was done when the symptoms started, which confirmed a mild loss of function in my heart. The fluid retention symptoms continued so in mid August, my cardiologist decided to put me back on a diuretic daily, which turned into the great fluid balance race…too much diuretics and I was becoming dehydrated, too little diuretic and I was retaining several pounds of fluid in a few days. I was doing telemedicine appts every 1-3 days, just trying to find the right dosing and medication to help with fluid retention.

Around August 23/24th, we had to decrease the diuretic from my normal dose, to give my kidneys a break, but it caused me to gained 5 pounds in two days. I called it into my cardiologist, who referred me to his colleagues in the Heart Failure Bridge Clinic at Hopkins, where I was seen by a NP. Dr. M wanted me to be evaluated in person to determine if we could manage symptoms in the outpatient setting or if we needed to admit me into the Hospital. At that appointment they decided to try a few more medications/adjustments and have close followup via telemedicine. Unfortunately, we just couldn’t find the right balance, so I was scheduled on 8/31, Monday, with one of the physicians in the Bridge Clinic to discuss more advanced therapies. Yet again, we tried one last medication adjustment.

Frustratingly so, over the past two weeks, along with the fluid issue my angina/chest pain has been ramping up and so was my nausea. I had a followup telemedince appt this past Wednesday, with my PCP and she felt we were approaching the line for needing to be admitted. Why? I send her a weekly symptom, BP, weight, etc log and she wasn’t loving what she was seeing. We agreed to see if the new medication that the Heart Failure Bridge Clinic doctor had just started, two days prior would provide any benefit. But I also had to agree to go to the ER if my symptoms changed “not one inch, one centimeter, Kristin”.

Friday morning, I was walking the dogs when I had severe chest pain and nausea. I came home, sat down for a few minutes, ate breakfast and took my morning meds, only to get sick about 15 minutes later. It was also 10 minutes before I was supposed to get on zoom with my Hopkins cardiologist, so I waited until our appt to see what he thought. I knew when he signed on, he would be very concerned and be sending me to the ED in for a cardiac workup. His rule is if I can’t keep my medications down, it is an automatic admission to the hospital. So here we are back on the PCCU.

Why such a change? While we originally thought the damage to the heart was minimal after the heart attack in July, it is worse than we thought. My heart has stiffened, impacting its ability to relax and causing me to go into heart failure.

I have what is known as Heart Failure with Preserved Ejection Fraction, also known as HFpEF. Of course, I have the medical zebra diagnosis of HFpEF. It is the less common diagnosis to its cousin, Heart Failure with Reduced Ejection Fraction, which is what most people are familiar with: leg swelling, shortness of breath, fatigue, etc.

They believe my HFpEF has been getting progressively worse over the last year and the last MI helped make it abundantly clear over the last 6 weeks, how sick my little heart is. The way HFpEF was described to me was that the vessels aren’t able to engage because the heart is stiff and the heart isn’t relaxing all the way, which causes fluid to accumulate almost like a stagnant pond. The heart then cant meet the demand to send the body oxygen rich blood, which causes symptoms…How does it present? Nausea, vomiting, fatigue, chest pain, shortness of breath….The cardiologist from the HFpEF clinic believes my symptoms back in may were also HFpEF. She was pretty frustrated to learn this had all been going on since my last admission in May at Hopkins.

Over the past month and specifically this past week, my case was presented to a multi-disciplinary team of Hopkins doctors and care providers to determine how we can best move forward. When I am ready to share what that next step will be, I will. For now, the most I am ready to share is that part of the reason for admitting me to the hospital, was also so that an extensive amount of testing can be done. That way doctors can move forward with what they believe is the right next step. Given the complexity of it, Hopkins is the best choice.

For this admission, I am assigned to the Heart Failure team instead of the Gen Cards team on the unit. This team has been so diligent about managing symptoms and getting all of the necessary testing scheduled. I have to say, this admission has been so much less stressful due their willingness to reach out to/coordinate and consult with my doctors up here and following their guidance. They have also decided that on Wednesday, I will be going back to the Cath Lab for a Right Heart Cath. So I will be here until at least Wednesday and a bunch of additional testing will be completed over the next few days.

Mom and I text back and forth and facetime to check in and I will do my best to keep you guys posted here on the blog. I am on a lot of medications and frequent vital checks so sleep is very interrupted and thus napping is a big priority over here. With that in mind, I would ask you to respect the boundary of not texting, emailing or calling unless you have heard from me first. Mom doesn’t even check in until she knows I am awake and I text first.

Thank you for following along with us.

Hello All.

The last time I wrote was from the hospital in the midst of having my 6th Heart Attack. The venous bypass graft that fed the whole backside of my heart, was 99% occluded. Another stent was placed, #13. We all hope that this holds for a little bit of time, as we  try to figure out our next steps.

Truth be told, there isn’t a whole lot to update on because cardiology cannot agree on how to move forward. Should we start Apheresis? Should they reopen the native vessels with a Chronic Total Occlusion (CTO) Cath or to re-do my bypass with Arterial grafts? Literally, multiple cardiologists were involved with my case during the last admission and each time one was at the bedside, they all had a different opinion.

The really frustrating part is that the cardiologists are not helping to find someone to do a CTO Cath or re-do bypass. While inpatient, they stressed that I needed apheresis as soon as possible, but I had to spend the week during my recovery, doing the searching to find a location and doctor willing to review my case. Even more frustrating is that I’ve reached out to various cardiologists at both big academic centers and smaller local hospitals to get them to agree to take on my case, but they are refusing to take it on.

In reality, the last Cath bought us some time before the next occlusion (the docs expect at max 3 months) to find someone to take on my case to come up with a solution. Since the beginning of 2020, I have been begging doctors to come up with a plan that would prevent me from having to keep going back to the Cath Lab every 3 months to fix the same problem. So this last procedure, while it had to be done, really just reset the same clock and repeated the same pattern we have been on. Thus, I am frustrated that my symptoms were ignored for 5 months which ultimately led to another heart attack and we just did the same thing we have been doing.

In regards to my recovery, we did a heart ultrasound last week that indicated that I lost about 5% function of my heart. While it could recover over time, doctors are not super hopeful. We have also been dealing with a lot of fluid retention issues that started about two weeks before the last heart attack and has continued. We haven’t quite figured out the cause yet, besides my heart, so thats the current challenge. I also sprained my big toe, which has been another fun thing to deal with. While I would love to say I handled that with grace, profanity escaped my lips.

How am I doing? Right now, I am experiencing a lot of frustration, anger, grief and in a sense burn-out. Burnt out on continuously having to argue with doctors, undergo procedures, deal with the physical and mental trauma of another heart attack and the constant management of chronic illness. While I am well prepared (thanks to a lot of hard work with my therapist), to walk through this setback again and the fact that I have almost perfected how to handle having a heart attack, it does not mean that this season is easy. Its like the 5 stages of grief and sometimes within a day, I walk through all 5 while other days, none.

Add on top of that, my daily wrestling match with God, screaming where the _____ are you? and its a challenging season. I want to believe that God is there and a partner in this battle. Knowing myself and how I work to get there I know in my heart I have to continue to wrestle my way through this with Him.

With that in mind, I have decided to take a hiatus from social media. Any updates will come through the blog or me personally. Why a hiatus? Seeing everyone’s highlight reel, people doing things that I don’t agree with during this pandemic, the arguments about social distancing, face masks (wear one!), school, etc, just is not helpful to my mental health. So I chose to silence the noise. The time and apps that I spent wasting time and scrolling through have been replaced with prayer and scripture apps. Art supplies came back out from the closet to give myself a creative outlet. Instead of starting my morning with a scroll through social media, I meet God in the scriptures, get outside with the pups and settle into a new rhythm.

Listen, healing may not come in the full restoration of my heart as I once hoped and prayed for and in reality I don’t know what healing means from here on out. One thing, I do know, is healing will continue to come through fighting each battle one day at a time. Right now, my prayer is to find peace in this season of unknown and to trust that God is perfecting the right next step.

I cannot believe I am writing this:

I’ve had another Heart Attack. Its my 6th one since 2015 and #3 of this year alone.

This morning I was transferred from Reston Hospital to Fairfax Hospital at 4:00 am, in case we needed to get to the cath lab quickly today. When I arrived they got me hooked up to the monitor,  labs started and did an EKG. The labs this morning showed an elevated troponin (heart enzyme that indicates the level of distress/heart attack) and the labs are still climbing. They will continue to trend the troponins until they stop rising.

Given this change, my local cardiologist, Dr. K , as well as the team on duty this week, spent most of the morning in a conference discussing my case and decided that we need to get the Cath done tomorrow. Dr. K is not doing procedures tomorrow, so his colleague Dr. H, will be doing the procedure. Once Dr. H sees what is going on/where the blockages are, he will confer with Dr. K on his findings in the lab so that it can be a collective decision on how to move forward, stent or surgery? Literally no intervention will be done without conferring with Dr. K.

This my friends, was like a punch to the gut. When they told me about the elevated troponin labs, my only response was “I am so over my heart”. I am beyond frustrated and to be quite honest, very angry at Hopkins and my cardiologist up there. Back in May when all this started, they would not listen and instead of intervening two months ago when all of this started,  it progressed to the point that I had another heart attack. Im just going to need the Lord to control my tongue, the next time I speak to Hopkins or to a doctor who won’t listen. And let’s be real, He may need to hold Mama Bear back from some of these doctors,

The local team is trying to appropriately react and treat the  heart attack. But they also are already working on trying to find out how quickly we can get tied in with the apheresis clinic I mentioned yesterday, prior to discharge. That way whatever is treated tomorrow whether with a stent or left to be surgically intervened on,  could have a greater chance of not re-occluding. We will know tomorrow if we will place another stent or be sent for surgery.

The team’s goal today is to keep me as comfortable as possible until we can get to the Cath Lab. I am on oxygen, multiple drips and pain and nausea meds as needed. Just going to the bathroom sets off extreme pain, so I am limited to a bed pan or a bedside commode, nothing I thought I’d deal with at the age of 32. I have been blessed with a team of nurses today who have laughed with me, shared in my disappointment at another heart attack, made sure all our questions are answered and just made sure I am well cared for. We’ve gone through 5 IVs in the last 3 days and we finally got a midline placed this evening so that meds can be given without issue. We are prepped and ready for the Cath Lab tomorrow. Thankfully Mom is allowed to come for a longer period tomorrow to help post-procedure with my requests for ice, water, morale boosting, etc.

Just a little housekeeping note: I appreciate everyone’s love and support and following along with us. However, I am going to ask a favor over the next few days. Although I am eternally grateful for the care and love behind the texts and emails, unless I reach out to you first, I would kindly ask that you do not call or text. Messages on facebook or on the blog are welcome and appreciated. Having one spot to respond to is a lot less stressful than trying to remember who you did/didn’t respond to.

Please keep in mind, I have not had more than an hour or two of sleep in a row since Thursday night. Nor probably has my mother who has been awake with worry for her girl. I dont want this to come across as rude, but we need to be honest. Right now, she & I simply do not have the bandwidth to respond to messages and lets just be honest your girl here gets a little cranky when messages or calls come through right as I’m dozing off. Mom and I have to devote our energy to keeping these doctors in check, working with the nurses to try to stabilize things and leaning on each other to support each other through yet another setback.  We would ask that you keep in mind, we haven’t really slept, I feel like crap and our energy has to go towards managing this admission, the procedure and the recovery afterward.

As always please keep us close in prayer. As much turmoil and pain this admission has been filled with, there is also a peace about it, knowing the Lord is directing the steps. Am I disappointed that this is a part of the story he has written for my life? Sure. But I know He is near and is the divine physician and healer.

KG

.

 

 

First, in case you missed it on facebook, my Covid test was negative. yay!!! Mom was able to spend the afternoon with me. It was so good that Mom could be here today after spending all day yesterday in isolation until my covid test resulted.

The past 24 hours have been very tough. Saturday night into Sunday was a very long night with lots of pain and vomiting. Cardiology and the hospitalist have been working together to try to get a regimen that works to control the pain and nausea. We just adjusted the dose of both pain and nausea meds this afternoon, in the hopes that we can built some up in my system and get me some relief until we get to the Cath Lab.

Speaking of the cath lab, we are still awaiting a transfer to Fairfax. We aren’t sure what day I will be going in for the procedure. It could be as early as Monday or as late as Friday. There are some details that have to be worked out that are hard to iron out over a weekend in a hospital.

The cardiologist who was on today was also trying to lay some groundwork for apheresis, a blood filtering process that removes the Lipoprotein(a) particle that they believe is the cause of my recurrent issues. It is only done at a few locations but he was hoping that if he could get the paperwork/notes written in my chart that we could get that started immediately after this Cath. In theory, apheresis would remove the particle LP(a) that is my problem and thereby greatly reduce the number of blockages (hopefully). This would be a short term solution until the trial that is about to start for an LP(a) drug, makes its way through the trial process and onto the market.

Thankfully, I have had great nurses this whole admission, who have advocated for me, kept messaging doctors until we got a response and checking with pharmacy on any medication questions. They have also gone above and beyond, bringing me a homemade blanket from the donation closet, printed out crosswords and word searches for me and taken the time to chat with me for a few minutes each time they came in.

The short and sweet version is that we are having a really hard time controlling pain, nausea and vomiting and I feel pretty crappy to be quite honest. Just to put things in perspective..just walking from the bed to the bathroom which is less than 50 feet away, causes such severe pain that I either want to vomit or do.  Thats where we are at. This isn’t another ‘oh Kristin has chest pain again admission”, this is like the wheels fell off the car and we are taking it back into the shop again for a reboot kind of admission.

Please specifically pray for the following:

• For the Cath Lab procedure to work out how/when its supposed to according to Gods Plan
• For the accepting team at Fairfax to work with me for pain/nausea control. I have had horrible experiences with the hospitalist team and this is a huge stressor for me.
• For the pain and nausea to get under control tonight so that I can get some good sleep.
• For all my doctors involved with my care.
• In gratitude that the team at Reston has been respectful of my case and its complexities and worked with me to continue to come up with a solution that works.

 

Well friends, things changed within just hours of my update on the blog yesterday. Unfortunately, around 4pm on Friday we had to call EMS to be taken to the local hospital, due to my pesky heart.

I have been admitted to Reston Hospital, awaiting a transfer to Fairfax Hospital with the plan to undergo a Cardiac Cath with my local cardiologist this week. The team does not feel comfortable sending me home and allowing me to wait 10 days until the scheduled Cardiac Cath on the 29th, given the worsening and progression of my symptoms.

Given the complexity of the case they would like the Cath to be done at Fairfax where more advanced technology & interventions are available. Given that this Cath will also help direct a next surgical step, we are all in agreement that it would be best if it is done by my cardiologist who is familiar with my anatomy and complex case, who does procedures at Fairfax.

I am currently on isolation as a covid rule out. While not highly suspected, they have to proceed with an abundance of caution. Given chest pain and a fever one time they did vitals in the ER, I am on contact precautions and we are awaiting for the swab to result. Because they are trying to limit exposure and preserve PPE until it results, the nurses call before entering my room to determine what I need, everyone is gowned up and the hospitalist examined me, while the cardiologist and I did a phone conversation.

Thankfully, the cardiologist on call this weekend with Virginia Heart is familiar with my case so he has been advocating for me with the hospitalist on the course of care and it appears that everyone is working together. We are increasing the pain meds and adding sublingual nitroglycerin this afternoon. If that doesn’t get things back under control, he will move me to a higher level of care unit so that I can be placed on a nitroglycerin drip, until we get to Fairfax. He is asking them to be very aggressive in keeping my angina under control until we can get to the Cath Lab, so it is really good to have someone advocating for me.

As soon as my Covid test results come back (hopefully negative!!) then mom is allowed to come visit for a few hours each day. For now we facetime and text.

Today marks the one year anniversary of my STEMI (3rd Heart Attack), the big one of heart attacks if you are going to have one. It is not lost on mom or me that it is a gift and a blessing to still be here. We pray that the Lord would give these doctors every grace and ounce of wisdom they need to move forward.

They have prepared me that this may be a longer admission as they want to first know whats going on with my heart and second bring in GI if needed to ensure we have the vomiting under control, so I can keep all of my cardiac meds down. In the words of the cardiologist this morning, its a two-fold admission, find out whats going on and stabilize things.

Thanks for all the love, support and prayers.

KG

 

Hey Friends,

After a few telemedicine appointments this week, my local cardiologist has decided that it is time to go back to the Cath Lab, so we have one scheduled for July 29th at Inova. Why?

• The new medication, Ranexa, that we had been using to chest pain for had to be come off this week. Unfortunately, the rhythm change we had been watching for each week with an EKG, showed up on this week’s EKG.
• The plan all along when we started Ranexa, at the end of June, was that we were just prolonging a Cath as long as possible. We were all in agreement that if symptoms continued to worsen or we had to pull off Ranexa, we would go back to the Cath lab.
• Even more frustrating the vomiting returned Sunday night, which indicates to my local cardiologist that a Cath is clinically indicated, as it is how I have presented in the past. GI symptoms are also very common when the vessel we keep having problems with so my doctor suspects he will find something.
• I am also in mild heart failure at the moment (gaining 7 lbs of fluid in one week), after not having an issue with that in over 2 years, so he will also be checking on what is going on in the right side of the heart as well.

Why Inova?

• Truthfully, I am not thrilled about it. However, my PCP and my local cardiologist and I are all in agreement that we cannot consider more aggressive surgical options (like re-do bypass), without a new Cath.
• Dr. K is pretty confident he will find something in my ‘problem’ vessel due to what he has seen previously in Caths, the rate at which I occlude and my symptoms. He also disagrees with Hopkins’ assessment with the CTA during the last admission. He explained because I have so many stents, it could cause the imaging to reflect off the stents and miss the plaque buildup.
• Medstar reviewed my case a few weeks ago but declined to re-do the bypass off the last cath films. However the doctor told me to resend them as soon as we have a new Cath, as they do believe it could be an appropriate next step.
• Dr. K is in agreement about considering a surgical next step if indicated, so he has agreed to work towards that end. Namely, he will be aggressive in the Cath lab if he can be, but not too aggressive to prevent a surgical intervention and put us back in this same spot in 3-6 months.
• We are all in agreement that if he finds a small blockage he will reopen it and place a stent. He suspects he will find a large repeat occlusion within previously placed stents. To reopen and place another stent within a stent, with my history is just not favorable as it is highly likely to re-block. If it is a large blockage, it makes me a candidate for a re-do bypass.

What about Hopkins?

• As of my telemedicine appointment today, they are still arguing that it is psych/anxiety induced pain and that the vomiting is strictly GI. However, they are the only ones to continue to believe so. They are pushing for a Gastric emptying study.
• We disagree with them very strongly, so while we thank them for their opinion, all medical opinions are exactly that: opinions. Having 4 other opinions saying its Cardiac, makes us feel strongly that a Cath is a better solution so that we can talk about a more long term treatment option.

What next?

• Cath Lab on the 29th
• With that data Dr. K will make a game time decision in the lab on whether to intervene and place a stent or pull me off the table for surgical intervention based upon what he sees.
• With that information, we will reach out to the medical institutions that offer re-do bypass to determine who will do the surgery, if its clinically indicated at this time.

What can we pray for?

• Diuretics to continue to work to get the extra fluid off
• All pre-op labs to look good
• Negative Covid Test (pre-op covid testing is required for procedure)
• For clear answers in the Cath and for wisdom for Dr. K
• We are trying a different premedication regimen for my contrast allergy, due to breakthrough reactions the last few times, so that we would have no reaction with this new regimen
• That things remain stable, until the Cath on the 29th.

Thanks!

KG

 

This week has been very up and down.

PHYSICALLY:

Sadly, and increasingly frustrating, the vomiting returned Sunday night. We thought it was a fluke, but it returned Monday as well. I also had a lot of chest pain Monday and quite frankly, 5 minutes before we were jumping on an online small group, I was taking nitroglycerin and we were deciding do we stay put for our small group or do we need to go to a hospital? Thankfully, things calmed down after the nitroglycerin.

I am also retaining fluid, which has caused me to vomit in the past, so we are hoping a dose of lasix today (and 9,000 trips to the bathroom later), will help get some fluid off and get things back on track. I have a telemedicine appt with my PCP Wednesday to check in and go over things and then an appointment with Hopkins Cardiology on Friday. As we try to continue to find what the next steps should be we are maintaining some connection with Hopkins. I ask that you would pray for these appointments.

Side note: we met with the cardiologist at Medstar two weeks ago and the appointment was a dud. He was not comfortable with my case. Let’s just say the (insert sarcasm here) highlights of the appointment were his comments that “not many cardiologists are going to touch your case, you are going to just have to learn to live with chest pain and heres the names of who I’d sent you to”. It just wasn’t a good fit so we are back to trying to figure out where our next steps should take us.

MENTALLY: 

The last admission to Hopkins and then vomiting for 6 weeks straight was exhausting, frustrating, stressful and left me feeling very broken physically. My therapist is very good at meeting me where I am at and then speaking truth in ways that both challenge my thinking and guide me out of the thought patterns. We have worked together for the last 3 years (pretty much weekly) so we have established a honesty that works well for us.

Last week, I started the session with the session with how pissed I was about feeling like crap and over my broken heart, my broken body, my broken stomach. She let me go there and then looked me straight thru that zoom camera lense with a look that said “are you done now?” and said, “Girl, you are a hot piece, your heart may suck at times, but you are so much more than that”. Those 60 minutes snapped me out of my headspace and back into truth. Because we are both Christians and I have given permission for her to bring faith up, we often approach our sessions with both biblical truth and proven psychological tools/processes. While faith can be a tool to cope with it, no amount of prayer will pray away my depression and anxiety, trauma or PTSD. We have got to stop the shame game within the Church on those with mental illness.

SPIRITUALLY:

Part of my therapy ‘homework’ has been to identify ways I survive (daily things I have to do, meds, insulin, appts, etc) and ways I can thrive (dream a little). My therapist suggested taking it to prayer….

Let’s just say it has been sort of like a wrestling match with God. Ever have those moments where you feel pinned or weighed down by a situation in your life or with loved ones, your community or the world? I’ve been wrestling with God lately, to please lift just a little bit of the weight of illness so that I can thrive….I can dream a little. I want to write a book about my story and so thats my dream. What if I dreamed a little and started now? When I finally settle down and let him speak a little, I hear him to tell my story, but tell the story from a place of victory. So each week or so, after spending time in prayer, I’ll share a part of my story that hopefully one day will be a book. Some stories you may have heard before and then there will be others that we have never shared before.

PRAISE: The moments that made me laugh this week: Gracie rolling off my bed. Mom accidentally leaving Finley in the garage (don’t worry I found her 5 minutes later..she didn’t realize she followed her out there to grab something).

PRAYER: For my appointments this week and for wisdom to make the right decisions.

THIS WEEK: 

• What we are up to: doing a food/giftcard drive for local charities. Check out the Post called Neighbors Helping Neighbors for more info.
• Currently Reading: Untamed by Glennon Doyle and Enter Wild by Carlos Whitaker
• Just Finished Reading: Kill the Spider by Carlos Whitaker
• Up Next: Quiet by Susan Cain
• Favorite Recipe of the Week: Grilled Chicken with Cucumber Dill Dip
• Best Amazon purchases this week:
  • Rug Cleaner (perfect for pet stains) 
  • Facial Hair Remover & Eyebrow Trimmer
  • Best Insulated Cup by Simple Modern
• Favorite Way to do our nails during pandemic: Dazzle Dry

 

Hello Friends,

Mom and I feel called to stand in the gap with our brothers and sisters in our local community that are in need. Mom & I would like to invite you to join us on a food/gift card drive to help those in our local community who would benefit from your generosity.

What donations are needed?
-non perishables (easy mac, rice a roni, etc)
-Bagged Items such as rice, beans, etc, pasta (bagged beans have been preferred)
-Pasta/Pasta Sauce (Plastic Jars preferred)
-Children’s individually wrapped snacks
-Cereal
-Diapers (all sizes, but 3 & 4 are of greater need)
-Diaper Wipes
-Feminine Products

Lester Holt signs off each of his broadcasts since the pandemic started with the words, “take care of yourselves and each other” to which I always respond to the TV, “you got it, Lester”. I thought it was the perfect way to share some ways we can help each other through this time.

The isolation that we have all experienced due to the pandemic is not something new to us girls. We have experienced it in different times, intensities and for different durations of time since all of my heart issues started in 2015. Through some trial and error, we’ve learned to manage it to the best of our abilities with strength, resilience and faith that has gotten us through it. But that does not mean it has not come with hurt, heartbreak, frustration, anger and even grief.

We have been hurt as we watched friends and family slip away as they stopped inviting us. We’ve been heartbroken to experience that those who we thought were “our people” not be our people, who spread gossip, lies and just didn’t show up. We’ve been frustrated when we asked for help or backup for Mom after I’ve had yet another procedure, for people to just say no because they had ‘better’ things planned. We have been angry when people forgot that it is a privilege, not a right to accompany us through this and said hurtful things when we didn’t share pieces of the story with everyone. Lastly, we have grieved as we watched our Church community who was such a source of strength for us in another time in our lives, become a place of hurt. We are all grieving in some way what “should have been” throughout this pandemic.

So how do you help us walk through this continued health challenges or support us through this pandemic? Below, I share ways that we’ve learned have helped us feel supported, as well as some ways we’ve learned to cope.

1. First and foremost, prayer.
2. Let us know you are thinking of us. Send us funny cards. Send us a text message. Send a gift card. If you are forgetful, set a reminder on your phone or add it to your google calendar. It’s how I remember prayer intentions or to remember to reach out to people who I am thinking about. Set up a google calendar and make one of them, “prayer” and set reminders for specific intentions.
3. Re: #2. Remember that while we would love to respond to every text and acknowledge every card, our energy has to be reserved for the big stuff (appts, health issues, etc). It’s not that we don’t love you or appreciate it, we simply don’t have the bandwidth some days.
4. Please be mindful that we are our own people. While we are a pretty awesome duo, we are each our own person. Check in on my rockstar Mom separate from checking in on me. Ask her how she’s doing, not just how I’m doing.
5. Re: #4. Be courteous of what time you reach out to us, I set my phone to go on do not disturb from 10pm-11am. Each day we deal with a variety of health items, so the reality is that by 8 p.m. we are starting to settle into our evening routine and by 10pm, its basically quiet time around here. Getting appropriate rest is so important for my health and keep in mind that sometimes we keep weird hours. When I was getting sick, Mom would be scrambling egg whites at midnight because thats when the nausea meds had kicked in, so we’d sleep in in the morning. Don’t be afraid to text/call us, but as a general rule of thumb, if you would’t call or text your grandparents at that hour (unless it was an emergency), put down the phone.
6. Take an interest and connect with us in what we share. My illness is just a part of who I am/we are. Yes, its a large piece, but just a piece. My girl Claire is on a mission to pick me out some succulents, because its something we realized we both liked and a small way she could love and support me. I think if we truly took the time to pay attention to what people mention around us, we’d be able to connect with them in small/big ways. Start a note in your phone and add to it. Sherry, loves to read and I saw that new book at costco, I’ll leave it on her porch. Kristin loves anything polka dots and I saw that cute headband. Little thinks like that make us feel seen. Nothing turns a rough week or a crappy day around like when people surprise you with a porch drop off of our favorite things. Unless Mom is on a work call or I’m on a telemedicine appointment, we might even be able to do a wave or a shout from the window. We are all starving for connection right now, so find little ways to connect with those around you.
7. Invite us to join you during this pandemic. Covid isn’t going anywhere. With that in mind, my medical team has asked to remain isolated, even more so now that some restrictions have been lifted. We are not ‘cleared’ to even do socially distant gatherings, we can’t sit 6 feet away from you with a mask on and join you for coffee. But with a little planning and forethought, we’d sure love to share dinner or a coffee with you. What if we each grabbed our dinner one night and joined each other on zoom? Could we met via zoom for a coffee date? If you’d invite us out to dinner, invite us to ‘join you for dinner’.
8. Change your language. Our friend Amy, very early on in the pandemic, texted us “we are going to harris teeter, what can I pick up for you?” and she consistently has done it. Others had offered, ‘let us know if you need anything’, but the way Amy phrased it, empowered us and took the burden off of us to say “we need something”. Be honest: how willing are you to ask others for things? Amy’s always faithful text and garage drop off has made us feel seen, feel loved and feel wanted. We wont ask you to grab a cart load, but if you shop at giant and can grab our favorite turkey bacon or you shop at harris teeter and can grab our favorite yogurt, we’d love for the next time you go, to text us and say “hey, Im hitting Giant, what can I grab you?”. Next time you make your grocery list, at the bottom, one person you can reach out to offer to grab something for. Maybe its us, maybe its your single/widowed neighbor, maybe its your elderly friend or maybe it’s someone with a chronic health condition. You’ll know who that person in your life who needs a little help/extra love this week. We will gladly pay for any/all groceries picked up.
9. Show up. Everyone shows up at the beginning of a crisis, but who is there two months out, 3 months out, 6 months, 1 year, 5 years later.  The number is small. We don’t mean physically show up (because we won’t let you in), but show up.
10. In the words of my mother today, “Don’t be stupid”. You screwed up and stopped reaching out? Okay, name it, claim it and apologize.  You invited our whole family or group of friends and didn’t invite us, because you ‘figured we’d say no’, say you are sorry and don’t do it again. We know we’ve failed at times. Forgot to send that gift card to a family member going through cancer treatments when we intended to? Yep, we did that. So when we remembered we made it a non-negotiable on the to-do list for this week. It was important that they feel seen.
11. Don’t make decisions for us. Yes, we can’t go out right now, but invite us anyways. You are planning a trip, day trip, dinner, bible study, coffee meetup, invite us anyways. Don’t stop inviting us just because 9 times out of the 10 we said no or had to cancel last minute. That 10th time we might have said yes, if someone would have asked. And let me just add a little aside here. Are you a couple that was friends and did things with both my parents? When’s the last time you asked my mom to join you? It’s more awkward and hurtful to not be invited at all than to be ‘the third wheel’. It if it is awkward, then the worst you lived through was an awkward dinner while the other person had someone to converse with at dinner. Remember the single/widowed people in your life. Don’t make decisions for them. Okay, ending rant here. It just really saddens me what we’ve weathered the last 10 years and I have watched other widows experience.
12. Think Practically. Do you usually ask the man in your life to pick up the next case of water at Giant, because it’s heavy to lift (yes, I know women are capable). Umm, the cardiac patient shouldn’t be lifting it and neither should her mother, so offer to help with those kinds of things. Both my mother and my doctors would appreciate it.
13. Laugh with us. Cry with us. Pray with us. In the end, just don’t leave us. You each have your own gifts and ways you bring light and joy to the world, you know that little thing you do that makes you feel good when you do it. Do that.
14. Check in. No one wants to be the one that always has something going on or to feel like a burden. Take a little bit of the emotional and spiritual burden off of us to say: Hey, what can I pray for you today for or tell me one good thing that happened this week. Bring us out of our little world and in to yours.
15. Stick with us, through the good, the bad and everything in between. You will wipe away a few tears, you will laugh a few laughs and you will do more to carry the burden for people than you would ever know. We’d be happy to do the same for you.

Y’all the reality is this pandemic business is hard for all of us in different ways. Being on lockdown has given me the opportunity to be more attune to what others are going through.  I’ve watched friends experience battles with mental illness for the first time as depression and anxiety set in. I’ve watched people I love and care about experience financial strain due to unemployment. I’ve watched parents experience fatigue like never before as they were teacher, parent, wife and then rolled into summer. I see the concern as the school year peaks around the corner and many are forced to make unimaginable decisions. I see you. Who do you see and who can you love this week?

BLOG NEWS: I am working on a revamp/update so you may see a few new things around here in the weeks ahead. My goal is to write twice per week going forward. One post with an update (life, health, what we are cooking, reading, watching, etc) and then one where I just share a part of my story, a part of whats on my heart that week and I hope you will follow along. It will at times be honest and raw and other times I hope you will laugh. Like check out in next weeks post why my therapist called me a hot piece on Monday.  I will also start adding a Prayer/Praise at the end of each post, with one thing we are giving praise for and a specific prayer intention that we are asking prayers for.

This weeks Praise: The vomiting has stopped after adding Ranexa about 10 days ago and thankfully, my heart rhythm is behaving on this new medication.

Prayer: I have a followup appointment with Cardiology next Friday with the cardiologist I hung up on the last time. I would just ask that you would pray for that appt/conversation. We are also still trying to discern next steps in my care and case, so I would appreciate prayers for our wisdom.