I don’t want to be “that blog”

You know the one. The sad one. The one that feels depressing even when it’s not you, not your life, not your reality. 

But it is my reality. And I don’t want to read it any more than I want to write it. I also dont want to leave you guys hanging though, so I apologize for the long, long absence.  

My heart got better, then relapsed a bit, then I recovered! All was pretty good for a few months. My anxiety started improving. And then I started feeling short of breath again. I started getting fatigued again. I cried hysterically in front of my cardiac NP telling her that I felt CRAZY, but something was. Not. Right. So- they gave me another echo. After about 25m of me explaining that I feel crazy, but I cant breathe. The air feels devoid of oxygen. The atmosphere feels too heavy. 

I was right this time.  

My heart is back in HF territory. They dont know why its decreasing- but it is. If it keeps decreasing, I’m actually in worse shape than I was in the first place because that means the damage done to my heart is now getting progressive. 

I’m really trying not to think about it in the moment. Its worst at night, as I am laying down to sleep. What if I don’t wake up? What if tomorrow, I don’t wake up? I do wake up, but it’s always with genuine surprise. I feel like a ticking time bomb. A walking death sentence. I try really hard not to think about it. 

And it’s a new year! My husband said today- wow. A year ago we didnt know you had heart problems! And I couldve cried. It feels like a lifetime ago that I felt any kind of normal. It feels like a lifetime ago that I didnt stay awake at night- until I physically can not keep myself awake any more. Its only been a year. On March 1st, I went to sleep just fine. On March 3rd I woke up dying, and it has been a slow trudge ever since. 

We are still drowning in the medical debt. Thanks America. My plan year just reset, which means on top of the $10,000 we owe out of pocket, we’ll now start getting bills for all of my appts until we meet the deductible again. Its like swimming into a hurricane with floaties on. And knowing that the only way out- is through. 
The silver lining is- my kids are cute as shit. I hope I get to revel in that for a good long time. 

1 in 100,000 (aka, all the ways my body tries to kill me, vol 3)

Today I had a follow up echo on my heart. 

They were having trouble getting a clear picture, so they used a contrast dye called difinity. 

Within minutes of getting the injection, I started to feel weird. Like I could feel my heartbeat, and my chest was tight. They got the pictures they needed, and suddenly I started getting SEVERE chest pain, radiating from my breast bone to my shoulders. It was so sharp and sudden that I instantly started crying. I could barely gasp out that my chest hurt. They called the cardiologist to the room, got a bp cuff and 02 sat monitor on me- my bp was fine and my HR and 02 were perfect, but I was in SO MUCH pain. It left my chest and shoulders and settled in my lower back. It was so severe my back kept spasming. The cardiologist came in and held my hand and apologized. He promised it would fade really quickly. In the meantime- they took more pictures of my heart (because if I was going to be under stress anyway, they might as well see how my heart copes with it). 

After what was seriously the longest 5 minutes of my life the pain loosened up. I didn’t feel sharp stabs of pain, just a mild and lessening ache. 

I asked what happened, and the sweet nurse explained that I’d just had an allergic reaction to the dye. That it is incredibly rare- 1 in 100,000. In her entire career (she was older, grandmotherly) she had only seen it happen 2 other times. 
Figures. 1 in 3,000 to get PPCM. 1 in 100,000 to be allergic to difinity. 
My echo showed no improvement, but also no decrease. They are upping my meds and retesting my echo in a month. If I still have no improvement, my next step is a pacemaker.  

They are trying to get me approved for en.tresto. its supposedly a miracle drug for heart failure. UNFORTUNATELY according to my insurance- my BNP has to be elevated in order to qualify, and mine has never been out of the normal range. My cardiology team is fighting for approval, but by the time it comes in it might not matter anyway. I’d just buy it out of pocket if I could, but it is approximately $800 a month.

I’m just going to keep swimming. 

Not a good place.

I have to call a therapist tomorrow. I have to. I am in such a bad place right now. And it is dark, and hopeless, and all consuming. 

Its the kind of sad you feel in your bones. It makes it hard to function. It has me asking “why bother”. It makes it hard for me to even want to take care of my kids. Or myself. 

Its the kind of sad where you just want to lay down, and let it wash over you until you drown in it. 

I need help. I have to call a therapist tomorrow. 

Life on a no salt, no potassium diet

I do not recommend. 

Bright side, ive lost 60lbs in the month since delivery as a combination of stress and lack of food options. 

However, next month is my 30th birthday. 30! Its a big deal. Unfortunately that means pretty much jack when you cant do anything really special because you’re broke, or even go out to dinner because theres nothing you can eat. 

I’ve pretty much been living on eggs, chicken and no salt turkey. Salads with vinegar and cucumbers. Half the time I just push off eating until my stomach hurts, or my husband yells at me. And then it still takes me a half hour to find anything that even sounds remotely good and doesn’t contain a crap ton of sodium or potassium. Usually, if it tastes better than cardboard, its at least loaded with one or the other. 

Siigghhhhhhh.  

The medical stuff.

I can talk about the medical side of my situation. It doesn’t reduce me to a hysterical mess as much as the theoretical and emotional side. So heres the rundown, from start to now: 
33w pregnant. Palpitations get me sent to the ER

EKG at ER shows electrical block in my heart- called Left Bundle Branch Block. This is extremely unusual in a 29yo so I am referred to a cardiologist. (This is Monday, 33w2d)

Cardiologist does echo on Wednesday. Calls me that afternoon and tells me I need to see a heart failure specialist. Now.

Thursday. HFS tells me that I have an ejection fraction of 30%. Normal is 50-70%. I am considered to be in advanced heart failure, and this is deadly. Wants to do a heart catheter to get a better idea how well I’ll handle labor. 

Monday (34w2d) have heart Cath procedure- they slide a wire in my neck, into my heart, while I am AWAKE, and read it for 15minutes. while in recovery cardiologist comes in and says it looks good, but they want me to deliver as soon as possible. Cue panic. I have 3 hours to go home, pack a bag, sort everything out, say goodbye to gigi and get back to the hospital. I get my first steroid shot for baby’s lungs. 

Tuesday/Wednesday- I’m just sitting. I wait in the hospital hooked up to an EKG 24/7 waiting for a bed in the ICU. Nothing exciting happens. Second steroid shot on Tuesday. Induction with cervadil started on wednesday.

Thursday – bed in the ICU opens up. I go and get ANOTHER heart Cath. This time it stays in. I am transferred to the ICU. Induction goes well, but slow. More sitting around. I get my epidural Thursday morning, before contractions even start, because they dont want my body under any unnecessary stress. I also have an arterial line put in my arm so they can monitor my BP with exceptional accuracy.  At this point, I can’t even tell you the host of medications they are pumping in to me. I progress too slowly labor wise, so they start pitocin. Which I really REALLY didn’t want but they explain that in considering the benefits of getting labor done quickly – it far outweighed the risks of pit. I go much faster from there on out. 

Friday morning, 35w on the button im ready to go. There are 14 people in the room. My bp is through the roof. The epi is starting to feel one sided, but its too late for a bolus. I push once, twice, and hes out. They give me a huge dose of nypride to get my bp down asap. They whisk him to his cart to make sure he’s doing ok for being so early. I get skin to skin once he’s stable, around all my wires, for just a short few minutes before they have to take him. My husband goes with him, at my request, and I am left alone. Sort of. I have 3 OB nurses and 3 cardiac nurses running around me like crazy. I’m tired. I just lay there and let them work me over. It still feels surreal. 

Saturday- I have another echo. My function has dropped to 20%. All my wires stay in. I can’t go see my baby. 

Sunday- wires come out! All of them! I have to stay hooked up to an EKG, but I get to see my baby. Its via wheelchair, and I start crying before I even get to his room, but I get to see him for 15 minutes. 

Monday, transferred to the OB ward. Still on the EKG- but the machine they have me on isn’t as good as the cardiac ward,  and it alarms every few minutes. Sends my anxiety through the roof. I get to see my baby for an hour. 

Tuesday, discharged. 

From there- everything is a blur. I have another echo a week later and my EF is down to 10%. 

Ten. 

Thats the point where you qualify for a heart transplant. 

I’m fitted with a life vest. A portable defibrillator that I wear 23hrs a day in case my heart stops. Its uncomfortable. It cuts my skin and wakes me with bings and bongs. It has alarmed on me twice so far- meaning its about to shock me. Both times were false alarms. 

My meds are upped 3x. My bp starts getting so low that I actually black out one night when standing up too fast. 70’s/55-60 is my usual. My resting HR is 59. 

I go in for a cardiac MRI a month post diagnosis- my EF is up to 37%! But now my kidneys are failing. My potassium is 6, when apparently a 7 can be deadly. Figures. I’m restricted from potassium as well as salt. And told to forget my fluid restriction and start drinking as much water as I can stomach. 

My meds are reduced to the absolute bare minimum which terrifies me. I don’t want to lose the little progress ive made. I know I can live longer with new kidneys than I could with a new heart. 

With the lower meds, my bp goes up to 100/70, but my resting HR goes up to 66, and I start getting palpitations again as well as getting tachy when moving around. 

I get lab work done every 48hrs to monitor my potassium and kidneys. They show improvement, but SLOWLY. My beta blocker is upped again to help get my HR down and palpitations under control. 

So thats where we are today. I go in next week for more lab work to check on my kidneys and talk about my meds. I’m going to request cardiac rehab as well. I wont get another echo or MRI for at LEAST a month and that makes me super anxious. That also means I’m stuck with my life vest until at least then too. I’m hopeful that despite the med reduction, I’ll keep healing…. 

Unfortunately- the LBBB can mean that I’ll never recover on my own. I might stall out in the mid 30s and never get any higher. At that point- that means I will need a CRT-D, A pacemaker. Its more likely than not that this is what will happen. AND if by some miracle I do recover, theres still a chance the LBBB will kill me one day anyway if the right bundle ever blocks. In some ways, I wish they’d just give me the crt-d and get it over with. 

To top it ALL off, in between all of that my dog…. The dog I have had literally since the day he was born, had some sort of blackout episode. When taking him to the emergency vet we discovered he needs a $3,000 surgery for a hernia. 

Then we found out that my husband was denied all 3 weeks he took for leave with me and baby, which means he isn’t paid for that time. Between that, and my pay being only 60% while I’m out we are in some pretty dire financial stress right now. 
When it rains it pours. Or, in my case, monsoons. 

Everything I’ve lost

I’m mourning today. 

I was sitting here, thinking, which I’ve been doing too much of lately, and into my brain invades the thought- how much more can I lose? 

Roman is a month old this week. Ironically, the week of his due date. The woman across the street from me was due the same day as me, and it is a daily reminder of all the things I was “supposed to” during this pregnancy, that I lost. 

I lost the chance to experience spontaneous labor. 

I lost the opportunity to breastfeed (my heart meds make it impossible) 

I lost the joy of decorating a nursery, and putting away baby things. (My family had to do it for me so he’d have a room to come home to- it kills me every time I have to ask where something is.)

I lost that bonding time skin to skin right after birth. I saw him less than 5 minutes before he was taken to special care, and then it was another day and a half before I got to see him at all. We are both suffering for that. 

I lost the enjoyment of maternity leave. With constant heart appointments, and extreme fatigue, and extreme anxiety about my condition- its much less about rest and baby bonding as it is “how do I get through the day?” 

I lost the opportunity to even worry about the baby blues. Ive blown past that into full blown deep dark depression. 

Two weeks ago, the woman across the street had her baby shower. Blue balloons everywhere, women showering love and playing games. My baby shower was scheduled for the 11th, and we canceled it because I was admitted on the 6th. I lost that too. I should have gotten to celebrate MY baby too. 

I lost my health. 

I lost a huge part of my independence. 

I lost me. I lost me. This feels out of body. I feel lost. I have a hard time remembering things. Every little ache and pain sends me into an anxiety spiral about my heart. I cant keep up with my toddler. Taking care of my baby exhausts me. I’m sad about all the normal postpartum things I don’t have the energy to think or worry about or do or experience. I can’t even go to the store by myself. 

What else is left? 

I still cant talk about it.

I’m doing better, emotionally, but I still cant think about it too much without getting hysterical. 

I was fine. 3ish weeks ago, I was fine. 

And now I feel like I’m living in a weird snowglobe of hell. 

I’ve been fitted with a life vest- a wearable defibrillator that will save my life if my heart gives out unexpectedly. 

It is clumsy and uncomfortable and I can’t even start to think about how much its going to cost me once it hits my insurance, but it gives me a little peace of mind. 

I’m still tired, but I feel like I’m getting better. 

Unfortunately, my echo last week showed no change- when I so desperately wanted…. Needed…. Just a little improvement. 

Next is a cardiac MRI on April 4th. That will give me a more accurate idea of how my heart is working. 

Please, dear God, no more bad news. 

I would not have tried so hard.

I wouldn’t have fought so hard to have kids, if for a moment I thought I’d have to leave them early. 

My follow up echo today showed no improvement. Maybe a little decrease? I’ll find out for sure a little later. 

I am so very very sad.

Traumatic. That’s the word.

I’m home. Baby Roman is still in special care, working on his eating skills with the assist of a feeding tube. 

I keep trying to process the last two weeks and I’m having a hard time reconciling what I thought would happen, what actually happened, and what should be happening. 

I have moments where I’m next to hysterical with grief. 

I have moments where I’m coping well. And functioning. And moving forward. 

And then, there’s the majority of the time that I spend feeling numb, and very removed from my situation. Its always been my coping mechanism of choice- distant relation and analytical processing. 
Ill write more about the details of the last few weeks, delivery, and post partum in a few days. I still feel lost in the woods, and I just need to get “home” before I can get it all out. 

In the meantime- a visual adventure: 

This was the first time I got to hold him. My baby. Almost a full 24hrs after his birth. 

Posted on my personal page

Sharing here as sort of an update.

———-

This has been a bad week. 
Its been bad, in the most unexpected ways. 
About two weeks ago, I was driving home and I felt…. Off. My heart was fluttering, and I just didn’t feel the best. I went in to see my OB at Abbott and baby checked out fine! Yay! 33 weeks- home stretch!
But they don’t mess around with pregnant people so they sent me to the ER for an EKG, so they could just make SURE I was ok. I was super confident I was just dehydrated and fine. 
But I’m not. 
That night kicked off a string of cardiology appointments that I NEVER expected. With each one I was confident- I’m fine! 
But I’m not. 
As of last Wednesday I was told that my heart is failing, and they don’t know why, or how long it’s been this way. It is currently working at about 50% of where it should be. Its just not pumping strongly enough. 
This puts me at extreme risk for delivery. 
Monday morning I went through a procedure that slid a little wire into my heart through my neck, to measure what’s going on in there and give them a better idea of how I might handle delivery. All things considered, it went pretty well… But I’m not out of the woods. It did confirm that my heart is just not working right. 
So, Monday afternoon Tony and I met with a high risk OB who advised that it’s safest for me to deliver this week. At 34w. I received a steroid shot to help baby’s lungs develop and I will get another one on tuesday.
We got to go home for a bit, see Gigi, process as much as we could. Then we returned to Abbott to check in. 
On Wednesday night/Thursday morning, I’ll have another wire placed in my heart to monitor me during labor, and I’ll be induced.
Tony and I are scared, but we are confident that I have the absolute best team possible taking care of baby and I. They are handling me with extreme care. 
I’m currently writing this from my hospital bed, hooked up to a heart monitor, while Tony sleeps on the world most ridiculous and tiny chair bed. He only complained a little bit 😉  
This is all happening so fast that we’re just keeping up with what we need to do in the moment, to get through the next. Right now, we just ask for your love and prayers, as the next few days/week is going to be even more stressful and trying and critical for baby and I. 
Please keep us in your prayers for a safe, uneventful delivery, for a strong baby boy, and for my future healing!! 
Lots of love 

Nessa, Tony, Gigi and baby Roman 

❤❤❤