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