Mystery of my heart

[Gnusgal]

Why is it that we're always playing detective, trying to piece together the clues that might solve the mystery of why I feel like crud?

Allow me to back up a bit. Those of you that have followed me over the years know that in 2007 I had a bi-v ICD put in. The year to follow was GREAT! Then, in September of '08 the atrial lead broke and had to be replaced. Unfortunately, following that surgery, the LV lead moved and began pacing my diaphragm. It took two more surgeries to finally get it all back to working order. However, I never got back to feeling the way I had before the broken wire. We tried reprogramming some things in April but if anything, I felt a little worse. In May I started having major swelling issues and set up an appointment with my cardiologist, as I had been going through my EP office, but felt like I was getting nowhere. I had to postpone that appointment, though, because my twins via surrogate were born the day before it was scheduled.

I finally got in to see her 2 weeks ago. While there she listened to my heart (of course) and got a funny look on her face. She said "Just a minute" and got out my chart. As she looked she explained that the valve sounded different. It's like it was double clicking for every beat. She went back to listen again and it was gone. Back to "normal." She sent me over to my EP to get the ICD interrogated, hoping it recorded whatever that strange beat had been. Only it didn't.

She also set up for me to have my annual MUGA scan, to check my heart function. I had that done a week ago, Friday. Wednesday she called me with the results. Unfortunately, they were unable to get an accurate reading because I had "irregular beats" during the test. They said the EF would show as lower as a result. I hope those #s weren't accurate! It said my systemic EF was 26%! I seem to recall the Mayo Clinic doc saying 24% was eligible to go on the transplant list.

So we're still baffled by this weird rhythm. I wore a holter over the weekend and will turn it in tomorrow morning. Hopefully it will give us some clues. I SO hate being the mystery of the week!

Oh, yeah. And she mentioned maybe making another trip to Mayo. How in the world are we supposed to do that with infant TWINS?!?

So, as you can see, the forum being down this last couple of weeks has had me in a tizzy! I needed you guys!!! And still do. Please pray we figure it out SOON and it's an easy fix!

Thanks in advance!

 

[hall]

I sure hope they find out what is going on and get you feeling good! Enough already! Best of luck with your twins. Is there someone close to watch them? Hope everything works out for you.

 

[kfay]

Niki, first of all, I must say your babies are adorable! I'm sorry you are having to deal with all of this heart stuff again while they are still so tiny. Do you have any relatives nearby who could watch after them if you have to go to Mayo? Or maybe you could take them with you, bring a grandma along to help while you have your appts. Hopefully, your local cardio can figure something out and you can put that Mayo visit off for a while.

Kim

 

[Gnusgal]

We have family nearby, but there's no way I would feel comfortable leaving the twins with them for that long at this age (heck, I have a hard time leaving for an hour!). They get up several times a night and I would never ask anyone to do that. Besides, most of the ones that would/could take care of them work. Nathan's mom doesn't, but I told Nathan a long time ago that I wouldn't let her use the twins as an excuse to not get a job (long story). We talked about bringing someone with us, but can't figure out who. Most of the available options would drive us crazy. We also thought about having me go alone or with my mom and Nathan staying home with the kids. Personally, I don't like that idea at all. Hopefully it won't be necessary to go. Because it's giving me fits just thinking about it.

 

[kfay]

Niki, Unless I'm having a procedure done, I always go to Mayo by myself. It really doesn't bother me at all. The first time was when I was consulting for my surgery and everywhere I went, they all wanted to know who was with me. They would get this shocked look on their face when I told them I was alone. Even though my husband and I have been together for 25 years, he had never gone to a cardio appt. with me until the day before surgery.

I know you don't want to ask for help, but I have a feeling that anyone you asked would be more than happy to help you guys out. Hopefully, it won't come to that.

Kim

 

[Gnusgal]

I know you don't want to ask for help, but I have a feeling that anyone you asked would be more than happy to help you guys out. Hopefully, it won't come to that.

Oh, I guarantee you that Nathan's mom would be more than happy to take the twins for as long as we let her. But that ain't happening. Besides, she wouldn't have any backup. I know first hand that taking care of them alone is HARD. No matter how much you love them.

It's not that I need someone to come with me to the Mayo. I'd just rather not if I can help it. Plus, I know that if I were to say I was going alone my mom would have a fit. She hates that Nathan doesn't stay the night with me when I'm in the hospital. And the biggest reason I don't like the going alone option is that I would miss my kids. I don't want to be away from them!

 

[Karlynn]

My first thought was "The lady has infant twins! Surprise surprise she's having weird rhythms and stuff." You are probably functioning on empty most of the time. I'm guessing that what they're hearing/seeing may be an outcome of that. But I'm glad you're getting it looked into. It may be that you have to find some way to get more rest. (I know - and you'll cure cancer at the same time.) Give Dad some of those nighttime feedings? Sleep when they sleep, even during the day. Everything else can take second seat to your health. This is the most physically exhausting time when it's the eat/sleep/eat/sleep repeat as needed. It was with one - I can't imagine 2!

And I had to go up to Mayo for a week when my daughter was 6 mo. and my son 2 1/2. A most wrenching time. I still remember the feeling like it was yesterday. My son has very vague recall of Grandma and Grandpa staying with them. But not a lot got done around my house except caring for my children due to my bad arrhythmia issues (prior to my VR). That was my excuse then for a messy house and no clean clothes - now I have none.

 

[dl_mooney]

You need to take care of yourself so that you can be around for the twins.They will need you for years (healthy). What ever it takes please get it done. Thoughts & Prayers comming your way.

 

[Gnusgal]

The rhythm issues might be due to sleep deprivation, but my original reason for going in (less energy, more swelling) started way before the twins were here. I'd love to get more sleep, but these two make that difficult. Nathan helps when he can, of course, but nights before he works I take the whole night. He doesn't need to be taking care of patients while exhausted. And as for sleeping during the day when they sleep, I try. But they don't always sleep at the same time. For example, right now Kyla is sleeping and Lucas is awake. Later I'm sure it will be the other way around. Sometimes I just pull them both into the recliner with me and we all 3 sleep there. Then I'm stuck.

 

[Karlynn]

Tell them that "cool twins" always sleep at the same time. Start the social pressure early.

 

[AgilityDog]

I remember this time with my sister and her twins. For a month or two she tried to have someone stay with her family a week at a time. Extra Bottles were prepped before bedtime, and BIL, who had to be up early in the a.m. (he's an anesthesiologist) would stay in the guest room, while my other sister, or I, or another family visitor, slept in the Master with my sister, and the babies in cribs in the master bath and bonus room (so they didn't wake each other up).
About 2 or 3 a.m. one or the other or both would wake, and sis and I (or whomever) would get up and feed, then we'd all go back to sleep. It took a while to get them on a schedule, but that is what solved the sleep deprivation (eventually, around 4 months old). I know it's hard to even get a shower and dress if you are the only one taking care of infant twins.
For the first few months, Sis used a dry-erase board to keep track of which twin ate, slept, pooped, etc. 'cause it could be confusing! And exhausting.

 

[kfay]

Niki, I don't know if you can afford to do this, but my next door neighbor hired a night nurse for a while when she came home with her twins. She said it was great because she and her husband got sleep and the lady had taken care of lots of babies and had them on a schedule in no time. The lady would arrive at 10:00 at night and leave at 7:00 in the morning. Even if you could do it for just a short time, it may give you a chance to get some rest.


Kim

 

[Gnusgal]

I'm actually getting pretty good at the night stuff (so are they). It's not a strict schedule, per se, but things tend to happen around the same time each night. I feed them and put them to bed around 9, I get to bed around 9:30-10:00 (depends on how much I didn't get done during the day), one of them wakes around 1:30 and I wake the other so they eat at the same time. It takes about half an hour for them to eat, then another half hour or more to get them both back to sleep (she goes back down easier than him). Sometimes I fall asleep in the recliner as I try to get him to sleep. Someone generally wakes up between 4:30 and 5:00 and again I feed them both. After this feeding I can sometimes get them to go back to sleep, but generally they want to "play" for the next couple of hours until the eat again between 8 and 9. Then they finally nap (but not always at the same time). When Nathan is not working he takes the 5 AM feeding and stays up with them, allowing me to sleep until the next feeding.

We can't afford a night nurse, as I will not be returning to work. But I don't think I'd want one anyway. We're doing okay and soon it will be just a memory. Until then, naps in the recliner do wonders! LOL

 

[ryen0]

Hey Niki, this is more of a twins suggestion than a heart one. I dunno if you've heard of it but my wife and i used and are still using the no cry sleep solution It worked wonders for us. After only a few weeks our twins would often sleep 7 to 9 hours a night. If you need any support in the infant twins arena, i'm here for you.

 

[Gnusgal]

Hey Niki, this is more of a twins suggestion than a heart one. I dunno if you've heard of it but my wife and i used and are still using the no cry sleep solution It worked wonders for us. After only a few weeks our twins would often sleep 7 to 9 hours a night. If you need any support in the infant twins arena, i'm here for you.

Thanks. I'll check into that. Being that my babies are only 7 weeks old, they aren't biologically ready to sleep through the night yet. I can accept this. I just wish that Lucas would go back to sleep quicker. Perhaps the book will offer a solution for that. I've had a sample sent to my Kendal. We'll see if it is what I'm looking for.

 

[Gnusgal]

I got a call from my cardio's office today. She has sent the results of the holter to my EP and wants to consult with him before talking with me, but did want to let me know that there were, indeed, "extra" beats. Guess it will be a few more days until I find out what that will mean.

 

[Nupur]

Wow, the babies are so cute! I didn't realize they are here (guess haven't read the board regularly). I remember the exhaustion of those first weeks. Maybe the bout
of arrhythmia is related? I hope it is nothing more serious. I had horrible sleep issues with my son, but I could never let him cry it out (it was no use, I would stand next to his door and cry myself too anyway : ) and ended up just sleeping with him once I got over the fear of having the baby next to me in a big bed. It worked out better and somehow baby slept better nestled to mom.

I hope everything works out!

 

[Guest]

I got a call from my cardio's office today. She has sent the results of the holter to my EP and wants to consult with him before talking with me, but did want to let me know that there were, indeed, "extra" beats. Guess it will be a few more days until I find out what that will mean.

Yikes, Niki ... very sorry about all this. Sure hope it works out. Thoughts/prayers coming your way, of course.....



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