Where the heck does this stuff come from? I'm telling you. Freaking weird. I suppose it's the ACE inhibitor, or maybe a combo of all the heart and HBP meds, because dang. Seriously weird stuff. Worth talking about? Maybe. But not today.
And all this waking up with my heart feeling like it's going to slam its way out of my chest. Makes it pretty difficult to get a good night's sleep with all of that going on. Then there's the alarm startling me awake. Oh, and I don't mean startled in a normal way. I mean startled where I'm gasping for air with my heart, once again, trying to slam its way out of my chest. lol Sheesh. Really?
Well, as an aside, I discovered something interesting the other day.....
For anyone who has to track their BP for whatever reason (trust me, there is more than one reason to track it), if you have one of those newer models with the capacity to detect irregular heart rhythms... pay attention to that. If you don't have one, they're great to have!
I'd actually forgotten mine does this, until yesterday when I was going through a couple of pics I'd taken with my iPhone (which I will sometimes do so I can write the values down later), when I noticed the little symbol on several of the pics I'd taken over the past week or so. The irregular heart rhythm indicator was lit! One day my BP was up pretty high, but my HR was only 36 BPM! Yeah, that's crazy slow. I'm thinking/guessing that maybe it was missing beats either due to a run of AFib I couldn't feel, or a few missed beats or something. Either way, it had detected something. HR tends to be low during high BP, and higher during low BP readings. So it didn't surprise me all that much to see a reading of 36 bpm. Although that is seriously slow.
Anyway, if you need to monitor, need to get a new monitor, consider getting one with those indicators on there. It doesn't mean you have anything wrong with your heart if it does detect something, because even normal hearts can have occasional abnormal rhythms. But... just in case, you can bring it up to your dr. Still good to have, IMHO.
That is all. I'm hungry. Time for some lunch.
Laterz!
Tuesday, April 29, 2014
Thursday, April 24, 2014
T.E.E. went well
Thankfully, the T.E.E. went well and showed that my leaky mitral valve and resulting regurge aren't significant enough to require surgery! Glad for that! :) So on with dealing with the medications and the next step... sleep study.
Medications. First night on the ACE inhibitor was a little rough, but my body will adjust. My HR was in the mid 40's at the hospital yesterday and remained there in the surgical unit, prompting one of the residents who was attending/watching to ask me (before the procedure, of course) if I'd been evaluated for sick sinus syndrome (not to be confused with sinus, as in your nasal cavity). I haven't, but in a nutshell... SSS is where your HR varies between bradycardia-normal-and often-times A Fib and/or tachycardia. We've not gone there yet, but who knows what will happen down the road.
Meantime... back at the ranch....
First dose of Lisinopril was a tad unnerving. Dizziness, a little chest pressure, BP was a bit low right before bedtime: 96/73 w/HR at 55 BPM. Hey, better than at stroke level as it was last Saturday! Woke up this morning very tired, heavy feeling, a bit weak and sweaty (suspected low BP). Darn BP monitor wouldn't get a reading at all, which is no surprise since it will error out when it's too low sometimes.
Eliquis... well, it's an anticoagulant (blood thinner), and I will be on this the rest of my life. This drug is prescribed to those with A Fib to help prevent stroke. I just have to be careful with all I do, even with any dental work, which I need to go to the dentist soon anyway. Even a routine cleaning that causes bleeding can cause BIG problems. Stopping this medication for certain procedures, like the removal of a tooth or other minor surgery.... can be tricky, because stopping this drug has been known to cause blood clots and stroke.
I even have to warn the person doing my nails to be very very careful, as I've been accidentally cut by those big nail files before. In the past, this hasn't been anything but a minor inconvenience. Not so much the case now.
So, yeah... life is going to be a bit different from here on out. No contact sports (there goes my football career!). lol ;p Different is just different. That's all. Nothing more. Nothing less. Not bad. Just.. different.
Next step.....Sleep study on the horizon....
We'll see. At the end of the road I'm hoping the A Fib will be contained/controlled, the pulmonary hypertension will be relieved in some way (hey, a girl can hope, right?), and I will regain a normal energy level again. :)
Medications. First night on the ACE inhibitor was a little rough, but my body will adjust. My HR was in the mid 40's at the hospital yesterday and remained there in the surgical unit, prompting one of the residents who was attending/watching to ask me (before the procedure, of course) if I'd been evaluated for sick sinus syndrome (not to be confused with sinus, as in your nasal cavity). I haven't, but in a nutshell... SSS is where your HR varies between bradycardia-normal-and often-times A Fib and/or tachycardia. We've not gone there yet, but who knows what will happen down the road.
Meantime... back at the ranch....
First dose of Lisinopril was a tad unnerving. Dizziness, a little chest pressure, BP was a bit low right before bedtime: 96/73 w/HR at 55 BPM. Hey, better than at stroke level as it was last Saturday! Woke up this morning very tired, heavy feeling, a bit weak and sweaty (suspected low BP). Darn BP monitor wouldn't get a reading at all, which is no surprise since it will error out when it's too low sometimes.
Eliquis... well, it's an anticoagulant (blood thinner), and I will be on this the rest of my life. This drug is prescribed to those with A Fib to help prevent stroke. I just have to be careful with all I do, even with any dental work, which I need to go to the dentist soon anyway. Even a routine cleaning that causes bleeding can cause BIG problems. Stopping this medication for certain procedures, like the removal of a tooth or other minor surgery.... can be tricky, because stopping this drug has been known to cause blood clots and stroke.
I even have to warn the person doing my nails to be very very careful, as I've been accidentally cut by those big nail files before. In the past, this hasn't been anything but a minor inconvenience. Not so much the case now.
So, yeah... life is going to be a bit different from here on out. No contact sports (there goes my football career!). lol ;p Different is just different. That's all. Nothing more. Nothing less. Not bad. Just.. different.
Next step.....Sleep study on the horizon....
We'll see. At the end of the road I'm hoping the A Fib will be contained/controlled, the pulmonary hypertension will be relieved in some way (hey, a girl can hope, right?), and I will regain a normal energy level again. :)
Tuesday, April 22, 2014
A diagnosis at last!
So, my plan was to go to the cardiologist, as I'm supposed to go yearly anyway, and to ask him to take me off the carvedilol...as I didn't believe I needed to be on it anyway. Now, to give a you an idea of that appointment...and the events that followed...leading up to tomorrow's T.E.E. (which I will get to), let me explain a small chain of events that led to this point. Or maybe.. not so small chain of events.
The day I saw the cardiologist I'd forgotten to take my carvedilol, and by the time I'd made my appt that afternoon... my bp was pretty elevated. But still, I planned on asking him to remove me off the medication and to explain why, that the fatigue/exhaustion, unbelievable breathlessness/gasping for air, etc. was made worse by the drug. He wasn't convinced and wanted me to continue taking it and wanted to put me on an event monitor to see what was going on with my heart.
I believe it was less than two weeks with the monitor, or right about two weeks, I received a call from my cardio's nurse asking me to come in that Thursday (last Thursday) because the monitoring company had picked up something on the monitor and the dr wanted to discuss it with me and talk about medications. Now, I'd pushed the button a few times, though not every time I felt something (as I should have), but I didn't realize that the folks monitoring me via satellite were actually monitoring me every minute, wether I pushed the button or not. I had an echo scheduled with my cardio's technician, whom he trusted more than my former GP's tech (which I agreed with totally), so that thursday I went in for the echo and to talk to the cardio doc about what they'd found.
Thursday. Diagnosis: A Fib (Atrial Fibrillation). One of the most dangerous arrhythmias anyone can have. All this time I thought those simple 'palpitations' were just that... palpitations. They weren't. They were my heart going into a dangerous pattern of A Fib.
Now we know why I had the mini stroke (TIA) last April. Mystery solved!
The carvedilol was actually keeping my A Fib from going into long episodes as they had in the past (up to an hour at times), keeping them in short bursts lasting from less than a minute to up to about 15 minutes. That's a good thing. But I have to remain on carvedilol.
I not only have to remain on carvedilol, but I now have to have an ACE inhibitor added, as well as a "big guns" blood thinner.... for the rest of my life.
Cardio doc says that this is a dangerous situation because my BP is unstable and goes up and down. High one minute, too low the next. My HR also varies between extremely low, to normal. Carvedilol is also a high bp medicine, but it has to be taken twice a day and in a TIMELY fashion, and I found out a couple of times just short the half-life of this stuff is...the first time being the day I forgot to take it before going to the cardio appt. The second time.....
This past saturday... I dared to sleep in. By the time I got up and had my ShakeOlogy breakfast... I was somewhere in the area of about 5 hours late taking the carvedilol. I have to keep a BP log now, at least 2 readings a day, more if I have symptoms that I feel I need to check my BP in relation to. I took my pre-medication reading...
Hypertensive Crisis
163/132 (61 bpm) This is a stage 4 hypertensive crisis that would normally send people to the ER or calling an ambulance to avoid a stroke. Being new to this, I simply took my carvedilol and waited. 11 minutes later my BP was 105/71 (45 bpm). That second reading was actually low, and my HR was extremely slow. These wide swings are what my cardiologist was talking about, and it has only somewhat to do with the carvedilol, of which I'm on a very low dose. But these swings occur throughout the day no matter what. Though with proper timing of the heart/bp meds there's less of these swings. Problem is... when my HR drops very low, the regurgitation becomes even worse.
Moderate to Severe Mitral Valve Regurgitation and Increased Pulmonary Hypertension?
Last year when I was in the hospital the MV Regurgitation was at the "Moderate" level, which is considered a 'careful watch and wait' mode to see if symptoms increase, stay the same, etc. When my new cardiologist received the records from Mobile Infirmary, however, he found that the written records stated "moderate to severe," which he said 'puzzled' him. He explained that severe regurgitation usually presented with right side heart enlargement. My dimensions are normal (thank God). But, if it's bordering on severe, that could be an issue in which action may be required to stop it from reaching the severe stage.
He stated that because of my symptoms they needed to take a closer look to make a more accurate assessment of the regurgitation and to try and find the cause, such as mitral valve problem (prolapse, etc), and the only way to get a closer and more accurate look is to do a T. E. E. (Transesophogeal Echocardiogram). In other words, to do an echocardiogram from inside the esophagus, because you can get closer to the heart that way..and get a better view. I will be under for this procedure, of course. :)
Pulmonary Hypertension... kind of spooky.
One year ago during an echo, I was told there was elevated pressure in my heart, meaning I had mild pulmonary hypertension. In some people, mild cases often stay mild (depending on the cause). When I spoke about this to my cardiologist on the first visit, he said... "You probably do have PH! With the heart arrhythmia, high BP swings, mitral valve regurge..." Well geez! lol He's pretty blunt, but.. he's an awesome cardiologist, so I didn't mind that. He's aggressive and leaves no stone unturned. So anyway.....
Normally the pressure should be less than 25 but is now at 41. Laying down makes me gasp for air. Taking a shower or bath makes me gasp for air. I just picked up one of my ferrets...and am gasping for air as if I'd run a marathon. No fun.
I had a colonoscopy yesterday (because I'm 52), and the best part of that was.... the nurse putting the oxygen hose under my nose. I wasn't expecting to feel so good when she did that. It was so telling.
Today....
Kind of a tough day. I feel a lot of pressure in my chest, faint fluttery sensations, super dizzy, can't breathe well, head hurts, and I'm so tired. Did one load of laundry... and I've had it.
I've been avoiding talking about any of this, even as I've dealt with it over the months...as it's gotten worse. I'd been convincing myself it was this or that, blamed it on needing vitamins, needing my hormones balanced (which is being taken care of anyway), needing better nutrition (which I'm getting GREAT nutrition), then I blamed it on carvedilol... as it just got worse and worse. I thought, if I just didn't talk about it.... ever.
Well, not talking about it sure didn't help. Thinking it was nothing didn't help. And thinking it was just my imagination didn't help. In fact, my cardiologist showed me the EKG strips on the computer from the monitor and showed me what the A Fib looked like. It's real. And it's dangerous. In fact he said "This is extremely dangerous."
I look back at all the stuff I ignored, shrugged off, because I didn't have insurance and no other doctor would take that next step and look into it....
I recall one episode last year when I was at Winn Dixie in Mobile. I was in the check-out lane and my heart started with the 'palpitations.' Normally I can count the beats, which range from 160-180 BPM. This time...they were SO fast I couldn't count them. I missed so many trying to count and counted to 200 and gave up. It lasted some 25 minutes or so and stopped on its own. Everything hurt by the time I got to my car. I feel like I'd climbed a mountain, running, with someone beating me with a baseball bat the entire way. I was so tired by the time it was done.
I knew I needed a cardiologist, that I didn't want to just allow my GP (at the time) to prescribe carvedilol and have his in-house tech do echoes on me without my seeing a cardiologist. That inner voice EVER SINGLE DAY keep SCREAMING at me to INSIST on a referral NOW. It wouldn't let up. That voice would keep me awake at night, and it would be the first thing I'd think about when I'd wake up. I thought maybe it was because I believed I needed off the carvedilol. I'd told T about this and he said I should just tell Dr. E that I needed a referral. Period. So I did.
I had multiple episodes one week, about 4-5 about 1 1/2 days. During the day, sitting down doing nothing, laying down trying to sleep, and even once.. that woke me up during sleep. I thought maybe it was the prednisone I was on. Maybe it was just a bad week for my heart. Don't know. Either way, I knew I had to do something. Glad I did.
Tomorrow's procedure....
I go in at 9:30am for the T. E. E. and the procedure is to take place at approximately 11:30a. I'm not scared. But I'm a little grossed out that they're putting something down my throat. lol They're going to give me propofol, and I don't have any adverse reactions to that (as I found out yesterday), so I'll be out of it. I'm also a little bummed that I can't watch. I love to watch the echoes I have, so this is one little bummer about this particular procedure.
What do I expect?....
I guess I suspect they'll find my regurge is moderate. I trust that the doctor is correct in that if my regurge is severe that I would have issues with enlargement of the right side of my heart, and... I don't. So I think it's going to be okay in that respect. I also doubt that the mitral valve is having any serious issues, because they don't seem to SEE it on the previous echoes. But then, maybe there's another issue other than prolapse that can cause this? In previous echoes they've found moderate regurgitation WITHOUT seeing the valve prolapsing? Weird, if you ask me. Oh well, I'm not the cardiologist.
So.... I guess, I've had my workout on this laptop for the moment. Seriously, you've no idea what it takes out of me to do this, especially on days like this. Ugh. lol
Laterz, taterz! :)
The day I saw the cardiologist I'd forgotten to take my carvedilol, and by the time I'd made my appt that afternoon... my bp was pretty elevated. But still, I planned on asking him to remove me off the medication and to explain why, that the fatigue/exhaustion, unbelievable breathlessness/gasping for air, etc. was made worse by the drug. He wasn't convinced and wanted me to continue taking it and wanted to put me on an event monitor to see what was going on with my heart.
I believe it was less than two weeks with the monitor, or right about two weeks, I received a call from my cardio's nurse asking me to come in that Thursday (last Thursday) because the monitoring company had picked up something on the monitor and the dr wanted to discuss it with me and talk about medications. Now, I'd pushed the button a few times, though not every time I felt something (as I should have), but I didn't realize that the folks monitoring me via satellite were actually monitoring me every minute, wether I pushed the button or not. I had an echo scheduled with my cardio's technician, whom he trusted more than my former GP's tech (which I agreed with totally), so that thursday I went in for the echo and to talk to the cardio doc about what they'd found.
Thursday. Diagnosis: A Fib (Atrial Fibrillation). One of the most dangerous arrhythmias anyone can have. All this time I thought those simple 'palpitations' were just that... palpitations. They weren't. They were my heart going into a dangerous pattern of A Fib.
Now we know why I had the mini stroke (TIA) last April. Mystery solved!
The carvedilol was actually keeping my A Fib from going into long episodes as they had in the past (up to an hour at times), keeping them in short bursts lasting from less than a minute to up to about 15 minutes. That's a good thing. But I have to remain on carvedilol.
I not only have to remain on carvedilol, but I now have to have an ACE inhibitor added, as well as a "big guns" blood thinner.... for the rest of my life.
Cardio doc says that this is a dangerous situation because my BP is unstable and goes up and down. High one minute, too low the next. My HR also varies between extremely low, to normal. Carvedilol is also a high bp medicine, but it has to be taken twice a day and in a TIMELY fashion, and I found out a couple of times just short the half-life of this stuff is...the first time being the day I forgot to take it before going to the cardio appt. The second time.....
This past saturday... I dared to sleep in. By the time I got up and had my ShakeOlogy breakfast... I was somewhere in the area of about 5 hours late taking the carvedilol. I have to keep a BP log now, at least 2 readings a day, more if I have symptoms that I feel I need to check my BP in relation to. I took my pre-medication reading...
Hypertensive Crisis
163/132 (61 bpm) This is a stage 4 hypertensive crisis that would normally send people to the ER or calling an ambulance to avoid a stroke. Being new to this, I simply took my carvedilol and waited. 11 minutes later my BP was 105/71 (45 bpm). That second reading was actually low, and my HR was extremely slow. These wide swings are what my cardiologist was talking about, and it has only somewhat to do with the carvedilol, of which I'm on a very low dose. But these swings occur throughout the day no matter what. Though with proper timing of the heart/bp meds there's less of these swings. Problem is... when my HR drops very low, the regurgitation becomes even worse.
Moderate to Severe Mitral Valve Regurgitation and Increased Pulmonary Hypertension?
Last year when I was in the hospital the MV Regurgitation was at the "Moderate" level, which is considered a 'careful watch and wait' mode to see if symptoms increase, stay the same, etc. When my new cardiologist received the records from Mobile Infirmary, however, he found that the written records stated "moderate to severe," which he said 'puzzled' him. He explained that severe regurgitation usually presented with right side heart enlargement. My dimensions are normal (thank God). But, if it's bordering on severe, that could be an issue in which action may be required to stop it from reaching the severe stage.
He stated that because of my symptoms they needed to take a closer look to make a more accurate assessment of the regurgitation and to try and find the cause, such as mitral valve problem (prolapse, etc), and the only way to get a closer and more accurate look is to do a T. E. E. (Transesophogeal Echocardiogram). In other words, to do an echocardiogram from inside the esophagus, because you can get closer to the heart that way..and get a better view. I will be under for this procedure, of course. :)
Pulmonary Hypertension... kind of spooky.
One year ago during an echo, I was told there was elevated pressure in my heart, meaning I had mild pulmonary hypertension. In some people, mild cases often stay mild (depending on the cause). When I spoke about this to my cardiologist on the first visit, he said... "You probably do have PH! With the heart arrhythmia, high BP swings, mitral valve regurge..." Well geez! lol He's pretty blunt, but.. he's an awesome cardiologist, so I didn't mind that. He's aggressive and leaves no stone unturned. So anyway.....
Normally the pressure should be less than 25 but is now at 41. Laying down makes me gasp for air. Taking a shower or bath makes me gasp for air. I just picked up one of my ferrets...and am gasping for air as if I'd run a marathon. No fun.
I had a colonoscopy yesterday (because I'm 52), and the best part of that was.... the nurse putting the oxygen hose under my nose. I wasn't expecting to feel so good when she did that. It was so telling.
Today....
Kind of a tough day. I feel a lot of pressure in my chest, faint fluttery sensations, super dizzy, can't breathe well, head hurts, and I'm so tired. Did one load of laundry... and I've had it.
I've been avoiding talking about any of this, even as I've dealt with it over the months...as it's gotten worse. I'd been convincing myself it was this or that, blamed it on needing vitamins, needing my hormones balanced (which is being taken care of anyway), needing better nutrition (which I'm getting GREAT nutrition), then I blamed it on carvedilol... as it just got worse and worse. I thought, if I just didn't talk about it.... ever.
Well, not talking about it sure didn't help. Thinking it was nothing didn't help. And thinking it was just my imagination didn't help. In fact, my cardiologist showed me the EKG strips on the computer from the monitor and showed me what the A Fib looked like. It's real. And it's dangerous. In fact he said "This is extremely dangerous."
I look back at all the stuff I ignored, shrugged off, because I didn't have insurance and no other doctor would take that next step and look into it....
I recall one episode last year when I was at Winn Dixie in Mobile. I was in the check-out lane and my heart started with the 'palpitations.' Normally I can count the beats, which range from 160-180 BPM. This time...they were SO fast I couldn't count them. I missed so many trying to count and counted to 200 and gave up. It lasted some 25 minutes or so and stopped on its own. Everything hurt by the time I got to my car. I feel like I'd climbed a mountain, running, with someone beating me with a baseball bat the entire way. I was so tired by the time it was done.
I knew I needed a cardiologist, that I didn't want to just allow my GP (at the time) to prescribe carvedilol and have his in-house tech do echoes on me without my seeing a cardiologist. That inner voice EVER SINGLE DAY keep SCREAMING at me to INSIST on a referral NOW. It wouldn't let up. That voice would keep me awake at night, and it would be the first thing I'd think about when I'd wake up. I thought maybe it was because I believed I needed off the carvedilol. I'd told T about this and he said I should just tell Dr. E that I needed a referral. Period. So I did.
I had multiple episodes one week, about 4-5 about 1 1/2 days. During the day, sitting down doing nothing, laying down trying to sleep, and even once.. that woke me up during sleep. I thought maybe it was the prednisone I was on. Maybe it was just a bad week for my heart. Don't know. Either way, I knew I had to do something. Glad I did.
Tomorrow's procedure....
I go in at 9:30am for the T. E. E. and the procedure is to take place at approximately 11:30a. I'm not scared. But I'm a little grossed out that they're putting something down my throat. lol They're going to give me propofol, and I don't have any adverse reactions to that (as I found out yesterday), so I'll be out of it. I'm also a little bummed that I can't watch. I love to watch the echoes I have, so this is one little bummer about this particular procedure.
What do I expect?....
I guess I suspect they'll find my regurge is moderate. I trust that the doctor is correct in that if my regurge is severe that I would have issues with enlargement of the right side of my heart, and... I don't. So I think it's going to be okay in that respect. I also doubt that the mitral valve is having any serious issues, because they don't seem to SEE it on the previous echoes. But then, maybe there's another issue other than prolapse that can cause this? In previous echoes they've found moderate regurgitation WITHOUT seeing the valve prolapsing? Weird, if you ask me. Oh well, I'm not the cardiologist.
So.... I guess, I've had my workout on this laptop for the moment. Seriously, you've no idea what it takes out of me to do this, especially on days like this. Ugh. lol
Laterz, taterz! :)
Thursday, April 10, 2014
Stuck on Carvedilol, and are people like their pets?
Seriously?
So I asked my primary care physician (which I will refer to from here forward as my PCP) to wean me OFF this stuff due to the side effects, and he didn't think it was a good idea. I was on another medication like this one, only the side effects were worse, so I was switched to this one. *sigh* ugh. Long story short-as-possible, this stuff beyond sucks.
You haven't felt fatigue or weakness until you've been on a beta blocker. One is only on this stuff if one HAS to be. Anyway... I requested to se a cardiologist. Doctor was resistant at first, but I pushed because I don't like having my heart rhythm messed with by a PCP and prefer to be monitored by a specialist, especially due to the issues with my heart.
Mitral valve prolapse (MVP)
Moderate mitral regurge
Pulmonary hypertension, mild (secondary, and hopefully transient or will remain mild!)
Sinus bradycardia (many times my HR drops to low 50's or upper 40's for NO reason)
PCP finally gave in, and I saw the Cardio doc April 8. He is awesome! I'm on an event monitor for 30 days, and he ordered a new echo (for next week) to check the regurge and pressures, etc. He seems to think that the fatigue and weakness I feel now couldn't possibly be the Carvedilol, that my dose is too low to cause this. Well, I thought I was fatigued in the past, but compared to THIS.. I felt like a million bucks.
One of my ferrets, my little senior girl, Maui, was recently diagnosed with an AV block (which I DO NOT have). Without explaining the pathway of the heart and how an AV block affects the heart and body, let's just say I watch what she's going through and see myself in her. She walks a few feet to use the litter area and then collapses to rest before going back to her sleep sack. In my case, I literally have to put what little makeup I wear on... in stages, keeping a chair in the bathroom so I can sit down to rest before standing up to continue. I dry my hair sitting down. This is just scratching the surface.
As I type this, I have to keep placing my arms in my lap because my muscles simply can't hold my arms up long enough to type continuously.
All in all I do what I have to do despite what I feel, and I explained this to the cardio doc. All we can do is start with an echo and go from there. Maybe a sleep study in the near future, because that could cause bradycardia as well.
In Maui's case, her HR is dangerously slow. A ferret's HR should be between 150 and 300 BPM, and hers hovers between 55-108. I've taken her HR and it's been around 6-65 at rest. The fact that I can GET it "at rest" tells you something is wrong. Ferrets rarely stop moving when they're awake. Cardiologists at Auburn and across the country and working on her case, because she's too tiny to put a pacemaker in her body. A dog, yes, but she weighs 1.4 lbs. A pediatric pacemaker is still too big. Medications may help her feel better, but... it won't fix anything. Her heart is enlarged... so... we'll see what the specialists can do for her. She and I are both tired, her much more than I.
Now, as for me... the Dr. who is managing balancing my hormones is really awesome, treating the whole body, and seeing the connections between nutrients, etc., and...well...everything else. She's ran tests for many things, sans cortisol (due to my PCP putting me on prednisone, ugh!, for inflammation in my foot), and she's found deficiencies in many areas and is now treating those. I saw her yesterday and decided to make her my PCP. This decision was only somewhat easy, but she made it easy by not trying to keep everything 'in house' and telling me that I needed to see an ENT for chronic (out of nowhere nosebleeds) I've been having for a few months). My now previous PCP assumed I had a sinus infection, though I had no other symptoms, and gave me antibiotics. didn't help.
My vitamin D3 deficiency is now being treated with far superior Vitamin D3 (which I'm deficient in), an emulsified form (there's a reason for that), and rather than 50,000 units ONCE per week I'm on 12,500 units DAILY for 30 days, and then 5,000 units daily for 30 days before checking levels again.
She discovered so many things and is still testing what she can with that BC/BS will allow. Once our other house sells I will get the whole micronutrient panel done.
I know this was a long post, but there is good news in all of this. Prior to the big change in my life, prior to T and to obtaining insurance, GOOD insurance.. I wouldn't have known ANY of this. So many times things were only 'half done' by a couple of well-meaning doctors who could only do so much, and little done by a couple of doctors who shrugged off symptoms and signs. Funny how much insurance coverage will do in the hands of the write doctors.
So I now have a new PCP and one who is getting the ball rolling in the right direction... and fast. I get my cortisol levels checked on Monday, echo next week, 2 other sets of labs done yesterday to wait results on..... and maybe the event monitor will pick something up.
Oh, and for those of you who I have a feeling will google some things, if you do google pulmonary hypertension... don't freak out! Secondary PH is caused by something else (hence the 'secondary'), and if that something else is addressed, the PH should resolve. The cardio doc said I probably do have PH if it was found on my echo last year, which they did find a mild version of it, because of the HBP, moderate regurge....most likely made even worse by my way too slow HR (bradycardia).
If you read about the symptoms you will most likely find that it says if it's not treated, simple daily chores can become almost impossible... and you may recall I've posted those symptoms (just by default) off an on about myself here. No biggie. Could be the carvedilol, despite the docs saying my dosage is too low for that. OR.. could be the PH. OR it could be something else! Right now it doesn't mean ANYTHING until my cardiologist and/or a pulmonologist tells me otherwise! And they do a 6 minute walk test, then perhaps a right heart cath (I've only had a L heart cath) to test what the pressures ACTUALLY are, as opposed to estimating via dopplar echo. No one has done the walk test or the RHC. No one has said squat. So don't consult Dr. Google and freak out and say anything to my son, etc. Okay? Okay. :)
Whew. I'm tired now. lol
Off to let my laptop charge and to scrounge up some lunch.
Toodles!
Oh, PS.... coming off carvedilol, for those wondering why I don't 'just stop taking it.': it's a medication for heart arrhythmia and/or high blood pressure. In my case it was for my heart arrhythmia, which was getting worse, but then my BP began to rise (not sure why). I accidentally skipped a dose the day I saw my new cardiologist, and my BP shot up to about 178/100. NOT good. But the biggest reason to not even miss a dose (timing is really everything for this reason) is that it can send your heart into crazy arrhythmia.... it can cause very bad things to happen. A person has to be carefully weaned off these medications, monitored by a doctor. dangerous to do so by yourself.
So I asked my primary care physician (which I will refer to from here forward as my PCP) to wean me OFF this stuff due to the side effects, and he didn't think it was a good idea. I was on another medication like this one, only the side effects were worse, so I was switched to this one. *sigh* ugh. Long story short-as-possible, this stuff beyond sucks.
You haven't felt fatigue or weakness until you've been on a beta blocker. One is only on this stuff if one HAS to be. Anyway... I requested to se a cardiologist. Doctor was resistant at first, but I pushed because I don't like having my heart rhythm messed with by a PCP and prefer to be monitored by a specialist, especially due to the issues with my heart.
Mitral valve prolapse (MVP)
Moderate mitral regurge
Pulmonary hypertension, mild (secondary, and hopefully transient or will remain mild!)
Sinus bradycardia (many times my HR drops to low 50's or upper 40's for NO reason)
PCP finally gave in, and I saw the Cardio doc April 8. He is awesome! I'm on an event monitor for 30 days, and he ordered a new echo (for next week) to check the regurge and pressures, etc. He seems to think that the fatigue and weakness I feel now couldn't possibly be the Carvedilol, that my dose is too low to cause this. Well, I thought I was fatigued in the past, but compared to THIS.. I felt like a million bucks.
One of my ferrets, my little senior girl, Maui, was recently diagnosed with an AV block (which I DO NOT have). Without explaining the pathway of the heart and how an AV block affects the heart and body, let's just say I watch what she's going through and see myself in her. She walks a few feet to use the litter area and then collapses to rest before going back to her sleep sack. In my case, I literally have to put what little makeup I wear on... in stages, keeping a chair in the bathroom so I can sit down to rest before standing up to continue. I dry my hair sitting down. This is just scratching the surface.
As I type this, I have to keep placing my arms in my lap because my muscles simply can't hold my arms up long enough to type continuously.
All in all I do what I have to do despite what I feel, and I explained this to the cardio doc. All we can do is start with an echo and go from there. Maybe a sleep study in the near future, because that could cause bradycardia as well.
In Maui's case, her HR is dangerously slow. A ferret's HR should be between 150 and 300 BPM, and hers hovers between 55-108. I've taken her HR and it's been around 6-65 at rest. The fact that I can GET it "at rest" tells you something is wrong. Ferrets rarely stop moving when they're awake. Cardiologists at Auburn and across the country and working on her case, because she's too tiny to put a pacemaker in her body. A dog, yes, but she weighs 1.4 lbs. A pediatric pacemaker is still too big. Medications may help her feel better, but... it won't fix anything. Her heart is enlarged... so... we'll see what the specialists can do for her. She and I are both tired, her much more than I.
Now, as for me... the Dr. who is managing balancing my hormones is really awesome, treating the whole body, and seeing the connections between nutrients, etc., and...well...everything else. She's ran tests for many things, sans cortisol (due to my PCP putting me on prednisone, ugh!, for inflammation in my foot), and she's found deficiencies in many areas and is now treating those. I saw her yesterday and decided to make her my PCP. This decision was only somewhat easy, but she made it easy by not trying to keep everything 'in house' and telling me that I needed to see an ENT for chronic (out of nowhere nosebleeds) I've been having for a few months). My now previous PCP assumed I had a sinus infection, though I had no other symptoms, and gave me antibiotics. didn't help.
My vitamin D3 deficiency is now being treated with far superior Vitamin D3 (which I'm deficient in), an emulsified form (there's a reason for that), and rather than 50,000 units ONCE per week I'm on 12,500 units DAILY for 30 days, and then 5,000 units daily for 30 days before checking levels again.
She discovered so many things and is still testing what she can with that BC/BS will allow. Once our other house sells I will get the whole micronutrient panel done.
I know this was a long post, but there is good news in all of this. Prior to the big change in my life, prior to T and to obtaining insurance, GOOD insurance.. I wouldn't have known ANY of this. So many times things were only 'half done' by a couple of well-meaning doctors who could only do so much, and little done by a couple of doctors who shrugged off symptoms and signs. Funny how much insurance coverage will do in the hands of the write doctors.
So I now have a new PCP and one who is getting the ball rolling in the right direction... and fast. I get my cortisol levels checked on Monday, echo next week, 2 other sets of labs done yesterday to wait results on..... and maybe the event monitor will pick something up.
Oh, and for those of you who I have a feeling will google some things, if you do google pulmonary hypertension... don't freak out! Secondary PH is caused by something else (hence the 'secondary'), and if that something else is addressed, the PH should resolve. The cardio doc said I probably do have PH if it was found on my echo last year, which they did find a mild version of it, because of the HBP, moderate regurge....most likely made even worse by my way too slow HR (bradycardia).
If you read about the symptoms you will most likely find that it says if it's not treated, simple daily chores can become almost impossible... and you may recall I've posted those symptoms (just by default) off an on about myself here. No biggie. Could be the carvedilol, despite the docs saying my dosage is too low for that. OR.. could be the PH. OR it could be something else! Right now it doesn't mean ANYTHING until my cardiologist and/or a pulmonologist tells me otherwise! And they do a 6 minute walk test, then perhaps a right heart cath (I've only had a L heart cath) to test what the pressures ACTUALLY are, as opposed to estimating via dopplar echo. No one has done the walk test or the RHC. No one has said squat. So don't consult Dr. Google and freak out and say anything to my son, etc. Okay? Okay. :)
Whew. I'm tired now. lol
Off to let my laptop charge and to scrounge up some lunch.
Toodles!
Oh, PS.... coming off carvedilol, for those wondering why I don't 'just stop taking it.': it's a medication for heart arrhythmia and/or high blood pressure. In my case it was for my heart arrhythmia, which was getting worse, but then my BP began to rise (not sure why). I accidentally skipped a dose the day I saw my new cardiologist, and my BP shot up to about 178/100. NOT good. But the biggest reason to not even miss a dose (timing is really everything for this reason) is that it can send your heart into crazy arrhythmia.... it can cause very bad things to happen. A person has to be carefully weaned off these medications, monitored by a doctor. dangerous to do so by yourself.
Thursday, April 3, 2014
Foot issues...still
Have to deal with a cast on my foot at the moment. This is not fun, and I had to call this morning to tell them it either needs to be re-done or taken off and left off. A wrinkle, something, don't know... is pressing on the front of my ankle, and I got absolutely NO sleep last night. Ortho doc is in Sx all day today so I have to wait this out. :/ It sucks, that's all I know. No more.
I still can't figure out what the heck is going on here. How did I actually fracture my foot?? Doc did an X-ray, not a bone scan. The bone scan done prior to this visit revealed the fracture. But how weird. ortho doc said, "You probably had plantar fascists, which is what I see here in this often most of the time. But it doesn't cause swelling or pain like you have." He then went on to say we have to take care of the fracture issue, then look at what may else be going on. "Else?" Ugh.
I certainly can't figure how I fractured a foot I was babying all this time. I put more weight on the other side and babied the side that has the break. I simply do NOT get this. But oh well. I've just had it.
Doc also prescribed Tramadol, something I would ordinarily be strictly against taking. I don't even like Rx NSAIDs (side effects are nasty and not worth it). But this ongoing, chronic pain is getting to me now. But I can't take the Tramadol because of my heart, and because of the Topamax. It lowers the seizure threshold and pretty much guarantees I will have seizures. And it slows breathing, etc., and I already have issues with my heart and too slow HR, bp dipping too low, etc.... it could cause major (scary major) issues. So pharmacist says no go.
Caffein headache. Well. At least I can fix that. ;)
I still can't figure out what the heck is going on here. How did I actually fracture my foot?? Doc did an X-ray, not a bone scan. The bone scan done prior to this visit revealed the fracture. But how weird. ortho doc said, "You probably had plantar fascists, which is what I see here in this often most of the time. But it doesn't cause swelling or pain like you have." He then went on to say we have to take care of the fracture issue, then look at what may else be going on. "Else?" Ugh.
I certainly can't figure how I fractured a foot I was babying all this time. I put more weight on the other side and babied the side that has the break. I simply do NOT get this. But oh well. I've just had it.
Doc also prescribed Tramadol, something I would ordinarily be strictly against taking. I don't even like Rx NSAIDs (side effects are nasty and not worth it). But this ongoing, chronic pain is getting to me now. But I can't take the Tramadol because of my heart, and because of the Topamax. It lowers the seizure threshold and pretty much guarantees I will have seizures. And it slows breathing, etc., and I already have issues with my heart and too slow HR, bp dipping too low, etc.... it could cause major (scary major) issues. So pharmacist says no go.
Caffein headache. Well. At least I can fix that. ;)
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So much for strong suggestions
ME22 & NE23. NEFL Eagle cam. Screen shot and photomanipulation by me. Copyright American Eagle Foundation. My physical jour...
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...with no excuses. I've come to a crossroads where my f'd up health and maintaining balance in my life intersect in such a way ... -
Sitting in the silence of the hour at hand, and I can almost hear myself think... if not for the crowding thoughts begging me to find answer...