So, a very small health update. One might say, blink and you'll miss it.
Over all since my MRI results my outlook on all things health related has improved immensely. Sure I still get frustrated when illness gets in the way of attending events I would LOVE to go to (Grrr, I wanted me some BBQ on Sunday C & A!), still feel a little down after a day spent in bed waiting for an episode of Tachycardia to pass knowing the alternative is the third worst hospital in our small country. Just when I forget the pain that comes with ovarian cysts I get one, but yeah overall things feel pretty good. I'm still looking for whatever autoimmune issue is going on, I'm still a little nervous as to whether my December echo will show continuing decline in heart function, but I also feel pretty tranquil.
In other news, we have become a foster home to some little sick kittens this week. The Cat Protection league is overflowing with homeless kittens at the moment, so we volunteered to take some in. The boys are learning kindness and gentleness towards our little baby cats. I get to feel like I have babies to look after again and Craig.... well Craig is just a very good man who has trouble saying no to me so he's along for the ride as well. We have the kittens for 2-4 weeks when they will be re homed. So not too long. You know - blink and you'd miss it!
Benji and James are both loving morning kindy and looking forward to starting school next year. Yes they already talk about it, we've chosen a school I'm really happy with and they will start preschool visits early next year. The school we have chosen is very different to where I thought the boys would go, but that's a whole 'nother post.
All this school talk just makes me realise how grown up my boys are getting. They play very nicely together on the whole now, use their words to sort things out more than their feet or fists, and overall seem to enjoy each others company more. You remember people telling you when you are holding your newborn(s), slightly sleep deprived but totally in love, to enjoy every minute of it as they grow so quickly. It's true.
Blink and you'd miss it.
Monday, November 23, 2009
Wednesday, November 11, 2009
Freedom. Relief. Joy.
Yesterday i had the review with my cardiologist I have been waiting for since my MRI. I got answers. Perhaps not all the answers, but enough to feel as though a weight has left my shoulders. To feel free from worrying about when my heart would give out, to be relieved with a firm diagnosis and prognosis and immense joy in sharing all this with the many good friends and wonderful family. In this long journey I have walked since the twins were born, no matter how I may have felt at the time I was never alone. And when I felt I was too tired to keep in touch with people and would lose all my friends, they would rally around and take away that responsibility. When I felt I didn't know many other Mums in my area due to chronic illness, I suddenly saw the wonderful kind hearted ladies from the twins kindy.
So it is with immense joy I share, I am a Peripartum Cardiomyopathy SURVIVOR.
All the tests indicate that I experienced heart failure due to pregnancy. There is no known reason why this happens to some women, but thoughts are that it is autoimmune and perhaps a genetic susceptibility plays a role. My heart function was down to 35% and failed to improve at first with all the right treatments. It actually seemed to be dropping at one point and discussions with my cardiologist of a future transplant if things continued to get worse and talks of a pacemaker were things never far from my mind.
Neither were the months before I got my diagnosis when I thought I was the worlds worse mother. I was fighting my body to get up and attend to my gorgeous babies, but constantly tired, struggling to breath (I felt like I was drowning), and my heart rate was always beating loudly and much too fast in my ears. I felt selfish that I couldn't push myself more, harder, to be the right kind of Mum. Even after diagnosis I couldn't separate my illness from those feelings of being a bad parent.
But now. I am much kinder to myself. I was not the worlds worse Mother. I was just a sick Mum, doing my best. There is joy in no longer carrying around that guilt.
And one of the greatest things, that this form of cardiomyopathy is the one you are most likely to recover from. The greatest risk of relapse is if I were to get pregnant again, but I've got my two little dudes and I'm immensely happy with that.
I do also have arrhythmia's - SVT and a form of SVT, Inappropriate sinus tachycardia. My heart still races from time to time for no apparent reason so I must be careful with how much activity I do at any one time, what I eat and basically living a healthy life.
There is still the issue of my mystery illness - a likely autoimmune condition causing inflammation somewhere in my body resulting in my aches, fever, fatigue etc but my cardiologist is referring me to the Rheumatologist he works alongside and is sending a letter to my immunologist and amongst other things I will be tested for Addison's. I have a fabulous cardiologist, who will see me again next month to ensure my heart function has stabilised again (Not dropping below the 50% it's at now)
So Fingers crossed gone are the days of exercise restrictions, Mother guilt and fear of future. Here's to all of you, my supporters, my family, my friends. I have made it this far in one piece because of you!
And that old you only have five years to live after diagnosis? Pfft, thanks to modern medicine we'll be having a HUGE party that day! You can hold me to it!
So it is with immense joy I share, I am a Peripartum Cardiomyopathy SURVIVOR.
All the tests indicate that I experienced heart failure due to pregnancy. There is no known reason why this happens to some women, but thoughts are that it is autoimmune and perhaps a genetic susceptibility plays a role. My heart function was down to 35% and failed to improve at first with all the right treatments. It actually seemed to be dropping at one point and discussions with my cardiologist of a future transplant if things continued to get worse and talks of a pacemaker were things never far from my mind.
Neither were the months before I got my diagnosis when I thought I was the worlds worse mother. I was fighting my body to get up and attend to my gorgeous babies, but constantly tired, struggling to breath (I felt like I was drowning), and my heart rate was always beating loudly and much too fast in my ears. I felt selfish that I couldn't push myself more, harder, to be the right kind of Mum. Even after diagnosis I couldn't separate my illness from those feelings of being a bad parent.
But now. I am much kinder to myself. I was not the worlds worse Mother. I was just a sick Mum, doing my best. There is joy in no longer carrying around that guilt.
And one of the greatest things, that this form of cardiomyopathy is the one you are most likely to recover from. The greatest risk of relapse is if I were to get pregnant again, but I've got my two little dudes and I'm immensely happy with that.
I do also have arrhythmia's - SVT and a form of SVT, Inappropriate sinus tachycardia. My heart still races from time to time for no apparent reason so I must be careful with how much activity I do at any one time, what I eat and basically living a healthy life.
There is still the issue of my mystery illness - a likely autoimmune condition causing inflammation somewhere in my body resulting in my aches, fever, fatigue etc but my cardiologist is referring me to the Rheumatologist he works alongside and is sending a letter to my immunologist and amongst other things I will be tested for Addison's. I have a fabulous cardiologist, who will see me again next month to ensure my heart function has stabilised again (Not dropping below the 50% it's at now)
So Fingers crossed gone are the days of exercise restrictions, Mother guilt and fear of future. Here's to all of you, my supporters, my family, my friends. I have made it this far in one piece because of you!
And that old you only have five years to live after diagnosis? Pfft, thanks to modern medicine we'll be having a HUGE party that day! You can hold me to it!
Sunday, November 8, 2009
Thank you all my doctor House's!
I have been so slack, and for that I apologise! I have read all of your comments to me in my last blog post searching for a Dr. House and they have been so helpful and encouraging.
I have never been tested for Addisons so will follow that up. There is a family history of rheumatoid arthritis but I have so far tested negative.
Thank you so much Mama Bonn, and while I really hate that anyone else is going through this it is interesting it's something so many of us PPCM'ers are going through. I found your post so thoughtful and kind, it really made me feel better.
I do have an appointment with my Cardiologist on Tuesday and am interested to see what he has to say about the slight decline in my heart function.
In the mean time my latest "flare-up" seems to be subsiding, although I have started to over do it since I feel so much better so here's hoping I don't trigger another one! I've spent much time with my new little nephew, the twins had a sleep over with a gorgeous friend of theirs from kindy, we went swimming and to the movies yesterday and to birthday parties and visiting great grandparents today. So a whirlwind busy weekend but I have managed a post, albiet a small one!
I have never been tested for Addisons so will follow that up. There is a family history of rheumatoid arthritis but I have so far tested negative.
Thank you so much Mama Bonn, and while I really hate that anyone else is going through this it is interesting it's something so many of us PPCM'ers are going through. I found your post so thoughtful and kind, it really made me feel better.
I do have an appointment with my Cardiologist on Tuesday and am interested to see what he has to say about the slight decline in my heart function.
In the mean time my latest "flare-up" seems to be subsiding, although I have started to over do it since I feel so much better so here's hoping I don't trigger another one! I've spent much time with my new little nephew, the twins had a sleep over with a gorgeous friend of theirs from kindy, we went swimming and to the movies yesterday and to birthday parties and visiting great grandparents today. So a whirlwind busy weekend but I have managed a post, albiet a small one!
Monday, November 2, 2009
Paging Dr. House
Do you enjoy watching House? Do you like medical mysteries and solving puzzles? Ok all my lovely friends and blog followers, I have seen seven different specialists that all agree there is something going on with me, but so far can not figure out what it is, so if you'd like to play at being House have a read over my symptoms, current diagnoses, blood test results and leave me a comment.
And yes I'm serious. Any ideas would be hugely appreciated, because right now with so many doctors at a loose end, I want to be proactive in my care but have also run out of ideas for what to test for/check next.
Current diagnoses: Dilated Cardiomyopathy. Current Heart function at 50%; low normal.
Polycystic Ovarian syndrome along with Insulin resistance
Sinus and supraventricular Tachycardias
Fatty Liver
Current symptoms: These come and go and last up to a few weeks at a time:
Extreme fatigue and lack of energy
Aching limbs to the point it hurts to move
Upset stomachs
Increased resting heart rate to 110, up to 180 with activity
Current tests; ESR; 80 (abnormal inflammatory marker)
CRP; 45 (More sensitive marker for inflammation, also abnormal)
Slightly Abnormal liver function tests
Tested for Celiacs, negative. Tested for hepatitis, negative. Tested for Lupus negative. tested for arthrits, negative.
Cardiac MRI shows a drop in heart function from 58% to 50% but still a lot better than when I was diagnosed with heart function of 35%
Most doctors involved think it is autoimmune, but don't know what.
If I remember other symptoms or tests I'll edit this later, but so far off the top of my head this is it. Thanks everyone!
And yes I'm serious. Any ideas would be hugely appreciated, because right now with so many doctors at a loose end, I want to be proactive in my care but have also run out of ideas for what to test for/check next.
Current diagnoses: Dilated Cardiomyopathy. Current Heart function at 50%; low normal.
Polycystic Ovarian syndrome along with Insulin resistance
Sinus and supraventricular Tachycardias
Fatty Liver
Current symptoms: These come and go and last up to a few weeks at a time:
Extreme fatigue and lack of energy
Aching limbs to the point it hurts to move
Upset stomachs
Increased resting heart rate to 110, up to 180 with activity
Current tests; ESR; 80 (abnormal inflammatory marker)
CRP; 45 (More sensitive marker for inflammation, also abnormal)
Slightly Abnormal liver function tests
Tested for Celiacs, negative. Tested for hepatitis, negative. Tested for Lupus negative. tested for arthrits, negative.
Cardiac MRI shows a drop in heart function from 58% to 50% but still a lot better than when I was diagnosed with heart function of 35%
Most doctors involved think it is autoimmune, but don't know what.
If I remember other symptoms or tests I'll edit this later, but so far off the top of my head this is it. Thanks everyone!
Wednesday, October 21, 2009
It's all in the way you say it...
Taking some time for writing, I am sitting upstairs with an ear out for my two little guys playing with their Dad and making dinner. I'm also wondering if the crazy concoction I thought up to be our dinner will work, and if the preparation should actually be being overseen by me, since it was as I said, my idea.
The boys have picked out a movie they particularly like at the moment, and have watched it at least once a day since their Father bought it home from the video store. With having started morning kindy they have been so tired and not wanting to do anything once they get home except for watch this movie. This hasn't worried me so much until this afternoon, when they began quoting lines from the movie.
And maybe about five minutes ago when James pushed play once again, and one of the characters asks "For a little help". The reply he got from James was "No, Never!"
So I was sitting here pondering the fact that our children have so quickly picked up on intonation. On how often it is they say something now that is so funny at the time, but doesn't translate when I later try to explain it. So often it's the way they say something, which is quite hard to reenact as an adult (or, you know, the adult I pretend to be).
Just before Ben was drawing a picture of Thomas the Tank Engine for James, and they were discussing which part to draw next. Poor James thought Ben was drawing a picture of him wearing a Thomas top, so he kindly suggested adding arms. With a slightly exasperated look Ben explained that Thomas does not have arms, but in fact has wheels and he would draw wheels. James just shrugged, then when he was asked again what should be drawn next he offered the suggestion of legs. Ben looked at him as if he was thinking "Have I not just explained this to you?" Then said in a semi-condescending, yet partially kind tone "Okay, he will have legs. Just this once."
So yes, their speech may not yet be fully developed and may lack a little clarity at times, but they have that whole intonation thing down pat.
The boys have picked out a movie they particularly like at the moment, and have watched it at least once a day since their Father bought it home from the video store. With having started morning kindy they have been so tired and not wanting to do anything once they get home except for watch this movie. This hasn't worried me so much until this afternoon, when they began quoting lines from the movie.
And maybe about five minutes ago when James pushed play once again, and one of the characters asks "For a little help". The reply he got from James was "No, Never!"
So I was sitting here pondering the fact that our children have so quickly picked up on intonation. On how often it is they say something now that is so funny at the time, but doesn't translate when I later try to explain it. So often it's the way they say something, which is quite hard to reenact as an adult (or, you know, the adult I pretend to be).
Just before Ben was drawing a picture of Thomas the Tank Engine for James, and they were discussing which part to draw next. Poor James thought Ben was drawing a picture of him wearing a Thomas top, so he kindly suggested adding arms. With a slightly exasperated look Ben explained that Thomas does not have arms, but in fact has wheels and he would draw wheels. James just shrugged, then when he was asked again what should be drawn next he offered the suggestion of legs. Ben looked at him as if he was thinking "Have I not just explained this to you?" Then said in a semi-condescending, yet partially kind tone "Okay, he will have legs. Just this once."
So yes, their speech may not yet be fully developed and may lack a little clarity at times, but they have that whole intonation thing down pat.
Sunday, October 4, 2009
Spring school Holidays; A Zoo Visit
Because it is the school holidays, the weather here has turned from lovely early Spring sunshine and gentle breezes to constant rain. So all plans of outdoor picnics and strolls to the park have been postponed and we have been concentrating on indoor activities. However the sun finally peaked out, for just one day, near the end of last week. So I decided to treat our little treasures with a trip to the zoo. Which for some reason was not a great experience for Ben, as chronicled in the following pictures, which also go to show just how different twins can be...
"Seriously, the zoo? Won't I get dirty?"
"Seriously, the zoo? Yes! Thank you Mama!"
"Yes, Gibbons. Very nice. Lets move on."
"Wow Mama, look!"
"Look, these kangaroos are all well and good
but my trousers are getting mucky"
"Cheese, Mama this is fun!"
"Right time to go home."
"Wait, I don't think we've seen these ones....."
Wednesday, September 30, 2009
Never fear, I am still here!
Where have I been you may ask? Well, at my new favourite place. The Gym. Really. Truely I have. No seriously, stop laughing. This exercise allergic, only runs if being chased, scared of getting sweaty or dirty girl has joint a gym. And I LOVE it. It helps a lot that I have found the right one for me, a supportive environment, nice and small, and people with knowledge of heart conditions and programs developed just for me.
And I have all the motivation I would ever need. I have overcome heart failure so there's no WAY I am letting this liver condition get any worse. I have talked about that right? I have so many reasons to get fitter (To get better, strengthen this tired heart, lose weight, gain confidence.....) and I have so much support I feel this is really going to work. And by that I mean it will help me feel semi-normal again.
Because who am I kidding, I was only semi-normal to begin with ;)
Stay tuned, I'll be posting more regularly over October! :)
And I have all the motivation I would ever need. I have overcome heart failure so there's no WAY I am letting this liver condition get any worse. I have talked about that right? I have so many reasons to get fitter (To get better, strengthen this tired heart, lose weight, gain confidence.....) and I have so much support I feel this is really going to work. And by that I mean it will help me feel semi-normal again.
Because who am I kidding, I was only semi-normal to begin with ;)
Stay tuned, I'll be posting more regularly over October! :)
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