Seven years…

On the 22nd marks 7 years since I went and had a minor day procedure that turned in Toxic shock syndrome…

I remember the couple days before hand we were away with our baby visiting family the drive home on the Sunday I was nervous as all, my husband couldn’t understand why but for me it was the first actually time I had been into hospital besides having a baby. It was too be the first time I had a general anaesthetic. Maybe I knew things were going to go wrong. The morning of I had to leave my baby for the day which was hard enough as it was I went in all the pre-op went well although my obgyn made me take a pregnancy test before hand WTH…a swab of my 2 times failed episiotomy and granulation tissue might of been more beneficial.

I went in for surgery all good, came out thought all was good. Nurses noticed I had excess bleeding so they call my dr, she decides to pack it they all if I want to stay overnight or go home. Ofcourse I said go home. Between the would packing and me deciding to go home the next day wouldn’t be good. The nurses were amazing and told me I was not allowed to do a thing no moving, no jobs no anything, I had been through enough and needed to heal and rest.

The next night I was back in emergency high temps, low blood pressure, high heart rate, my kidneys had no output, my liver levels through the roof. Within hours they had organised a nurse for my care and I was being admitted to ICU. I was sleeping alot luckily do I don’t remember it all but I do remember them loading up my bed to move me to ICU, needing all the oxygen, portable heart stuff etc incase anything happened on the move. Luckily for me I don’t think I went backwards I only improved. I spent my son’s first Christmas in hospital .. I was still in ICU Christmas morning and I still remember that being a emotionally hard morning for me, hiding my tears from anyone who walked in. But somehow they moved me to a ward that day. I was told this wouldn’t happen due to low staff levels etc but it made my day.

I was extremely lucky and I left hospital a week later without any ongoing major issues BUT my body has never been the same. The following years have been filled with random things, pleurisy, miscarriages, trouble falling pregnant after no issues with my son, preeclampsia, thyroid issues, low iron, and now POTS. I do wonder if it’s all related… Or if I never got sepsis / toxic shock syndrome would I be where I am today.

December can be a little painful with this anniversary and the anniversary of my first miscarriages but I was feeling great, exercising, running and then I just caught my kids cold… Now I’ve crashed back down 😭😭 I use to get a cold or two only a year, this year since I started fludrocortisone has been brutal!!! Hopefully I’m all good by Christmas Day and hopefully no fevers or crazy tachycardia this time 🤞🤞

2021 you’ve been strange and confusing and not the ending I was hoping for … 2022 please be more predictable and easier 🤞🤞

What has helped my POTS the most?

It’s good to look back and see how much I’ve improved BUT I don’t like the fact alot of it is reliance on medication. I’m all for medicine antibiotics saved my life almost 7 years ago BUT arghhh long term medications not something I like to do.

Anyway I’m on Metoprolol this really helped my chest pain, palpatations and lower my heart rate, it use to go high going to stairs etc. I now also take Fludrocortisone and this was a game changer, dizziness went away, pretty fast too but fluid retention mehhhhh is all gone on my mid region and even though it’s only a few kgs it’s still a few more then I want! But this medication gave me back my ability to exercise without being scared of fainting.

Last summer I tried compression tights, turns out they weren’t good ones. I bought 2xu ones and bliss Soo amazing I can feel my brain working better with them and more focused. I now have bike shorts for summer too.

Salt, I was adding this to did but I don’t think I really added enough so I also take a few salt tablets to bump it up, so they work in not sure but in combination I guess they do.

Fluids.. I was always a great water drinker so when I was told I was dehydrated I couldn’t understand how…. Little did I know I had POTS. My current fluids are 1.5L plain water 1.5L electrolytes a day. I drink more electrolytes in the water then arvo. I’m too worried about losing my electrolytes in summer as I don’t want to get symptomatic.. but whatever fluids I drink with exercise I don’t count in my daily total.

Exercise… I do feel this has improved things alot. Currently I’m doing 5 sessions a week, 3x running around 25 mins a session, 2 strength sessions that take approx 30 mins. Being back running is Soo good for my whole body. It’s time that my brain is clear I’m not thinking about anything which is bliss.

It’s hard to say what is the magic element that’s helping me, all in combination I guess. Hopefully I can decrease medications after summer and see if I actually still need them all 🤞🤞

2021 what a year you have been!

For many 2020 was a year of everything was different, unpredictable, uncertain. For me I loved lockdown, the chance to take a breath and not be racing around to school drop offs, swimming lessons, kids sports, netball for me and all of the like. It was nice to just take a break for awhile. But then 2020 went on and I ended the year with POTS. But i went oh well I’ll get some medication after a stress echo in January 2021 and all will be fine.. that’s what i thought.

2021 had some grand plans for me, it was the first time in 7 years i actually had 2 kid free days, my youngest was off to early entry Kindy.. i was excited when i had her booked in mid 2020 before i became unwell. This year was meant to be MY year, i was going to rediscover myself, properly get back into running and with 2 years of kindy before she starts school i was going to figure out what i wanted to do, i was going to work on my business even more and at the same time decide if i wanted to go back to my Professional job (especially since i had 5 years of uni degrees i should really use) or if i was going to retrain in a different area. But 2021 didn’t plan out as expected.

January started, fresh year and i had the dreaded Stress Echo test. I survived it felt a bit horrid after but i was given medication to help with the Palpations, tachycardia etc. This helped immensely but before long i noticed my blood pressure was dropping even lower. I knew from everything i read that exercise was a big part of things improving. Rowing machine, what are the chances we actually have one at home and i’ve been using it for years, easy i’ll start using that again. In december the walk 2 streets to school and back would leave me dizzy, fatigued, high heart rate, any exercise was a bit gross. By january i was then doing little 5 minute slow, basically no resistance rowing sessions, this was wrecking me. By end of january school was back, kindy had started and i knew walking was going to be beneficial so 2 days a week i was walking to school drop off and continuing on to kindy … some days my heart rate would hit 160 doing this, sometimes i would see random spikes at 180 just from walking!!! But with time it got easier. I noticed every time i had a cold or something i would loose 2 weeks and go back a big step, it was frustrating to say the least.

Months went on and I realised I couldn’t work on my business the way I use to. I couldn’t do those late nights I use to do and I really needed those to make my business work. I scaled back my range. A couple months later and I was actually reducing my orders and hitting pause for awhile… I opened it all back up for Christmas orders and I love receiving people’s positive feedback, made it all worth while. It really pains me to some extent that I had to reduce my business in order to keep my body a bit happier.

Looking back on the year I seem to have just plodded along through feeling blah, having no energy, being in a haze, feeling dizzy.. fainting once on stairs, appointments, reading things, trying to figure all the health stuff out.

One of the best parts has been exercising again, seeing an exercise physiologist and actually getting a bit of a plan forward… The fatigue sucked, the having something to focus on has been amazing and for that time in exercising I can feel normal again. I can run 3.5km again, oh gosh that was the best feeling ever the first time, the achievement I felt. Hopefully I can now build up to 5km soon. I feel that I’m now actually prioritising it all and where I thought I wouldn’t have time I am, putting me first. It’s been an unexpected positive of the year amongst all the rubbish. Turns out I’m getting back into running just not the way I was expecting to!

The must unexpected change is on Monday I’m starting part time work. My Christmas orders are almost finished on my business luckily. A friend asked if I wanted to help out, I thought it couldn’t work but turns out I can amongst school holidays and Christmas holidays. It’s been 7 1/2 years since I worked as a Landscape architect and I’ll be back in the game.. How on earth is 2021 ending with this?? To some degree it makes soo much sense 2021 has been one mighty unpredictable year…

Soo amongst all the craziness of my health my year may have worked out in the end..2021 has made my cry, want to cry, tested my patience and resilience (I have hated that word), it’s frustrated me, surprised me, opened my eyes to a new world, tested my relationships, questioned relationships, made me lonely, made me smile, made me laugh and do you know what, you can’t change everything why not just laugh about it. The best laughs have been the unexpected ones… Although I must say I watched a episode of Bluey with my kids this morning and it was funny, my kids were laughing I was laughing Soo good

I don’t think I can even predict how 2022 will go…

Will exercise be the magic fix for my POTS?

I was fortunate that I only started getting symptoms of my POTS last year and I was actually diagnosed rather fast. I wasn’t given much advice from doctors besides drink water, electrolytes, eat salt, avoid alcohol.

99% of my information has come from webinars, websites and the all important POTS support Facebook groups.. gosh what would you do without those!! The one thing I noticed everywhere was the importance of exercise.

Pretty fast I started to do little bits. I remember in January the fatigue from using the rower for 5 minutes was crazy.. deconditioning at its best. In December walking to school in the warm weather meant i would get home feeling I could faint.

By end of January school was back, my daughter started kindy so that meant 2 days a week I would walk my son to school and continue onto kindy. My heart rates would spike considerably on this walk. I kept going because I knew it was good for me, it would fatigue me that’s for sure. I was starting to slowly add in using a spin bike and the rower but my heart rates would spike and I would get tired. I wasn’t really getting anywhere. I looked at CHOP and realised of gosh how am I going to do that it’s soo many days a week! I was making summer good excuses because I was feeling horrid. I was still getting dizzy all the time which never helped wanting to do much but I knew I had to one for my own sanity and two to give myself a chance.

One day I was running after my son on his bike i would of only been running after him for 400m.. I got home went upstairs got water and electrolytes. I then walked downstairs, next thing I know I’m falling down the stairs my butt and arm got the impact. I had no recollection of slipping falling just the impact I sat there tears burst out I thought I had really hurt my shoulder / arm but phew it eventually wanted to move properly. I must of blacked out. Obviously at my next cardiologist appointment he was concerned at this happening so he put me on Fludrocortisone.. This fixed the dizziness and I felt amazing again. I was ready to give this exercise a real go, I was finally in the headspace of being able to think so I found a local Exercise physiologist to give this all a go. 18 months ago I could walk where every I wanted pushing my daughter in the pram, play netball every week even in the heat, run.. not that I had been regularly running but I physically still could when i did go for a run.

My exercise and energy was getting better but then it crashed down hard. my iron was low, my GP wanted to know the cause so i had to go for a Colonoscopy. The prep was annoying! the procedure was relatively straight forward and i had an iron infusion too but where i thought i would be back running again without an issue a few days later this wasn’t the case. It took 2 weeks for the fatigue and horridness to dissapear and i was still feeling rubbish. Finally a month later i had my summer check up with the cardiologist. he increased my Fludocortisone, within days i had noticed my energy coming back i was a new person again. i could exercise properly, i could run, i wasn’t crazy fatigued anymore. At the same time i had increased my salt, electrolytes etc.

Now a couple months later and i’m up to running 4.2km, hopefully by end of january i’m up to 5Km runs. 5 days exercise a week, plus with the medication and i’m feeling good right now. its a far change from last summer. When i was fatigued i backed off my exercise and i noticed my heart rate spiking again and since i’m back to 5 days it hasn’t done it which is crazy the impact exercise can have on our bodies with POTS. i guess this new found ‘i must exercise’ is here to stay and it certainly isn’t a bad thing. I feel human again and its AMAZING. The bad thing has been if i exercise before week i’m just tired all day and that for sure isn’t good.

For those wondering if they should give exercise a go to help with POTS symptoms definetely give it a go and i recommend seeing Exercise Physiologist / physical therapist depending where you live so that you are supervised to some degree with progress knowing what you should be doing etc vs working through the CHOP protocol that might overwhelm you… it did for me just looking at it! If i followed CHOP i may have given up and not pushed myself, i wouldn’t of been back running yet and gosh running is exactly what i need.. its my quiet time, kid free time, my mind is clear, i’m focusing on my breathing and running and nothing else.. the stressors of life have disappeared for that 30 minutes in time. My pots may get worse again but for now i’m enjoying all this!

My new found life with POTS (Postural Orthostatic Tachycardia Syndrome)

My last post was 4 years ago. I finally had my second baby my beautiful girl and somehow everything has fallen apart slowly since then. For anyone who has been reading from my old blog posts in 2014 I had my son but I unfortunately ended up with Toxic Shock Syndrome after a surgery to fix a child birth related issue. I then went through miscarriages and taking what seemed like ages falling pregnant.

Only a few months after my daughter was born i noticed a lump in my neck, dr visit, blood tests, ultrasound and i have an enlarged thyroid and one very big cyst my bloods were also positive for Hashimotos but my blood work remained fine in range. I had my thyroid cyst biopsied (ouch a local anesthetic in a thyroid hurts like #*$^ …. anyway it was all clear and just a cyst. Since then i have been having annual thyroid bloods and scans to keep an eye on it. Every year my ultrasound looks different and last year the sonographer said my thyroid just dosen’t know what it is doing haha thanks! My daughter was also a reflux baby and it took a long time for her to sleep properly. She didn’t sleep through the night till she was 15 months old .. alot of sleepless nights ZZzzzz. Finally she started sleeping through and then she only sleep ok for awhile before she was waking all the time again!!! She ended up in our bed most of the time. Then one night it clicked, she was making alot of noise while sleeping and snoring. I checked her tonsils out and they were huge. We ended up getting a referral to an ENT and sure enough he recommended they be removed. They turned out to be his biggest tonsil size removal of the day. But for her to have them removed i was stressed to the max i was anxious .. my little girl was having surgery. After experiencing a major life threatening post op complication myself (toxic shock syndrome) i was on high alert for any issues. She ended up getting fevers but only in the afternoons but they went away phew. Finally life was going to return to normal after a stressful and sometimes sleep affected 2 week recovery.

The following month my life was turned upside down … i started to get Reflux.. fine id had it before but this time no clue why i had it. One day i went for a walk up the road (700m) to get a blood test, i felt weird, short of breath, my chest hurt, i was dizzy i just wasn’t feeling right. I ended up going to emergency .. all was good maybe it was anxiety or stress causing it but they didn’t push the point (drs / nurses usually get a shocked look on their face when i have to say about my Toxic Shock history). They got me in for a endoscopy the next day. That was all fine just came back with gastritis and esophagitis i was told lifestyle changes would fix it .. i hardly drunk, i didn’t eat super fatty foods etc i was a bit shocked. Things didn’t really improve and by December things escalated. It was a hot few days i was always a really good fluid drinker but i went to the shops to start christmas shopping. My strolling around casually browsing i was getting heart rates of 130+ i laughed it off to the dr but apparantly she didn’t think it was normal and was a bit concerning. i had to have heaps of blood tests, ECG and the nurse did a sit to stand test with my blood pressure. my blood pressure dropped and i felt a bit dizzy when i was doing this test. I ended up seeing a cardiologist a few weeks later as i was majorly fatigued, dizzy alot, feeling horrid, heart rates high etc. He pretty fast was certain i had POTS. i then needed to wait till january for a Stress Echo test. This ended up being as would be expected for someone with POTS (whatever that actually means). He did say the stress on my body with my Toxic Shock Syndrome probably contributed to my POTS but when i look back i had a cyst behind my ear in June which needed a couple courses of antibiotics, i’ve had all my Thyroid stuff going on so really it could be any number of cause.

Now i’m medicated, i’m on Metoprolol, Fludocortisone and ive started see a Exercise Physiologist to build up exercise and see if it helps it all. but at this point in time i still have soo many bad days, more then good days…..

Everything says about stresss, i have 2 kids, a small business …. and a husband that has been working at home since COVID begun. he has helped with things with my POTS but the judgmental comments about how i’m looking, what i’m not getting done around the house, what i should be doing is all a little much and i’m ready to crack it….

POTS has changed my life my plans for 2021 were: 1. work out a plan on returning to study or how i was going to get back into my professional workforce once my youngest was at school 2. work on my business and keep it building while my daughter is still at home 3. start running again…… It was to be the first time since my son was born that i actually had 2 days (kindy days) where i wasn’t looking after children, but instead its been consumed with my POTS and trying to figure it all out and manage it. now i’m left wondering if i’ll every return to my professional career, will i return to my old life and one day not need to take medication?

POTS while in my case is not full on disabling it has changed my life and i need to learn how to live this new life…..

Our little girl arrived!

The last month has been a whirlwind that’s for sure! on the 11th of August our little baby girl arrived. The week prior to her arrival I had a few appointments with high blood pressure so it was being monitored but was testing negative for pre eclampsia but on the night of the 10th of august I received a call saying my latest came back positive and I was being induced at 7am the next day.

Its been a amazing, crazy, busy, tiring, exhausting, happy, special month that’s for sure. my little girl was finally in my arms and now we have what seems like our perfect little family.

This is our last baby so its bittersweat everything that’s for sure.

 

Below is my birth story:

After a week of high blood pressure i found out Thursday 10th 8pm that protein was in my pee so it was induction 7am on Friday since I was now considered to have preeclampsia not just high blood pressure. Arrived at the hospital but they had 4 inductions about to start so things started a little late. I was hooked up to machines for initial monitoring and at 8am my ob broke my waters. While my waters were being broken my dr could feel bub poking her fingers around like she was trying to touch drs fingers hahaha. After this i stayed hooked up to monitoring and it was picking up tightenings already so I was pretty excited that things might happen fast.

 

It took about 90 minutes after my waters broke for contractions to properly start. At the 2 hour mark my dr came in and decided no drip was needed as things had started. Shortly after I was hooked up to the monitoring while on the fitball and I could feel and notice on the machine my contractions were fizzling. They gave me another half hour and if things had started it was time for the drip. Not even 10 minutes later things ramped up drastically, it must of been around 11am at this stage. Soon enough contractions were very intense, a lot more intense then I experienced last time. After awhile they wanted to examine me, I was only 5cm!! The afternoon before I was already 3cm so to hear I was only at 5cm I was devastated. I thought I would be labouring like that for hours longer. I couldn’t keep going on for that long and have a long pushing phase like last time so I caved, I asked for a epidural. The midwife kept telling me things could change rather quickly and I could be at 10cm really quick but all I could feel was the pain the very constant pain. Luckily the dr was next door giving another patient a epi. The midwife kept reminding me I would need a catheter, have to sit on the edge of the bed to get it etc. she kept getting things ready, hooked me up to iv fluids etc even though she knew I didn’t need a epi and I could do it myself. Last time I managed without even gas!

Next thing I knew I had the full on urge to push. They call my ob who was only a few hundred metres away in her office downstairs. Next I know i’m just going with the flow and pushing as my body wants me to push. 3 pushes later and she was out! (I must say I actually felt like every push was achieving something unlike with my son where it was 90 minutes of useless pushing.) Next thing shes out but my her cord was really short so she couldn’t go further then my belly button. She was purple when she came out and took a bit of rubbing to get her to take a breath but next thing she started crying. Hubby was very nervous up till this point. 2 mintues later my ob walks in! I never did get the epidural luckily, I should of trusted my body better and not doubted that I couldn’t do it naturally.

Our little baby girl was born at 1250pm and weighed a small 2.860kg. She was born at 37+4 which was 3 days further then my son.

I only had a borderline 1st / 2nd degree tear this time too which I was soo happy with compared to needing a episiotomy last time which caused all the issues.

36 Weeks!

I can’t believe i haven’t done a post in ages, time has literally got away from me. Everytime I say i’m going to something distracts me.

So today i’m 36 weeks! My son was born at 37+1 so pretty much i’m on watch alert to see if anything might be signs of things happening soon eek.

I’ve been pretty lucky and I seem to breeze through this part of pregnancy without too many dramas. I’ve had a few back issues, few bouts of reflux, moments of tiredness etc gas has been my worst thing hahaha but its all been pretty good.

Now i’m hitting the bittersweet moments when all I want is to be holding my baby in my arms and finally meeting her but at the same time I want to savour the last few weeks of being pregnant as this is our last baby. its a happy sad moment that’s for sure.

I have most things ready for bub, her room is ready, my bag is packed and in car so its almost just a waiting game till d day! exciting and very nerve wrecking, I really just hope I don’t need stitches or anything this time!

24 Weeks today!

Things have seemed hectic the last few weeks, I don’t think I even updated post scan!!

Yesterday my little boy turned 3! it does seem ages ago now that I was holding him in my arms and now hes a crazy active 3 year old who runs around. He had the best weekend, a birthday party and a day out.

So it must be 4 weeks since my scan wowser, every time I’ve gone to sit down to write a post I’ve got distracted. All went well her measurements were all over the place big head, small arms and legs etc. I can’t imagine shes going to be a big baby. All that was picked up at the scan was a cyst in brain which is a soft marker but as nothing else was picked up we have been told they will probably just disappear before shes born.

Everything has been going well, I haven’t felt too bad, I had heaps of energy and was getting stuff done… we have even started to set up babies room but now post birthday weekend I’ve crashed and back to feeling flat.

I keep trying to plan ahead and have everything ready early this time considering our boy was born at 37 weeks she might arrive early too! My guess is she will arrive 11 days early and arrive on August 17 but we will see 🙂

Now its really sunk in that we are having a baby after the whole journey to get here its seemed like it would never happen but here I am 24 weeks pregnant. Hopefully everything continues to go well and I get through my work the next couple of months and have a little bit of rest time before she arrives (as much rest time as I can with a 3 year old!!)

19 Weeks – enjoying the cool weather change :)

19 Weeks today and when I think about my son being born at 37+1 it makes me realise I could easily be half way right now! eeek exciting!

We have started to move a few things around in preparation for getting rid of the playroom and turning it back in to a nursery which is really exciting. But first we need to get through the 20 week scan on Thursday! eeek. We had bad weather last week because of a cyclone from up north and it distracted me from my state of fear I was getting in about my scan. I’m counting down the days that’s for sure!

The weather has cooled down and I even have a jumper on today for this first time this year, its actually nice not being soo hot at the moment. bring on being cosy with my bump. I’m showing soo much sooner this time then with my son which is crazy. 19 weeks and I look well over 25 weeks .

All I want is for Thursday to go all good and then I can start really looking forward, decorating and all the fun things. for now i’m still that bit nervous that something isn’t right or something might be wrong. I guess i’ll never stop feeling that way this pregnancy.

Yesteray I did spew for the first time in 9 weeks! was very random. I can’t wait to hear my baby girl is okay! I have avoided announcing our news wider and if all is good on Thursday I think I finally will!

now hurry up days so its scan day hehe

17 weeks and the nerves are kicking in again!

17+2 weeks now!!! Yay!! Only 2 weeks till my 20 week scan and I’m starting to worry that something will be wrong. I really wish all  this worry didn’t happen after a miscarriage but it does and it’s hard to just get on and be positive! The last few weeks I’ve been pretty good but it’s hit me again. I’ve been too worried to make an announcement on Facebook but I think tonight I might finally do it. Pull the band aid off as hubby calls it. 

I had a gender scan the other week and bub want cooperating. Sitting on it’s bottom not moving, crossing legs the works, nothing would move it. I went back a few days later and this time success! She did make a comment that fluid levels looked good this time and bub was moving great so of course I now think did something not look right the other time?  Over analysing at its best!!  She did say she tells everyone to keep receipts in any clothing bought etc till the 20 week scan confirms gender. Ahh my brain over thinking is going to annoy me! 

In good news we are having a girl!!!! I’m over the moon! I always said I would be happy having a second boy but this is amazing and I’m pretty excited 🙂