Janette 's Journal

Emily Rowley  Hi Jan,

I'm so sorry I just seen your beautiful message. I haven't been on here in so long especially since 2020 hasn't been a good year for most people due to this COVID-19 times (I hear on the Telly that WA has been doing better than most States, is that true for where you live?). I sadly lost both my Grandmothers this year (without sounding like I'm complaining) I know many are worse off. How has everything been going with you and your family Hun? I hope all is well with your family ☺️.

I'm sorry to hear you've been going through medical trauma with having insulin Injections and now this. I'm in shock how it has moved but in saying that as I too have had 2 holes repaired twice and the first ones did come undone probably being so active didn't help. How long has it been between your repairs and what can they do to repair safely? I wonder where the parts they patch it up travel to within your body... Please keep me posted Hun. I know of a few people who have underwent OHS this year.

It's a shame your email bounced. Do you have an email address I could send you a new email again? 📧

Thank you for reaching out to me.

Take care, talk soon and God bless you xoxo 😘💖💕🙏🤗😍

Janette Rehua  Oh hun condolences to you on such a huge loss in your family x. It's been a tough year. We also lost my beau5iful sister in law to bone cancer at the start of the year she was the same age as me. It was horrendous for her. Yes thankful eve4y day we are in WA very good Premier and we have been well protected. Mark and I bought a camper trailer and hope to do a little camping trip before Christmas. Keep in touch so glad to see you back. Email is jfrehua@gmail. com x stay well

  Congratulations Janette. Happy 3rd year anniversary. You are a warrior. Good to read your share. Keep it up and thank you for your prayers.

Mike Roskowinski  Hey Janetta sorry to hear about your loses in the family. It is really hard when everything comes at one time but sometimes it seems like when it rains it pours. Glad to see that you are remaining positive and pushing through all your personal health scares. Remain positive and keep praying as I will be for you.

Susan Lynn  Janette - I am so very sorry to read about the recent losses in your family. I sincerely admire your strength and optimism. I'm sure you are the source of inspiration for your husband, granddaughter, and everyone around you. You will be in my prayers. ❤

Emily Rowley  Lovely to hear updates from you as always 🙂

1. Perfectly normal. You may also exp strange feelings like pulling coming from your scar at times throughout which is normal. But be weary if you have chest pains where feels heaviness on your chest like an Elephant is sitting on there! Seek a Doctor in that case.

2. I am aware of Warfarin for Heart post-surgery but not Strokes. Googling can be scary 😖 I too was scared to suddenly stop Warfarin after so long thinking it would create a blood clot to form in my body but nothing at all happened besides my INR lowered. The Nurses help me view it a different way, by explaining more in depth how Warfarin works in the body. If it's okay, may I ask what in particular are you scared about stopping Warfarin? How do you monitor yours+how is your daily diet with Warfarin (with being vegetarian do you eat alot of leafy green veggies such as silverbeet to higher your iron intake?)? I used a Warfarin food booklet & INR chart booklet which helped me-I can send you the link to get free ones. 🙂

Elaine Cutri  Would a low dose of Asprin be something to consider? Ask your doctor. It works differently than warfarin, but gives some blood-clotting protection.

Tina Maroon  Janette I had my OHS in June 2015 and I can tell you I have had that same experience of feeling the heaviness in the chest and like its moving when I get up from a sitting or laying down position. I still have that sensation. I know what you mean!!

Janette Rehua  Tina its a weird feeling huh? I swear sometimes it feels like its going to just pop out of my chest !! Glad its normal. Elaine I plan on chatting to my GP as well about this, my cardio Dr and surgeon were very calm in fact they were borderline casual about my divorce from warfarin !!! My darlin Em I guess like you I thought ohhhh I will stop them and a giant clot will get me! Now I realise its more about prevention of afib by having thinner blood but since I havent had any episodes that I have noticed and since ECG and echos have all been fine (bar a little fluid round the heart ...all ok says cardio guy!) I feel its worth the risk to stop because I dislike the risk of thinner blood in other ways .....dental, accidents and so on ....Im still debating a bit I guess. Many years ago when my diabetes was discovered I was told I had heamochromatosis but it was not followed up or acted on and from that point on I stopped eating meat.

Emily Rowley  Yeah the inital stopping of Warfarin is a whoa shock. Has your Cardiologist or Surgeon reccomended for you to stop it & perhaps transition to a low dose aspirin? Are you Type 1 or 2 Diabetes? I didn't know you had this, learning something new 🙂 Male sure you get your levels checked as they could vary from time to time. I think I might be low on iron as I have been feeling really tired lately. Take Care honey 😘

Emily Rowley  It is always great to hear updates from you Jan ☺ and to hear you are feeling more like yourself. Forgetting questions is e-a-s-y done that's why it's great to take someone close (your hubby) along. Oww he sounds like Mr Dreamy...like my Cardiologist shhh! 😉 I too felt emotional but after my consultations & testing, it is emotional draining so feel free to let your emotions out. Yay you will be able to stop the Warfarin! How is your testing going, do you visit your local Nurse? I was wondering how everything went with your Stroke, it's a big deal (well I think it is)-Is this why you need Warfarin for 3 months? Aww tea stall sounds lovely ☕ Thank you for thinking of me Jan, I have been thinking of you (I understand you need plenty of rest early on in your recovery). I am really well and keeping very busy too. It has been hot (I'm trying not to get burnt or stay out in sun too long) here too, but now raining and cold so strange weather. 🌦 You don't have air con?? I haven't exp redness on my knees so I'm no help there sorry. Did you get sunburnt? Sending my well wishes your way 🙏🏼 xx

Janette Rehua  HI HUn how is my BFF heart buddy Emily? I hope things are going well for you and you are getting strong. Its been mad here my daughter Sarah her partner Nick and our adorbs Grand daughter Willow are going to be leaving town ;( Im most upset but Nick wants to go in the Police force so they need to be in the city. Its 2 months now since surgery and aside from some fluid here and there Im doing well . I walk two laps of the oval each day and potter about as much as I can. Sending peace and love and prayers to everyone here xxx esp you Em x

Emily Rowley  Hey Sweetie 😍 I spoke too soon about being well, as these last couple of days I have been really sick (still am) with a virus/cold which I may of caught off the sick children (with my lower immunity) or perhaps a spooky Halloween curse?...😷 🤧 🤒 🤢 But I'm getting there 🙂 A few of my beloved pets passed away recently, within a few days of each other 🐰🐔 Oh no, will this be a permanant move for them or will they need to move around with Nick's work? Hopefully they will still be able to visit you regularly. You would be hun 😪 I'm sorry this isn't good news for you, it can't be easy. I am sending all my warm hugs over to you in WA. I am however happy to hear from you and that you are doing well 😁 Has Dr prescribed any fluid retention tablets? That is great, watch out for the Magpies (or maybe that's only a NSW problem?)! Potter, I very much like the sound of that! When I was taking my time recovering (still am-it's an ongoing process I think it never really ends fully) not working, people would say to me "Oh you must get bored all time" but I didn't, there were always little things to do and learn and explore the world alittle more which I'm sure you too are doing and hopefully enjoying 😄 Are you attending any Rehab? Aww thank you hun xx I am thinking of you and sending my prayers, love, and hug to you and your wonderful family. ❤💌🙏

Emily Rowley  I too live in a small country town. I haven't experienced this problem as such, I know Nikhil on here has. I can suggest after you have a shower at night and dry the area gently with cloth or towel, rub betadine cream over your scar then cover with Elastoplast Sensitive bandages cut to size (both of these available at any chemist/pharmacy) before going to bed, this is what I used on mine. Take care sweetie 🙂

Janette Rehua  awesome idea chick ;) my GP gave me a tub of Betadine for this and I plan on sacrificing one of my towels cut into squares to act as temporary pads till I can get to the chemist. I sat in the bit of sun we had today and it dried things up a little xx

Emily Rowley  Whoa that's a big sacrifice you are about to take 😱 I love my towels too much hehe 😁 Is it your fav towel and what will you use to hold the towel in place? Face washers might do the trick too if you have some... That's great you were able to soak up the sun, do you have a comfy outdoor chair or sunbed? 🌞⛱ Could you please send the sun over here hun xx

Emily Rowley  Yay, so happy to hear Jan's surgery went well. 😀 She will need plenty of rest. We are thinking of her 💕

Janette Rehua  thanks all ! thanks my hubby Mark for updating the journal. its been a week and really feeling the pain but happy to be here I had a little stroke at some point but im ok. Will go see the brain scan man in 2 weeks ;) jiggling round he warfarin now but home on tues. lovely accommodation till then but im struggling to get comfy sleeping thanks to a very annoying throat tickle NOT an infection as it is clear but soon as i lie down cough cough cough back up again hoping for ventolin when i see my gp next week. looks like have to get a recliner too. Been tough as hubby had me and his sister in hospital the same week as me she has been diagnosed with cancer in her arm which has spread to her lungs already please pray for her. love and prayers to you all xxx

Emily Rowley  I found on page where your dates are hun. I am wishing you well for your pre-admission tomorrow. Feel free to ask them as many questions as you wish. Where are you having it done at? To be honest, you are in for a long day as they go through everything. And travelling to the city can drain the energy out of us, I always thought of something I look forward to like being able to drink bubble tea in the city 😀 I haven't forgotten about your pre-op testing tomorrow, your big Operation day 2nd of September (before Father’s Day) or you gorgeous strong girl 👧🏼 Take care and look forward to hearing an update when you are we'll rested. Oh well we could always do that extra pair of shoes us gals...hehe 😚 Lot of love xoxox

Janette Rehua  Thanks Emily , Corey and Barbara well the pre op day was great only some argument over when to stop the blood thinners (between anaethesiologist and some one else I had to see) and also the nurse I was supposed to see doesnt work on Friday so that was a bit of a 'duh' . Bloods done, chest xray done my 'showbag ' of info and shower wash count down begins

Emily Rowley  Your pre-op was on Daffodil Day 🌻 Hopefully can get the blood thinners sorted out soon as this is really important, do they give you something else in the meantime to replace such as injections? How are you feeling hun? 6 more days xx

Meredith Bray  That's BRILLIANT, having something fun to look forward to after surgery. I have no doubt in my mind that you will be dancing the night away on new Year's at the wedding!

Janette Rehua  aw bless you thanks Meredith thats the plan .....how is your back now? I was interested to read about the back woes you had because I have had two back surgeries and my discs are rubbish !! I had 3 collapsed discs over the years and very antsy about having to sit a lot Im not much of a sitter!! Im a walker I love walking but Im realistic that I may not be marching off with my two dogs immediately!! :)

Paul Wells  Janette, I have had my pulmonic valve replaced twice. The first time as part of the ROSS provedure. A second time when the replacement stenosed.
The pulmonic valve replacement is less common. Not all surgeons have experience with the pulmonic . And it's in a tougher position to work on .so make sure your surgeon has experience. I'm not sure if there is a mechanical valve for this position. I had a tissue valve that also included a length of original vessel, because of the severe stenosis.

Emily Rowley  Jan, you will make it through this surgery performed by highly specialist team. I know it is hard not to fear unknown but I also know you safe in their hands with God looking over 🙏🏼 It's perfectly normal to feel emotional heading into your surgery, let you emotions run freely and may there be times of peace - finding peace and picturing a thought of place I find relaxing with the help of my Pastoral Care Worker going in to the Operating Theartre (mind you they give sedative drugs). 🙂 We are here praying for you from afar xoxo may God bless you 💞

Janette Rehua  Paul at this stage the plan is to close up the hole in the heart, perform a maze procedure and ablation unless they find something hideous they are not planning to do anything to the pulmonary now. Initially the plan was replace it but because it is worsening so very slowly they feel its not needed just now maybe 10 years down the track who knows Im 49 so they are thinking perhaps there is some time to wait :) How are you doing now Paul ??

Bridget Sawmiller  I just had my surgery on August 4th, you will do great. I found that 3/4 of the battle is in your mental attitude and I found humor to be what brought me through. You WILL do great!

Wanda Mroz  Best of luck .... What you are feeling is part of this journey and before you know it will be behind you. I'm coming up to a year and can't believe it. I have some atrial flutter going on but hopefully they can correct that soon. Prayers and well wishes🙏🏻💞

Lynn Whipp  I, too, get nervous. I think your surgery is sooner than mine (August 31), big aortic repalcement. I am trying not to miss what is good, the faith that says I will be made well, the love of family and hope to live better than before. I pray the same things for you and all of us facing our surgeries soon!

Darlene Smith  I think you will be pleased to be on the other side of surgery. Its a totally different feeling being in recovery, and I am so happy the surgery is in the past. Btw, I didn't do half the things I said I was going too, and the house hold is still running!!

Emily Rowley  I wrote a response out last night, but it must of not sent properly unfortunately.
So here it goes. Wow your Operation has come up quick hun! We are here every step of the way, sending prayers your way. 🙏🏼 Time will go by fast, some times feel slow. At times now it feels surreal that I had OHS. I am thinking of you on your journey, smilling in how happy I am to be part of it, getting to know you 💕 soon you will be on your road to recovery xox

Janette Rehua  Thank you so much Wanda, Lynn, Darlene you guys are so encouraging you have NO idea ! Darlene you words put things in perspective a lot I worry about the family but also my dogs ...one of whom is like my baby and a total sookie !!!! I know they will be FINE ! Thanks Emily always lovely to have made friends like you through 'heart' circumstances! xx

Emily Rowley  Always thinking on the bright side 😁 Your Op must be coming up soon, what date is it hun? Have you underwent pre-op testing?

Emily Rowley  I think it might have been Cheryle Bird from Brisbane? Here is her profile ☺
https://www.heart-valve-surgery.com/journals/user/cherylebird
Sorry if this is not right. There isn't many of us Aussies on here that I know of... Shame can't search for people by location or post written.

Emily Rowley  Oh sorry, I don't think I have come across her. Do you know what State she is from? Also have you heard any word from Stephen (also an Aussie)? I have sent a few messages+checked his wall but no word. Hope he is doing well. 🙏🏼

Lori Phillips  Ha Ha! I hope it's normal, because that's exactly how I feel! Mine is coming up in 7 days. I will tell you I wish I would have lost some more weight. Other than that I'm a newbie! I know nothing of these numbers people talk about. Don't feel like a phony.... I think any heart related stuff is helpful because I'm not exactly sure they won't find OTHER heart problems beside my tricuspid valve! Wishing you well! Lori

Joyce Shelby  Janette, I did the same thing prior to my surgery. I actually wrote my husband and sons a letter one week before my surgery and I instructed them to open the letter if I didn't wake up after surgery. I was very emotional, Those feelings are all normal.
I had Ohs on April 11, 2016 and I am now in cardiac rehab. That is a good idea to get yourself in shape prior to surgery because it definitely helps with recovery. I wish you the best with surgery and recovery! All will be well!

Barbara Laurie  I think it's normal 😊 I'm ten weeks past my surgery and I still feel very insecure ❤️ But after my ablation (b4 my surgery) my heart was so calm, I really felt great! I'm sure you gals will do fantastic! Best Regards❤️💕❤️

Nap Garcia  I'm two weeks away as well, and have the same feelings. I get myself mentally psyched and in good spirits, then I have to work on my advance directive and will which hits me with the reality of the situation. Not expecting the worst, but have to prepare for it :(

Emily Rowley  I know the feeling of no phone or internet (for some reason pictures won't show up only as a black cross, anyone else exp this?) Aww we were/are thinking of you and I'm happy to hear an update of how you are going. Hopefully moving wasn't too stressful. Were you born with the holes and over time they have expanded? How do you feel with this Surgeon? You're not a phony, it would be nice for this community to include all heart patients, at rehab there are alot of heart patient (without OHS or with it & not their valve) who would like resources & connect with a heart community. I know you two will make it through and come out stronger on the recovery side ☺ It's normal and your not alone, I know it can be scary having those thoughts esp in the middle of the night-I tried to calm myself down by trying to think rationally, positive, looking at other people's success stories, researching reviews about my Surgeon, thinking of a peaceful place while having a cuppa tea (yes it does sound crazy a cuppa at midnight)-but whatever helps you and you may have your own technique that works best for you. Before my 1st OHS my folks took me on a great Holiday & I got to do everything new I wanted & hadn't tried like my 1st plane flight, 1st hot air balloon ride oh and my fav time at the theme parks QLD (there has been alot of floooding around+storms I hope you and your family are okay and didn't get affected). I remained calm before surgery, except before my 2nd OHS I got emotional at work around Christmas thinking if I only have a month to live I want to spend it at home with my loved ones. However I survived OHS twice and I know you two can (not saying you will need to go through it twice) 😘 Sorry for my long response and rambling on abit. Sending my prayers 🙏🏽 Love to hear more updates girls 💕

Jean Raber  I was diagnosed with mod/severe MVR, surgery likely, just a year after taking care of my elderly mother after AVR. After seeing how that went, I told the cardiologist I would never let them do surgery. I went home, planned my funeral, wrote my obit, updated my will and advance directive, and made a list of where all the important papers were. For me, that was very therapeutic. I am hoping to hold out for TMVR, but time and info from this group has made me less afraid. God bless you.

Emily Rowley  Hey Jan, How have you been going and ever more word from the Doc on your Heart? Hope you are well, I am thinking of you xx

Emily Rowley  I seen your Guestbook reply and sent another back+in your journal up further. Thanks Jan. That would lovely, whenever you feel up to it xx

Denise Campbell  Hi. Sounds very confusing. B. So you'll have surgery soon. And then what about your valve? That will be another surgery? Have u thought about mechanical valve? And I saw a post from Emiy talking about public/ private. Hospitals. How does that work.? Here is depends on your insurance

Stephen Doherty  Hi Janette .. that sounds all mighty confusing to me, maybe a second opinion would be of some help? I was wondering how you went at the Dr this week. Its great that you may not need the valve, am just a little worried how it has all played out for you. Hope you are doing Ok.

Hi Denise, here we have public and private, everybody who works pays a medicare levy of approx 2% and everybody has access to our universal healthcare system .. We also have a private health insurance scheme and private hospitals where the user pays similar to the US system.

In Australia the universal healthcare is the primary healthcare system funded by all levels of government, whereas private healthcare is wholly owned by the private sector.

Private health insurance is optional.

Janette Rehua  I hear you all re 2nd opinion BUT time is ticking by and I have waited so very long to see these guys that I dont know how sick I want to get while sitting waiting ;( I do not have the luxury of private care therefore I have to be added to wait lists in the public system (a system which I feel is generally very good~except for the waiting) . Stephen, this was the result of meeting with two Doctors I went expecting answers (post M.R.I) but came out utterly confused as did my hubby and my Mum ! The notes mix up threw me almost into a neck thumping, face sweating, panic mode and was very concerning. I dont know what to do I know am in the midst of moving house as is my daughter its organised madness ........HELP!

Denise Campbell  If they wait list you how long is the list? And once the doctor decides you're ready do u go to the top of the list?

Stephen Doherty  Although you don't have private health, Janette, you can still go to your GP and ask for a referral to a new cardiologist that you choose, you will just have to pay a gap fee maybe if not bulked billed. Also get a copy of all your test results and reporting Dr's conclusions, that way there can be no mix up. Though you are in WA and each state having its own health care policies I'm not sure how yours works fully, but you should be able to request the same as here. You poor bugger, so much going on in your world right now, I'd be freaking out too!

Denise, the public health wait list is a "Clinical Priority" based system, here in NSW its a a 30 day, 90 day, 365 day and staged categories. Of course emergency takes priority over those waiting. You can see more details on the policy in the links if interested :) .. http://www0.health.nsw.gov.au/policies/ib/2012/pdf/IB2012_004.pdf .. http://www0.health.nsw.gov.au/policies/pd/2012/pdf/PD2012_011.pdf

The private system is a faster system for elective wait times, as there is less demand on private health than in the public system.

mark griffis  Janett, thanks for your comment-unfortunately my dr is actually increasing the metropolo to keep my pressure down another notch-but the fatigue was there before the increase.

Sophia Ridley  There's a few of us non-Americans lurking about. Sure that there's many about but names you'll have seen... Emily is Australian, Nicola and I are Brits.

Hearts all the same in any nationality, so the compassion and warmth you'll receive. Welcome!

Alina FH  Hi, Janette, I believe Emily is from Australia: https://www.heart-valve-surgery.com/journals/user/emilyrowley
Cheers!

Emily Rowley  Hey I am from Australia :D Thanks Alina :) Me too Stephen, if you don't mind me asking where or where is your surgery Stephen?

Stephen Doherty  Hi Emily, no worries at all, my surgery will be at Royal North Shore Hospital. Am seeing my surgeon, a Dr John Brereton on the 16th May, so not sure when as yet although my GP says he will put me on the wait list that day.
Hope you are going great guns after your surgery in Jan, may I ask where you had yours done at? :)

Emily Rowley  Royal North Shore Hospital is in Sydney. Is it public or private? 🏥 Have you watched Kings Cross ER or RPA? 🚑 I haven't heard of your Surgeon before. Will this be the first time you are meeting him? I wrote questions out in a little diary to help me prepare, although when I got to meet my Surgeon for the first time I forgot to ask her the questions lol. I had mine done at St Vincent's Private Hospital in Darlinghurst. They were excellent there, all the staff were lovely, especially Pastoral care Team! I underwent my first OHS at the giant Westmead Hospital. Good luck with your appointment, please let me know how it goes for you :)
Ps. Sorry Janette for taking over your Post/wall :S

Stephen Doherty  Hey Emily, Hey Janette .. :)

RNS has both public and private, Dr Brereton has his rooms in the private part but is head of cardiology of the public part of the hospital. I'm a standard public patient, in Australia it really makes no difference, all people have access to the top surgeons regardless of social/financial situation, we are so blessed in our healthcare. He started surgery in '83, moved to cardio-thoracic's in the
'90's with a particular focus on aortic valves.

Have most certainly heard of RPA, I worked there for a year when I moved to Syd for a little while in '98/'99. Was a permanent temp for the hospital, going where needed. Did night couriering, running around med records, packed cells, bloods, patient transport and the occasional trip to the morgue. Also worked on the neo-natal intensive care ward as a ward assistant and the liver renal transplant ward as ward clerk. So yes, I know RPA very well, although since the revamp there it has changed a lot. I moved back to the coast though, once a coastie, always a coastie. :)

Kings Cross ER just makes me laugh, an Americanised name just for TV, it will always be St Vinnies A&E to me. lol

You wee certainly in good hands at St Vinnies private, I will do a little reading into your surgeon though as I have not heard of her either. Actually a close friend of mines son-in-law is an anesthetist at St Vinnies on a cardio thoracics team. It was a toss up between going to St Vinnies and RNS for me, the fact that John Bererton's specialty was aortic valves, and he is head of cardiology, he is also open to discussions on an equal level with an informed patient according to my cardiologist, which is awesome. Its also closer to home and family.

Sorry too, Janette .. for being bombarded by the New South Welsh-people. ;)

Emily Rowley  Same as St Vinnies, they have both public & private Hospitals next to each other. Health Insurance is expensive. I knew people who died from catching Golden Staph having Surgery in Public Hospital where emergency rooms are. However I'm sure RNS is clean place. 😊 My Surgeon is the head of the Heart & Lung Transplant Team too, she operates in both, her rooms are at the Public (but Private is renovating)-she is an excellent Surgeon & her team! I think sticking to Dr Brereton is a good idea for you as he specializes in Aortic Valves. Who is the Anesthetic you know? Cool, what is your Occupation? I had a better experience this time around, it was different to Westmead-that was a Public Hospital & I had the best Surgeon head of his Team, you're right about that. It is great you feel comfortable talking to you Surgeon, I would recommend taking someone close with you & if you forget things easily you could take a recorder to listen back on. Haha New South Welsh-people I like it. 😄