Nancy's Journal

Clayton Mcarthur  I think if you pull the muscle right below the diaphragm that it would hurt a lot when it exerted any pressure in that area but I'd still keep an eye on it and I don't blame you for being weary I'm always worried because my chest still hurts 4 Weeks Later but I think it's the adhesions from all that wire

Nancy Roberts  Update. This was diagnosed as costochondritis (rib and cartilage) irritation, treated with prednisone.

Civita Fahey  I packed some shorts to wear under my gown.. it helped when I was getting up and out of bed and walking around..

Laura Jacobs  Ditto on the ear plugs, eye mask, and comfy shorts. I was also glad to have some chapstick. A long phone charge cord was also essential in my room. Best wishes to you.

Phyllis Petersen  If you forget the eye mask and ear plugs, ask at CC. I believe they were listed in my packet as something they can supply. If the nurse doesn't know where the heart pillows are (and you will need one for coughing!), ask housekeepng -- they know all the secret places. I had loose jammie pants for after the foley was out for walking around and general comfort, and my own robe. The most important thing is to ask for anything you feel you need. My back was bothering me, so the nurse put a heat patch on my back until she could find a wet heat pad machine. It made a huge difference. They also gave me a couple of surgical bras, which I found helpful. There is also a frig for patients and their guests to use, plus tea and coffee in a small kitchen on the stepdown unit. Items placed in the frig will need your name, room no., and date they were put in there, so maybe a few labels and/or a marking pen. The cafeteria at CC is pretty good (especially the omelet station), plus they have Starbucks and Moe's SW. The caf had my favorite Tazo Chai, which my sister brought me each morning. It's sometimes the little things that get you through the big stuff.

Barbara Wood  Do keep the well stocked kitchen on the floor in mind- the aids are happy to bring you things & if you're nauseous, crackers & ginger ale are a godsend!

Nancy Roberts  Surgeon Stephanie Mick... I hear the voices of experience ...sounds like asking is the trick... I'll keep that in mind. I meet with the doc Wed, am told they are upping the ante by possibly replacing both the mitral and aortic and repairing the tricuspid. Sounds ambitious... like a whole new heart. Of course, scary, but grateful such scientific miracles are being done!

Phyllis Petersen  I had them bring me pudding during the night before taking oral pain killers. It made a big difference.
Wow! That's a lot you're looking at, but better to get it all done at once.

Wanda Mroz  All I had was a brush, toothpaste & toothbrush, dry shampoo, and some face wash and moisturizer. I had my kindle too... that helped pass the time. Otherwise, they provided the gowns... they had the snap up ones that were not open in the back which was nice! The socks were provided as well as the hospital underwear. Didn't really need much else.

Marie Myers  I was at the hospital a total of 7 hrs . Went home at 2:30 same afternoon. Was given Very little sedation, so all in all it was an easy experience for me.

Barbara Wood  Ask if they're able to go through your wrist. Mine was done that way & it was super easy- out in about an hour, no pain, just a pinprick size hole.

Andria Pugh  I had to stay overnight in hospital cath was through groin as they tried wrist first nut it got stuck. So a bit bruised and pain but was able to drive 48 hours later.

Henry Brouwer  Hi Nancy, I had 2 angiograms completed thru my groin and both were painless (watched both on the big-screen TV). I did not have any sedation for either procedure. I was out of the hospital in less than 5 hours both times. You do need someone to drive you home. Best wishes!

  Hi Nancy. I'm in Canada and I also have mitral stenosis from rheumatic fever. I had so many strept throats until age 16 and I understand that if someone is genetically predisposed (like I was) then the chances of rheumatic heart disease are higher.
I've always had a heart murmur and was told it "was nothing to worry about" but when I was in the the hospital 8 years ago having my second hip replacement, the cardiologist came in and asked if he could bring in his students to listen to my heart. Still ... I wasn't told that it was anything unusual. Six years ago, I started having abnormal heart rhythms and an echo showed that I had mitral stenosis and an enlarged left atrium. There is some aortic stenosis and tricuspid regurgitation but only mild.
I had a balloon valvuloplasty in 2015 which helped some. But last year, had two severe episodes of atrial fibrillation and increasing shortness of breath with minimal exertion, along with angina and dizziness. I'm very symptomatic now - so waiting for a left and right heart cath and subsequent mitral valve replacement sometime in June.
We're are a bit unusual with this diagnosis. Even my cardiac surgeon last week said she doesn't see rheumatic heart disease that often and she has worked in both the US and Canada.
Welcome to this site. There's lots of support here. Best wishes.

Nancy Roberts  Wow, we sound like heart sisters! Yup I had the "please let my students listen" moment! Felt like I was advancing science--all for it!
I think we may be under the knife at similar times. The anxiety and symptoms tell me, "get it done".... Still working and trying to be productive at the same time and it's hard to separate the emotion from the biology!

pam williams  Hi Nancy I had rheumatic fever twice when I was a child resulting in a heart murmur when my youngest child was born 40 yrs ago I had heart check the cardiologist said don't worry about the murmur but maybe when you are an old lady of 70 (cheeky) you may run into some problens , how right he was I am now 72 and I had my aortic valve replaced 5 months ago and I am feeling great, I struggled for a out 12 months before surgery breathless extreme fatigue, and feeling old, it's wonderful to start to feel young again in body and mind even if I'm not really, I feel I am, waiting is the worst time the fear of the unknown is overwhelming at times but the benefits of surgery are great

Nancy Roberts  Thanks Pam, that's very encouraging! It's great to hear from someone with a similar condition "on the other side" of the surgery equation extolling its benefits! So tired of being out of breath. My symptoms began nearly 15 years ago but were very stable and not too disabling. But suddenly I'm breathless all the time. Not diagnosed yet, but feeling like irregular beats and feeling really lousy must be Afib, which the doc thinks too. Regurgitation with all 4 valves, worst being the Mitral, also Mitral stenosis. Have a NT proBNP (whatever that is) number of 888, which should be below 125, so scary. Scheduled for a left and right cath end of May and worried about exertion until I know more, although the cardiologist said exercise "as tolerated".

pam williams  Keep positive Nancy you will get lots of good information on this site and all the support you will need keep in touch best wishes for your cath

  Hi Pam and Nancy. It is encouraging to hear about your story Pam and how much better you feel after surgery. Thank you so much for sharing! Nancy, I hope you can get some action soon. I can really relate to how you are feeling. I am the same. Absolutely no energy, shortness of breath with minimal exertion and angina with physical exertion. My last stress echo three weeks ago showed a triple increase in the pressure in the severe range and pulmonary hypertension. I am unusual in that my mitral stenosis appears only mild but with exertion, it's severe. I'm waiting for the cath to be scheduled and then surgery. Hope YOU get some answers quickly. Stay positive and focus on what needs to be done. Best wishes!

Nancy Roberts  Wow, Janet, that sounds scary. Yes, I'm now diagnosed with pulmonary hypertension too. Our disease progression sounds way similar. Are you waiting because of the Canadian healthcare system? I understand that they can be very proactive when they need to (despite the nay-sayers).

I became dizzy at work and ended up at the ER this week, no indications of Afib but low pulse rate, 44. Do you get dizzy? (not fainting, but just mildly dizzy?) I am trying to see if I can get my cath moved up, although my local cardiologist thinks this is "stress-related". I did, however, forget to tell him about the low pulse, which seems likely to possible induce dizzy.

  Yes. It does sound very similar with the progression. I also get dizzy and sometimes it will come on even when I am sitting still. My doctors have told me to let them know if my heart rate stays below 45. Thankfully, it doesn't.
I've had some episodes of low blood pressure readings i.e. 82/50 and I sure don't feel well when that happens.
I am waiting for the cath appointment too ... don't have a date yet. Yes. I have to wait for my turn under our healthcare system but it does work when someone needs to be see sooner. It also works very quickly if necessary and I've had that experience too.
I've been told by my doctors to not hesitate to go to the ER if I feel worse and definitely go, if I have another AFib episode. No worries about that! The last time I went in to AFib, I was barely able to phone 911. With our condition, we don't do well with AFib because there's even less blood getting through.
I also wear one of those Lifeline alarms at home since the last AFib event and I can hardly wait to hand it back in to the service provider!

Nancy Roberts  And what do you feel like when you are in AFib? It sounds awful. I have never had it recorded (no, I don't want any more conditions), but can easily find myself extremely fatigued, suddenly feeling terrible and unable to do much.
My cath is moved up to this Friday, so hopefully I'll know more at that point. I understand they may consider switching out both the mitral and the aortic.... whew.
Yes, my rate is fairly stable at 50-55, but drops to high 40's.... but under walking conditions, can zoom up to 120-130 (and I'm talking a very moderate walking speed, not at all like my "normal" a few months ago).
We should so meet up for coffee, but this is nice! Thank you, Adam!

  Hi Nancy. Not sure you meant me to meet up for coffee. It would have to be a virtual one! lol
I knew I was in Afib. Although I am aware of my heart rate being irregular and fast for brief periods of several seconds, when I had the AFib events, my heart rate was very high ... around 155 - 180 beats/min and my BP was high, then low, then high. My heart rate didn't settle and it was difficult to get a BP reading. And I felt very weak, light headed, sweaty and nauseous, not to mention more shortness of breath than usual. I understand that when someone has mitral stenosis, these symptoms are very common when the heart is in AFib. They are definitely not "silent" symptoms for me. Both times, I was sedated and the ER docs did cardioversion to put my heart back in to sinus rhythm.
I've been on metoprolol since the last episode and my heart rate is usually between 50 to 60. Lower at night of course. And thankfully no further sustained Afib episodes.

Nancy Roberts  Thanks Janet, too bad "virtual" coffee sounds good... tho my best friend's sister is in Victoria... close enough? Yes, I walk and my heart zooms up (FitBit) to 150, then walk like a turtle and back down under 100. I do not know the BP. Normal 50ish. .... scary. Anyway now cleared for surgery, replacement, but awaiting a date. They say due to combination of mitral stenosis and regurgitation.... and high pulmonary pressures... the cath did not suffice, needed a stress test. you?