Dorothea's Journal

Hi all, it‘s been three months today since my AVR. Since last week I am feeling soo much better! After a consultation at the hospital I was allowed to stop taking Lixiana (Edoxaban). That’s the blood thinner I was prescribed for my AF episodes. I had my last migraine the day after; before, I had 5 to 6 attacks every day. Same goes for the horrible cramps in my arms and back and the numbness. I wonder why nobody knew about these side effects!
I have stopped taking painkillers as well, apart from the occasional Ibuprofen for my shoulder/arm syndrome.
I really am on my way back to normal now. I went to choir rehearsals yesterday, I have again taken up my duties as chair of a pastel society and I am going to cardio rehab three times a week. AND, I am actually enjoying it! So to all of you who have commiserated; thank you! To all of you who are still waiting for their operation; even if the first months are tough, there is light at the end of the tunnel!

Hi all, it‘s been two months today since I had AVR and aortic root replacement. Recovery is a mixed bag; although I have more energy now, the pain in my chest area is still considerable. I am still taking pain medication and can‘t sleep without a pill. I am very uncomfortable lying on my back but turning on the side is way too painful.
The most annoying things are frequent migraines, bouts of neuralgia in my arms and back, followed by numbness which creeps up my body into the face. Anybody else experienced that? Am I too impatient after 2 months?

Yeah, I can go home today! Doctors managed to regulate my heart rhythm and are confident it will stay stable with the medication. So glad! Thank you all for your support during the last difficult days! — feeling blessed.

My heart rhythm is still crazy. Last night, it jumped between 40 and 157! The doctors still haven‘t found the right medication. They won‘t even unhook me from the telemetry for the 15 minutes it would take to shower! Nothing to do but wait. Very frustrating!

My blood pressure is very low and my heart rhythm is all over the place. The doctor just told me I had an AV block; never heard of that before. Already been here since Tuesday, no idea when this will be resolved. Well, they just said they won‘t let me leave anytime soon. And there are no single rooms left. My room mate is an elderly flemish lady who is hard of hearing so everybody has to shout. All her friends and neighbours come and visit all the time and they also shout. This is driving me nuts!

After 6 days at home, I am back at the hospital. Sent by our GP for check-up because of excruciating back spasms, they did the usual blood tests and didn‘t like the raised number of leucozytes. Will have to stay until the know what causes it.

It‘s 11 days post-op and it is one of those days.Everything hurts, breathing is still painful although I am doing my exercises and I am crying the whole time. Anyone of you experienced the same?

am now 9days post-op and thought I‘d write down my memories as long as they are still fresh.
One thing that concerned me a lot before OHS was that I have a strong gag reflex - I nearly bit my dentist‘s hand once when he tried to take an imprint - and I was afraid of still being intubated when I woke up.
What happened was that when I swam back into consciousness after my operation, I noticed - still as a very general and vague ‚I‘ - that there was something in my throat. Breathing in didn‘t bother me, when breathing out I tried to cough out whatever it was. But there was no pain and no panic; for that I was still too deeply sedated. Next thing I noticed was my head being gently turned and then this slithering feeling in my throat. I coughed slightly and got a tiny trickle of cold water between my lips to moisten my mouth.
That was it; the whole thing turned out to be a non-event.
And do remember, you are never alone during this phase.There is always someone around and you are hooked up to all kinds of machines which monitor the wake-up process very closely. My husband told me the Post-
Anaesthetic-Unit looked like a miniature version of NASA Ground Control with lots of people sitting behind their screens. Trust them, they know their job and will help you through these first hours.
Hope this helps a little!

Accidental delete; an apology to all whose comments got lost

After my doctors decided that my progress was satisfactory despite my Saturday a fib episode, they sent me home with a long list of does and don‘ts and a bag of medicine for the first days. It is so good to be back! Today I will get a visit from the physiotherapist, GP will see me on Monday to relieve me of the last staplers round my thorax drain entry. My husband and I are trying to develop a routine for the next 2 weeks. He has definitely earned a nurse‘s cap!

I heard from my surgeon that I got one of the brand-new Edwards Inspiris Resilia valves. University hospital Leuven is one of the first hospitals in Europe which uses this new type of bovine valve which they developed together with Edwards. http://www.edwards.com/ns20170705
I am a very lucky girl!
P.S. Just read in ‚Cardiovascular news‘ that this valve will become available in the US from next year! https://cardiovascularnews.com/fda-approve-first-in-class-resilient-surgical-valve/

The day started with a fib which was unpleasant and stressful. Luckily, medication brought the heart rhythm back to normal. Hope it stays that way!

PS: Dorothea also wanted me to mention that over the course of today she's been successively freed of all the drainage and IV tubes, which was briefly painful but a great relief. She's only hooked up to a little portable telemetry unit now to monitor her heart rhythm.

(Stefan again) Thank you for your encouragements and advice, especially Becky W. - greetings! Yesterday was indeed pretty rough on poor Dorothea, but today she was much better, could even walk along the corridor for quite a bit and managed 7 minutes on the armchair bike. The lead surgeon thought her progress "fantastic". He confirmed that she's been fitted with an Edwards bovine valve, which according to him should be good for about 20 years or more, and will accommodate valve-in-valve replacement when its time is up. I will let Dorothea fill you in on the details later - she has asked for her tablet back, so expect her back online any day...

Hi, this is Stefan, Dorothea's husband, reporting as per her instructions.
After yesterday's false start, her AVR surgery took place this morning, by mini-sternotomy as planned. Everything went without a hitch, and all her parameters are looking good (no fibrillations) so they didn't even put her in intensive care but are keeping her in a post-anaesthetic unit for just 24 hours. There's quite a bit of discomfort for now, both from the incision and from her neck and shoulders, but we hope she'll get enough painkillers to be able to rest. Things should improve once she gets back to her regular room tomorrow.
May I take this opportunity to thank you all for the support and encouragement you've given her through the long wait. I know this community means as lot to her, and will continue to help tremendously as she slowly claws her way back to normal. My heartfelt best wishes to all of you.

What a bummer! Two emergency operations this night and now mine has been postponed until tomorrow. They‘ll tell me tonight if it‘s going to be in the morning or the afternoon. Waiting is no fun, but, as one of my friends succinctly put it, at least ‚you‘re not one of the emergencies‘.

Arrrgghhh! When they told me at the cardiac surgery office a few months ago that they would call me ‚a few days‘ before the operation date, they didn‘t lie! It is Sunday morning here in Belgium and I just got a call that they want me to come in at 2pm tomorrow, OHS will be on Tuesday!!
If you have any spare good vibes left, I could use them now...

My unexpected visit to the ER seems to have borne fruit. Just got a call from the nice cardiologist who examined me on Saturday night. He has talked to the heart surgery office about getting me an earlier appointment because of the onset of symptoms. They will call me back this week to give me a date for my AVR. It will be sometime between October, 16 and the end of the month. Not long now.

Guess I'm getting symptoms now. Dizzy spells getting more frequent during the last week, Today, while at the seaside, severe shortness of breath. Now sitting in ER, Waiting for a check-up. Am I overreacting?

Hi guys, I have a question. I am constantly in awe when I read how much you all walk per day; before AND after OHS. My problem is that I have severe arthrosis in both my knees. Walking for miles and miles is out of the question. Even riding a bike is proving a challenge because of the slopes...I have a stationary bike which I can only use with a low resistance. Otherwise I get such pain in my joints that only naproxen or diclofenac helps. I am currently waiting to get a date for my OHS; should be sometime after mid-october. I worry what that will mean for my cardio rehab. Any ideas?

I finally had a meeting with a doctor from the surgical team; she told me that due to the position of my aorta and the procedure 'only' being a AVR with root replacement without the need for any other intervention, I would get a mini-sternotomy instead of the full 'zipper'. That means a 4" instead of a 10" incision. So relieved!

I can't believe that it has only been 5 weeks since my visit to the cardiologist. I am still shell-shocked. 20 to 25 years until AVR have suddenly turned into 7!
All my plans have been put on hold. My husband and I had booked a holiday in the Caribbean for the winter; that has to be cancelled. My choir has a concert planned for the beginning of 2018 and I have been given a solo part. I won't be able to participate. I paint; I wanted to try and get into a few art exhibitions; that won’t be possible now.
I have difficulty sleeping; I never needed a sleeping pill in my life; at the moment I can't do without. Oh, and I cry a lot. But I guess that is all completely 'normal' and a lot of you have been through this.