Nicola's Guestbook

Nicola Laker  Hi Linda. Apologies for the late reply. Life has been a bit hectic of late worrying about my mum in hospital but glad to say she is doing well now and convalescing in a lovely home.
Anyway, I'm coming up 9 months now and I'm not too bad at all. Still get very tired some days and fighting for breathe when I speak is also not helping. I will be glad to see the ENT this week and finally find out what they can do, if anything, to make it easier and better for me. I'm still signed off work as my Dr is concerned about dust getting into my lungs which were damaged whilst on life support. But looking back to how I was, I feel very lucky and I'm making progress every day. I still have pain in my chest but I can live with that but would love to have my voice back! Xx

Nicola Laker  Hi Sophia, lovely to hear from you. I'm doing OK, getting stronger by the day bit it's very slow. I can look back now and see the difference which spurs me on during those bleak days. I'm going to see the Critical Care Consultant who looked after me in ICU with some other Dr's etc as well on the 16th of this month. In hoping he will get my vocal chords seen too quicker as my local consultant is really dragging his feet! It's surprising how much breathe you need to speak and it's making me even more tired trying go to talk to people. I'm still off work as the environment would not do me any favours and I couldn't physically do my job either. So to say I'm bored at home is an understatement! I tried to drive but it still too painful. I have rolled over in bed during the night and woken up in agony so I'm trying to to keep partly on my back and bunch up pillows around me to see if that stops me! I just wish it wasn't so painful...more so on my right side than my left. But it's a major improvement to what it was like. Sneezing still hurts, as do hiccups. I don't usually suffer with either of these until I can home from hospital and since then I haven't stopped Sneezing! It's like my body knew and made me go through this agony numerous times day after day 😂 now it hurts less they seem to have stopped! Very bizzare 😕
How are you doing? Are you doing more hours at work now ? Xxxx

Sophia Ridley  I'm so sorry to hear that you have difficulty with your vocal chords, it's a reminder you could do without. Hope the consultant can accelerate the treatment, last thing you need for them to drag their feet.
I struggled for months to slept flat and then more before I could think about sleeping on my side (even now I hug a pillow!) as my shoulders were so painful. I had some intense physio (sports physio) on my shoulder and neck muscles, made such a difference. Sneezing is very bizarre, glad that's settled.
I'm doing pretty well. Had a run of occasionally AF recently, after the bout that took me to A&E. It seems to start up if tired/eaten poorly, which isn't great when I'm trying to continue a very busy job, I get in 10ish but don't leave until gone 7 sometimes later 😟 Least only 4 days, I can be full time mum on Fridays! I have found that, although last thing I want to do, walking quickly for 20 minutes kicks it back into sinus, it's so odd that I feel lighter and have more energy the split second it switches.

Good news is that the atrial ectopics have practically gone, just left with loads of ventricular ones.

Saw cardiologist today, have monitor for Monday (wanted to trace normal day rather than running about central London!), bloods and echo next week. He really wants me to wait and see rather than go ahead with an ablation at this stage. Said he's seen others where it's settled down completely. Fingers crossed!

I'll reply to the email generated by the guestbook. If you're up in town, let me know!

Barbara Laurie  Hi Linda❣ I had the cone procedure, which is a repair, for my surgery, also my right ventricle was made smaller, since it was hugely enlarged, and the small hole was repaired. Then, my heart failed the next day, and the third day I received a replacement valve and the Glenn procedure to by pass much of the right ventricle and TV. Age is a factor in the general guidelines for the repair, but overall health is taken into consideration as well as what they learn from the various tests. If a surgeon suggests repair it still could result in a replace if, once they go in and look, the leaflets of the valves are not usable. BUT remember Linda, EA is so rare, and every EA heart can be so different, making it all very tricky. Cardiologists, as a group, push for waiting when the patient has few symptoms and is doing well, while surgeons prefer younger, stronger patients.. But you know even younger patients can still find EA surgery tricky.. And also, as an aside, I was told the TV is always replaced with a bio valve, not mechanical.
I know your surgery will be great Linda, you're in great hands with DR. Derani. At the Mayo. God Bless❤️🐾❤️🐾❤️

Nicola Laker  Hi Linda. I think Barbara has really summed this up. The surgeon went in with the idea to repair rather than replace, which for me was successful. I also had my ventricle made smaller and an ablation due to two further (unwanted) electrical pathways.
Each EA patient is different and although my operation went smoothly, my complications like Barbara followed after surgery. Luckily I did not require any further operations as the drugs eventually put my body back to normal. This does not mean this could happen to you. Barbara and I were just very unlucky but here to tell the tale.
My surgeon here in the UK, likes to perform the Cone procedure on the valve as young as possible not just to be able to use the leaflets but also give them an easier recovery. Us oldies take much longer to get over this. I've been told it was will be at least a year although this is also due to the complications that followed that have put put the recovery back. We just have to take each day as it comes.
Have you been given a date yet? Xx

Nicola Laker  Something else that I forgot to say was that the surgeon said that EA was a harder recovery because we were born with the defect and our hearts are lazy as one side isn't pumping properly and doesn't know any different. When it's repaired it goes into shock and doesn't like working so hard...hence the tiredness etc. Also this is why it took vast amounts of drugs over 4 days to get my heart to function properly followed by my kidneys and lungs. Another reason why he likes to operate when the patients are younger. My surgeon does a lot of charity work repairing valves in children abroad. I think I was extremely lucky to have had his expertise working on me. X

Linda Lloyd  Hi again Barb and Nicola, with many thanks for your input—I’ve been (anxiously) waiting until I received word from Dr. Dearani to update. He just called, and recommended that I come out there for more testing because what he was seeing was not conclusive--and their EA testing methods are more comprehensive than what my cardiologist sent to him. He also thought that it might be possible to have a TAVR for the aortic valve (the technology is getting better), which would make it far less dangerous (the aortic valve is actually not that bad yet; a TAVR has been considered experimental so far, but apparently will be considered less-so soon; this would mean that he would “only” have to “slice and dice” the R side, which would be much less ominous). And so, I will fly out for this appt in mid-September. I’ll know more then, and I’m sure will have a ton of follow-up questions for you kindred spirits then. But I’m so deeply grateful for your advice. Again, THANK YOU !

Nicola Laker  You are so welcome Linda. We are happy to answer any questions we can. Please keep us posted !!! Xxx❤

Barbara Laurie  Hey Londa, a TAVR would be great! I am so glad you get to have Dr. Dearani, after much thought I really think he's the smartest person in the room right now, here in the US, RE: EA . Best wishes for a safe trip in September and can't wait to hear how things progress😄🐾🐾❤️

Denise Campbell  Nicola I feel your pain. Lol. I too am feeling down and uncertain. It's almost 6 weeks post op for me. So uncertain about returning to work stressing about what my employer will think. I work as a teacher aide in kindergarten. Worried they will think I'm taking advantage. I hope you start to feel better. And I hope your hubby returns soon

Sophia Ridley  Denise, I'm 5mth post mitral valve repair via OHS. My commute is an hour across London and then a office based but can be stressful role. I was out for the recommended 3mths. I started back one day and then two days the following week, go in later to miss the heaviest rush hour. It's the physical exhersion that's worn me out, so I can imagine looking after little ones all day will be utterly exhausting. If you're able to stagger your return, I highly recommend it. It takes a time to get over an operation let alone what we have had so take it steady. I couldn't have gone back sooner because of my commute.

Nicola Laker  Thankyou. I have pampered mysekf today and no doubt eaten all the wrong things but i enjoyed it! Its the first time I've been on my own in a very long time and had time to really relax and think. It's probably all catching up with me and my mind us probably wandering all.over the place. My husband is home on Sunday and then on going to my mums to look after her for a few days. I'm kept busy which is a good thing.
Not too long to go now ......

Nicola Laker  I don't think any of you should be worrying about what your employer thinks. You need to feel ready to go back to work . Saying that, I will probably be exactly the same 😅 lol .

Wanda Mroz  You are right Nicola... I didn't care if anyone thought I was milking it. If they thought that it was because no one can understand what we go through and what it all means ... Except someone who had been through it. You need to feel ready and you should not rush it and your Drs probably won't let you rush it. Hang in there Nicola.... All of you!

Nicola Laker  Im going to take as long as it takes. I have no time scale and will not sacrifice my healing to rush back too soon. Not sure how they will take that but once they know what I've had done I'm sure they will sort of understand....We shall see 😅 xx

Nicola Laker  Booked in for a lovely head, neck and shoulders massage for next saturday. Can't wait! !! It's for relieving stress so hopefully by the Monday I will be chilled and floppy 😅 xxx

Nicola Laker  I have seen the update how thank you! So good to hear that she will be off the ventilation soon! Hopefully Barbara will then come on leaps and bounds ☺
Good 12 hour shift today. Thank goodness for a shirt day tomorrow!!! I'm exhausted. Booked some time off pre hosoital so I can get my mum sorted with all her various Dr and hospital appointments. That will be one less thing to worry about. Also she is staying with her old school.friend when I have my op as I dont want her sitting at home fretting. Also she is a bit deaf and I dont think Vince will want to shout down the phone in hospital corridors 😅 He will tell my aunt and she can relay it back to mum. Think she is more worried about it than I am. My Dad has been around constantly the past week. Thankfully the room of choice seems to be mums bedroom. He was definitely in there when I went in to get mums tray and I often see him out if the kitchen window. I'm hoping he will be there holding my hand through surgery. I miss him so much.
Anyway before I start bawling, I hope you enjoy your soup. Potato and leek is one of my favourites! !
I'm off to bed now. Enjoy the rest of your day. Prays continue to go out for you all and especially Barbara ☺❤❤❤