Jill Purle - Heart Valve Journal

My Journal

Jill Purleposted a journal

1164 days ago

I might be getting closer to surgery as the Surgeons have requested pre op lung function tests and I've just done that. Fingers 🤞

Best ...Read more

I might be getting closer to surgery as the Surgeons have requested pre op lung function tests and I've just done that. Fingers 🤞

Best wishes to all.

DeLois Tweedy Jill, best wishes to you as well. Sometimes, the waiting is the worst.

Jill Purle Latest update, I'm scheduled for surgery tomorrow afternoon (Friday) BUT, its possible that there is ... Read more

Jill Purle Latest update, I'm scheduled for surgery tomorrow afternoon (Friday) BUT, its possible that there is a case of Norovirus in the bay I'm currently in! If its confirmed I won't be going to Bristol for tomorrow . Fingers 🤞

Jill Purleposted a journal

1170 days ago

Susan Lynn, Pamela Gregory, Rose Madura and 2 others reacted to this

Well, I had not foreseen that just a couple of days after my first posting here, that I would be sending my next as an In-patient being worked up for... Read more

Well, I had not foreseen that just a couple of days after my first posting here, that I would be sending my next as an In-patient being worked up for Surgery!

Those symptoms escalated on Monday night to a point when I laid down in bed I got a huge fright as my chest felt so tight and sore and achy and I was so short of breath so had to sit up and was too scared to lie down again!

I couldn't stop the symptoms and so as a precaution I called our UK non emergency health number 111 at 1am for some advice As soon as I mentioned Aortic Aneurysm, the Call handler said, "Stay put! Emergency Ambulance on its way to you!".

To cut a long story short, (well a 24 hrs story short

), I'm being kept in to have all the pre op tests and investigations and being an In patient means that when they've got all that they need and are happy I will be slotted in for the next available slot for surgery. I.can only hope that that doesn't mean October!!

Mind blowing to say the least.

I'm feeling calm, extremely well cared for and enjoying the "enforced rest'! Accepting that this is all real now because I just tidied up my hospital bed sheets, plumped the pillows and just wanted to get back in it as it winded me so much

!

I'll keep posting here as the days go on to keep busy

There are only so many times a day where you can read the Fire and Evacuation notice on the wall and count how many slats there are in the blind at the window

Best wishes to all.

Susan Lynn Jill - Wow! That must have been frightening for you, but you were smart to make that phone call! I... Read more

Susan Lynn Jill - Wow! That must have been frightening for you, but you were smart to make that phone call! I hope you are able to have your procedure soon - waiting is the most difficult part of the process. Try to rest and keep us posted when you can. We're sending positive thoughts and prayers your way.

Pamela Gregory So glad you are in the hospital where they can closely monitor you and get you all fixed up!!!

Rose Madura That must have been scary. Glad they are taking good care of you. Godspeed.

DeLois Tweedy Jill, what a scary story! But glad you are where they can monitor you. Do as they tell you - rest! I ... Read more

DeLois Tweedy Jill, what a scary story! But glad you are where they can monitor you. Do as they tell you - rest! I experienced shortness of breath, etc twice to the extent 911 had to be called. I'm so thankful for the responders, but still a very frightening thing.

Heart issues are nothing to be laughed at, but you did make me smile when you talked abt reading things on the wall, counting blind slats. I can relate; I spent 1 month in the hospital my first hospitalization.

Hang in there, and I pray you will get the procedure you need very soon. Waiting is the hard part.

Jill Purle Thank you all so much for reading my post and your good wishes and advice. xx

Klara Čičić Dear Jill, hang in there! You are safe now :) Wishing you strength and patience! We are here for the ... Read more

Klara Čičić Dear Jill, hang in there! You are safe now :) Wishing you strength and patience! We are here for the support :)

Rhodie Jacobson Wow! It's so good that you got the help you need!

Jill Purle Alot can happen in 24 hrs. I had the echo and angiogram yesterday, once again excellent care from st... Read more

Jill Purle Alot can happen in 24 hrs. I had the echo and angiogram yesterday, once again excellent care from start to finish.

I have had two chest pain at rest episodes this past 24hrs but swiftly dealt with and resolved with oramorph.

Seen by Cardiology Consultant this morning and I am so reassured and relieved. I am to be moved to Bristol Heart Institute as soon as possible and he did even say this time next week you will probably be on your way home to recover!!!
I will not mind if that slips a bit though, I'm just so very grateful for being sorted.
Factors in my favour and no doubt a no brainer for the surgeons 1) my age 57, and otherwise healthy, 2) no myocardial damage caused so far 3) He said I will sail through surgery. He made it very clear that as soon as we get symptoms with Aortic Stenosis it is a 100% death in 2 years if not treated. Hence, I can be sure that very soon I'll be out the other side.

My '" take aways" to share with others is "listen to your own body" .Medical staff would rather tell you 10 times that its all OK rather than the one time when the disease has progressed far worse and makes surgery more risky .

Have a good day everyone. All the best

Jill Purle Alot can happen in 24 hrs. I had the echo and angiogram yesterday, once again excellent care from st... Read more

Jill Purleposted an update

1174 days ago

Jill Purle reacted to this

Hello to All.

I'm hoping to hear of others' experience regarding onset of symptoms with BAV with Stenosis & Ascending Aortic Aneurysm. I was first ...Read more

Hello to All.

I'm hoping to hear of others' experience regarding onset of symptoms with BAV with Stenosis & Ascending Aortic Aneurysm. I was first diagnosed in 2015 and had been under watchful waiting until October 2022.

Between May 2022 and October 2022(6 months) my pressures went up from Peak 32 to 55 and Mean 21 to 34.

My Cardiologist requested a repeat echo in 6 months . He told me that surgery is now inevitable and I accept that. Up until that time I had been asymptomatic ( as far as I discerned).

So, this past month or so, I've been aware of feeling out of breath far more often, particularly noticed it when leaning over ( head lower than heart) but also going up stairs and after a normal walk around the shops. I'm not gasping for breath but know that I need to stop and "calm down my breathing" is the only way I can describe it. Sometimes I also feel a tightness with it in my chest. Also felt faint a couple of times after standing.

BUT, I do not know if these things are psychosomatic??? or are they commensurate with the deterioration of my conditions. I've left a message with my Cardiologist but he's on Leave for the next week.
Can anyone share their experience of onset of symptoms after having previously been essentially unaware of any.

Many thanks in advance for any replies .

Rhodie Jacobson I am in a very similar situation. I've been told that the symptoms might be from blood pressure medic ... Read more

Rhodie Jacobson I am in a very similar situation. I've been told that the symptoms might be from blood pressure medicine but maybe not. We keep changing the medicine and have scheduled and angiogram.
I decided NOT TO censor myself about sharing symptoms. I listed them all and sent the list in a mychart message. Shortness of breath is so easy to play off and to wonder if it's real but I figure the medical folks have experience with all sorts of people and symptoms. I figure more info shared is better.
I am certainly no pro in this area...I'm trying to figure just as you are. Bless You! It's a lot to think about!

Rita Savelis These symptoms sound like the ones I started to have after being followed for 6 years. Your cardiolog ... Read more

Rita Savelis These symptoms sound like the ones I started to have after being followed for 6 years. Your cardiologist knows what he is doing. You should be followed a bit more often now as he has suggested - with echocardiograms. Perhaps he will send you to a surgeon and you can have pre-op tests like an angiogram. Then you will be ready for surgery when it needs to happen. This was my case. Deciding exactly when surgery needs to happen is an art not a science. There is no clear answer. But usually feeling short of breath is not psychosomatic, and it is definitely a symptom that doctors watch for. Take care.

Jill Purle Thank you so much for the replies. I am very grateful to have found this site and this forum. Reassur ... Read more

Jill Purle Thank you so much for the replies. I am very grateful to have found this site and this forum. Reassuring that it's likely I'm not imagining it and that the Dr's are unlikely to think I'm wasting their time if I report it all to them. Best wishes to all.

Amy Berger Hi - I replied to Rhodie as she had similar question. One thing I will add is that I was in denial ab ... Read more

Amy Berger Hi - I replied to Rhodie as she had similar question. One thing I will add is that I was in denial about symptoms and kept thinking it was all in my head - I absolutely didn’t want surgery so I kept making excuses. One thing I had noticed is any time I went uphill my pulse on my Apple Watch went up to over 120 really quickly. Now that I’m post op 7 weeks, my pulse is much lower. Even though I’m on a beta blocker (which is standard after surgery) my pulse is much lower when I’m walking. I’m really glad that I had gone to get a surgical opinion as he was very clear about what I needed to do.

Pamela Gregory I had the exact symptoms you are describing

Rose Madura I had similar symptoms but kept denying in my mind that it was my heart. I kept chalking up to gettin ... Read more

Rose Madura I had similar symptoms but kept denying in my mind that it was my heart. I kept chalking up to getting older. When told I needed the surgery, I got a second, then third and fourth and they all agreed that the echo didn't lie and neither do the symptoms. I think also that we can be super aware of symptoms as well which isn't a bad thing.

Jill Purle Thank you again for the replies. I guess now it's just going to be a case of learning to live with t... Read more

Jill Purle Thank you again for the replies. I guess now it's just going to be a case of learning to live with the symptoms until I get referred on to a Surgeon and get scheduled for surgery. Can I ask if the symptoms get worse and worse and worse? I'm wondering how much worse it will get? I do realise though that , that is like asking how long is a piece of string

Danielle Elizabeth Your symptoms are valid and I suggest listing them all to your Doctor. I also could not walk up a fli ... Read more

Danielle Elizabeth Your symptoms are valid and I suggest listing them all to your Doctor. I also could not walk up a flight of stairs without needing a break to breath.