The calm has returned today which is a relief. The sedation that Rach has been on can have withdrawal effects and the doctors think that this was behind some of the problems she was having. They increased the sedation and are now reducing it again slowly with the help of different sedatives and for now she seems much more peaceful.
They are trying her off the kidney machine again to see how she gets on.... I've been sat at her bedside for the last hour or so trying to persuade her to wee as much as possible. It's funny what becomes important! We will just have to wait and see how she gets on and if it doesn't work this time they will try again in a bit.
Her infection markers for the pneumonia are coming down slightly but the bug is still present. It's baby steps once more.
We spoke to Jim Barnard, the main surgeon looking after her, this morning again. He is one of the calmest people I've met which is a great quality for a person you need to entrust your little sister's heart to. He was reassuring but did tell us it is likely to be weeks and months, rather than days and weeks, that we will be waiting to see how her heart gets on. The main focus for him currently is to get her awake again and to know that neurologically she is intact. He also advised us again that one of the risks she faces is of blood clots forming.
So whilst it has been a better day, and a much happier one to be at her bedside, she still has a long mountain to climb.
I just wanted to say a big thank you too all the heart community on this site. I know you all supported Rach before the surgery and we really value your messages, and those of your family members too. All the messages from our friends and family are amazing and help when we have the less good days. It is also really lovely to have people to share the good moments with too.
Sorry for the pause, it's amazing how the time disappears in a day.
It's hard to say exactly how rach is. The sedation was completely reduced but her blood pressure and breathing went a bit too high so they have put her back in a little sedation for the moment. There hasn't been much change with her kidneys, we would love to see some improvement there. They are still working on the infection but we're not likely to know how that's going for a few days.
She has been moving a little more which is nice too.
For the moment thats about it, no major progress but fairly stable. This feels like a different stage for the family where even more patience is required.
Thanks again for all the lovely messages,
Vicki x x
My dad has done an email update so I thought I'd pinch that for today, love Vicki x x
Rachel has remained stable throughout today and her sedation is being reduced slowly. She has opened her eyes on a number of occasions today, not least when the physio was preparing to give her a second workout of the day - she may not be conscious but she definitely gave him a warning look! The infection is proving a challenge to the microbiologists and - so far - they haven't found a suitable treatment for it; this isn't seen as a major problem (compared to the others) but it does mean that Rachel doesn't look as well as she did - she has a high temperature and is shivering.
The consultant tells us that there is still a chance of 100% recovery; needless to say, we're longing and praying for this to happen. Rachel has already beaten a number of 50:50 chances and she can be a tenacious and determined young lady - I don't think there will be any lack of effort on her part. We need to be strong for her. Fatigue is a problem, we need to manage our time and energy better, though it's difficult (well-nigh impossible) to go off duty.
We've always loved Rach, but never more than in these past days, when she has seemed infinitely precious to us and we've treasured the moments we have with her. It's good to be able to tell her all that we feel before she regains consciousness and really helps us to understand how special she is. I hope we'll be able to tell her the same things when she wakes up.
Vicki said earlier that she wouldn't have backed any of us to cope with the traumas of the last fortnight - but with your help, we have done. Please stay with us on the journey ahead, we need you.
I can't believe it was two weeks ago today that we had our family lunch together in Sheffield and took rach to get settled in before her op on the Monday. It is so hard to try and absorb the events that have followed.
Once again I don't believe rach or us would have come this far without all the love and support of everyone on this journal and all those who have texted, emailed and come and helped practically. I'm sorry we can't respond to everyone but energy and words are saved for rach at present- for chattering away to her and loving her and willing her on.
She has had a good day. I think she is settling into her new room, away from the ward due to her chest infection (pneumonia). The nurses are happy with her progress and she definitely seems more settled after some small fluctuations following surgery. They are very slowly reducing her sedation and we are starting to see her eyes flickering a bit again.
She has a way to go though, and we wait and hope that her kidneys will recover, that the right antibiotics will see off the pneumonia, and that throughout all of this her heart is benefitting from a rest and recovery is beginning.
At this point I think the overwhelming thought is how much she is missed both by us and others and how much she brings to our lives. She can always be relied on to have a completely original take on things and I miss that. I'm glad that although I've known her all her life she consistently surprises me.
Today's surgery was successful taking around 2 hours. After this, we had the opportunity to catch up with one of the doctors.
Rachel is facing three problems: her left ventricle is very weak, possibly stunned (recoverable), possibly permanently damaged. We won't know for sure how much permanent damage is done without waiting to see what happens to it's function over time on the bivad. The second problem is an infection she's picked up in her chest. This is a particularly resistant infection although the doctor seemed confident this could be tackled. Thirdly, her kidneys are in a state of acute failure. Despite sounding severe, we're assured they should recover in time.
If she continues to remain stable overnight, her sedation will be weaned and she should wake up fairly quickly. This precedes her breathing tube being removed (all being well we can avoid a tracheostomy) and we'll finally be able to speak to her again. As before, this is going to be a huge moment for Rach when she's made aware of all this but she'll be in a much better position to accelerate her recovery.
Her ECG is now looking pretty normal with all the doctors and nurses pleased with it. Even though my faith in seeing this change may be misplaced (I am not medically trained at all!) I still look at this as a great source of hope and believe however wrongly / rightly that this indicates an improvement in her condition.
I've never been without her for this long so really miss her. I remind myself of what she's like outside of a hospital by listening to her favourite songs and have loved having her friends come to visit who talk about stories involving Rach.
Vicki and I will update tomorrow with news and hope to be able to share everyone's thoughts and support with her when she wakes up.
Rach has had another stable night. This is just a quick update to let you know that she went back into surgery at 11am, hopefully to close her sternum if they are happy with everything. We'll update later to let you know how she gets on.
I came to see rach this morning and she has had a stable night, in nurse Laura's words they were very pleased with her. She is back to looking peaceful, although not quite as asleep as I first thought. They are deliberately keeping her sedation as light as possible and when I went back in after her chest X-ray I found her looking right back at me. She stayed very calm and sleepy but had a good look around and I talked to her and stroked her hair and told her she could have a lie in today. I think she was waiting for a good night from my mum though who had just turned up too and got to see her as well. They have upped her sedation a little just to ensure she's comfortable and she seems to be sleeping once more. What a lovely morning- news of a stable night and a peek at her beautiful eyes.
She will be going back into surgery sometime today or tomorrow (op no.6!) to close up her chest but we are happy to be patient and enjoy her stable ness for now.
Happy to have some good news for you all today, I think all the cheering on everyone is doing must be helping.
As we have been warned things are always going to be up and down. Rach did not seem so good yesterday evening and we got a call at 11pm to say that they were not happy with her blood pressure and the flows on the bi-vad and were going to take her into theatre again to see if there was any issues. They took her in and drained some fluid from her chest which had accumulated and since they brought her out she has been relatively stable. Her sternum is open again and they will assess later when they want to take her back in to try and close that. This is a common issue due to the drugs that they have to put her on to keep her blood flowing through the pumps properly.
It's really hard to convey what a fragile line the doctors and nurses have to tread as everything has a side effect and a careful balance needs to be struck. However once again she has come through and we wait hour by hour to see how she goes.
I have a feeling that this is not a brilliant technical explanation but maybe we can update later when we talked properly to the surgeon- and had a nap!
I can't say it enough- please keep praying, keep hoping, and keep on sending messages.
Rach has had a good day so far. She is very slowly waking up; wriggling a little and opening her eyes occasionally. She is still mostly asleep but I think we are all happy for this to be a gradual process and enjoy seeing even little bits of movement. They have reduced the assistance they are giving her with her lungs but for the moment she stills needs the help of the ventilator. They tried to take her off the kidney machine but aren't happy she's ok on her own so she will go back on the machine for now.
She is being so well looked after, we really have been blown away by the care she has received from all the nurses and doctors. And I know we keep saying this but thank you for your messages of support and for cheering her on.
The plan for tomorrow is to stop the sedatives and wake Rachel up. This may happen quickly or slowly (everyone is different) but she will be drowsy for quite some time due to her having been under for over a week. She's been stable today after a good night so is in a good position to move onto this. The last of the ECMO has been withdrawn and she's now oxygenating her own blood.
A scan was performed on her legs as they were showing signs of pooling fluids although this is not concerning the nurses. She remains and will remain for now on bivad support to continue to allow both sides of her heart to recover. I asked the surgeon how her heart looked when he last operated and he cautiously said the right side looked to have strengthened and the left may have been slightly better which to us is excellent news. We're still on the road to recovery!
I'm worried about how she's going to cope with it all. She'll be expecting it to be last Monday with a better than new heart rather than in a position where she's having to fight much more but we're all going to keep strong for her and help her deal with this challenge.
My Auntie Karen has sent me some really interesting material about positive thinking and it's effects on the healing process which I can share with her. I've also exchanged emails with a few former lvad patients who have successfully recovered so she can speak to people with similar experiences as a source of advice and inspiration. This of course is in addition to the wonderful existing support network of friends, family and the heart-valve-surgery community.
So a big and challenging day for us all tomorrow but yet another move forwards.
With love to you all and thanks as ever for your prayers, thoughts and help. I'm just glad Rach will now be able to see for herself how incredible this support for her is.
Rach came out of surgery at about 1945. It went well and they have closed her chest and drained some blood from around it which has improved how the pumps are working. She is back looking her peaceful self and we very much hope she can have a good rest now and a stable night. Sorry for the slow update, we often have to wait a few hours before we can see her properly after surgery.
She has come so far but once again faces risks post surgery so we ask you to please be steadfast in your prayer and support.
I am so proud to have such a tough little sister, and one who is so kind and caring too.
Spencer the teddy is now doing the night shift and keeping her company. Time for some rest for me now.
Rach has had a stable night tonight which is Good and a relief for us all. We have just seen her this morning. They are hoping to take her back into surgery today to check on everything and if possible to close her sternum. They don't have a theatre slot confirmed but are hoping there may be one soon. These are all baby steps but we have had a lot of stable hours in a row and its easy to forget what a big deal that is at this stage.
Thank you again for your messages, there are such a variety and your love and affection for rach shines through all of them.
The nurses explained today that Rach had a rocky night but had stabilised by the time we came to visit. There was a calm atmosphere amongst those caring for her which was reassuring.
I was told not to pay too much attention to the various heart monitors but her ECG looked to me as though it was showing some different movements (which I took as a positive). Her liver is looking good as well which is
important to give her the best chance of recovery.
Following the advice of some of those following this journal, the nurses and other friends with similar experiences, I've started talking to Rach a lot more in the hope she may draw some strength from this. We're allowed to hold hands and I can comb her hair which I know she'll enjoy.
The plan is still to try and close the breast bone, hopefully wean her from bivad to lvad and then wake her up later next week.
I've read several journals which give examples of recovery from inotrope, ecmo and then bivad intervention which helps me know that it is possible for someone In Rachel's position to get through this.
I am keeping in mind that she is her own case, has a unique spirit and that there has been absolutely nothing typical about what has happened so far.
It's Rachel's dad, Peter. Rachel was in surgery for around 3 hours this morning and had two pumps attached to do the work of left and right ventricles, this takes over her circulation from the ECMO machine, which now only oxygenates her blood. This resolves the risk of her lungs failing.
She is still critically ill but has moved a short step from the knife edge she has been on for the last few days (seems like a lifetime). This op is not going to fix anything but is meant to bridge her to further treatment or recovery.
Rach is at risk of serious complications from the new devices - the surgeon quoted this as a 40% likelihood. Her heart is bruised and swollen and inactive on the left, with abnormal ECG. The plan is to let her stabilise again for a few days then reexamine her in surgery and close her breastbone, swelling permitting. If we get to that stage she will then be brought round slowly - over a few days - and we then have to wait again to see if recovery is possible - or implant of a pump, or transplant.
I know this sounds bleak but its actually another step forward - we've been warned that we are at the start of a very long road. When Rach is conscious she will need a lot of support from family and friends - much more than we are giving now. So those of you wonderful people who have offered to come and stand with us will be very welcome then.
To all in the mitral valve community - it seems clear that this situation has been caused by underlying heart condition. While it was triggered by valve surgery, it should not cause concern to anyone facing this in the near future.
Thank you again for your messages. prayers and kind thoughts - we value them more than I can say.
Rach is out of surgery ok. We will post a full update later. There is a high chance of bleeding in particular for next 24hrs so please don't stop praying just yet. But be glad she has managed another major surgery which is a good step.
Just a quick update to say that we were told yesterday that the operation could take up to six hours, and we often then wait a few hours after that before we can see her. So please do not worry if you do not hear any update until tonight or later. Instead please pray and hope for her excellent care to continue, for the right side of her heart to be strong, for there to be no complications and for all of the family to stay strong throughout.
Rachel has had another steady night for which we continue to be grateful. Lawson and I counted to the 24 hr mark yesterday but every hour is still critical and is good to see go by without incident.
We have just spoken with the doctor about what happens next. It is not sustainable for her to stay on the ecmo so she will have another surgery tomorrow morning to put her on a different system that buys her more time. Ideally they will put in this system just to support the left side of her heart which is the bit that is causing most concern. However they will do the same for the right side if it looks like it will struggle. The outcomes are better if it is just the left though so please pray this is the case.
As always there are risks associated with the surgery and she continues to be in a highly critical condition. Her organs have had a chance to recover a bit on the ecmo which is positive- and we have to remember the positives. She has come through so much already.
She still looks remarkably peaceful and I hope she is dreaming sweet dreams oblivious of what is going on.
We are all struggling to come to terms with everything and to know how to keep going. Thank you again for all the support, we couldn't manage without it.
There's been little change today which is actually very good news for us all. Rachel is still stable and certain aspects appear to be improving. Circulation to her foot is back to normal with it looking nice and healthy and liver function has improved although only one reading has been taken so far (a trend needs to be established to know for sure which requires more readings).
We're thrilled that no complications have manifested over the first 24hours of ECMO with blood count up instead of the usual down due to bleeding.
It is too early to determine whether the heart itself will recover. The x-rays from today show no change but it's positive to see her looking so well despite this.
None of this detracts from the severity of her condition. She remains critically ill. The ECMO practitioner explained how her heart beat was still very abnormal despite showing some ability to function. We get the feeling that recovery is not imminent.
I find it really strange to be so calm in her company and so distressed when I'm not by her bedside. To me, she still so beautiful and very peaceful - blissfully unaware of any of this. It's impossibly difficult to not be able to hug her or hear her speak.
With the nurse's guidance, we've started a diary which is kept by her bedside to record our thoughts but also any events. The purpose of this is to help Rach come to terms with what will undoubtedly be an incomprehensible situation when she awakes expecting it to be the morning after her surgery. We think this is a great idea and also allows us to express our feelings to her directly.
The plan from here may be to upgrade to a bi-ventricular method if ECMO in a few days in order to more effectively reduce the workload of the heart. This may or may not be necessary but we're glad for now that her body is receiving a much needed break without incident and free from large doses of drugs to stimulate the heart.
As with all previous messages, thank you so much for your support. You have no idea what this means to us all. Prayers, offers of help and other kind words are all incomprehensibly touching and a real source of hope and sustenance.
We will continue to update here and hope for more bits of good news tomorrow.
We have spoken with the doctors this morning and Rach has been fairly stable overnight. It is great there have not been any complications of the ecmo so far. However she does remain in an extremely critical condition and we are still thinking hour by hour. But she's here and fighting and for that we are immensely grateful.
Just to say thank you for all the emails, texts and posts on here. I'm sorry we can't reply to all but please know they really do sustain us when things are so hard.
It has been an incredibly difficult day. Rach has been transferred to Manchester and has had surgery to be put on the ecmo machine. However we got a major reality check earlier as her liver was failing without the ecmo and her circulation poor to extremities. The ecmo is very risky, chief risk being bleeding and we have been advised that the night should be taken on an hour by hour basis. Earlier we were told her chances were 50/50. It was like a physical blow to hear some of the things the doctors have said today.
However I am relying on her toughness and stubbornness that she has come this far. I can't explain how important she is to us so please keep praying and hoping.
Hi all, I'm going to pinch my dads email update for this as he's summed it all up fairly thoroughly...
We thought we'd update you on what's happening with Rachel; if there's too much information please ignore it but keep on praying.
It seems that when Rachel had extremely low blood pressure shortly after her op, her heart was not filling with fluid and responded by triggering a response similar to a heart attack. This has left some of her heart muscle inoperative - the surgeon described it as 'hibernating' and possibly scarred. There is a possibility that some of the muscle function will recover, but until it does she cannot sustain blood flow round her body without a number of devices and drugs.
She is still sedated and on a ventilator (looking lovely to her dad, she did have her eyebrows done specially for this) and is unconsciously clutching a teddy bear which one of the nurses has attached a drip to...... the staff are wonderful, caring and supportive, we can't praise them enough.
What next? If Rachel shows any signs of improvement - measured in blood flow - she will stay where she is and, over a period of days reduce her dependence on the drugs, pumps and ventilator. If she doesn't improve, it's likely she will be taken to Manchester and put on an ECMO machine, which does all the work of the heart until it recovers - or until other solutions can be found. In the last few hours her blood flow has increased slightly, but we face a long wait tonight to see if this continues.
We're really tired - we were called into the hospital at 4 am this morning - but coping OK so far (a few tears and long silences excepted).
It's such an understatement to say that we value your prayers; for me and Caroline they're our 'life support' - thank you again and especially for all the messages of love and encouragement, we treasure them all.
Rach came out of surgery just before 6. They have done the minimally invasive repair which is good. It was a complex repair which is why it has taken so long. She is in intensive care and still asleep but getting very well looked after. I will let you know more when we know.
What is most striking to me as I sit here in the hotel the night before Rach goes into surgery is just how remarkably strong she's been throughout the past year. It seems forever since we first came to know that she would be having surgery and as is probably always the case for those that have to go through this, things have not been easy!
I don't think anything can really prepare you for something like this. She's been through a cycle of anxiety, tears and stress but has shown an immense fortitude which neither her nor anyone else's writings can convey to anyone kindly following this blog. What has hugely helped with this are her friends, those of you who have offered words of kindness and shared experiences from all corners of the world, and more recently the reassuring presence of an excellent surgeon and hospital staff.
As a result of all this support and a good measure of her own strength, I am happy to report that whilst nervous about tomorrow, she's upbeat and seems ready to tackle this last hurdle. She tells me via text:
"They are plying me with cheese sandwiches. I've had a shower, swabbed my nostrils and am sitting watching Downton..."
We're all heading back to the hospital first thing in the morning to hold her hand and give her as many cuddles as we can get away with before she's taken to theatre.
Vicki and I will be keeping this updated over the next few days so will report back soon with news.
Just to give you a quick update on today. The whole family met up in Sheffield and had lunch and then took Rach to the hospital. She had her pre op tests, squirting blood impressively on the blood test, and then was given her bed. Next important task was choosing the evening meal. The hospital have been great so far. Everyone has taken the time to answer all of Rach's questions, from the doctor to anaesthetist (can't spell that!) to the surgeon who she's spoken to tonight. All she has to do now tonight is have a shower and a sleeping pill and try and get some sleep before tomorrow. She should start the op around 8.30am, we're hoping to go see her very briefly before she goes in and then it's just waiting time.
She did ask me to mention that signal is a bit rubbish in the hospital so she doesn't have wifi. She can get texts though.
I can't really believe the day is so very nearly here when she can finally start the road to getting better :-) Thanks again from me and all the family to all the people who are thinking of and looking out for her.
Tomorrow I will get admitted to northern general hospital ready for surgery on Monday.
I am rushing round doing all the preparation and getting my house in order. My water bill came through as unpaid (their error) so I had to complain about it, I whipped out the 'BUT I'M HAVING HEART SURGERY ON MONDAY' card swiftish and it did the trick. There has to be some perks right? Anyway my boyfriend Lawson has been handed all the house bills and cleaning duties so I can concentrate on getting better. He bought me a lovely heart necklace with a diamond in the middle, symbolising my heart being fixed. I'm a lucky girl really aren't I. Thanks again to my friends and family who have been there for me :)
Speaking of which I will be handing over on Monday to Lawson and my sister Vicki (not sure she knows yet but hey) so they'll be updating everyone through here.
I've shared my journal now with family and friends, feel free to write in the guestbook it'll cheer me up when I'm recovering :)
After more than a year of waiting I finally have a surgery date! It's 11th November, which is A WEEK AWAY. In a way though, it's better not to have the date too far in advance.
I have already been through a spectrum of emotions from smiley to excited to nervous to scared to very very tired but I'm glad the wheels are in motion.
I've not written much recently, because it's a bit overwhelming to be honest and I feel like I'm talking about my heart all the time in my day to day life now I have a date.
My family, boyfriend and friends have been great at looking after me. I'm so grateful for them and hope that I have a good surgery and recovery so as not to cause any more stress!
At the hospital they're all made up this surgeon has started operating there, which is a really good sign. And it's good to be at a hospital where people are excited about things. Sometimes that's a rare commodity in the NHS.
Surgery is on the cards very soon! Seems odd to be excited at the prospect of surgery but I've been waiting all year now and I'm ready. The title of this post is because I went to the home of the Beatles with my sis recently. It was awesome.
I met Mr Hunter at Sheffield and he was really informative! He is confident he can repair minimally invasively and assures me the quality of repair just as good as a sternotomy approach.
He told me some interesting things will I'll summarise quickly:
- I asked about migraines as alot of people on here suffer with them post surgery, He told me to speak to my anesthetist as apparently different brands have diff side effects and the cheaper ones are more likely to make you sick, constipated and get migraines.
- He also asked about my fitness and I explained I've never been able to run long distance. I've gone to the gym & was a good sprinter but I've not been able to do cardio without really struggling. He said in younger people he finds they don't get breathless walking or doing stairs even when the regurg is particularly bad like in myself.
He said I should be able to run properly when he's fixed me! That blew me away. No-one ever told me that before.
He looked at a chart from 3 years ago and told me even then my heartbeat was disrupted with 'atrial ectopics' which have now worsened and he believes I am developing atrial fibrillation.
At the time of this test I was told everything was fine, and there was nothing to be concerned about. I am a bit frustrated someone knowledgeable couldn't have dealt with me back then, and then finding out I need heart surgery at 26 might not have been such a horrible shock to me.
Anyway that's enough babbling for now. As a disclaimer, I have paraphrased what the surgeon said and so it may not be very medically accurate :)
Hey it's been while since I posted! Can't believe I last wrote in may. After some arguments between my gp and the hospital, I have an appointment at Sheffield hospital with a surgeon who I'm told is the best in the uk for min invasive surgery.
I'm going to find out if he is confident he can repair the valve then decide which surgery is for me, traditional or min invasive. I'm so lucky really but it's a long journey.
I have a new job starting at work next week and I am trying hard to do more in my free time rather than give in to being tired. I still fret but thats just my nature. everything's good :)
I went to the surgeon today, and he is alot more experienced than the information online indicated which set me at ease a little.
He suggested referring me to a colleague regarding a minimally invasive repair. I was taken aback as I've already asked and been told point blank, no this isn't an option for you. His preference is not to do surgery this way but he was keen to let me decide, which I respected.
When I left the appointment the prospect of more decisions and waiting (he mentioned Autumn) just floored me. Now I've calmed down, I can see that this is good news. I think I got too worked up and lost perspective.
But what I'd love to know is -
- Both mitral leaflets are damaged, am I even a viable candidate for the min invasive approach?
- Were you declined minimally invasive for mitral valve and what reason were you given?
I'm leaning towards the traditional approach, but it's possibly because I can't IMAGINE how on earth they manage a minimally invasive repair properly! So I might have to try and be a bit more open minded and look at the information.
It's good just to write these things down and feel like I'm among people who know what I'm talking about!
I went to my GP and asked to be referred to a more experienced surgeon, however it turns out the most experienced surgeon in my primary care trust is the one I've been referred to.
But as I mentioned last time, he's done 45 mitral valve surgeries in the 3 years I can view online. I'm sure he's good, and I will go to his appointment and find more about his stats.
I can't pretend I'm not disappointed though, this was one thing I didn't want to compromise on. I can't be referred to the next closest hospital, Liverpool, because it's out of my primary care trust so is funded by a different area. It's only half an hours drive away and has some really experienced surgeons.
I'm sad but this is the NHS and it's for free, so perhaps I should be more grateful.
Things are pretty tough at the moment. I seem to be having a run of bad luck. I really just want to get this sorted out and start a new chapter in my my life as it's hard to keep positive.
I went to my new consultant today and had an ECG and echo. My mitral valve is 'leaking like a sieve' but my heart is not damaged as a result of coping with this,
The consultant said he expects I will be having surgery in the next few months, but that will be for the surgeon to decide.
I also wanted to mention I've been on the new site that has UK surgeon data: http://www.scts.org/patients/default.aspx
It lists patient outcomes by hospital and by surgeon, and you can see how many of each surgery they perform. I've already looked up the surgeon I will be referred to and seen he has done about 50 mitral valve surgeries in about 3 years, but their patient outcomes are good.
I'm not sure whether to ask for a referral to the next heart hospital in my area as it has surgeons with more mitral valve experience. I'm sure the surgeon recommended is extremely competent, but a repair at the age of 25 years old needs to last doesn't it?!
Anyway, last thing. I got Adam's book and it was great. It scared the cr*p out of me but it pushed me a little bit closer to being ok with what's going to happen.
I finally had my appointment on Tuesday to find out what's happening with my heart.
The consultant said the rest of my heart isn't affected but the valve is severely leaking. He stressed that realistically I will probably need surgery within the year and there's no benefit in risking waiting. He said it absolutely has to be open heart surgery and there's no chance of a minimally invasive operation.
He put a halter monitor on me to see if I'm going into a fib. He said he'd write to my doctor if I am.
He said they'll do a 6 month follow up from my last echo to see if my heart is becoming enlarged. Having said that though, they sent me an appointment for a follow up in June, which would be a 9 month follow up. Which, if he's stressing I need surgery within a year is very poor.
I'm getting pretty down with the doctors being so offhand with my healthcare.
Bit of a sad post but I think I'm just getting used to all this, I finish work on Christmas Eve so I'll be able to travel to be with my family which will cheer me up.
edit: to add incase this is of interest to anyone else -
I asked about migraines. He said categorically it bears no relation and that there is only a relation between a hole in the heart and migraine.
I ended up going to PALS (it has a nice name but its where you go to complain about the NHS)
They were great and got me an appointment moved from may to 18th December! Amazing!
I had relaxed about the surgery and now I'm getting all worked up again at all the information I'm about to find out! But it's partly good excitement to get my questions answered
I'd love to know - does anyone have vision problems/migraines?
I've had a lot of problems with this over the past couple of years and this is the period in which my conditions worsened. I'd been to a opthamologist and a neurologist and they'd just said it was nothing, but one GP had mentioned my heart and vision could be linked.
I wanted to say how amazing it is to read all your journals. It is really interesting to me and a comfort as I have no medical information and no-one to talk to yet who is in the same position.