Nicola's Journal

Well i never thought this day wouid come, but here it is. Year to the day of my life changing surgery. I have seen my heart consultant amd a team from St Thomas', , in March, amd they are very happy with how my heart is functioning especially after the problems following surgery. They are also saddened by the fact that i will never reap the benefits of the improved function due to my throat/breathing issues caused in Icu. Im back to see the ENT again this month for more videos of my throat to check if it hasnt become worse. Im praying that it is the same as i really dont want to lose my speech altogether and have to go through the trauma of another tracheostomy and surgery to suport ny windpipe. How would i shout at my husband to bring me up.a cup of tea? 🤣 Im feeling the same so im sure it will be ok. Still waiting on work to officially exit me from the company so I'm in limbo really. Still attending the Critcal Care meetings which have been a huge help. Well i hope i sleep well tinight. My mind has been going crazy all day, going over it bit by bit, up until speaking to some doctors in tbe side room, just before they wheeled me through the door under the lights, that i could see behind them...... and then nothing. There wont be any celebration of this suregry as i will be celebrating when i left icu three weeks later. This is the day i got ny life back.

Well what can I say. I'm obviously in for the long haul of bad news. Breezed into the hospital for what I thought would be a quick routine scan of my kidneys. I have suffered with kidney disease since at least 2000. It could be longer but that was the first time it had been flagged up to me. My tests have been so stable since then that the consultant passed me over to my Dr to do the yearly tests. So the scan goes ahead due to acute kidney injury in ICU and being on dialisysis. The tests my Dr preformed before Christmas were all petty much back to pre surgery so I wasn't expecting anything wrong to show. The scan showed that my right kidney has shrunk and basically given up working. My left kidney is not functioning to its full capacity. There are also 5 water filled cysts on my kidneys. The good news is that there was no nasty tumours or cancer showing. So now I sit and wait to see my Dr regarding the report the hospital send out. Thank goodness I'm going away for a couple of weeks. I don't think I can cope with any more bad news! And if they request to look at my lungs I'm running away and hiding!

I walked into the appointment on my own under the asumption, that the ent consultant i saw back on August had basically told me that my right vocal chord was paralysed, and that this was supposed to be finding out which method of help would be best for me to help my speech. Unfortunately this wasn't the case. The diagnosis was completely diffetent and far worse. Both my vocal chords are working...which is good. But at the top, it's been so severely damaged, it's healed but so tight that my chords won't close, hence the speech/sound issue, and they don't open fully which makes my breathing hard as only have half my airway open. This is mainly what is restricting me from walking up any gradient or stairs. Cold weather, dry heat all makes it worse. And trying to sing or even hum sounds terrible and get out of breathe. I thought making my chords work harder they might work better but apparently it won't. I'm glad that I now know but on the other hand it's not what I wanted to hear. They could try and laser it but it comes with a huge risk of it healing from that and being even tighter. That would cause complete block of airways and would have to have another trachy. I really don't want to go down that route again. That would also mean further surgery to my windpipe to support it and most likely no voice/speech at all. It might work but it's a risk right now I'm not prepared to take. I'm seeing him again in 4 months and will have another chat and see how it is. He said if I get a sore throat and breathing gets worse, go straight to hospital for steroids and a nebuliser. Great. Another thing I need to add to my ever growing travel medical insurance! Apparently it's quite rare to happen and I'm special. Shame special doesn't make it better though 😣😣😣😣 I attended a return to work meeting and had just told them my new diagnosis, and they made a decision there and then. They are not taking me back. Goodness knows who will employ me now but im sure i will find something else eventually. Pretty rough week all in all 😣 But hey, onwards and upwards and not having to go to work is a good thing. More time to spend doing what I like 😊

My ICU consultant has badgered the ENT and finally, after waiting since my referral in August, my ENT appointment is this week on the 25th August. I still have no proper voice and I can't see my vocal chord suddenly springing info life after all this time. But I am hoping that they can do something that will make my voice sound better and people can understand what I'm saying. Mostly, I would love to be able I sing again. Never thought I would miss that so much. Fingers crossed!!!

Myself and my husband went to a meeting with other ICU patients and run by two consultants, one of which looked after me during my 3 week stint in ICU. I had a fantastic nurse who looked after me on a few occasions, washed my hair, helped wean off my tracheostomy and generally was my angel. I finally got to see her again at this meeting. It was lovely to be be able to speak to her for the first time and say thankyou for everything she had done for me and my husband. The meeting was a very good experience. I was the only one who had heart surgery but it was lovely to hear people's experiences of ICU and I believe this has finally helped me put a lot of this to rest. Except for not being able to sleep in the dark. I'm not over that one yet. The consultant wasn't happy that ENT still haven't seen me and will be making a complaint. To date, still no appointment. I will ring him this week as I have been away the last couple of weeks, and he said that he can get me seen in London within a week. It's more of a journey, but I would go to the other side of the world if it meant I can get some of my voice back. The left vocal chord has got stronger but my right is still paralysed. Therefore I still sound hoarse, can't sing and can't shout. It's frustrating and tiring. So to date in still waiting for ENT, kidney scan and appointment with my heart consultant. I'm still having breathing issues but not sure how they are moving forward with that. I think they are waiting on the ent results first before they start on the lungs Still get terrible chest pain and I'm sure people think I'm making it up. 6 months now and even this morning as I went to get out of bed, I got a seering pain through my chest. And it's still tender to touch. Does anyone else still suffer with pain after this long? Lifting and vacuuming are still painful too. Can't lay on my sides and laying on my front is not too bad but it's getting onto my front and back up which causes more of the problems! My heart seems to be ticking over quite nicely. It still seems strange that I don't feel it thumping and having one of the extra pathways ablated, I miss my fluttery sensations too. What I have found is that when I do get palpations, which are nothing like I used to have, they are more noticeable because my heart seems so quiet now. I'm back for another session with the peer support group in January. And I think this will be even more beneficial as I feel I'm losing my mother. It's tearing me apart as I can't do anything for her. The extra support is great to have around me and the consultant is really on the ball.

I saw this on a other fb page so had a look on the Internet to find out more. Very interesting read for Ebsteins and anyone else with Tricuspid TR. http://www.valtechcardio.com/2016/09/valtech-cardio-presents-cardioband-tricuspid-successful-first-in-man-cases-and-2-year-cardioband-mitral-data-at-pcr-london-valves-2016/

I was asked to attend this appointment by one of the Critical Care Consultants who looked after me during my stay there. It was a long day discussing my illness, operation and unfortunate post op circumstances with various Dr's, physiotherapists, psychologist and occupational health. It was very informative and I feel talking through what happened has helped me, especially having things explained. Memories come back at the most unexpected times and it does make you question yourself if you are going mad and what was actually real and what was either hallucinations or just bad dreams. I told the Dr everything that I could remember. The Dr and one of the psychologists was very keen to hear everything and put my mind at rest that I haven't lost the plot yet! The discussion moved onto the complications and apart from the obvious damage to my vocal chord, there is a possibility that there may be some damage to my windpipe to. They are chasing up my ENT appointment for me and are keen for me to let them know if it's still not sorted so they can refer me to Guys Hospital. Also, apart from already having iga-nephorathy (kidney disease) before my op, i now have scarring on my kidneys. My lungs are still not working to full capacity so they want to get those checked over. Finally my heart, which has caused all these other problems, is actually doing very well. But as my local consultant hadn't seen me since I've been out, they will get that sorted for me otherwise I won't see them until next year and they are not happy with waiting that long. The Dr also mentioned some jab that I need to have as well as the flu one (which I have ever year anyway). Can't remember what it's called but they are contacting my Dr on my behalf regarding getting this done. The occupational health & physiotherapist were very good and are arranging a sliding board that I can use to help me get in and out the bath on my own. I then went into see a psychologist on a one to one without any Dr's etc. It was a tearful time but helpful in understanding that what I'm feeling is natural after such trauma. Finally I braced myself and walked into the ICU until and stood in the room looking at the bed I spent 3 weeks in. All very surreal!! It was unfortunate that I didn't get to see many of the fabulous nurses that looked after me (and my husband) as they were either on a different ward or not on day shift. I did have a lovely meeting with one of my physios. I even had a photo of the 'star patient' badge they made me (which I still have somewhere!) which I showed her. She said she would never would of recognised me as I looked so well. We did have a few giggles, well I couldn't actually giggle with them until I earned my speaking valve and then they used to try and get me to sing 😁 once I was awake, I do have a few good memories which I try to think about during the bleak days. Few tears were shed again but I really held back until I had got out of there. I'm so glad I went in as the memories I have of what I thought the ward was like was actually quite different in reality! It wasn't such a frightening looking place as I remember thinking it was. We have been invited to a group meeting for ICU survivors and their families so we can mingle and talk to other people who have been through similar circumstances . Think the Dr's then do some sort of talk but as it's their first ever one, it will probably be a bit hit and miss. All the same, I think it's a great idea and I will be going. So now I'm waiting for reams of various appointments to appear on my doormat and in the meantime I will be relaxing. 😊

I'm really terrible lately with getting things done. I'm going through a lazy stage and I need to buck myself up. I had my waste of time appointment with ENT. I had a camera put into my throat and basically he thinks that my right vocal chord is paralysed. The consultant is referring me to another one and how long I will have to wait is anyone's guess. It's been 4 weeks already and still haven't even been given an appointment. The prognosis of my voice was "you will never be in x factor". Well I can live with that, I just want to be able to scream and shout and people understand what I'm saying. Also I would have never imagined that talking could physically wear you out, but it does. Trying to talk to my mum who isn't very good holding a phone or speaking as she has parkinsons, is like a comedy sketch and very hard work. I feel like I have attempted to run round the block after 5 minutes on the phone. 😂 I have my Critical Care Consultant appt on 16th so I will speak to him about getting seen by someone there about my voice. He was quite concerned about getting it sorted asap when he phoned to arrange the appointment and told me to let him know if I bang my head against a brick wall which I now feel like I am doing. Driving wasn't too bad but unable to turn myself round to see the blind spots and it also made me ache quite considerably, so I have put that back on hold for a while. I'm still signed off from work and likely to be for quite a while yet. My chest is still painful and tender which I was hoping would be OK by now after reading from everyone how quickly their sternums healed. Still struggling to lift our kettle and doing everyday tasks. I did try to vacuum but failed miserably. My doctor isn't concerned and just said that due to complications everything will take a while to settle down and to be patient. Well that's it for now. Looking forward to seeing the ICU consultant and getting his perspective on everything. Will endeavour to post on my return. I have loads of sheets and questionnaires that they have sent to take with me when I go so that's my job for this week, to sit quietly and fill them in. Have a great day everyone and good luck for all those having surgery. Xx

Just over 3 months since my cone procedure and other tweaks the surgeon made. Still have pain in my chest and finding even the kettle too heavy to lift. Going to have a short drive this week as I'm going crazy with these four walls. My husband is coming with me in case I can't cope. Hopefully I will be OK! I know I'm obviously behind with the recovery process due to the major complications so I just have to be patient. I finally had an appointment come through last week to see the ENT consultant regarding my speech, or should I say lack of. It was for 20th October! I rang them and squeaked down the phone that it wasn't acceptable. They disappeared off and came back with an appointment for this week! It will probably still take a while for anything go be actually be done but at least I will be in the system. Had a lovely phone call from one of the Critical Care Consultants who looked after me whilst I was in ICU after my operation. They have arranged for me to go to a meeting with himself and several other Dr's, psychologists, physiotherapists and numerous others. They are also going to take me back to the ICU unit where i spent 3 weeks, and take me through what happened and what they had to do to bring me back and it get me well again. The consultant said that I can decline to see ICU but I would like to see all the nurses who do a fantastic job to say thank you (although thank you really isn't enough for what they did). They deserve medals. I also think it will help me piece together the hazy bits I can recall and what was real and which was hallucinations. It will be emotional. So it's all good news so far and hoping the next three months sees my voice being restored to some sort of normality!

Today is the first time I have been out,except for my trip home from the hospital. It was tiring and today my legs ache! My husband came with me as I had to get a train to London. Luckily the hospital is close to the station. We arrived early and had only just sat down when he surgeon called us in. This is the first time I have seen him since the procedure on 3rd May although he came into see me on icu and speak to my husband a few times. He was very blunt, in a nice way, and explained exactly what he did. Hearing how long they stopped my heart and how long a machine was keeping my body functioning was amazing! He was slightly concerned about my lack of speech and will be referring me to ENT to get my vocal chords looked at. He is sure it's not the tracheostomy site that causing it as when they tried to get me off the ventilator when in ICU, it didn't work so they had to try and get it back in place. So it's possible they have caught it. He has also referred me go to Speech and Language therapy to try and improve the strength of my voice if the chords are damaged. My heart is doing very well and overall the op was a success. He is very happy with my tests etc. The surgeon then went on about what happened after the surgery. I wasn't to keen on knowing but he told me anyway. I don't need to put it all on here but suffice to say I came out the other side do all is good! There was a few things even my husband had forgotten or didn't know about. The nurses in ICU are the best and I will be forever grateful for them for making me better. It's a long road for me but i just have to take each day as it comes. My recovery being delayed isn't what I wanted but the end result will eventually be the same. I spent my first night laying flat in bed with just two pillows last night. I have been using a bed wedge but lately I've been sliding down during the night. It was nice to be more 'normal'. Well I'm off for a snooze as yesterday was pretty hectic but nice to get away from these four walls.

Saturday morning and sitting in my own bed with a nice cup of tea. Pain has gone and now it's back to just sternum pain/twinges. So glad to be home. Now back to recovery!

This is how my luck goes. I did manage 9 days at home and wasn't expecting this to happen! Couldn't get comfortable Monday evening at all. Was fidgety all night and by 5am Tuesday morning I had a seering pain from the right side underneath my ribs going right round to my back. Dr's sent an ambulance and by 12 pm I was on a ward hooked up to antibiotics and various tablets given to me and injections for good measure. They were concerned about my lungs having a clot so a CT scan was required. From the x ray they said I had an infection and fluid but still wanted to check for a clot to be on the safe side as I was now also showing shortness of breathe. Finally had the CT scan on the Wednesday afternoon and it was clear of any clots...phew. The Dr's were concerned after all the post op complications that they have kept me here until.the infection has gone and the fluid has drained away. Hoping that my blood tests they are doing today will.show an improvement and I can go home tomorrow. I have had quite enough of hospitals and noise for a lifetime! I want my own bed and some peace and quiet!

Just a general question. Did everyone who had OHS sleep propped up or have some of you slept flat on a bed once home. I would love to sleep flat as I can't get comfortable and it gives me terrible back ache and neck ache sleeping half sitting? Also how long does it take for the lump at the top of the chest to go down.?

Well where do I start. ....I can only really tell you what I remember so here goes. Got up on the morning of the 3rd May and waited for the nurses to let me know what time I was going down. Apparently I was second as they had a baby first as a priority. Myself and my husband sat and waited. Eventually it was time to scrub myself and get into a clean gown. Vince followed us down to the theatre and the last thing I remember is speaking to two different doctors as they came through a door in front of me. Fast forward and I wake up about 10 days later on the Thursday. In between this time I vaguely remember hearing people speaking to me and I was fighting to reply, blurry shadows and then darkness again. When I woke I can't remember if my husband was already there or came in after but I was shocked to hear I had been on a ventilatior and asleep for that long. I was still on oxygen and I couldn't speak. Vince told me that they had to wrap my hands up in what looked like boxing gloves as I was continually trying to pull the breathing tubes out. And that my face face was puffed up like a ball. After he left my friend came in. The nurse in ICU gave me a white board so I could communicate but my brain and hands wouldn't co ordinate. I couldn't talk and I couldnt write. I felt totally useless. The doctors came in and put three drains into my lungs which was sheer agony. I know I told the nurse I needed to be knocked out as the pain was excruciating and the next thing another three days had passed and I woke up on Sunday , but this time with a tracheostomy. I was still having problems with my lungs so after a discussion with Vince, they decided this was the best option. The following day was a bad day. Mostly spent in tears and devastated that everything had seemed to have gone so wrong. The nurse was so good to me and when the physio team came a couple of days later, tbey were delighted to see my determination to get better and get out. Each time I passed a goal my nurse gave me an award. The best being the trachy being deflated so I could finally sip water and then a voice box. This made a horrendous clicking noise when breathing and I sounded a bit like Stephen hawking but I didn't care. I could at last communicate and sip water and a cup of tea! After a further few days the doctor finally agreed that I was out of the woods and it was ok to remove it. Glad to say that at this point my entire body had started to return back to normal size. Even my toes had swollen up. Two days after this I was moved to a ward where I could at last have a shower, although the nurses in ICU washed me everyday and also washed my hair. They were absolutely fantastic to myself and supporting Vince through a very tough time. I spent another 10 daY's on the ward on bed rest as where they had poked so many needles and canulas into me, (I was black and blue all over) , they had damaged the soft tissue in my right foot which meant I couldn't stand on it. This meant my physio took a step backwards. I'm now home and learning to walk again. My legs have shrunk to half their size and I'm finding the stairs hard but one day at a time. I'm also finding it hard to sleep propped up. I get cricks in my neck and I'm worried about laying too flat. (Any advice on that would be apreciated). The pain in my chest comes and goes and I just can't seem to get comfortable. The district nurse is back tomorrow to change my neck dressing and it's healing really well. I sound quite hoarse and I can't shout. I think it's a mixture of the ventilator tubes rubbing my windpipe and the trachy tube. I'm sure it will right itself eventually (now been told it takes 3/4 months! ) The actual cone procedure they did on my triscuspid valve was apparently a success. I was just unfortunate to suffer numerous complications post op. I have Ebsteins Anomaly like our other fabulous heart sister Barbara Laurie. This op had to be done eventually and I'm grateful to everyone on ICU for making me better and looking after us so well. I can look back at some of it and smile, especially when they deflated the trachy. I coughed and put my hand over my mouth, forgetting there was a hole beneath it and poor Vince would cover his face and say "stop spitting over me". And coughing so hard my voice box flew out.... I don't want to remember much else and when I close my eyes at night I really have to think of nice things as the images of blurry shadows and voices still haunt me. It's been a tough ride but I'm on the other side and now I just need to take time to get back on my feet. Just wish I didn't feel so terribly tired all.the time. Sophia I did get your card and little bear. Thank you so much. It was in ICU and I got it when I woke the second time ☺ Thank you x Almost forgot to say that when I went to the ward after ICU for almost 3 weeks, it was on the 8th floor and by a window so I had fantastic views of parliament, big Ben. .... and the sunsets were amazing. ☺

Well that's it....I'm in my hospital bed and waiting for surgery tomorrow. I'm due to go down about midday here in the UK. I'm feeling ok but the long morning ahead will be hard. Will post in a few days when I'm up and about. Good luck to all those due for surgery in the days ahead. Love to you all. Xxx

Not a good time for my body to start being unwell. Swollen tonsils are not welcome here Dousing myself in saltwater gargles, antibiotics and a lot of water! It needs to disappear quickly! !! 😢

I've woken up today feeling sorry for myself. My husband is away for the weekend and I'm at home relaxing. It's perfect except for some reason I seem to be very tearful. Is this usual or are my hormones playing up? I'm having a pyjama day and taking cold meds as I feel a bit blocked and thick headed. This is not what I need right now! I'm hoping that it's due to sleeping heavily last night, but what a great nights sleep I had! Hope that everyones upcoming surgery goes smoothly ❤ xx

I have never suffered with high blood pressure but the last 3 weeks it has been sky high? There has been a lot going on what with work, having to stay and look after my mother 4 days/nights a week and still work 48 hours over 4 days and then there is all the housework at home where I spend two of the three days working long shifts and going to bed when I return home after work. I'm not very good company for my poor husband who doesn't get to see me at all really. Needless to say Im pretty much exhausted all the time. Finally there is the upcoming surgery to worry about. I'm hoping this is what it is causing it to rocket up to 142/94 today. It went down a bit laSt week but i had a bit of an issue with my sibling and it went up to 153/98. I'm also having more headaches than usual. Do you think this could stop surgery? I'm not sure what my doctor will say but the nurse wants me to have another check up this week. Has anyone any suggestions how to bring MY BP down? X

After a phone call last week to finally offer me a date for surgery, the "official" letter comes through the post. And now my name is on the board. It's all becoming real....eek!

Adam can you tell me if anywhere in the USA ship these to the UK. I have found them online but no option to ship to UK. We don't get these over here and I would love to have one to take to hospital with me. They only give us a rolled up towel. ...not quite the same thing! Plus it would be lovely to be signed by my surgeon etc. Please help!

It seems that the last few days has put some bizarre ideas into my subconscious! Worrying about our heart sister Barbara must have been right there at the front. I dreamt I went for a quick check up and then I went off. A nurse found me on holiday and told me they were 99.9% operating on me today. I was in a panic as I hadn't packed my two bags and my husband wouldn't know whar to bring. Then they miraculously bought my friend to me as they couldn't get hold of my husband yet to let him know. I really wanted to go home first bur I didn't have enough time. I was then at work telling then I had to go to hospital so I couldn't stay all day. I was whisked off in a chair by a nurse so she could scrub me but it was done with tiny hand wipes 😅 I was still going on about my bags but I woke up not long after that. I think I need to stop eating cheese and chocolate at nightime 😅

Well its getting closer and just waiting for the surgeon to finalise details of surgery and then the date will finally come through. On one hand it's exciting and the thought of having some energy and being able to 'live' again will be great. On the other hand, nervous, scared of what might be and my mind is buzzing. Headaches seen to be the norm right now which isn't helpful whilst trying to get things together ready for the surgery. It's been a tearful day today with mixed emotions. I'm sad that I will not have any support from family except my husband (who will have a list of things to do....although I know they won't get done 😅 ). I'm open to adopt some sisters? Here's looking towards a better day tomorrow ☺

I had my angiogram yesterday (15th March) and so relieved that my arteries are all ok. That's one less thing I have to worry about ☺ I'm feeling the pain today and although I have rested my arm, it is aching, sore and very bruised! Hopefully it will feel better tomorrow. I chatted to my consultant who assured me that the OHS will be ok and that he will see me for an appointment 6 weeks after and when they are satisfied I'm all.good, I will go back to my normal check ups. I'm so glad that I have such a lovely consultant but sad that he won't be doing the surgery. I can't have everything I suppose and the surgeon who will be operating on me is one of the good ones. I feel like I am in very good hands all round ☺ xx

Today I had a meeting with another doctor who I found out when I arrived, was actually a Professor. He wanted to discuss my WPW and the EP study I had about 18 months ago. All I was told following the procedure, waa that they deemed the extra electrical pathway safe and didn't feel that any ablation was necessary at this stage. What they didn't tell me, and I was quite shocked to hear today, that there was another one. So I now have 3 instead of one! The Professor is going over my EP study again as he wants to determine if I should have the other one ablated or to leave until.a later date after surgery. The one I didn't know about is definitely being burnt away when I have my OHS. I have left these decisions in his capable hands. So its angiogram next week and hoping to get my date through for surgery so I can get myself organised and ready for the recovery period. Recliner being ordered next week, small wooden adjustable bed table purchased, new underwear bought and washed, button through night dresses bought and washed (not ironed yet ....I hate ironing!) Also bought a couple of zip up fleeces to wear during the day so no stretching through arms and head required! Getting organised is harder than packing for our holidays! X

I had my angiogram pre op today. Unfortunately i didn't get to see any of the doctors or my consultant. The good news is that my consultant for the last 12 years + will be doing the procedure I am so happy! He is such a lovely man and I feel so at ease with him. All I need to do now is to sweet talk him into helping Mr Austin with the OHS! It would be nice to know someone who has looked after me for many years will be there but I can't see it happening 😕 I will just have to put myself into Mr Austins' hands and pray ..hard! X Oh and my patients guide to heart valve surgery has arrived! One guess what I'm going to be reading this evening 😊 Thank you Adam Pick!! X

New symptoms have recently started and wanted to know if any members who have Ebsteins Anomaly, get burning sensation in their heart/chest? It is a really weird feeling. Seeing the doctor for my angiogram pre op tomorrow and will speak to them about it. Hope its nothing to worry about!

I have had a date for the angiogram for 15th March. This is to decide if they need to do a bypass whilst having the cone procedure. I also received a copy letter from my surgeon today to my Doctor explaining what he is doing. It is all becoming a bit real now! Feeling nervous but excited about it at the same time. I just want to feel more 'normal" and hopefully having these procedures done will help me!