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 ATRIAL SEPTAL DEFECT (HOLE IN THE HEART)
Thank you all for the emails. Every email I receive I never share them with anyone else and are treated with confidentiality. This means that it stays between your self and me and no one else.
I have now created a group forum on face book. Any one can join the forum. It is a place where any of us can go and talk to other people who are facing closure or have had closure. We all know how difficult it is during these times and how hard it can be to get information, or just to be able to talk to others who know what it is like........... please come and join us. As this is new there aren't many of us but hopefully in time there will be more. As far as I am aware there isn't anything out there just for Atrial Septal Defect people like us. I know when I was first told I had an ASD I spent hours on the Internet trying to find out as much as I could on ASD, but to have other people to talk to does make it easier.... any way I really hope that you will come onto the forum and just say Hi..... it is a start :-)) If you click on the link it should take you straight to the group, if not email me and I will try and sort it out. http://www.facebook.com/group.php?gid=163751212891 When you get in if you click wall at the top of the page you will then get into the forum ... see you there :-)
At the bottom of the page I have added updates since I had closure........ I need to add at this point that the complications that I have had since closure are NOT because of closure ( see 3rd September entry)........ I keep updating the entries as and when it (or something happens) needs updating
ASD HOLE IN THE HEART)
I have decided to put a page in for people who have a hole in the heart. The reason why I have is because, when I was diagnosed 18 months ago I went on the Internet to try and talk to other people who had the same problem. I didn't know any one who had this, and nor did any one I knew could think of anyone that had it either. I will start at the beginning of what it was like for me. I will be honest in what I am going to tell you. If it is you that is going through the same thing or someone you know, I hope this will help get rid of some of your fears. I have never been able to run.......... only if someone was chasing me, then I could but not for long. I was really bad at sports when I was at school. I couldn't run for toffee! The only sport I was good at school was netball, and then I think it was because I was in goal and didn't have to do much running. The teachers I am sure thought that I was able to do more than I was doing. I couldn't understand it even then because I had been horse riding since I was 5, had my own pony since I was 11 ( mum and dad went without a lot for me to have a pony) so I thought I was quite fit. I did all the horsey stuff, mucking out, grooming, riding, show jumping etc. I even went away to take my BHSHM and I was living in. ( This is where I went away to take a horse qualification and lived in a cottage with 4 other girls for 6 months) It was a lot different then when you lived in to what it is now. I had 4 beautiful horses in my charge and they were my responsibility. We used to start work at 6a.m and finish any time up to 9p.m. And it was hard work. But I could do that no problem, it was as soon as I went to run that I would become breathless. I was always getting tonsillitis and chest infections. At 18 I was told I had asthma after having pleurisy. At 34 years of age I had my tonsils taken out. I had a son when I was 26 and my blood pressure went very high when I was giving birth to the point that they were about to perform a cesarean, but it was too late because by then I delivered my son Drew. My blood pressure was high for a few days and my body was swollen. When I look at the picture of me after I had given birth my face is really puffy and swollen. I couldn't wear my necklace from being 6 months pregnant as it was tight around my neck. I have had 3 further operations since then. I was also taken into hospital 5 years ago with a suspected clot on my lungs, I had 2 scans the second one I had 3 days after being admitted on to the ward, the "clot" had disappeared. I wasn't kept on warfarin when I was discharged as they wasn't sure what it was that had shown up on the first scan. The reason I am telling you this is because the ASD wasn't picked up through all this......... why? I have no idea! Maybe because the hole was hidden away. I started with palpitations in the same year my elder sister Jackie died and I put it down to stress. I was also going to the gym a lot using the weight training machines, I went to the gym for quite a few years. But again I couldn't use the running machine, or any kind of step machine. About 5 years a go, one day when I was down the field with Caddy I was playing with him I used to do short jogs and Caddy would trot after me squealing and bucking! Any way this particular day my palpitations started and I had what I can only describe as a blood rush to my head..... I thought I was going to pass out. This began to happen a lot if I did anything that made my heart beat fast. I went to my g.p he said it was stress. I told him I wasn't stressed but he said I must be (my doctor at that time retired about a year ago). I was also feeling tired a lot and it took a lot of energy to get myself going. I had a lot of personal stuff going on, so I thought he was right. 4 years ago I met Andy (one of the best things that has ever happened to me) Life was good, but then 3 years ago, I began to feel not very well, the palpitations began to be regular. I went back to my g.p he said my heart beat was erratic but again he said stress. I told him I was tired and breathless, he told me I had yet another chest infection and it was my asthma. A few months later I couldn't take much more. My heart beat was all over the place, even if I was resting my heart felt like it was beating like mad then slow down miss a beat then suddenly beat again which would send blood rushing to my head and make me feel like I would pass out. I was breathless climbing stairs and struggled to walk up hills. This was getting stupid, I knew something was wrong. I went back to the doctors and asked to be referred to any one who could help me, I told him that even when I rode my horse I was getting scared as the palpitations was all the time, I was worried that I could faint while riding. He told me he would refer me to cardiology but he still thought it was stress and he said it would put my mind at rest when they found nothing. I didn't care I was happy to be referred. 2 Years ago this December I went to the hospital, I wore one of those monitors for 24hours. The consultant said he thought maybe it could be stress that caused the irregular heart beats. He then listened to my heart and then told me I had a heart murmur. He said that I needed to come back to have a scan (one that is done while they roll a hand held device over your heart while you lay down), he said that murmurs are usually nothing to worry about but they needed to know what was going on. I was relieved, because I knew it was nothing. At the end of the day I know my body better than anyone I have lived with it all my life ( haha) I went back for the scan and the doctor who did it told me and Andy that it is one of 2 things, I either had a small leak in a valve which he said if it is that and a small leak they would probably leave it, or it could be a hole in your heart. He explained that most holes are small and can be left and monitored. At this point he said the worse case scenario is that you have a large hole and it has to be closed. But he said don't worry no one in this area has had that done for years. I asked him if it was the worst case would I die, he said no as long as it was closed. When we left I said to Andy that I knew I had a hole in the heart and it would be the worst case scenario.. Andy told me to stop being silly, he was worried I could tell Andy knew how ill I had been feeling. I then had a scan where I was sedated and a camera was put down my throat to get a good look at the heart. (The nursing staff on the ward was excellent) By the way when I came round after the sedation I could not remember a thing as far as I was concerned I was asleep, but the nurse who was looking after me told me that I was constantly trying to talk then I went quiet and apparently my consultant said thank goodness she's gone to sleep, I then was supposed to have said "Oh no I haven't". To be honest that is me all over never shutting up! After the scan we was told that I had a hole about 3/4 of an inch, but I needed a anagram for a more in depth reading. Yes I was scared but at this time I thought I would be monitored I then not long after had the angiogram, I was terrified at the time I didn't know what I would feel. I was explained to what would happen but I was still scared ( by the way I will be honest I am a complete wuss that is a coward at things like this). I was given anaesthetic so I couldn't feel the cameras going into my leg. They put a tiny tube into your groin and a camera very tiny is attached to it. When the camera went into the hole my consultant said I would feel a flutter of my heart as it goes in to the hole. I did and it felt weird probably me but I thought I could feel the camera. After the angiogram I was back on the day ward with the wonderful staff, who not only looked after me but Andy too! They gave him tea and coffee. I then had to go for a MRI scan in Leeds. Now I am very claustrophobic so I was not looking forward to this one bit I can tell you! (MRI is like a large tube, imagine a very big toilet roll well it is a bit like that) To my shame there was a young boy of about 8 or 9 years old who went in before me and 1/2 hour later he came out all smiles............ oh no not me, I got on the bed that slides into the tube and as it went in I got off............. That's right I was a wreck. My heartbeat was every where. I asked the lady to let me try again, she said there was no point as my heart beat was in irregular rhythm so she couldn't do it any way. Not long after that I had another appointment for an MRI in Castle Hill. I phoned them up and explained I was claustrophobic, I was told that I would be using the new MRI that wasn't as big or noisy and Andy could come in with me. When we got to castle Hill the nurse explained that it was really important to have this done. Any way I went into the scanner and Andy held my hand. They had a technician from Phillips who make the scanner there to help with the scan When I was told that I realised that I was not so good. They gave me head phones and it was playing Motown, when the Four Tops started singing it made me laugh because when Andy has had a drink he likes to dance to this, but the thing is he can't dance........... bless him I won't tell him that though. The staff at Castle Hill was again very good they put me at ease and even though I don't like MRIs I certainly wouldn't be scared again. And that is the honest truth, if you have to have one done ask for music that you like it helps. I then had an appointment to see another consultant at Castle Hill, he told me and Andy that he recommends closure to the hole he explained what happens " I would be put to sleep and a camera would be inserted down my throat as this would give a clear picture of what was happening. Then into my groin a very small tube that contains a device similar to 2 umbrellas joined together would be placed inside the tube this would then go to my heart and one umbrella would be one side of the hole and the other one on the other side. Here is a link with a video answering questions and showing on models what happens. I found this site 2 weeks before I had my closure http://www.or-live.com/akronchildrens/1564/ When you get on this click on the view broadcast. This is very good it helped me as there is a woman on it who has had closure and she answers questions. For me this video made me feel calm and not a scared as I was before. I asked if I could be monitored, he looked at Andy and said if she was my wife I would be encouraging her to have it done. He explained that if I didn't have it done my heart could enlarge and my lungs deflate and if that happened it was irreversible. I knew I needed it done. I can't really explain how I felt, I know I was very scared. I didn't want to have it done, I couldn't get to grips what was happening. I knew I was ill and I knew I couldn't carry on living as I had. I was due in Castle Hill November 2007, but I developed yet another chest infection so I couldn't have it done. Castle Hill only do the procedure once or twice a year as there aren't that many of us. From last November until now I had become worse, I was so tired, I struggled at work especially in the afternoons the tiredness was unbelievable. My irregular heart beat was worse (I never thought it could get worse but it did). I also kept getting more chest infections. Looking back now I don't know how I managed to continue working full time I felt so ill. I never let any one at work know how bad I actually felt the only person that really knew was Andy. Sometimes when I felt really bad I used to take time owing, just so I could go home and go to bed. Did you notice I said until now? well that is because in the first week of September I received a letter with my appointment for closure of the hole. I went in to Castle Hill on the 16th and they did tests ready for the closure the next day. I was allowed to stay at my sister in laws house that night with Andy as they didn't live to far from Castle Hill. I am pleased I was allowed to because my 2 nieces Edan and Elkie, had Andy, Jo (my sister in law) and myself in stitches laughing! The two girls was reading my web site and both of them are not horsey and found it very funny especially the poo picking bit.............. The girls and Jo was crying with laughter, and Andy wasn't helping by pointing things out! ( not the response I thought the web would create but they enjoyed it!) Andy and I went for a walk under the Humber Bridge it was so peaceful, I knew then I was going to be okay.
I had to be at Castle Hill for 8a.m. When I got in my room ( I was lucky I had a room to myself with an en-suite!) The staff nurse came and put a cannula ( needle) into my hand for the anaesthetic etc to go into. The anesthetist came to see me she was lovely, she explained what she would be doing and what would happen. Then the surgeon came to see us, he explained again what would happen. I was the 3rd on the list for that morning. I went into theatre at 11.30a.m. The staff again in there was great, there was loads of people in there it made me realise I was certainly in good hands. The anesthetist lady was there and there was another anesthetist who was chatting to me telling me that it was his 40th birthday soon, we was busy chatting away when I felt something cold go up my arm I turned to the lady and said OOh you are sneaky you're putting me to sleep now aren't you? that was it I was gone! What a way to be put to sleep though, having a good old chin wag! When I woke up I was told the hole was a lot bigger that they thought it was 33mm. I had to lay still for 5 hours having my blood pressure and temperature taken every half an hour then every hour until the evening. I felt out of it to be honest as you do after being put to sleep. My surgeon came to see me and Andy and said that it had gone well and I would see him in his clinic in 3 months. I was discharged the next afternoon! How do I feel now after the closure on the 17th September 2008? Really well but not well. Sounds daft? Well I can climb stairs and I am not breathless, my irregular heart beat has almost gone I get the occasional arrhythmia of my heart beat but no where near like before. Andy has said my colour in my face has changed I don't look pale any more my voice has also changed slightly! It is still husky but not as deep. I am sleeping through the night now. I used to wake up through the night because of how my heart used to beat. I am tired and lethargic but that is to be expected and I get stabbing like pains in my chest but not for long. I think my body is recovering from what it has been through all these years and also adjusting to my heart working as it should. I am on a anti clotting drug for a month and aspirin. I think it has worked and I will know for definite when I go back to Castle Hill in 3 months. I am sooooooooo looking forward to riding again, getting my life back for me, Andy and our families. My life and Andys has been on hold for a long time. We hope to go abroad next year. I also want to do dressage with Caddy. Andy has been my rock through all this and I think all he wants now is an easy life ( with me nothing is easy haha) and lots of fishing! Funny enough 10 days before the procedure I went for an interview (with the same company I work for but for a different post) I didn't think I would interview well because of everything that was happening......... I got the job! So when I go back to work I start my new job. If it is you that is facing closure, all I can say is if your consultant says you need it doing and you know in your heart you do. Just think what would happen if you didn't have it done. I am not going to pretend it is easy, it isn't it is scary stuff............. But worth it, for me any way. If I didn't have it done and the size of the hole I had what would have happened to me? Everything I have been through would not have been as scary if I had someone that I could have talked to who had been through it. It is no where near as bad or scary as I thought or imagined it would be. I hope that what I have wrote has helped just one person, because I wish some one had wrote this for me. If you have any questions I will answer as honest as I can. Just email me and I will email you back. The email link is at the top left hand side of this page I would like to take this opportunity to say a big thank you to my surgeon at Castle Hill thank you, thank you thank you! Also thank you to all the nursing staff at Castle Hill and also the coronary nursing staff at Diana Princess of Wales Hospital Grimsby. Again another big thank you to my consultant and the other coronary doctors at Grimsby that have been involved in my care, and of course my own G.P practice Take care Tonette x |
 It is now 19th October 2008, just over a month since I had closure. I feel really good, just tired and now and again chest pain. I still get palpitations, but not like before. I haven't rode my horse yet, but I hope to before long.
10th March 2009 I thought I would give an update........ as I said at the beginning of the page I am being honest and because of me telling you all that I would be as honest as I could I thought I should update you. My arrhythmia has not gone away. I have been having headaches and also lost my balance, my blood pressure also has been high. Last week I had a CAT scan and I am now waiting MRI. It is possible that I may have had a TIA ( a small clot in my head ) I get very tired and find it hard some days to do the house work or anything else and on those days Andy looks after the horses. ........ BUT I can still climb stairs with out getting breathless and walk distances (when I am not tired) In that way I do feel a lot better. Closure was still the best options for me despite these set backs. Even if I was told this may happen I would still have had to have closure.... after all if I have (or am having) TIAs something can be done, they can medicate me. For 2 years I had my life on hold, I missed riding so much, well it wasn't really the riding as such but the closeness that you feel with your horse ( I adore Caddy and Dimby ) I missed the freedom to bimble along ( that is walking while riding without a care in the world! ) To look at the country side and the wildlife..... to feel your horse breathing underneath you and the movement of his body.... I missed that so much. I have been riding since I was 5 years old, Yes I was lucky to be able to do that . My point is, it is something I love doing.... riding.... but not any horse ..... Caddy!!! I just feel that if something is so important to you then if you are well enough on that day and you minimize the risk ( like I don't ride out on my own, I am not that silly) you should be able to carry on doing what you love. This time what ever is happening is not going to stop me doing what I want. 22nd April 2209 I had a device on that monitors my heart, I was supposed to have it on for 3 weeks. When I had it fitted the technician told me that they were looking for fibrillation and that is where the top part of my heart isn't pumping as it should...... good news after a week the cardiology department phoned me and said that they have enough recordings that I can stop using it! She told me that my readings have told them that I haven't fibrillation..... I am sooooo pleased! still waiting MRI as the department have only just found out that the device in my heart is MRI safe and I am waiting to have a TOE that is where I am sedated while they look at my heart with a camera down my throat. My headaches are not as often now, and I have had no more loss of balance. I have now spent a lot of time on my pc researching ASD closures, and from the information I have gathered if you have closure after your 40th birthday and have arrhythmia (palpitations) then you have a higher chance of having arrhythmia after closure, they also say that the earlier the closure is done it is better for the patient. Also the research that I have read is stating what I have already been told that closure of a large hole is definitely needed. Not for one minute do I regret having closure, the outlook would be pretty grim if I didn't. 6th June 2009 I had a TOE this is where I am sedated and they put a camera down my throat and look at my heart. I didn't feel anything and I had this done 2 years ago so I knew what to expect. When I came round we was told that I had a large blood clot in my heart chamber. I had blood thinning injections every morning at the hospital and warfarin tablets at night until my blood levels went to 2 yesterday now today I am just on Warfarin tablets. I have to have blood tests regularly to make sure that my blood levels do not go below 2. I am now on warfarin for the rest of my life. The specialist thinks that I had a TIA in March ( mini stroke ). There is not a lot more i can tell you as I do not know any more my self but I will keep you updated. I still stand by what I have always said I do not regret closure even after having a TIA and a large blood clot these can be managed but if my hole had not been closed then the damage would have been irreversible 19th August 2009 I spent last night in hospital! yesterday I was at the field and just walking through to the horses and I had another episode.. my balance went again, I went dizzy and had a funny taste in my mouth. Anyway to the point I had a night in hospital and I was lucky that the doctor on ward round this morning was my heart consultant ( once again a big thank you to him !!!! he let me come home lol ). He is not sure if it is a TIA although it sounds like another one . So I am going to have to wear the heart monitor again for a few weeks. That should be in the next couple of weeks. Apart from that I feel okay just tired today. Andy asked me last night if I would have known that all this would have happened would I still have had the hole closed....... I thought about it and told him yes. I still firmly believe from what I have been told and what I have read that if I had not had the hole closed the outcome could have been a lot worse than it is now. Once all this is sorted out I can get my life back on track. I know I will always be on blood thinners but hey, that is a small price really..... 3rd September 2009..... I went to Castle Hill today and it seems that there is some communication breakdown, any way the clot is in my right heart chamber. He told me that because I have arrhythmia this causes clots to form and is more than likely the cause of my TIAs. I asked him how long he thinks I will have to be on warfarin, and he told me the same as my cardio consultant at home that it will be long term. I asked about riding my horse and he said that you have to weigh the risks ie: if I stop the warafin I am high risk of a major clot, if I carry on with the warfarin and fall off while riding I can suffer internal bleeding which could be fatal, either way I am in a no win situation! So it is warfarin for me and riding ...... well I am going to ride soon!!!!!!! I keep saying this but I am!!! I just need to make sure that Caddy is as safe as a horse can be for me to ride. Even while taking warfarin there is no guarantees that the TIAs will stop or that I won't have a big stroke. But the warafin should prevent this........ fingers crossed! It is so important to have closure done on a hole in the heart as soon as it is detected ( that is if your consultant advises closure depending on the size of the hole etc) as the older you are you could end up like me........ IT IS NOT the closure that has caused the clot it is the arrhythmia I had before closure and that I still have. This is not like the odd palpitation that most people get. My arrhythmia can last anything from a a few mins to a couple of days. I am wearing the heart monitor on the 15th for 3 weeks to see if my arrhythmia has changed, I will keep you all updated The good news is ........ the procedure worked and the device is in place as it should be and there is no leaks! so I am really pleased about that. 4th November 2009 I have been discharged from the stroke clinic!!!!!! I am so pleased, but I have now been referred to the memory clinic....... now I have an excuse for forgetting things lol :-) seriously we were told today that I will always be at risk of a stroke but because I am on warfarin this should be a low risk but I may still get TIAs. I have an appointment at the end of the month to see the cardiologist so might get a few more answers then...... like can I ride Caddy now please????
24th November 2009.......... I have seen my cardiologist today. I have decided he is my very own Father Christmas, well he has given me the best Christmas present I could have ever hoped for! I have had my results today I do NOT have Atrial fibrillation ( thank god or who ever is listening to me!). My left side of my heart is slightly enlarged but this is due to it being enlarged before closure and the left side is also damaged. I will become breathless during exercise due to this, however it won't get better. The arrhythmia's are palpitations and that I am in tune with my heart and can feel them. I think that is because I have had them for so long. I have been told now to lose weight and begin exercising ( now that is scary because I do get out of breath walking, but I think any one would if they have nearly stopped doing exercise!) I have put on a lot of weight since I began feeling ill. I think in 5 years I put on 5 stone of weight, but in the last few months I have lost nearly 2 stone..... so 3 more to go :-))). I will be on warfarin for life...... but hey I don't mind I have a good part of my life back it is a very small price to pay . I will always be open to Cardiology but that doesn't bother me at least I can now try and get on with my life :-) The best bit!!!!! I can now start riding Caddy!!!!!!!! YEAHHHHHHH okay the deal is when I am riding out we only walk, I am going to do dressage with him and this is in a controlled environment and also it is an indoor school which is sand so if I should fall it would cushion me. Oh and I will have to get some one in to bring him back into work for me as he can be quite excitable when I start riding him...... I am soooo happy!!!!.............
11th April 2010...... Thought I would give you all an update as I have updated the web site :-). I still have not rode my horse :-( BUT I am having his shoes put back on and I have someone to ride him for me, I will be adding a page on this as he progresses! I still get very tired some days and have headaches and vision impairment which are because of the TIAs that I had. To be honest I have found that as long as I take things easy and don't overdo it the tiredness is not so bad. Please join us on face book there are lots of members and you will see that what happened to me is very rare as all the other peoples accounts are very positive :-) I think that the research is right in my case that closure needs to be done as soon as possible, of course that is if the hole is large and it is what your heart specialist recommends
Once again..... Do I regret closure? No it needed to be done, even if I knew all this would have happened the clot and TIAs I would still have had it done. I am going to be around for a long time. So every one I think this will be my last update, oh unless I put things on the horse bit of the web on how we do you might follow us there. Or I really hope you join us on the face book group Adults Atrial Septal Defect the link is at the top of this page....... We are very friendly on there and support each other, please join us. Once again, Thank you so much to my Cardiologist at Diana Princess of Wales Hospital and all of his team, I couldn't have wished for a better team.... Thank you. Also thank you to both of my doctors at my g.p surgery they are both amazing doctors! I am so lucky to have them both. Thank you to the nurses ( for taking my blood every month.... it is such a pleasure lol ) and the reception staff at the doctors surgery who I think have got that used to seeing me by now I am part of the furniture! ....... And not forgetting thank you so much to my family for being so supportive....... I love you all xxxx
Thank you for all the emails regarding this topic, It is so good to talk to others, share our experiences and to know that we are not alone......... I have received many, many emails................ Thank you all so much, after having contact with a lot of people through this page I thought that some links may help some of you. Please contact me if you need some one to talk to..... we are not alone
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 Agostino very kindly has let me use his music...... this is copyrighted to Agostino so please have a look at his web and you will see more of this talented young mans music |
