Diagnosed with 5cm Aneurysm near heart
Posted , 21 users are following.
Hello everyone, I'm new here and just want some advice.
Two day before Christmas, I was diagnosed with a 5cm aneursym near my heart and told, "If it's not repaired, it will burst and you will die". The NHS cardiologist had only just seen my file and met me, 5 minute before that. He also stated that if my valve is bicuspid, they need to replace it and repair the aneursysm now. So I've been waiting for either a tube down my throat, or an MRI to get a clearer picture. So far, I've only received a phone call, from that Cardilogist, on New Years eve, saying the Tube test should be end of Jan, beginng of March, but the MRI will be sceduled in the interum.
I'm originally from America, where my possible bicuspid valve was monitored yearly with echos. I've been here in the UK just over 4 years and only ONCE did a Dr. so much as listen to my heart, until they thought I had a TIA.
Is this typical of the NHS? Give you bad news, then make you wait?? Some say I need to go to my GP and see if they can refer me to another place to get the tests done...others say, play up your symptoms. I am somewhat symptomatc, but so far, I still walk a mile to the bus every morning, and work a 40 hour work week.
Any advise, words of wisdom, words of caution...any thing...I just don't want to feel alone in this anymore.
1 like, 105 replies
marlborough kristi18883
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kristi18883
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Then, a week later, I got a letter in the post for a follow up appointment with that same surgeon at the OUTPATIENT department (have seen him in Cardiology) on 6th July???? WHAT IS GOING ON? Since this letter came on the Saturday before Easter Holidays, I won't be able to call until Tueday.
I am getting so frustrated...I feel like I am falling though the cracks.
Why would I be seen at the outpatient department, when I haven't even had my surgery, nor any other proceedures scheduled????
Grimspite kristi18883
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kristi18883 Grimspite
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kristi18883
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kristi18883
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sarahb1995 kristi18883
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derek76 sarahb1995
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kristi18883
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In the end,half an hour later, my lungs are completly clear and functioning normaly, it's just they are not holding as much Oxygen as they should, which is most likely due to the leaking heart valve. Good to know my years of smoking tobacco and canibus (shh...lol) haven't ruined my lungs. I'm off the bacci by the way. Been on the e-cig only and my cardioligist are OK with that.
Now, I'm just waiting for my surgery date. I'm feeling pretty good about it, as all the tests are saying that I am healthy, appart from the mild to moderatly leaking aortic valve, and the 5.1cn aortic anuerysm. lol I think I'd even bet on those odds.lol
I will let you all know, when I know.....hope you are all doing well. And thanks for your encouragment and support. If any of you are at Castle Hill the same time I will be, we'll have to meet up for a coffe in the hospital cafe. lol
casey78892 kristi18883
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Went to see the cardiothoracic surgeon last week who thinks that I have a bicuspid valve my last ct scan did not confirm this so have to wait until my repeat scan in July for this to be confirmed. He said if I have bicuspid then they get very worried when it reaches 4.5 and would do surgery then so I'm not too far from it. In a way im kind of hoping that it is bicuspid so that something can be done - at least I think I am then I could move on with my life. He told me no competitive sports and pretty much no running the cardiologist and doc told me to continue to run makes you wonder! Hope everyone is keeping well :-)
marlborough kristi18883
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ali91149 kristi18883
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Sorry to hear about that. Have you considered getting treatment from a cardiac specialist abroad? I had a similar issue in my family regarding various disagreements in treatment among 3 doctors in Russia. Luckily we were directed to a german doctor in a private clinic who seemlessly treated my aunts condition. I still have contact with them if you would like.
ali91149
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h_g kristi18883
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Desperately looking for post operative issues with Aortic Abdominal anneurysm (AAA). Hubby 56 still in hospital from 24th of April 2015, operation was done he had a thrombus in it too, open surgery had to clamp kidney, four days after oepration temps, 37-38.6, CRP 270, now 77 (6?5/15),temps now in 37 range, high cretanine so got a specialist to look at kidneys now alrigh, he was given oral contrast in afternoon he drank one sachet and vomited, could not drink the other two oral ontrast sachets,in the morning he vomited bile same day, so they gave him another oral contrast to drink prior to ct, and he managed to keep it down, they aso gave IV contrast. they did a ct on chest and abdomen to find out why the temps CRP and nausea symptoms ,thats when they noticed the slight damage on the kidney detected. Vein specialist said if there is an issue later will do laproscopy and fix it as kidney was slightly dmaged during the procedure but said nothing to worry also noted gas near chest area and said that it is normal during operation and nothing to worry as the body will absorb it. Lukolytes was normal, Gct (not sure but it is a liver funtion test ) was a little bit high, but now said it is alright, it looked ok, Nausea since last friday, but he was on saline and ice till last friday, They started him on antibiotics for the skin as they waited for blood test and cultures to come when that came said that it is nothing to do with that so then they gave a general antibiotic all through IV. then,started introducting broth as he started having slight stomach rumbles on 1st May 15, Friday night,, and gradually has got to a normal diet first few days were able to tolerate diet cheese sandwich, soups, ice cream fruit salad,(even though had the nauseated feeling they were giving him tablets to stop nausea but it did not seem to do much). this was similar lunch and dinner even though some nausea, and churning in stomach,Temps are in the mid to low 37 range today 6/5/19 temps Started using bowels only on SAturday, 2/5/15 since oeprtion on 24th March 15, as he did not eat much, Nausea and stomach cchurning are getting worse, last 2 days havent been able to eat much at all, he is fussy but he could not even eat 2 slices of cheese sandwich, he had started havig diarrohea motion since 2/5/15, then it started to get slightly solid until, monday 4th may 15, he had not opened his bowels at all. They did an X ray due to the nausea and sick feelig in stomach on tuesday,5.5.15, found a lot of feaceal matter, as the nausea feeling is getting worse they dd another ct scan abdo today, again vomited the first satcht of oral contrast so they had to give contrast through IV and they had to wait a while before doing the test, tey also did an echo, the Gastrointrologist who has been involved with the previous ct too, said he cant see anything to do with the bowels they look fine from ct, but today he noticed a clot where the operation was done not sure if it s near the stent, or where they said the damage was near the kidneys, he said that he is happy with the bowels but I cannot understand then why is he feeling nauseated and churning, Hubby says he feels worse that what he was after the AAA 1st week,, I asked if they will have to do another procedure for te clot He said the vein specialist and the kidney specialist might have to put him on a high does of atibiotics for the clot, has anyone ever o or had come accross this issue, after the contrast my hubby is going to the toilet he said that it felt like he unloaded 6 trucks, for the first lot it was diarrohea,but after that it was just dribs and drabs with mainly liqid feaces. He hardly had any lunch just one slice of cheese sandwhich there was no breakfast as he had to do the contrast for the ct, he is hardly having any drinks, he did not even sit on the chair, yesterday he went for a bit of a walk not much later in the afternoon as he was feeling too sick due to the nausea, churning in stomach feeling but even though the nurse listened to the stomach said there was hardly any sound, so not sure what he ment when he says it was churning maybe a sickly feelig in stomach. Today he did not even sit on the chair at all, hardly drank any water, did not go for a walk as he was going to the toilet for no 2s and laid in bed sleeping hardly spoke to me saying this is worst than immediatedly after the 1st week of operation. His wound is healing very well, thank you God, Just need to know if any of you are able to shed any light the drs said they have not had an issue like this before and are not sure, could it be the clots in the area causing this, please anyone out there if you have any idea please let me know or could he have caught the h pylori bug during the oepration Looking for answers , they also did a stool test and negative for what ever they were lookig for
Please any ansers are appreciated. God Bless you all
PSs his uncle 78 yrs old underwent the same operation and was out in 14 days, ( about 2 months ago) and back to normal. Never thought hubby would have to undergo all this, he smoked until one month prior to operation and consumed some alcohol about 3 weeks prior to surgery he was at a funtion. Has anyone had this stomach churning nausea, and a clot near the site after the operation and stayed so long in hospital.
Kristi18883 I hope you have got ome answers if not go for a second opinion please, and My hubby waited 2 years,it ws an incidental finding too, when he did his oepration it was 5.2, but the dr said that the area there was quite weak after the operation so t was good that he had it done. Just need him to recover and come home quickly, an annurysm can go upto 5.5, they might scan you every 3 months to monitor you, because I went private it was quick, his uncle had to wait for quite a while his was almost 6 but he had it for more that 7 years, my hubbys mum had one too so it is more heriditary, she died before she went for the operation but I think it was due to her pressure, as her presurre ws quite haigh and they could not try and get it under control. They said that if you have more than one person within the family with this you need to get all your sibling and children checked once they hit 40 Everything will be fine, but should you have any sudden pains go and get your sef checked my hubby had no pulsating feelings either, and did not even know until he went to get a kidney san done as his albumine was so high due to not drinking enough water it is still high but the kidney specialist he was seeing was not too concerned as the scans have been good.
Grimspite h_g
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h_g Grimspite
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said will wait for stool test and then put him on some other medication antibiotics, after dinner a bit of churning in stomach. I just dont know what is going on the nurse came in wearing aprons ad gloves so I dot know what sot of bug in tummy they are talking about without any test. I am wrting this hoping that there migt be someone out there who migh have undergone a simlar issue, There was no obstruction in the bowel from ct, I think if here was a twisted bowel they might have seen it on ct, how was your friends dicovered. How is your faher and friend going. It is good to be able to talk to someone who has had some experience with it and thank you. I will be keeping you updated Thank you and Kristi for your replies. God Bless you all.
Grimspite h_g
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