Hi all am still battling on.....still getting weird heart beats feeling lethargic and anxiety is playing havoc too....... I am near 8 weeks Post Ablation and am now confused and worried....
Had echo and holtor monitor done in last couple of weeks and spent day in ED with the abdo problem last week ....thought it was just a coincidence thing because no one else Doctor wise has said they are linked...Also found out my pancreas is enlarged so more tests for that too....
Still have nausea and pain in abdo....having a scope done next Friday 14 nov.... then colonoscopy on 8 Dec.....
Cardiologist now says he wants me off blood thinners at end of this week for scope and I should be ok yet holtor monitor result clearly showed up small AF episodes still.... Asked about stoke risk I have a CHAD score of 2 he said danger period is over and I should be ok.....
Then instead of reducing the verapamil weaning as he started he now says I better stay on it because I am having too many AEs and VEs and that's why I am getting shortness of breath and chest pain as well....
He then confused me some what by also saying there is a rare connection between having the ablation done and making stomach and abdominal pain and reflux worse and this may be a problem with the palpitations as well...... he is going to talk with the gastroenterologist at least and they will work it out....but still have no answers and as I said am scared of the risk of clots with the occasional AF ........any advice would be greatly appreciated....
regards Jo
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If you need any kind of invasive procedure such as endoscopy it is wise to not be on anti-coagulation just in case of a small nick. Yes stomach problems and AF are linked since the vagus nerve feeds both organs.
Ther is nothing rare about about stomach irritation and acid reflux after ablation! Mine was caused by the TOE, I was told afterwards that my esophagus spasomed and got stuck, few sticky moments for the anaesthetist! LOL.
I agree with Bob, there is a connection between gastro problems and AF, I believ that it is not coincidence that so many people on this site suffer from IBS, gas, food intolerances etc. The vagus nerve is also part of the sympathetic/parasympathetic nervous system so will react to internal and external stimulus, including anxiety and stress,
Hope the endoscopy goes well, if you can deal with your worry thoughts, CBT can help, you will find that helps your physical wellbeing improves as well. It is good that they are investigating and I think wise to stop the Anticoagulation until after the procedure.
thankyou for your care.....I'm having a bad few days, I just want answers and they have not been forthcoming....I'm very depressed at the moment and the strain of waiting is just beyond my ability to stay sane....I am in constant pain at the moment as well which over the last couple of weeks has got steadily worse....I have an infection and think that may have something to do with the pain....Have a GP appointment tomorrow and hope Monash may ring tomorrow as well....otherwise I am going to ring them....I spoke with the Cancer Nurse the other day about my problems and she advised me to bother them to get things happening .....slipping through the cracks is an experience I would rather have avoided but that seems to be my life.
You take care too...I will stay in touch....its been a wonderful site to get support here and its kept me in a better place and at least I can say it how it is on here too....
Tell the Dr's or who ever you see what's on your mind tell them all you have put in your posting,you have to be strong and fight with all you have the strength to fight with, I saved my husbands life a few years ago he lost all feeing from his neck down,theses so called speclists finely understood what I had been saying for months,they did in the end have an apology,that came for me came to late, it too nearly two years for my husband to learn to walk again.
So do all you can, keep posting here we will give you the strength to carry on......we are here.
I found out today that Monash don't come back from Xmas break until next week....So I hunted around on the internet and found a specialist centre out of Epworth Hospital in the city...rang them and got an appt. for next Tuesday but its 1 1/2 hours away from where we live so 3 hour trip...but I can't wait any longer as I am in pain everyday.... today was difficult....Yes I will tell him all I can and I am hoping he will repeat the CT as my GP told me today the radiologist said there is no mistake in the reporting and the mass is very large according to them...very confused now as the MRI result does not match its measurements....I'm scarred and feel alone....hubby has just told me he has to go back to work....I don't think he's coping...so I am going to spend may hours of an evening on my own after this week....Am feeling miserable and my strength is leaving me at a great rate of knots'.... I am grateful for your support....family does not understand and staying away my daughter can't respond to me at the moment she is very upset....I've tried talking with her but I think its a case of if I don't think about it won't happen....sons are all not saying much I expect they all feel very vulnerable .... So I wait another week and am taking more valium to get through the day now and a sleeper at night or I just can't sleep ....will keep trying though....
You will get through this week some how it seems your family are finding it hard to cope at the moment, you need support best place is to see your GP or ring him get him to arrange support for you as you clearly need it along with your family, once you get that support things will be a little better you will not feel so alone.
Use this week to achieve getting the help and support you need, post here keep in touch their is always someone who will try to help.
Another day...have started to put things in order...My GP says I just have to wait.....there is no help other than my psychologist....I saw her briefly and she said to rest and to sleep when I need to compensate for not sleeping well at night....I am even..... though this may seem putting the cart before the horse organising things in case this goes completely pear shaped....I have tried to be calm but my heart is aching from the hurt and uncertainty this is now just too much....I just want this week to be over and get on with what ever the specialist decides....the thing is the mass is encapsulated and according to the research I have read operable but if its left too much longer because the boarders are close to major arteries it might change and I will be so devastated....I am grateful for chats on here thankyou Christo4 for you constant support ....check in tomorrow again....anything to pass the time is helping.....
You are typing saying how you feel and how you are,talking things over helps,try and rest as much as you can, best to try and keep awake in the day, if you end up sleeping in the day you will find evenings your going to be wide awake.
What about your family have they been in touch ? have a coffee morning a time for you all to talk.
Hi Christo...I rang the specialist rooms today and I have someone's cancelled appointment tomorrow in Fitzroy so much closer and its tomorrow....I got all my CT scans and MRI today hubby drove me around to get them...he is being good but is numb with exhaustion and angst. I am in pain constantly today....I'm scarred the mass is expanding more...its huge and its got to be causing the pain...I just hope it stays encapsulated ....I am going to ask if the DR can do something quickly and I hope I am not just a number......I have spoken to the kids all accept 1 who I have told I will ring him tomorrow after I see the specialist... they don't contact me to ask how I am ....the youngest boy is home here with us at the moment when he's not driving trucks....he is strong willed and not listening but also trying to avoid any chat at the moment. So I guess your suggestion of getting them all together may be a good idea after tomorrow.... He says as long as I am alive I should be happy with that and the others are avoiding because they don't want to see me upset....mind you after the ablation and gastroparesis set in ( now I thing the pancreas has a lot to do with how sick I was) I don't think they want to see me unwell so soon again.... not that I saw them then either....Scratch.... my kids.....my daughter has just rung and will meet us in city tomorrow to see the specialist ., she at last is talking ....there is hope....for support please god.....I love my kids so much....
I stayed up for most of today Christo.... just had a power nap...see if I sleep better tonight....and an old work friend from my old work 2010 has contacted me she is coming to see me on Monday and have a cuppa with me so I have something to look forward too if I am home it will break the monotony ...She too has had cancer so understands my grief....
.....ok I am going to say goodnight and thank you again.....anyway will chat again tomorrow night and tell you what's happening....if by chance he admits me I won't be able to write so will do as soon as I can...just want answers and to get things moving before I miss the boat....
Things are looking better maybe not as you would wish for, if you re read your posting you are doing very well making little changes...well done you,your family are slowly coming round they are hurting as well not sure what to do or say tell them they can laugh if they wish,they will take a lead from you. if you have this coffee meeting make sure you put your make up on, dress the best you can treat your self a nice cake with your coffee.
Read your posting again.....your doing well you can do it enjoy your coffee smile a little, have strength to make your family strong again.
yep things have moved forward....the specialist has organised a biopsy for Monday and back to see him Thursday.....more blood tests tomorrow....I have stopped crying and the numbness is slowly resolving....I have some idea what we are facing....he outlined my options....if no cancer op to remove, if cancer maybe chemo first to shrink it a bit then op or op then chemo....worse case scenario only chemo to give me some time.....at least I feel like its being taken notice of.....our daughter was very supportive and I was grateful for her presence today....I have told all the boys, one by text because he won't answer his phone....I asked him if I could talk to him as well.....I will have the coffee with them but it will be on hold till we get answers next week....then it can be discussed by us all what we will do and how to cope....
Hubby is tired so am trying to be positive with him too....he has told me he knows its going to be tough but he wants to remain positive and look to the future....I need to respect his thoughts for him as well..... which will make me try to stay strong.....I think.....bit scared though.....
Christo thanks so much your such a wonderful help at the moment and at least I can say things on here that you can bounce back suggestions its been a good for me.....
Every thing seems better help is round the corner your now able to talk with your family, keep that up its good for them as well as you.
You seem to be coping so much better well done you, your specialist is now moving on with your case, your having some tests soon, keep being strong that way your family will gain strength from that.So pleased your daughter is now with you.
Your hubby will be tired this worry does take it out of you, his way of coping is looking forward to the future you could do that as well.
Fear not Jo you will cope, some times you will be thinking is this really happening to me, we all think that when we feel we are not in control so many feelings you and your family will have.
Your journey is still on going, it could be longer then what you want it to be, the good thing is your so much stronger to cope now,your not alone on your journey your family and friends are with you.
Today has been a huge bugger for me...Monash promised me a call this morning to confirm biopsy...I have had to ring them 4 times and chase conformation....and even then at 4 pm nock of time....the secretary of the dr says to me you have had the run around today....and if I didn't call I would not know as the person who was supposed to ring still hasn't done so...its Friday night 8 pm....so I would be out in the cold....in saying that when I spoke with the secretary who spoke with the dr...if I get into any further pain she got him to agree to me going to their ED anytime over the weekend and ask for him to be paged....so even though it got botched its sorted now..... I got upset but am ok now so that's main thing....
Hubby had a reasonable day we did blood test this morning him too as GP is worried about him as he has lost a wack of weight ...he has been trying though....I think because of my unfortunate circumstance she isn't taking any chances with him. He managed to cut his last paddock of hay today we live on a small farm its near rural but not remote....I have tried to remain happy...its his birthday tomorrow..... so I will be trying hard to have a good day for him to remember....a happy day for him.....
.....reading your lovely reply and writing every night here gives my mind a break from me and makes me think of how things should be....rather than dwelling on what's happened. thank you Christo....but please tell me if its too much as I don't want to cause any problem either for you.....I am grateful though.....I don't want to seem like I'm leaning too hard either....
Such a difficult time for you, but you are sounding stronger. All the stress is hard to cope with and if you get a little bit of good news, it will do a huge amount of good. Do hope that between them your doctors can help you to turn the corner and sort out all the problems. All the best!
How well your doing, pushing to get things done is a good sign, you have to push and push again that's how it seems to work it's keeping you busy you will be pleased with yourself when you start to get some where, it not easy but can be done, I have in the past had to fight to get help that was needed for my husband, I saved his life he had no feelings from his neck down he was a very sick man, he has cancer now after all what we've been through, no giving up keep fighting,, it was difficult at the time it's a bit like your going through, you will be so much stronger not afraid to say what you think you will have learned so much... believe me !
As for your hubby he needs help as well by the sounds of it, I'm sure he will have a lovely birthday for you BOTH to remember !
No problem keeping in touch just felt that was needed, it good to hear how your coping now....that's worth keeping in touch for.
Thankyou Christo.....we had a nice day ....quiet....we went to see our daughter for an hour and said hello....and we did a bit of shopping....I had a rest this afternoon and tonight a neighbour has told a neighbour and they rang to give us well wishes it turns out her dad had pancreatic CA he was very ill but managed 12 months so she understands what we are currently going through and the uncertainty....I so want a good outcome and am trying to maintain positive thoughts ....I haven't cried again today so strength is happening slowly....my worst time is in the morning and I need to push myself for a while.....anyway Christo as you say I need to keep fighting this no matter what to keep hubby and I together and stay happy with each others company and love.....
Strange mornings always seems to be the worse times, at least we have the whole day to wake up to the real world, there's always othes who have problems we don't have to look far ! how nice your neighbours have been in touch yes they will be understanding as most friends are, you will notice some find it diffiicult don't know what to say.
How is your husband maybe he is resting when he can, a good time to talk about the good things, we do that often we go back years ! then arrive back to where we are now, we remind our selves we must keep going look after each other stick to the rules with each illness we have, eat healthy keep warm keep pushing the Dr's to give you the best care possible.
Hi Christo ......well today has been a complete train wreck...I am tired out have slept nearly all day and very weepy...maybe going out yesterday caught up with me as I didn't sleep real well and I expect the emotion of tomorrow is playing part of the way I feel...cant' keep my eyes open when I lay down at all....I am so hoping this is going to turn out to be benign...
feeling happier tonight maybe just reading your message has lifted my spirits thank you... typing makes me concentrate which helps a lot I think ...so my mind has a lot to do with how I am feeling......yes, I'm eating healthy what I can manage........hubby is cooking meals for us....and does all the cleaning at the moment except the toilets and bathroom.... I make myself do this as I need to set a rule for myself that I must do stuff still and cope.......
I sat outside this afternoon then ended up lying down on the rocker bench and my puppy Mia came gave me a cuddle for a while....
....hubby finished his hay today so now he won't be stressed with that.....and he can take his time bringing this lot in because the shed is full, so its stacked outside doesn't matter if it gets wet either....
well Christo I will sign off and pray that tomorrow brings us good results.....and by Thursday we should be able to know the future....we are talking ok.... Hubby is tired he is having a break when he can..... he will stay with me tomorrow up at the hospital...we should be home around 6 pm if I feel ok to go home.....
Big day tomorrow you will have mixed feelings, try and think of the best outcome, have peace with yourself it can be done,when I were waiting for big important results I said to myself 'so be it whatever it's going to be' then I started to have peace with myself.
You talk of sitting out side where are you in the UK ? or maybe you live in a warmer place then here !
Your husband has managed to get all the hay in, he will be pleased about that,must be hard work no wonder he's tired !
Your puppy Mai sounds lovely we used to have a dog we have thought of having another many times !
Hi Christo well its now Tuesday here....I live in Australia by the way sorry about that....
yesterday was a mixed bag good and then still a question of what's going on....the consultant I saw yesterday was very nice he did the scope thing to do the biopsy and looked at the pancreas from head to tail...and couldn't find the mass that's on the CT and now thinks its a fatty substrate....but also went on to say he is almost certain but that's as far as he would go...so I am happy he says that he couldn't find the mass...but then he left with we will need to do another CT in 3 months to check and also need to follow up with the lung issue as well...so I will have the same CT chest and abdomen again to watch for any changes....he also said it should be done by someone with the skills to read the CT and not make any mistakes....
I see the pancreatic guy on Thursday and get his opinion and need to see what he thinks but its a relief and good news yet not ' black or white'......if you get my meaning....I am aching today and very tired to be expected....I've put myself through a pretty exhausting time....my brain feels like in a fog still expect that will wear off tomorrow....
Hubby says he still feels numb...but had slept better he went to work last night so I think that helped him... too. he bought the hay up today they are big bales so it takes a while he can only carry 2 at a time with tractor so makes 15 trips....he's just finished so its cuppa time for him....and he just said we will go get some veggies from the shops...
thanks Christo I was in a mess yesterday but the nurses were very good and helped me through I am grateful it all looks ok at the moment at least and will chat with you again....tomorrow xx well wishes your way...
I have been a lot more relaxed thank you.....today has been the first day I have managed to feel a little more rested....its come after having a reasonable nights sleep once I got the pain under control and not taking 1 of my stomach meds this morning ....one of the side effects is lethargy and tiredness I have only been on it not quite a month and looking back I have realised I have been a lot more lethargic during the day which probably hasn't helped me at all.... I took the old one Nexium and have felt so much better today so may be that and less anxiety too....
Hubby has been smiling a bit today we had happy cuddles and he had a snooze this afternoon ......oh bliss......
I had phone calls from 2 specialists today out of the blue .....trying to do catch up from falling through the cracks...both were apologetic and I explained I have already had the test and on my way to see specialist tomorrow in Melbourne for final say on result...and plan for future...they both said "oh" and one the local GI guy has told me his door is open anytime....I'm not sure how to respond but am wondering all of a sudden who has spoken to whom and alarm bells must have been ringing.....anyway that's beside the point now....and the local GI one said his going to have another look himself at my results just because he needs too.....even after me telling him about results which he got me to read over the phone what was found....
I'm crossing my fingers and sure hope this is all good tomorrow and I am so happy yet still a little unsure after the muck about I have been given...I know no matter what I must move forward slowly but surely....
I am happy to report....just a little thing but.... I actually took notice how dirty the lid of the tidy bin was in the kitchen this afternoon in the kitchen ....and took it to laundry and washed it....its only a small thing but I actually did something that over the past few weeks I have not had any inclination to take notice of or do....numbness was consuming me before..
Ouch cold over where you are -2 is freezing....I can't imagine how cold that is for you all over there....I sat outside again this evening it was a balmy 33 today but lovely this evening. I watched the clouds they are beautiful just beautiful...I have always loved looking at trees and plants and surrounds but today especially.....
Great things are looking better for you, so these Dr's are now realising they have been wrong and so they should admit their care was below standard, maybe from now on you will get better treatment .
It's nice to hear your both feeling better and taking time to watch those wonderful clouds, I love trees,we also have plenty of hugs.
You are a Gem talking me through this everyday the specialist
says he is 'fairly confident" I am ok after getting the report for
the internal ultrasound... just to make sure I have to do the wait thing for 3 months and have repeat pancreatic protocol CT and CA marker blood tests then review with him again....I am happy as, but want the 3 months gone so again I'm on patience watch....meanwhile we are both smiling today a bit more just need to watch those clouds some more.....I want my confidence back and my spirit for life to return.....
thanks Christo hope your day is a good one for you and yours xx Jo
I do hope your day has been good for you and your hubby....Yes more cloud watching.....and the time will go.....Hubby's blood tests were mostly good but he needs a check up.....so organised for next week...
I am trying to smile but still finding it difficult to just chill....nerves are running wild still.....trying to relax when I feel tired .....and still not sleeping well....so all this will come eventually....
Thankyou Christo for talking with me so much...you have your own problems too and I send my hugs and well wishes for you and family xo talk soon ...I appreciate the chats so much...
Hi Christo...it was about 26-29 c here today.....we went for a drive to the beach at Frankston...I love the sea....Hubby thought it would do me good to go for a walk feet in the sand and have a walk in the sea water.....I went with apprehension, and came home very relaxed.....we had a lovely walk along the beach together and the water was warm....peaceful, lots of families having great times together was nice to watch them all...busy with their kiddies....sand castles....and lots of calmness....boats and jet skis out of the beach in the deeper water....big ships in the distance....a big change from being around the farm.....nice, very nice.....
Yes hubby will have his check done I have made the appointment for him and will make sure he follows through....we don't need another misery situation at all....
We have just returned from a walk along the sea front dogs and children running on the beach boats sailing the only difference to our story and yours we have the blue skies but it's cold and windy 6c we live in different worlds.
So pleased you enjoyed you're walk sounds like a good idea to get away from the farm if you can,how long does it take to get to your beach with us 15 minutes we also love the sea and often walk the beach then.enjoy a nice coffee.
You are so lucky to be close to the sea and the beach....we have to travel about an hour and 1/2 to the nearest beach....and further if we want to go to Philip Island.....so a bit of a drive.....we can't take the dogs there the laws stop you here....there are places we can take them but its too difficult and the hours they are allowed don't allow us time to do it.....so Mia and Monty run on the farm they have a good big yard and lots of toys.....
Hubby took me out again today to Blue Rock Lake about an hour from home....I feel much less anxious again today....and we slept until 11 am so very lazy day.....
Its cool today about 22c and they are saying the next week will be about the same....Hubby says he thinks our summer is going to stay cooler ....I hope he is right....I don't like it when it gets too hot at all......
I am thinking your in UK somewhere....I would love to visit there one day but probably it won't ever happen because of my fear of flying again.....and I would have to be better much better....
I love the houses over there....we have a show here called Move to the Country ....think that's it....I love watching it because it has so many beautiful thatch cottage. and the 2 storey homes are so quant with such beautiful styling....as well as the semi attached homes etc......
we have a long weekend because its Australia day tomorrow....so hubby has a day of work tomorrow ....nice
You sound as if your sailing along nicely I'm so pleased for you, keep having those trips out its doing you both good,while your mind was busy regarding your health some times our hubby's can get left behind, so now it's time to spend good times like you are doing with him so you can both heal together after such a worring time.
We don't have a dog now, we have some laws were dogs are not allowed on the beach in the summer.
Is is right to say 'happy Australia Day' ?
Enjoy your weekend it's 4c here..... your sounding good well done you.
Hi Christo....Yep we did have a good long weekend until I got the tummy pains happening after we ate ice cream on way home on Sunday....we both ended up crook....I don't know if it was too rich or perhaps a bug in it....anyway today am starting to feel better but pain has been unbearable and it kicked my heart into an irregular beat not AF just lots of weird palpitations....today its settling but has unnerved me again ...so don't want to go back into AF....I think the ablation has worked well ....just a little gap somewhere that allows the path to go through but not continue....so good in a way....I have to keep telling myself its working your ok Jo.....
Thankyou for the happy Aussie Day....
Still a bit cool 19c today for our summer....but I expect when the kids get back into school next week it usually gets stinking hot for them unfortunately.....
I am doing better just need a break for a while from pain and nausea with gastroparesis its still causing strife but I am trying hard to get on top of it .....will go back to specialist I think if it wont settle soon....its a time thing....again I hope I don't have to have another ablation because this isn't much fun after it at all....the doctors keep telling me it might resolve be patient with myself ...I so hope they are right...
sorry you have not been well you could do with out that,hope your feeling enter today ? We like ice cream as well ! oh dear you don't think something like that would make you poorly.
I have not even in touch as we had friends here,this guy has had all kinds of serious illness no heart problems mostly back which he had a serious operation on, also surgary on his shoulder,his wife is also not in great health having said that they are always out or going some where !
I am feeling ok pleased to say my husband is the same he has to take great care.
We've had a bad weather report for our district so we do not expect to be going far until this snow clears if it arrives we've had warning so we shall see, its not looking to good at the moment.
Hi Christo..... Its always nice to have people come over and spend time together...helps the day pass and is good for the soul too, especially when you enjoy their company....Yes I keep telling myself there are others in this world with health problems far worse than mine....Glad to hear you are both doing well.....I am much better today (ice-cream is off the menu) ....have tweaked my tablets a bit more and that helped the tummy a lot today....My head is settling and I feel a lot less stressed as the days go by now and we are both starting to be more comfortable with each other again.....Hubby took me out again ( I have never been out so much in years...it seems that this health problem has made us move more and get out more again something good from something bad) .....We went to visit my son's wife and there little son today, he is just 8 months old and at the dada stage....I had a lovely time with nana cuddles and gave him a bottle....he had a quick sleep and before we left got to see our son as he came home early from work and also our eldest grandson of our daughter he has been staying with B and K and working beside him over the school holidays...they go back to school next week...so home tomorrow for him to get organised for school...
Yes the news spoke of bad weather for our northern hemisphere friends ...it sounds so like a lot of snow and very cold....I hope you are both warm inside and safe from the chilly air and any danger.....
Sending positive thoughts and thank you Christo....
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