9 years on: Well I am currently sitting... - British Liver Trust

British Liver Trust

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9 years on

AyrshireK profile image
AyrshireK

Well I am currently sitting in my car outside the Golden Jubilee Hospital at Clydebank whilst hubby is in there having an MRI scan to follow up some lesions that were found on his last ultrasound scan.

I seem to spend a lot of time waiting at one hospital or another and it struck me earlier that on this very day 9 years ago I was waiting within our A&E at our local hospital after rushing my then fiance into hospital that morning after he'd been vomitting blood over night. Within the next 3 weeks he would be diagnosed with decompensated cirrhosis, portal hypertension, burst varices and deranged blood tests. A liver biopsy revealed an auto immune cause to his liver ill health.

He's fairly stable at present, he makes the absolute most of good days. His 60th Birthday was on Tuesday and together we climbed the highest hill/mountain in Ayrshire together which involved an 8 mile walk plus almost 2000 feet of climbing.

Hopefully this scan throws up nothing too irregular and he can continue his walking and his planned adventures. A recent blip in blood tests and this scan have us a little concerned together with a little bit of medical neglect of late with delays in actually reviewing the ultrasound but we'll press on.

It's not all doom and gloom, 9 years on and hubby is perusing maps and carrying out reconnaissance for hoped for caravan holidays and further big walks to drag me on.

Keep on keeping on everyone. Live your lives to the max.

Katie

33 Replies

Good luck to you both...Richard

Good luck to you ❤️

Good Luck & Best Wishes to you both x

Good luck Katie 👍🏻Xx

Hope he has good results xxxxxx

You are such an amazing whife and person ❤️it is very important to have such a supportive other half!i am do thankful to my hubby who is next to me nearly 18 yeary,15 if wich i had AIH.He always been by my side,also waiting at hospitals,driving me to and from.Caring for me after bandings and other procedures,and now after transplant!

I wish for you many more years of climbing the mountains and making those plans ❤️i hope it’s just a blip and nothing serious ❤️❤️Hugs xx

Anyone who has followed Indre's story on the Facebook AIH group page will know what a true inspiration she is, always cheerful and looking on the bright side despite going through some horrendous periods of illness and her recent transplant. I hope she continues to a full recovery and I send best wishes to Katie and her hubby for all the positive and informed advice she gives here.

Aww thank you lovely ❤️Nice to see some people from facebook in here aswell 🥰xx

AyrshireK profile image
AyrshireK in reply to Indre123

Lovely following you on Facebook Indre too, you are doing fabulous and will be hitting your own hills soon.

Katie x

laura53923 profile image
laura53923 in reply to Indre123

Aww well done Indre. Great to see such positivity and happiness dispite your challenges xx

This is all good to hear Katie. Please pass on my best wishes to your hubby from a fellow Taurean. (mines next Thursday). We are off to Cornwall in June, just to get away and recharge the batteries. Have fun campers. Hi De Hi

Praying that hubby will be fine. Despite having autoimmune hepatitis, he is one very lucky man. And we here know why that is Katie.

Fingers crossed for both of you.xxx

Sending you both much love and very best wishes. Xxx

Good luck, sounds like you are an amazing couple and lucky to have found each other, just know how appreciated you are on here also Xx

All the best Katie. 😊

Fingers crossed Katie 🤞.. my love to you both ❤ x

Good luck to you both xx

Hope all went well for you today. Sending strength and best wishes to you both xx

If he can do all those things now, then keep on encouraging him You are both doing well

Best wishes to you both, you have been a inspiration, keep living life to the full

David

Hi Katie. Thank you so much for sharing your current story.

Please keep us posted! Thoughts and prayers to you and your husband.

Cheers. Dan

Positive words as always Katie! Best wishes to your husband x

Katie,

Wishing you both the very best.

Mary

Katie, I hope all went well yesterday and it is all just precautionary.Take care and I hope you are enjoying this weather☀️ and you caravan awaits many more happy times in the road and new adventures together. 🤗X

Good luck to you both, Katie. You’ve certainly been on that “long and winding road” for an awfully long time. Not sure about those big walks - yoiks - but the caravan holiday bit sounds great 😀👍.

Miles

That’s encouraging. Good luck.

Trust1 profile image
Trust1Administrator

We are thinking of you both Katie.

Thank you for being such a supportive and informative member of our forum. I know that many many members appreciate your input, as do all of Team BLT.

Well, 6/5/21 and we got a phonecall after 5pm today from Edinburgh specialist - amazing doctor. She saw the MRI scan report yesterday and it was reviewed at the x-ray meeting at liver unit.

Best news was there is no evidence of any cancer in the liver, just more nodules in what is a very nodular and mishapen cirrhotic liver.

But, scan has identified several gall stones which have made their way into the bile duct. Not blocking it at the moment but may if they arn't dealt with a.s.a.p. His ALP is more than double what it should be and bilirubin on the rise (picked up in bloods I organized at GP surgery).

Plan now is for him to go over to Edinburgh for an ERCP to get rid of the stones or they may cause a blockage that could lead to infection and massive rise in bilirubin. Hopefully due to happen in the next 4-6 weeks - she's liaising with the various teams to make it happen a.s.a.p. Sadly for hubby it's another endoscopic procedure but doctor assures us he will be very heavily sedated (can't get a GA due to the covid situation) and she will make the team very aware of his very delicate gag reflex. She will follow up with the endoscopy for his varices monitoring & banding either directly after the ERCP or in days following. They are running 5 lists for endoscopy per week but only 4 patients on the list per day due to the deep cleaning they are doing between patients.

So that's our update.

Katie

Oh, Katie! What a lot you and hubby have had to go through! Thank God it wasn't cancer and at least having to have the scan has brought to light something that may have resulted in another emergency. Now you can deal with it in a calm and controlled way without having a blue light dash to hospital.You have helped so many people on here - I'm sure they'll all be thinking of you and hubby and hoping for a satisfactory outcome.

Apologies for picking you up on this point, but having been through ESLD and a transplant, and then cancer, I can assure you that cirrhosis was far more unpleasant.

I take your point absolutely - I can imagine nothing worse than cirrhosis - but it seems hard that Katie's OH has had to go through AIH and cirrhosis and then the possibility of cancer as well.

Everyone with cirrhosis has a slightly increased risk of cancer which is why they undergo the 6 monthly screening.

His ultrasound scan in January threw up some irregularities - some lesions that hadn't been seen before so he was sent for the MRI which was thankfully clear of any cancer but also highlighted this issue with the bile duct so it is a good thing.

Hubby does ok, the AIH never gave him any grief (asymptomatic) until it obviously led to cirrhosis and it's all the side effects of that which we now deal with day to day. He really doesn't let it bother him too much - apart from the dread of thinking about another more serious endoscopic procedure he's trying not to thing about it and today we have been off hill walking again - an 8 + miler in the very snowy Galloway Hills.

Thanks for your thoughts, Katie x

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