Debbie’s story

My husband Matthew has Budd Chiari Syndrome which was diagnosed 5 years ago after a 9 month battle. The doctor said he was 99% sure it was alcohol related cirrhosis which we kept fighting as he did not drink excessively.

The symptoms started on honeymoon when Matthew was feeling short of breath and then on the flight home he fell asleep to be awoken by a swelling left leg that was aching. When showed to an air hostess she advised us to go straight to A&E when we touched down in Manchester. We went straight to A&E in Glan Clwyd, near to our home. They did think he had DVT, but the following day he had a scan on the leg which showed no signs of DVT. They gave him antibiotics as they said it might be because of mosquito bites that he had on his leg.

A week later he was no better so we visited our local GP (who was lovely) Dr Dobson. He asked Matthew to lift his t shirt up to which the GP said “You have a liver condition and am referring you straight to a liver consultant in the hospital.” We saw a consultant in the hospital (December 2009 / January 2010), who sent us for tests and more tests. He said he was 99% sure it was alcohol related cirrhosis which we both did not agree with and could not understand.

After a number of hospital visits and Matthew not showing any signs of getting better the consultant referred us to Leeds St James’s. Matthew had a liver transplant assessment and a liver biopsy which then the results for the Budd Chiari came. Just before our 1st Wedding Anniversary. We were relieved that we could now be heard that it was not alcohol, BUT not relieved as this new diagnosed illness was rare. Matthew also has now 2 kidney stones one in each kidney. We have just found out (2015).

We have been though a lot as we had a year of tests and results in 2010 then on 14th February 2011 we were in Glasgow seeing John Bishop - that night I will never forget as I have nightmares. Matthew woke in the night feeling sick. He went to the bathroom and was sick, when he returned I asked him how he was feeling and he said fine, he just ate something that was off. I felt that there was more to it and knew something else was wrong. 5 minutes later he said I feel sick again and went to the bathroom. I followed and all I saw was blood everywhere. I was so scared but being me I ran down stairs to reception got an ambulance called, when they arrived I explained what he had and we were taken to A&E in Glasgow.

He was sick again when we were there. Once he was sick he felt much better but was losing blood every time. At 8am they did an emergency op and banded the varices. Eight in total if I remember rightly. I met him on the ward at 10.30am where he was out of it, with drips either side of him. We were in a private room which helped. Due to the nurses being so busy I saw to all his needs. Taking him to the bathroom or helping in on the bed to go. And cleaning him up when needed. He was in and out of sleep all that day and asking me the same the questions when he came round. Wednesday I helped him have a shower. I was with him non-stop. When I met the consultant he asked me about his condition and I was able to shorten it and give him the main details which he said really helped him understand. He had to have 7 bags of blood while there.

We got home by the weekend. Travelled back on the Saturday morning by train.

2012 came and we went thought IVF as we both wanted children together. Matthew has a son by a previous relationship but I always wanted children and wanted to do it the right way by being married first and I didn’t want to get married till I found the right person.

We both agreed once we were married we were going to start trying. But due to the condition this did not happen. We had IVF as Matthew’s condition has affected his sperm count. We have had two attempts and not been successful. This has been really hard for me to deal with but we get by, by being positive and hoping one day it might happen naturally. 2013 and 2014 have been just dealing with day to day issues. Still hoping each month that this might be the month.

We try to still do all the things we want to do so that the condition does not stop us. We live with it, it does affect Matthew at times but am very much a positive person and point out all the great things he has going for him. I struggle at times as I feel what about me….. The one thing I want and I can’t have.

I will always keep him busy and don’t let him get down, most of the time if you look at him he doesn’t even look ill but all his insides are a mess. He struggles in the bedroom department and this does upset me as I have always been sexually active but I will never put pressure on him. We will have been married 6 years this October and living with his condition for 6 years. He is stable and is kept an eye on regularly which is good but this condition is so rare in the UK, the consultants and GP are still learning about it. He will have to have a liver transplant if he starts showing signs of going downwards and again we will deal with it when the time comes.

We are both only 41 so we were 35 when this all started. We have not known anyone else who has had this condition. We have each other and Bradley, Matt’s son. So that is a blessing but not having children is the worst thing for me. I think for Matthew it is being at home full time and being tired all the time is so hard. Not being able to run around a field with his son to play football and not being able to walk too far. He also gets upset that he feels it’s his fault about me not having children and what type of husband he is to me.

Matthew does not work now and is registered disabled. It would be difficult for him to get a job as he is on water tablets daily and warfarin and other medications. Plus he gets confused often.

All the doctors and consultants we see now are lovely. And the consultant that said it was 99% alcohol related still can’t believe it as Matthew was not showing the signs of a Budd Chiari person. We have a great laugh with him now and we see him regularly! No one can answer the reason for the condition, Leeds St James say Jak2 gene mutation but still not sure.

I don’t think there is enough known about Budd Chiari Syndrome in the UK as cirrhosis is not always just to do with alcohol. I do think more awareness is needed for the younger generation.

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