Back From Hospital

A quick update -

Many of you will know that Mark was re-admitted to hospital yesterday with chest pains. It turned out that the pericarditis had returned. Fortunately there was no fluid build up as it was the early stages, just inflamed pericardiums. This was perhaps a blessing in disguise as it has resulted in him seeing many of the consultants we have been fighting to get appointments with over the past 2 weeks and in being treated with steroids. We still wait for a confirmed diagnosis, but the treatment given is for Adult Onset Still's Disease - so we're half-way there at least!

He is home again and carrying on as if nothing had happened! A 24 hour visit this time thank goodness!

Will post more details as and when we know them. For now, much love to you all.

Ruth x

back in hospital

not sure if anyone is checking this at the moment becuase things have seemed to calm down. it is probably only a blip but mark is back in hospital with pericardial effusion , which seems to be fluid around the heart cavity. we are presuming that this is only for a few days... watch this space

thank you

thanks for checking this blog again - no more news as yet and i am rushing coz i have to go and coach squash to year 8 kids. have a great weekend and keep loving life.
love from mark and ruth as well.

Whoops :)

Mark and Ruth went to the hospital yesterday for the follow up visit as arranged. Unfortunately the letter had actually said 10th Sept and not the 10th July. On realising this, they were pretty concerned that they would have to wait another 2 months for their appointment so they went to the doctor straight away and asked if this was correct. The doc said that he would sort it out and get back to them asap. Hopefully they will have an appointment in the next week or there abouts so that appropriate medication can start.

Other than that, Mark seems to be ok. Obviously a bit discouraged but trying hard to keep his spirits high. More anon.

Feedback from Hospital Visit

Hello to all!

We've returned from this morning's hospital visit exhausted and unclear as to the way forward, but were hugely reassured to receive a further follow-up appointment through the post for tomorrow morning!

In brief, Mark is doing well. He's gaining weight suitably, his appetite has returned and he's enjoying food (Alleluia!), his temperature has remained normal and his heart rate appears to be going down/being regulated by beta blockers. He still struggles with sleeping as his shoulders give him a lot of pain, but the overall outlook is very promising! He managed a long (very slow) walk up Cleeve Hill on Saturday (wasn't it a beautiful day too!) which he thoroughly enjoyed and was so pleased to be able to do.

As a result of this mornings appointment, the Consultant feels that there is a strong chance that Mark has a disease known as Adult Onset Still's Disease (AOSD). This is a very rare disease and unsurprisingly, is hard to diagnose. Certainly, Mark's symptoms over the past 6-8 weeks tick off all of those expected. The next step is for Mark to see a rheumatic/arthritic doctor - which we are doing tomorrow morning at 9am. He/She should be able to make a decision about whether to start treatment, and indeed which course of treatment to follow. It seems likely that this will be steroids and Mark is not too happy about that because of the side effects associated with them. However, this is not something to dwell on for now, we will no more (I hope) tomorrow.

I/Mark will update the blog at some point tomorrow with the results/decisions made. In the meantime, we send you all our love and many many thanks. Your comments and words of support continue to give Mark strength and pull him up when he's feeling down.

Thank you Ruth x

Spanish Message

Could the person who posted a message in Spanish yesterday please post it again - in my misplaced enthusiasm i deleted it. sorry. No news from mark other than he seems to be progressing. he walked around the block twice yesterday which must have taken him quite a time. he said that he tried to slowly do a jogging movement to see what it felt like but he had forgotten how to do it. He also texted me and called me a 'weirdo' so i guess his sense of humour is returning :)

for those of you who were worrying for his sense of adventure - fear not. last weekend, whilst still confined to hospital, mark made a daring break from the ward for a brief period of freedom (ben perkins asked me not to reveal whose car was being driven). it was quite a shock for ruth and me back at their house to see mark walking up the path. a fun and special half hour and of course, he smuggled himself back in under cover of a blanket, without getting caught.

National Tennnis Championship

Do keep posting your messages for Mark. I speak to him most days and will continue to post updates myself. On Monday Mark can post the medical report himself and then we'll see if my daily posts are still useful.
Wimbledon reminds me that Mark made me laff more than i can ever remember some years ago. We were playing tennis doubles in a national championship tournament. Mark produced an absolutley brilliant cross court shot to win the championship which led our opponent to say 'great angle mark'. Without blinking an eye, mark replied 'thanks Pythagoras'! I thought that was so funny. totally fantastic. True story (apart from the tournament bit).

A BIG Hello from Me.....

Dear All,
After five weeks I am finally home.
Its been quite an experience and I am left feeling weak and tired.
I dont really know what happens now, I have a few more tests on monday and these will be fairly extensive to make sure I am up to being out of hospital.
Its so nice to be able to walk around my own home, to eat what I want etc.
I want to say that whilst in hospital I felt very loved, by my family and by friends, I had Ruthie bringing me an up date of the blog regularly and the sentiments and encouragement from all helped me through some of the toughest times in my life, so for this I say a heart felt thankyou.
I shall relay the information from next mondays tests.
So until then, with much love
Mark

watching daytime telly :)

Above are two photos taken a couple months ago at skid (aka squida / richard) and abi's wedding. Thanks skid.

I am hoping that soon enough mark will be able to write this blog. i spoke to him last night and he seemed in good spirits - though understandably very weak. he is going to see the consultant next monday for a full examination and hopefully between now and then he will be staying well away from the hospital. He said that it was the smell of the hospital that he was growing to detest (as well as the long hours with no diagnosis). Ruth brought in meals for him everyday so he was not subjected to the hospital food (which might actually be very good, i don't know). I think that it will be hard for both mark and ruth now that he is at home. pacing the rehabilitation correctly is going to be a challenge.