Whoops!

For those who have read last night's blog, hope the error made you giggle. Michael obviously went back to hospital. For those who have not read it, error already changed so no giggling for you!!

Justine

read my blog:www.the-transplant-wife.blogspot.com

I wasn't in Oxford today, although I have heard that Michael didn't spend the day in his pyjamas!!

He's had his scope and a biopsy taken of the ulcer; his on fluids as he's quite dry; day 2 of new drugs; and hopefully home soon. They are pretty certain that the problem is the bacteria overload so hopefully once this is sorted he'll be back on track. He should be home in the next couple of days and then I guess we'll go back when he's finished his course of meds.

It's terrible how easily the kids and I have slotted back into 'dad's not here' mode. They took it so well when I told them on Tuesday that Michael had gone back into hospital. I'm sure it's because they could see that Daddy wasn't unwell but knew he was just having problems. I felt quite ridiculous notifying the school yesterday (always like to keep them up to date just in case the kids do have a problem at school) that Michael had gone back into hospital but stating that the kids didn't have a problem with this. I know I've mentioned it before but how sad is it that our kids have adapted so well to all these hospital stays and ill health?

The corner sofa does look quite empty without Michael and his computer sitting there, but hopefully he'll be cluttering up the space very soon.

xx

12.50 pm

So here we are again in Oxford - Michael in his pjs sitting on his bed, watching Loose Women together. Did just query with Michael why he doesn't get dressed and sit on the chair. Answer? Can't be bothered and chair too uncomfortable.

We're back to the usual routine - walk to shop for paper, watch morning tv, read paper and tweeting (Michael not me). Seems daft that he's back in when he seems so much better but obviously get that they've got to sort this feed problem out.

The Surgeon has just seen us. The plan is - scope and biopsy tomorrow, as well as biopsy of the ulcer he still has. Not doing today as Michael has only just come off Deltaparin (blood thinning) and therefore not good to take biopsy of ulcer which already bleeds. Just about to connect back to the 'new' feed - yes, same problems will occur but obviously still got to get nutrition. Input/ouput will be closely monitored.

Michael started a new drug last night - ciprofloxin. They believe the problem is connected to too much bacteria in the gut. This is caused by the feed sitting in the gut before being absorbed and 'fermenting' which causes bacteria overload. It will take about 10 days to see whether this works, at which stage a further drug is needed to put 'good' bacteria back into the gut. I'm just hoping he won't have to stay in for that whole period.

Will keep you posted.

xx

Justine

read my blog:www.the-transplant-wife.blogspot.com

Tuesday 23 January 2012

There was me moaning yesterday that I didn't think the feed was the problem, and today the hospital called to say the Surgeon wants Michael back in to investigate further. I wanted to go with but the hospital didn't really want to wait until tomorrow as a bed was available (I did request a sea view for Michael!). Bad enough that Michael was going back into hospital, without the kids having a clue, so I didn't want to not be around when the they got home. Thankfully his Dad was around to take him in. I'm now waiting to hear that he's arrived, although I can't imagine that they'll be much 'investigations' today.

Obviously we were both disappointed that Michael's had to go back into hospital but hopefully it won't be for too long and, more importantly, they'll sort out these problems he's been experiencing.

I'll keep you posted.

xx

Monday 22 January 2011

Cannot believe another week has flown by. There I was worried about when I'd get my next lie in, and I've already managed to squeeze 1 in!!

Last week was, as expected, exhausting. Les Mis was a fabulous show and I was very proud of Lauren being part of such an amazing production. The biggest shame was that Michael couldn't watch. I know Les Mis is not his idea of fun but to miss his baby on stage is so unfair. Meanwhile, there I was worried about how I was going to get her out of bed each morning and actually she wasn't too bad - I didn't cope as well. As there was absolutely no chance of me getting out of bed any later than 7am each morning, I did, for the first time, take Nathan to the stables in my pjs and dressing gown yesterday and then climbed back into bed until 10.30 am. Absolute bliss.

We had the busiest, but loveliest weekend and, as always, Michael was not able to join us. It was our dear friends' son's Bar Mitzvah and it was wonderful that we were all (of course, not Michael) part of both the Saturday and Sunday celebrations. On Saturday morning, I left Michael in bed, not yet ready to get up. I popped back at lunchtime, just to check all was ok and he was comfortable in his usual corner seat of the sofa, with phone, computer and dog for company! When I returned again in the afternoon - feeling guilty that he'd spend so much time alone, he was in his usual corner seat of the sofa, with phone, computer and dog for company!. Not sure whether he'd moved at all or not. Of course, everyone asked how Michael was and whether they'd be seeing him over the weekend and I repeated the same old story ...... 'no - too much risk of catching germs when so many people' and, in answer to 'how is Michael', the usual response of 'looking much better, getting stronger but insides doing very slowly'. Don't get me wrong, it's wonderful that so many people want to know how things are and care for us both, but my answers always feel so inadequate. The reality is, there's not going to be any major leap forward in how Michael's feeling from one day to the next. One friend said but 'you know he's improving, he looks so much better - think where you were a couple of months ago' but, in truth, Michael's internal problems, for him, don't feel much different at all. I'm sure if I could put our lives pre-transplant and post-transplant side by side I'd say what an amazing improvement there is but, to be honest, I can't.

Michael is really struggling with this whole feed thing. I'm sure if you were brave enough to read his blog on Saturday, you'll know the problems he's encountered (and if you have ready it, I apologise!!!!). This is exhausting for him and frustrating for me. As I said last week, we had all our questions answered when we were in Oxford on Wednesday but by the time we got home, we felt that we hadn't really progressed anywhere. I still really don't understand why Michael bloats up so much when he's on his feed. In my opinion it's like it doesn't get absorbed in the system, and collects like a filled up balloon. When he's going to pop, I'm not quite sure.

He's had two days off the feed, as advised, and today he went onto the new feed which they gave us. The positive was that he didn't have the usual outpouring that he normally gets when on the feed. I did initially think - yippee, maybe I shouldn't have been so pessimistic and maybe this new feed will be the change he needs. It's now 7 hours later, and the output has began to increase and he's feeling extremely bloated again. So I'm back to my usual frustrated self. I can't help thinking that perhaps something just hasn't kicked in and isn't working properly. Am I wrong to assume that if the bowel and stomach are working properly now, that food/feed goes in, goes through the system doing the necessary work and then comes out??? I understand that certain proteins may be too heavy to digest at this stage, so a soft diet is preferable, but just don't understand why the rest isn't working more 'normally'. Until normal happens, the sickness isn't going to get any better either. And so we go on......

The Nutritionist, who Michael is in constant contact with, has said if this new feed doesn't work, she has other ideas. I can also contact her at any stage, with any queries I have but at the moment I feel that perhaps I'm a little negative about the feed itself being the problem and I will therefore wait and see what other 'goodies' she's going to get Michael to try. I truly hope I'm proved wrong and that eventually, the feed will get sorted and in turn the bloatedness and other problems will be solved.

If only Michael could get more calories in him to get off the feed altogether. That's easier said than done though as with his limited soft diet, there's only so much he can eat. He is doing well though - porridge most mornings and then a selection of either omelettes, choc mouse, strawberry mousse, chopped liver, pates, yoghurts. Any other suggestions welcome please!!

Feel awful - just had a call from my daughter, in a blind panic as she's just jumped off the school bus as she realised she had an afterschool lesson, which I too forgot about. I have noticed that I just don't seem to be able to concentrate properly on anything and my mind jumps from one thing to the next. Normally I'm so good and reminding the kids what they're up to after school, but today I forgot to tell Nathan about his after school rehearsal but did remember in time to text him. Lauren? Completely forgot - perhaps if I'd looked at my phone earlier I would have noticed the reminder that came up and could have texted her so she didn't land up being so upset. Oh well - managed to calm the situation.

My mind has now (again) wandered off so rather than rambling (although I may have already done that!), I will say goodbye.

xx

How being at home can drive two people crazy!!

Just some observations today......

Is it me or is it quite obvious that crackers do not generally go in the soft food group? We sat down for a late lunch today - Michael put a piece of bread in the toaster and I told him that toast wasn't really soft food and reminded him that his soft diet is to help with his stoma output. No problem until he then sat down with the box of crackers. I have to admit that I did lose it but in my mind it's so very clear that there's absolutely no difference between crackers and toast.

Now I know Michael's trying to be very helpful around the house - you know, putting things away so you don't know where they are..... Well I was in the midst of cleaning the toilet - had sprayed the cleaner on it and then got side tracked into doing something else. When I did go back to finish the job off, the seat was down (when does a man ever close the lid?!). So - he'd managed to use the loo and not notice that it was covered in cleaner :)

Just the usual daily routine - argghhhhh!!!

We were back at Oxford for the usual tests today. Horrible driving conditions today but thankfully we made it in good time. Bit of a false start though. I took the kids to school today - just meant Lauren got a bit of a lie in as bed time so far this week has been midnight!! Came home to collect Michael who was panicking as he'd just found a hospital letter stating he had an appointment for tomorrow. I did remember that we had definitely made today's appointment but then had received a letter detailing appointments for last week, tomorrow and one for 2013!! I had left it to Michael to phone and sort and, of course, he hadn't. So, he called the hospital to double check and we then waited for them to call us back to confirm before we set off. Anyway, made it by 10.20 am which was pretty good - especially as I'd woken and heard that there'd been an accident around our stretch of the M25.

Not too much hanging around today, although we were still there till after 1pm. Bloods took forever as usual and then we met with the nurse to go through any problems we were experiencing. Most of our questions related to the feed, so we held off until our next meeting. The Nutritionist believes the problems Michael is experiencing is definitely from the new drug he was put on before he came out of hospital, which he stopped nearly two weeks ago. This takes about 14 days to clear from the body and therefore we will see if everything calms down by the latest, Saturday. My gut feeling (don't normally talk about my gut) is that it wont make any difference, and it's just the actual feed that's causing Michael the problems. But it's all trial and error at the moment, and we'll see what happens. She did give us a new feed to try out (guinea pig style!) if things don't improve and see if that makes a difference. Food was also discussed and she feels at the moment, Michael should try and keep to a soft diet - ie. custards, yoghurts, mushed vegetables (bet you can see his face if I gave him that!), cheese sauces, etc.

No scope today as the surgeon felt there was no need. I did query that Michael still looks very bloated - a bit like when he was on tpn. The surgeon felt that now Michael had a functional intestine (rather than the hard lump he had pre-surgery) that this was his normal shape. Neither of us are convinced and I guess like everything, it will be a good few months before we'll really see what the final 'picture' is.

The whole way home all I could think of was my lovely soft bed. Having also had two late nights (well for me anyway), I was feeling the worse for wear. Didn't really help that I had to drive to Oxford today. Know at certain points in the journey Michael was definitely holding onto the seat and double checking that my eyes were still open. Made it back in good time (under and hour) and literally climbed the stairs and threw myself on the bed and had an amazing hour and a half snooze. Feel so much better, although another late night awaits Lauren and me.

Do Michael and I feel like it was a successful day? Not really (although not unsuccessful). Not like we came away with any definitive answers although we both realise this is the nature of bowel transplant. Hopefully (for others), 10 years down the road, there will be more precise answers on the sort of queries we have.

xx

Monday 16 January

Blogging gaps are becoming longer now - not really convinced I've enough to fill a daily page.

So how have we moved on since last I wrote? To be honest, no where very much. Yes - Michael is slowly gaining energy and our walks are becoming slightly longer. He's still feeling pretty rough most of the time, although now he does have more periods of feeling slightly better as he's been told by the Nutritionist to stay off his feed for two days and back on for one. Basically, it's not agreeing with him, for various reasons, together with his bowel working too quickly - again for various reasons, and they are looking at changing it (I think?!) and putting him on a new drug (something to do with having too much bacteria in his gut). We're back to Oxford on Wednesday for biopsy, etc and hopefully we'll find out more then. As ever, the team have been excellent - Michael has had numerous conversations and emails with the Nutritionist trying to get the problem sorted. I can really really see the difference with Michael now on the day's he's not having his feed - mentally and physically. He's just had his two day's off and the feed went back on tonight. He was far from happy about this and it means he wont get such a good night's sleep. I so wish he could eat enough calories to fully get off the feed. He is doing fairly well though - today was a thick and creamy yoghurt, cheese omelette, and a dinner every child would be jealous of...... chocolate pudding with chocolate sauce. My poor children had to suffer eating a healthy savoury meal whilst watching their Dad eat that (illness can be so cruel to those around you!).

Did feel bad at the weekend (well I laughed really!!). Went for a walk to the shops. It was too far for Waffle to go as he's only allowed 5 mins walk for the next few days. Poor Michael was huffing and puffing as it was a real stretch on his energy, when we bumped into someone we knew. She asked where the dog was, and of course how Michael was. I explained that it was too far for Waffle to walk and she looked at Michael and commented 'but what about you?'. So now people think I care more about the dog than my husband. All I can say is that my husband is a much better patient and whereas he hardly every moans and generally always puts on a brave face, the pathetic dog has only just started to put his bad leg on the ground (over a week after the op, whereas most dogs will do so the day after the op), whimpers when we had to pull the plaster off, pulled half his stitches out and then lifts up his leg for attention when anybody walks into the house just for a bit of sympathy. Maybe that's Michael's mistake - he should learn a thing or two from Waffle and then maybe I won't 'force' him to take such long walks.

This week's a really busy one and I did wake up this morning trying to calculate when my next lie-in would be. It's so far away, I gave up in the end. Lauren's show starts this Wednesday and as I have a Chaperone's license (don't even ask why), I offered to help. Therefore I'm out every night this week from tomorrow, and then at the weekend we have very dear friends' son's Bar Mitzvah. Shame of it is, Michael can't see Lauren in the show or join us in the weekend celebrations. Such a shame that he'll be on his own on Sunday evening whilst we're all partying - unfortunately there's going to be quite a few of those occasions over the next few months.

As tired as I am thinking about the week ahead, I'm more drained thinking about how Lauren is going to cope and how I'll deal with her tiredness. One side of it is that she's having a great experience but, on the other hand, I know she's not going to get to bed before 10.45 one night this week. She had a Bat Mitzvah on Saturday evening and then rehearsal yesterday and without going into too much detail, by the time she fell asleep last night, I was hoping Michael had a secret stash of valium that I could take to calm my nerves. Michael's health problems have, naturally, caused me hours of worry but 12 year old daughters can most certainly quadruple any mother's stress levels. So please excuse me if you do happen to see me over the next week looking stressed and grumpy and perhaps with a sore throat (too much shouting!!) - be assured that it's nothing to do with my husband's health but the life of a teenager!!

Hoping to have some positive news to report on Wednesday, and most certainly that it's something that helps to make Michael feel better, and happier.

xx

Tuesday 10th January 2012

No blog in 5 days you may say. To be honest, now that Michael's home and blogging himself, I'm not sure what to say! I'd love to be able to tell you life's returned to normal but, if you've been reading http://www.beingapatient.blogspot.com/ you know that's far from the truth.

There was me faithfully blogging every day. Sometimes, 5 times a day, with so much to tell you. Now - I really can't believe anyone would be interested in our daily life. It's one thing Michael telling you all the his 'personal' details of how he's getting on and his daily rituals and but does anyone really want to hear what I'm getting up to. Life is mundane at the moment. Don't get me wrong - that's not a bad thing (not that fabulous either). It's just a recovery thing I guess. In a way we're both waiting for the time when Michael feels better (perhaps feels as good as he now looks - we're not talking drop dead gorgeous or anything - just healthy!!) and we're not constantly monitoring inputs/outputs/food tolerance, etc.

I'm constantly thinking of what food I can encourage Michael with. There are times when he's more willing than others. Although I have just read that he didn't have breakfast yesterday as I was out - he really shouldn't have admitted that one. I'll be on the lookout now. But seriously - there's so many worries on my mind. I want him to eat as that's part of his recovery; eating often makes him feel sick so I feel guilty that I've pushed food on him; when he has eaten and isn't sick there's a huge sense of relief that the stomach must be working as the food has stayed down; I want him to eat more so that he can get off this awful liquid feed going into his intestine (which we now think is now the cause of terrible discomfort and bloatedness) - once he's off that he can have one more tube removed from his tummy. It's hard knowing that it's best to take things slowly but really wanting to move things along.

Michael's definitely doing more at home - emptying the dishwasher, offering to iron!!, taking the recuperating dog for his 5 minute walk round the block. He does obviously get very tired but I am encouraging him to do a little more each day - you know, one more walk - a little longer each time; take the washing out of the machine. He has been given the all clear to drive, although we've both agreed he will only do so if he absolutely needs to - obviously it's no good getting behind the wheel when he's in pain or just feeling rough and can't concentrate. On the otherhand, sometimes doing something takes your mind off how you feel. Everything's a predicament - try and carry on as normal even though you're feeling lousy - or sit and relax until you feel better. Much easier when you know in a few days you'll be up and raring to go. So much harder when you know this is not a short term thing and we could be having the same discussion for months.

So much for not having anything to blog about!! Just taking a pause to shower and get myself together. And that's another thing - it's 9.14am and I'm still not dressed. The last couple of days have been slow starters. I've been up with the kids but then seem to potter around before actually getting going - think I'll have to kick myself out of that routine. Be back soon...............

Not so soon - it's now 10.40 pm and another day as flown past. Not quite sure what I achieved. Before getting dressed, Michael had a bad start to the morning, taking ages to get himself sorted and my nursing skills were needed (perhaps actually more of a care assistant role when I think about it). Someone asked me today how the two of us were coping together - in other words were we ready to murder each other. As mad as Michael, and the situation, often drives me, I can honestly say that murder is not yet on my mind (please note the 'yet'!!).

An old friend came round to visit Michael today - someone we hadn't seen for many years. Amazing how illness (with the help of facebook) brings people back together. After a gourmet lunch of cheese omelette we ventured out to Harlequin. Not very exciting I hear you say but I needed to return some items (I'm sure I return more than I purchase - how does that work out?) and thought it would do Michael good just to get out of the house. He managed two shops and then I left him in a nice quiet corner of JL coffee shop, reading the paper, while I finished off.

Back home, ready for the kids return and then the usual chauffeuring duties, supper, meeting at school, blog and bed. Meanwhile, Michael spent the remainder of the afternoon on his computer and phone. Can someone be addicted to twitter? If he's not tweeting, he's figuring out how to get his blog higher up the rankings on google. Perhaps I should introduce him to the Wii, just to give him a bit of technology variety. It's one thing when the kids are immersed in their phones, but when it's a grown man!!

So now you know why I haven't blogged. Does anyone really want to hear all of this? Hope you're not too jealous of all the excitement :)

Night xx

Thursday 5th January

Time taken out today on patient no. 1 and took patient no 2 - Waffle - back to the Vet. Took my mind of Michael whilst waiting for the Vet to call and give us the prognosis of the xray. Another cruciate knee ligament op. Our poor doggy, who has, 13 weeks later, just fully got over the last operation is back having major surgery. It's a shame but much easier with the dog having to have further surgery!! He'll be back home tomorrow and whereas I had to pass all his treatment over to my sis and brother-in-law last time, it'll be down to us. I reckon if Michael helps him, Waffle may reciprocate!!

So how's Michael? I'm sure his blog says it all - every day is hard and, at the moment, every day we find something else to worry about. We're back at Oxford tomorrow as the Surgeon has requested to see us - nothing to worry about (I hope) but Michael sent him some pictures of his stoma as he had a concern, and he'd like to check things out. Time to personally ask all those questions as well. Today's 'problem' is that Michael's neck hurts - in true wife style, I prodded in order to give my diagnosis. I think maybe it's his glands (please don't call me instead of NHS Direct!!!) but we'll obviously get them to check this out tomorrow.

Michael's had his feed on all day today. The Nutritionist (I believe Michael calls her a dietician - is there a difference?) suggested this to see if it affects his output at all. It did help him to sleep better last night as he didn't have to get up as much during the night. Just means he's obviously got to carry the feed around all day - for the first time he used the little bag it comes with (not that he actually ventured out the house because of the awful weather) and typically we couldn't figure it out. We both had a lesson how to put the feed in the bag and attach everything just before Michael left hospital the first time. We called a helpline and, what an amazing service, someone from the Company that supplies the feed, came round at 1.00pm. And, we weren't as stupid as we thought - they'd forgotten to include a vital piece of the equipment. All now sorted. I'm just happy that Michael will get another decent night sleep. Don't get me wrong - doesn't affect me at all. I'm such a deep sleeper - Michael could be dancing on the bed (what a sight) all night, and I still wouldn't wake. Just think it's so important for him to sleep well, especially now that he doesn't really have a nap in the day. Sounds like a conversation I would have had when the kids were small :)

So my day tomorrow is planned. Well it was planned and has now been rearranged - off to Oxford. If it's as windy as today, we'll take my car - not sure Michael's little car wouldn't get blown off the road. Hope we come back smiling. Will keep you posted.

xx

Tuesday evening: 3 January 2012

First blog of the New Year. I realise that Michael has now taken over on the blogging front but he is the one who can truly explain what's going on in this very long recovery period.

The kids went back to school today and there was me thinking 'back to normal' when actually I'm not even sure what normal is. Before they broke up for the holidays, normal was flying up and down the motorway to visit Michael in Oxford. Prior to that, it was obviously Michael being at home, not particularly well, with little energy. Now? Well Michael's at home, not feeling particularly well, with a little more energy. So how have we progressed?

I know that's an awful thing to say, but it does sort of feel like the last 12 weeks have come and gone and we're back to where we were. True to say, Michael does now not need his afternoon sleep, although does have the occasional cat-nap. He is eating more (a little, still under duress) but is still occasionally being sick. Still got tummy aches and mostly always feels pretty yuck. Neither of us have ever asked the question 'was it worth it' but I don't think either of us really understood how difficult the recuperation at home would be.

Michael is only the 11th patient at Oxford and everything from the actual operation to the preliminary tests is all quite new. We never realised that there would not be daily progress that we could easily monitor. It's more like 2 steps forward, 4 steps back. People kindly ask how Michael is progressing - it would be so much easier to say he's doing really well and I can see the improvement but it most certainly is not that simple. I feel a bit pathetic when I say he's just ok and nothing really to report. How can there be nothing to report? I guess he had tuna mayo today - that's news isn't it??

We were at Oxford today and had a whole list of questions for the Surgeon. Unfortunately (and frustratingly) we didn't get to see him. Michael had been told last week that he would be seeing him and felt quite relieved that after about 4 weeks he was going to be able to go through all his questions - the Team are great but I think it's quite understandable that Michael holds him in such high regard. We were both disappointed but he won't escape that easily - Michael has emailed him our list of questions. All we found out was that last week's biopsy was 'fine' - does that mean: hasn't got worse; has got worse but nothing to worry about; it's got better??? Guess we'll find out more in two weeks when we go back again and Michael has another scope.

From the kids point of view, things are going great. You may know that Nathan was blogging (not very often). I asked him at the weekend if he was going to blog and he said he didn't have anything to say. From his point of view, Dad's home and he doesn't have to visit him in hospital. He's been busy seeing his friends over the holidays and we've been out as a family (even though Michael hasn't had the energy to last the whole day). So everything is relatively 'normal' (sorry I keep using that word) in their lives. How sad is that - I'm pulling my hair out at the monotony of our lives over the last 2 years, and they see it as the norm.

I've had more time to think with Michael being at home. I've also been loading all our photos on the computer, and reminiscing at the same time. When I think back to Aaron's Bar Mitzvah in March 2009, that was most probably the last time Michael was in fairly decent health. He was training hard then for his New York bike ride in the June of that year, and what an achievement that was, but then it was all downhill (ha ha!). We both knew something was up fairly early on in the year, but it was the usual treatment of steriods, etc before there was a clear picture of the problem - things weren't right - his Consultant was being pretty useless and we were waiting for a referral to UCH. I think we eventually saw UCH after the summer holidays and they tried a new drug (by way of infusion) but the damage was already done (Crohn's had attacked again and the intestine was blocked). And that's what led us to the first op in February 2009, to where we are now. So now I've just depressed myself thinking that it's nearly 3 years of illness............

Onwards and upwards - I'm not depressed really. I do have moments but now's not one of them. Perhaps I can see the positives - Michael's spending a lot more time on his computer; is addicted to twitter and is constantly attached to his blackberry (had to tell him last week to leave the stupid phone downstairs at bed time!). So I guess things are improving.

Night xx