I'm back! Plus update on transition and my eating

Hello again, I'm back! Sorry for neglecting my blog for so long. Initially I didn't manage to update for a while due to being quite busy and then because a while had passed since my last post, updating just seemed too daunting :P Anyway, I'm back now and will try to blog more regularly :) I hope I've not lost all my followers in my absence. I can't go in to detail about everything that has happened in the last 5 months (I've not blogged properly since May) or you'd be here for ages, but I need to do some updating so future posts make sense. I'm going to try to do a small-ish update daily until I'm up to date enough to continue blogging as I used to.

I got a shock at the start of July when my consultant from Hosp B dropped a bombshell and told me that he'd decided not to transition his patients to Hosp A but instead to transition them to another hospital, Hosp Q. I was confused by this decision because Hosp Q don't even do small bowel transplants! But they're situated in the same city as Hosp B so the team there will continue to have input if their patients transition to Hosp Q. I didn't know what to do because I had a lot of faith in my Hosp B consultant and it seemed like he thought that a different hospital would be better for his patients. But after emailing my Hosp B with some questions, thinking a lot about it and attending some appts at Hosp A I decided to continue to transition to there, regardless of what other Hosp B patients would do in the future.

A few months ago Hosp A took over the organising of my 3 monthly blood tests. The transplant co-ordinator there, S, suggested my bloods were changed to 2 monthly but I insisted they stay 3 monthly because the results are all stable so I don't see any need for them to be more frequent.

On 27th May and 1st Sept I had my bloods done at Hosp H like I usually do, but this time the bloods letter was supplied by Hosp A rather than Hosp B. Both times my bloods went very smoothly as the best phlebotomist always does my bloods now, rather than less experienced phlebs trying and failing first and then having to call her in. They were done in the morning before I take my Tac (an antirejection drug) so the level of that could be checked without me having to delay or miss my Tac dose. The blood to check for my Tac level (the level of the immunosuppressant in my blood) and my CMV level (not entirely sure what that is, but Hosp A like to check it regularly) can't be processed at Hosp H so we have to post them to Hosp A. I used to post my Tac blood to Hosp B in a little cardboard box and that always worked fine. But we now have to post my Tac blood and CMV blood to Hosp A in a big-ish blue plastic box that is one use only. It's very troublesome to close and both times 2 phlebs attempted it and it was eventually closed by being banged on the floor very hard. Luckily the blood bottles weren't damaged! The second time we only put one bottle in the box rather than 2 (I don't think the bloods letter was clear) so that was sent to be processed for my CMV level and I had to have more blood taken on 29th Sept to check my Tac level. All results from the blood tests were normal :)

I have now completed my transition from Hosp B to Hosp A! All of my care is now under Hosp A and I won't be seen at Hosp B any more. I'm still not completely happy with everything at Hosp A but after lots of phone calls, emails and a couple of appts I'm now more comfortable with the team there and hopefully the rest of the little kinks will be ironed out in time. I'm much happier with the communication with the team there now. The teleconference never happened in the end because I spoke to the team at Hosp A and the team at Hosp B separately and because the teleconference had to be cancelled and rearranged for quite a few weeks later, by that time I was confident enough with the transition not to need it.

Hopefully things will be more straightforward now I'm just under Hosp A, as when I was under both Hosp A and Hosp B they got their wires crossed a lot and never knew who was organising what so they'd both request a full set of bloods at different times etc.

I used to get my Tac delivered through a homecare company while I was under Hosp B but now I'm under Hosp A I have to get it from my GP instead. Luckily my GP has no problems with that, so that should all work out fine. I was going to the GP surgery a couple of times each week to collect my medications as I was running out of them all at different times throughout the month. I've spoken to the dispensers there and I've been allowed to order all my medications at once, once a month now, so hopefully that'll get things in sync and mean I don't need to make as many trips there.

I wasn't able to see my dietician at my last couple of clinic appts, but I caught up with her when I was at Hosp A for another appt. I find her the easiest to talk to out of all the team at Hosp A and have already established a good relationship with her. She's happy to talk via email or face-to-face whenever I need her.

When I last updated in May I'd just been told I could stop having the high calorie puddings and since then my weight has continued to do well. When I stopped the high calorie puddings I think my weight was about 53/54kg which was a little bit above my target weight of 52kg (that my dietician at Hosp B set for me) so I was hoping it'd remain stable. To my amazement I actually managed to put on weight for the first time in my life without any artificial feeds or high calorie supplements! My weight got as high as 55.5kg which I was very happy with but I decided I didn't really want it to get any higher than that. My dietician said she'd like it to stay around 55kg. So rather than cutting any food out of my diet I began swapping some of the full fat milk I was drinking to semi skimmed milk and hoped that would enable me to maintain my weight. I'm now weighing myself fortnightly and when I last weighed myself on 6th Oct my weight was 55.1kg. Although I'm weighing myself fortnightly, my dietician only wants to know my weight monthly because I'm doing so well :)

The pump I used for enteral feeding has now been collected by the company who supplied it. When that went it was the first time in over 19 years (since I was 6 months old) that we'd not had a pump of some kind in the house :D

I go through phases where I find eating very difficult, but at the moment things aren't too bad. I've had some mild nausea but it hasn't got in the way too much. I've been trying to be a bit more adventurous with trying new foods. I picked up a lovely vegetarian sushi selection in Sainsbury last week which I had for lunch instead of my usual sandwiches :) And just yesterday I had a vegetarian and chicken sushi selection from Tesco. I also discovered I like chicken stuffing sandwiches which was good for when we're out and about because nowhere sells my favourite marmite sandwiches ;) But then I realised that the chicken stuffing sandwiches are probably made with battery chicken so I stopped eating those. I'm not sure that avoiding battery meat when we're out is going to be a viable option for me though because I don't like many other sandwich fillings. Using battery chicken also spoiled a nice family meal out to an Indian restaurant a couple of months ago because they didn't have any options with free range chicken, so me and mum went veggie for the night. At the end of the meal we tried to complain to the staff but explaining the difference between free range chicken and battery chicken to someone who doesn't speak much English is quite a challenge, so my mum ended up pretending to be a chicken to try to get the message across, hehe :P