Hope you had a lovely Easter, the weather was amazing and I don't about you but we spent most of the time in parks having picnics which was lovely - just a bit knackering though.
My stomach has been a little up and down of late. I guess that is to be expected but i feel like I am now holding on a bit waiting for surgery times. I am certainly getting more exhausted as the day goes on and am very grateful that I break up my day with a sleep in the middle of it.
My d-day is coming up in a months time and I guess after that we will know if we can plan more properly. at the moment I try and fill my day with a bit of study and general bits and pieces, it feels a little like I am wasting time but I don't really have the energy to do much more.
Two of the big things that I can't wait to get rid of are my feeds and also doing the injections three times a day. It is just ingrained in my life right now but I cannot wait for that to end. The amount of times that I have got up in the middle of the night and gone to walk to the loo and then tugged at my feed line as I have forgotten that I am connected. Oh the joy of walking to the loo unaided!!
This week should be fairly quite on the home front so forgive me if the blogs are a bit lax but I really don't want to bore you.
Take care
xx
Tuesday, 26 April 2011
Friday, 22 April 2011
22nd April @09.57am
Sorry that it has been a while since my last post. I just thought that you might be bored as there was not much to say.
Yesterday I spent some time chatting to the last person that had a small bowel transplant at Oxford. He had his surgery back in November and is a year younger than me with a young family. Anyhow without boring you to death with details he said straight away that not a day goes by without him thinking that it is definitely all worthwhile. he can now eat and he has just started to exercise. he said that each day is a challenge and he now understands why they say you need a year. A few days ago he did a big yawn and popped open a bit of his wound. Basically they reckon it needs many months to heal and he was telling me this so as to make me aware of very simple things that can happen. He is doing really well at the moment. he has been back to hospital for a few short stays but nothing serious at all. he said that the medication is pretty strong stuff and that I should accept the fact that there will be major side effects, hey that i can cope with.
What was interesting was that he had exactly the same feelings as me. One minute its euphoria at having something change my life and the next minute you are scared stiff at the thought of such major surgery. He was also waiting at hospital for almost 12 hours before the surgery happened whilst they tested the organ for final compatibility. They have warned me about this and I guess that this can be one of the hardest things to go through the waiting.
Anyhow he gave a lot of reasons to be positive. He said that it would be the hardest challenge of my life and that everyday something new crops up. I guess again it makes me excited and scared all at the same time.
On top of my studies I have decided to have a go at writing a book for fellow Crohn's sufferers about what life is like living with a chronic illness. I will start it and see what happens. If it can help one other person then i will be doing good.
That's about all for now. Will be back on line soon. If you have any posts that you want to send me then I would be delighted to chat. Also if you know of anywhere else that i can post my blog to raise awareness then please please shout back.
Take care
x
Yesterday I spent some time chatting to the last person that had a small bowel transplant at Oxford. He had his surgery back in November and is a year younger than me with a young family. Anyhow without boring you to death with details he said straight away that not a day goes by without him thinking that it is definitely all worthwhile. he can now eat and he has just started to exercise. he said that each day is a challenge and he now understands why they say you need a year. A few days ago he did a big yawn and popped open a bit of his wound. Basically they reckon it needs many months to heal and he was telling me this so as to make me aware of very simple things that can happen. He is doing really well at the moment. he has been back to hospital for a few short stays but nothing serious at all. he said that the medication is pretty strong stuff and that I should accept the fact that there will be major side effects, hey that i can cope with.
What was interesting was that he had exactly the same feelings as me. One minute its euphoria at having something change my life and the next minute you are scared stiff at the thought of such major surgery. He was also waiting at hospital for almost 12 hours before the surgery happened whilst they tested the organ for final compatibility. They have warned me about this and I guess that this can be one of the hardest things to go through the waiting.
Anyhow he gave a lot of reasons to be positive. He said that it would be the hardest challenge of my life and that everyday something new crops up. I guess again it makes me excited and scared all at the same time.
On top of my studies I have decided to have a go at writing a book for fellow Crohn's sufferers about what life is like living with a chronic illness. I will start it and see what happens. If it can help one other person then i will be doing good.
That's about all for now. Will be back on line soon. If you have any posts that you want to send me then I would be delighted to chat. Also if you know of anywhere else that i can post my blog to raise awareness then please please shout back.
Take care
x
Thursday, 14 April 2011
14th April @4.43pm
Its so flipping frustrating being ill. You want to do so much and your body will only let you do half of what you planned to do. Then everyone is so kind telling me to rest when all I really want to help out. You know stupid things like picking up and giving lifts. All mundane stuff that I am happy to do but can't do all the time. Then there is the late night party routine. We get asked to do the 11.30pm slot when I can't go out at that time and its left to my wife to do which is so unfair. I really wouldn't want another mum to have to pick up late at night but people don't always realise.
I know this is all a bit garbled but I guess its just frustration creeping out so sorry for the rant!! I had my last visit to Oxford this week for a cardiology check up. It all went fine. All pretty routine in fact so hopefully now I have passed all the tests that they wanted me to do. D-day is now 25th May when we will formally hear if I have been accepted on to the transplant programme. That date seems ages away but I know it will come round quickly. You never realise how much you have to go through just to prove that you are fit enough to go through one of the most difficult surgeries on the transplant circuit. At the moment I am scheduled to have a multi visceral transplant meaning the stomach, pancreas and small bowel. There is though a little bit of confusion and it might just be small bowel. I am not bothered either way as the small bowel is apparently the difficult bit and the other two organs are more routine.
Anyway I promise to try not to rant to much more in the future. Thanks for all your comments that come firing back at me. I really appreciate them.
Take care
x
I know this is all a bit garbled but I guess its just frustration creeping out so sorry for the rant!! I had my last visit to Oxford this week for a cardiology check up. It all went fine. All pretty routine in fact so hopefully now I have passed all the tests that they wanted me to do. D-day is now 25th May when we will formally hear if I have been accepted on to the transplant programme. That date seems ages away but I know it will come round quickly. You never realise how much you have to go through just to prove that you are fit enough to go through one of the most difficult surgeries on the transplant circuit. At the moment I am scheduled to have a multi visceral transplant meaning the stomach, pancreas and small bowel. There is though a little bit of confusion and it might just be small bowel. I am not bothered either way as the small bowel is apparently the difficult bit and the other two organs are more routine.
Anyway I promise to try not to rant to much more in the future. Thanks for all your comments that come firing back at me. I really appreciate them.
Take care
x
Friday, 8 April 2011
8th April @10.53am
Sorry that it has been a few days since I have been in touch its just been a very busy week.
On Wednesday I went back to UCH for a check up. I waited an hour and forty minutes for my appointment which is absolutely disgraceful. I can never understand why they cannot get the appointment system sorted. How hard can it be?? anyhow the check up went fine. At the moment I have a problem whereby I am losing my body hair and also my nails are falling off. They think that it could be a vitamin deficiency but it will take up to 6 weeks before the results can come through. So at the moment I have bald legs and back and rapid hair loss just about every else except my head. Bizarre I know but I suspect that the head may be next - oh well never mind.
On Thursday we went back to Oxford for my psychiatric evaluation. Thankfully they said that I do have a brain and that there is no risk of problems post op. Obviously they look for things such as post op depression which they say is natural but so far I have been ok so there is no reason to think that I wont be on this occasion.
As well as that appointment I was given a tour of Intensive Care. That is where I will go post op and may well be kept sedated for a day or two after the surgery. They explained that I will have a breathing tube inserted down my throat but that the tube will come out as soon as I am awake properly. We also saw all the machines that I will be hooked up to - a bit scary for us both but its far better to know what we will be facing rather than any surprises.
Next week sees me having various jabs and also meeting the cardiologist. It never stops!!
Hope you all have great weekends and I will be in touch again soon.
Take care
x
On Wednesday I went back to UCH for a check up. I waited an hour and forty minutes for my appointment which is absolutely disgraceful. I can never understand why they cannot get the appointment system sorted. How hard can it be?? anyhow the check up went fine. At the moment I have a problem whereby I am losing my body hair and also my nails are falling off. They think that it could be a vitamin deficiency but it will take up to 6 weeks before the results can come through. So at the moment I have bald legs and back and rapid hair loss just about every else except my head. Bizarre I know but I suspect that the head may be next - oh well never mind.
On Thursday we went back to Oxford for my psychiatric evaluation. Thankfully they said that I do have a brain and that there is no risk of problems post op. Obviously they look for things such as post op depression which they say is natural but so far I have been ok so there is no reason to think that I wont be on this occasion.
As well as that appointment I was given a tour of Intensive Care. That is where I will go post op and may well be kept sedated for a day or two after the surgery. They explained that I will have a breathing tube inserted down my throat but that the tube will come out as soon as I am awake properly. We also saw all the machines that I will be hooked up to - a bit scary for us both but its far better to know what we will be facing rather than any surprises.
Next week sees me having various jabs and also meeting the cardiologist. It never stops!!
Hope you all have great weekends and I will be in touch again soon.
Take care
x
Monday, 4 April 2011
4th April @ 11.16am
It's been a lovely weekend full of rest which I really needed after the previous two weeks. So having got the thumbs up from Oxford I feel that my transplant is one step closer. I will believe that its going to happen 100% when i get the call at the end of May. Until then its all a little on edge.
Over the last few weeks plenty of people of people have told me that they either know someone who has crohns or they have a relative that has been suffering. I just wanted to mention that if you know someone that might benefit from talking to a fellow sufferer then please give my details. I am more that happy to be a shoulder to cry on or even someone who can give a little bit of advice.
This week I am up to UCH for further check ups and am off to Oxford to see the psychiatrist so it will be pretty full on. I will keep you posted with how its all going.
Take care
x
Over the last few weeks plenty of people of people have told me that they either know someone who has crohns or they have a relative that has been suffering. I just wanted to mention that if you know someone that might benefit from talking to a fellow sufferer then please give my details. I am more that happy to be a shoulder to cry on or even someone who can give a little bit of advice.
This week I am up to UCH for further check ups and am off to Oxford to see the psychiatrist so it will be pretty full on. I will keep you posted with how its all going.
Take care
x
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