Wednesday, 26 February 2014

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Back Home At Last

So, it’s been three weeks, now! I was discharged from hospital, after 150 days, on January 31st.
A lot has happened in the last three weeks, and it’s gone by really quickly. It’s been a struggle so far, getting all of the things that I need at home set up, and we are still working on it. Despite all of this, I have still loved being back home in North Devon. It’s nice to be back by the sea, breathing in the fresh sea air instead of the city fumes! I also like being closer to friends, and hopefully I can visit some of my friends soon. It feels really strange being back at home after so long.

My rehab physio has been much reduced since being back, due to lack of time, facilities and provisions, but we are hoping that we can get this back on track soon. I need to get this going again to help me build up my strength and get more of the things in my life back to normal. I really want to be able to do more things that I enjoy doing, such as trampolining, swimming and even drawing, as at the moment it is very difficult to draw or write because my hands shake too much. However, I think this will get better as I get stronger.

My stomach and abdomen had become more and more uncomfortable, up until just over a week ago, and I was feeling more and more nauseous and getting heartburn a lot. A lot of different things could have caused this. I am on a number of medicines that can cause these problems. Another thing that we think may have been causing these problems is the fact that I have had a naso-gastric tube for feeding for six months. For the past three months I have had a continuous feed overnight, and we have been wondering if my body has become more intolerant to this as time has gone by. I had not managed to put the amount of weight on that I had hoped I would with the NG feeding, and I have felt too full most of the day to eat much. Last Thursday, I was sick a lot, and this caused my NG tube to come up. I had another one put down, but before I did, I ate something (a choc-au-pain), and I noticed that I didn't have the heartburn feeling and I didn’t feel sick. The following morning, just after my continuous overnight feed was stopped, I was sick again, and my NG-tube came out again. We were stopping in a Premier Inn near Bristol (I love Premier Inn!), because we had a follow up appointment with the CF Consultant in Bristol. I had breakfast in the Premier Inn, and managed to eat quite a lot without feeling sick, like I normally do, and no heartburn again. We’ve decided to keep my NG-tube out for a while, and see how I get on with just eating whole food for a short while. I have still been feeling quite full quickly, which makes me feel sick, and I’ve still been sick a few times, but I have definitely been able to eat more overall. The pains in my stomach have mostly stopped, and I haven’t had any heartburn. I am trying to eat smaller amounts, but more frequently. We have been counting calories every day trying to make sure I get in as many as possible. It’s a bit stressful, really!

After my first week back home, we got a saline air purifier, called a Salin Plus ( It might be a coincidence, but the first night that we used it was the first night in months that I slept right through, without waking up coughing and needing a hypertonic saline nebuliser in the middle of the night. I have slept through every night since, so we are continuing to use it. We even took it away to the Premier Inn with us.
Being on oxygen is a nuisance, and Mom and Dad have been having lots of frustrating conversations with the company that supplies my home oxygen cylinders. Hopefully that will get sorted better soon, though.

Last week I visited both of my local shared care hospitals, and stopped for a couple of nights in my main hospital. On the second night I had to have an additional nasal cannula in, which was linked to a machine which measured the amount of carbon dioxide I was exhaling, but the results were inconclusive, so I will have to have a similar study done with more reliable testing equipment and methods. The reason for this study is to find out exactly how much oxygen I need. Once this is established properly, hopefully I can start weaning it down gradually again, and ultimately, eventually get off oxygen.

Yesterday I had my first rehab physio session since I was discharged from Bristol! I used the exercise bike and did some leg extensions. I think I did quite well, considering I haven't done much rehab since leaving Bristol. I also wrote down an exercise plan for me to do every day at home.

Harriet xxx
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