Sunday, June 29, 2008

Tired but doing ok!

I haven't blogged for a few days as I have been feeling quite tired and not quite right, so didn't want to alarm anyone. Thankfully I seem to be feeling better today so am feeling more positive again. It really just started when I got back from Newcastle and I was finding it harder to get up in the morning - the last few weeks before that I have been up and about at 7am, although in retrospect that was probably more abnormal! I also was finding it harder to walk Seb as my limbs just felt very achey and heavy and everything seemed like a bit of an effort. I have been worrying that this is a sign of more rejection, however I do feel better today and I have no other symptoms such as breathlessness or temperature. I suspect it was just a backlash from my busy weekend at the wedding followed by the trip to Newcastle. I keep forgetting that I am still only 9 weeks post surgery and have a lot of stamina still to build. I also keep forgetting that it is normal for people to feel tired sometimes, and was reassured when my friend told me that when she woke the other morning her first thought was about when she could get back into her bed that night, lol. So, my duracell bunny impression over the past few weeks was quite possibly steroid fuelled and as my steoirds have been gradually reduced, my body is just trying to readjust and get back to some degree of normality.

Despite feeling tired I have still managed to keep myself busy. I have however been trying to avoid shops as this inevitebly ends in spending again. Andrew had a dream the other night that he had a hole in his wallet and all his money kept falling out - I don't think you have to be an expert to work out where that came from! I have instead been doing more baking and cooking (see, i am saving money doing this!). So far this week I have made a rhubarb sponge, 2 rhubarb tarts (someone at Andrews work gave him rhubarb), 4 fruits loaves and am currently experimenting with a double mix of flapjacks. Funnily enough I seem to have put on about 2 kilos according to my own scales, so am nearly at my target weight. This might mean I have to cut down on the lattes and home baking *sigh* . Although to be fair, eating 8 flapjacks a day probably is excessive by anyone's standards ;-) I have also been trying different soups for my lunch and made butternut squash soup the other day, which was very nice. I have also been experimenting with dinners so Andrew is never quite sure what he is coming home to. It's a bit of a hit or a miss really, depending on what random herbs etc I have added. I think its the only way to learn though and at least I am trying. The only issue I really have is with safety - I probably shouldn't be allowed to use knives unsupervised. I currently have plasters on 3 different fingers due to cooking related 'incident's'. I think the term my mum likes to use is "hash bash". I need to learn to slow down...

The weekend has been quiet for me, as Andrew and my dad are building the greenhouse. In between the deluges of rain they are making good progress and we might even have time this year to grow some veg ( if we buy some plants already brought on). I'm looking forward to experimenting with that. Andrew has also been shovelling the slate chips so the rockery is nearly finished - I will post a photo of the final article at some point.

Seb is doing fine and still enjoying all his extra walks, although has come to expect them now. We had the interesting task of introducing him to another dog yesterday. Andrew was walking his friends dog while they were at a wedding, so we decided I would meet him on neutral territory with Seb to see how they got on. They have met twice before with little success - the first time I came home with Seb and the other dog, Alfie was in our house. Alfie barked his head off, and Seb was scared so ran behind my legs. He then moved into the hallway and would throw out a bark before quickly retreating backwards! The next time Seb was already in the house and Alfie came into the hallway - Seb went into territorial mode and after climbing on the stairs to gain some height, he barked and barked until Alfie had to leave. This time we got on much better on neutral ground. Seb was quite unsure at first but when we started walking together he did follow on ok, although Seb had to walk behind Alfie so that he could keep an eye on him at all times :-) He then tried his casual look where he just pretends he hasn't even noticed there is another dog. Everything was going really well until we got to our house and there was no way Seb was letting Alfie anywhere near the front door! Walking together was progress though, so would be worth trying again. I think it would be nice for Seb to have a doggie friend, even if he does consider himself to be human...

(p.s Just a message for Peter who left me a comment - sorry couldn't see an email/blog to reply to! I realise about the relationship between reflux and chronic rejection and am taking part in a study - measuring ph and relating to biopsy results. If I have significant reflux I will be offered a fundoplication surgery, so I will be interested to see my results from this. With regards the sinuses, I do daily saline washes - it does really help. I did offer up the theory that damage to my vagus nerve was causing the high heart rate, but the doctor thought this was unlikely. I still think its the most plausible explanation although I do also notice that tacrolimus can cause high heart rate and it may be this. Anyway just wanted to answer those queries - thanks for reading the blog and leaving a comment! :-)

11 comments:

Anonymous said...

Glad to hear you are feeling better.

You must try baking muffins, I made two lots last week, banana and choc chip and then decided to try marmalade and apricot. I am at clinic on the 16th and really need to put on some weight only problem is B doesn't need to put on any more weight *sigh* I'll just have to eat them all myself ;-)

Take care.
Jax xx

Anonymous said...
This comment has been removed by a blog administrator.
Anonymous said...

Hi, Jacqueline, WHEW! No wonder you are tired! I get tired just reading your blog! You have such a lot of adjusting to do so be patient and it will all settle down and balance itself out. See I should have been a doctor!! We will miss your blogs so much when we are away but look forward to reading them when we get back, it will be like a wee novel! Thanks for looking after gran by the way, I think she just loves seeing you so a broken pinkie is just the beginning! Well the football beckons. We will be in touch while we are away, Hope I get my voice back so that I can nag at John again!(what's a holiday if you can't nag!!) Take care and we will be in touch
lol Anne John and Ross xxxxxxxxxxxxx

Anonymous said...

I feel I must re-assure Andrew with his anxiety dreams.

My mum told me that your dreams mean the opposite.

Proof: Last week a colleague came in a bit shaken because she had a vivid dream that her friend died. An hour later that friend sent her a text saying she was pregnant. See! Dream of death - opposite happens. Birth!

So, Andrew is clearly about to come into money so now he can sleep easy as you spend away until the cheque arrives. Enjoy!!

Audrey xx

Anonymous said...

Great to read all the up-dates, your week-end wedding looked amazing as did you!! You are doing so well, how proud we are of you. I second Ann's comments, just reading all your last few days is making me feel exhausted!! Stay well and lol, big hugs from Rose and Kevin xxxx

Anonymous said...

Glad you're feeling better.Don't worry about being tired - some days all I think about is sleep! Keep up the baking and putting the weight on.X

Anonymous said...

Hi Jac,

I don't think I've commented before, but I've been reading your blog for a little while, since you got your transplant. I've got complex chronic lung disease (brittle asthma, bronchiectasis and post-ARDS interstitial fibrosis) and I'm also a junior doctor, although I haven't been able to work for a couple of years due to my health. I know what it's like to go through medical school with chronic lung disease, you have my admiration!

Just wanted to add regarding your tiredness, aching legs and so on - I am on long-term oral steroids and this sounds exactly how I feel when I reduce the dose. Going down to 15mg of pred seems to be the critical dose for me, but from talking to others it differs for everyone exactly when it happens. I just seem to lose my get-up-and-go for a few days and everything becomes more effort; I also get headaches, dizziness and nausea until my body gets used to the new dose. I also get aching legs as a result of steroid-induced proximal myopathy, but that tends to happen as a result of my steroid dose going up rather than coming down.

Regarding your fast heart rate, I have a persistent tachycardia, ranging from 100 - 120 bpm at rest, occasionally going up to 150 - 160 for no apparent reason. In my case it's partly due to bronchodilators (salbutamol nebs, theophylline etc) but also due to nerve damage, as you're guessing yours might be. I've got increased resting sympathetic tone due to autonomic neuropathy which I sustained during a prolonged ICU admission due to I had an asthma exacerbation and pneuomonia, sepsis and ARDS in Jan - March 2007. My neuropathy (I've got gastroparesis and peripheral neuropathy and neuropathic pain as well) occured due to a combination of medication, sepsis and renal failure, but my doctors said that they see it in a lot of people who have been in ICU for all sorts of reasons, including people who are post cardiothoracic surgery.

Just my experience, for what it's worth.

Really enjoy reading your blog, take care of yourself,
Em H

Emily H said...

Hi Jac,

I don't think I've commented before, but I've been reading your blog for a little while, since you got your transplant. I've got complex chronic lung disease (brittle asthma, bronchiectasis and post-ARDS interstitial fibrosis) and I'm also a junior doctor, although I haven't been able to work for a couple of years due to my health. I know what it's like to go through medical school with chronic lung disease, you have my admiration!

Just wanted to add regarding your tiredness, aching legs and so on - I am on long-term oral steroids and this sounds exactly how I feel when I reduce the dose. Going down to 15mg of pred seems to be the critical dose for me, but from talking to others it differs for everyone exactly when it happens. I just seem to lose my get-up-and-go for a few days and everything becomes more effort; I also get headaches, dizziness and nausea until my body gets used to the new dose. I also get aching legs as a result of steroid-induced proximal myopathy, but that tends to happen as a result of my steroid dose going up rather than coming down.

Regarding your fast heart rate, I have a persistent tachycardia, ranging from 100 - 120 bpm at rest, occasionally going up to 150 - 160 for no apparent reason. In my case it's partly due to bronchodilators (salbutamol nebs, theophylline etc) but also due to nerve damage, as you're guessing yours might be. I've got increased resting sympathetic tone due to autonomic neuropathy which I sustained during a prolonged ICU admission due to I had an asthma exacerbation and pneuomonia, sepsis and ARDS in Jan - March 2007. My neuropathy (I've got gastroparesis and peripheral neuropathy and neuropathic pain as well) occured due to a combination of medication, sepsis and renal failure, but my doctors said that they see it in a lot of people who have been in ICU for all sorts of reasons, including people who are post cardiothoracic surgery.

Just my experience, for what it's worth.

Really enjoy reading your blog, take care of yourself,
Em H

Emily H said...
This comment has been removed by the author.
Emily H said...

Sorry, I didn't mean to post that comment twice - I didn't put in my Blogger password first time around so I didn't think it would post.

Do feel free to delete the first one.

Em H

Anonymous said...

Boy I feel exhausted just reading your blog - and all that baking is making my mouth water- remember your flapjacks can alway s find a home in Bathgate - can't really comment on how good they are until I've tasted them (its worth a try ) Poor Andrew with the hole in the wallet dream - I'm sure Bobby has had that one many times !!!!Secret is to stop carrying a wallet and leave all the money handling to you - makes sense No !!! Anyways we are off to Crete on Tuesday - hope you continue to make god progress . Will text Mum to see all is well LYL Carol Ann & Bobby xx