Update

My kidney function was a bit better on Monday (for medics Creatinine down to 140 from 163) but it is not quite normal yet. Newcastle want to wait for results of my anti rejection levels before making any more decisions, but it is likely they will just be rechecked when I am at transplant clinic in 2 weeks time. In the meantime I am trying to keep up the fluid intake. I am still not feeling too well though and it is all rather non specific - tiredness, achey muscles and the ocassional border line temperature. I just have no 'get up and go' and am really struggling with things like walking the dog, cooking dinner etc. I am not sure if this is still post op recovery or whether the antibiotics I am on might be making me feel off colour - I couldn't take this antibiotic pre transplant as it made me very sick, but I am taking it with anti sickness tablets this time - so it wouldn't surprise me if that's part of the problem. Otherwise though my chest is a lot clearer and there was nothing nasty growing in the sputum sample. The tablets I started for my sinus pain are also quite sedative which might be adding to the whole tiredness issue. So many things going on that it becomes hard to separate the problems out.

I also had fracture clinic this morning. I am going to get an MRI of my foot so we can see for sure whether it was fractured. If this is a non healing fracture I may need a cast for a prolonged period, so keep your fingers crossed it is something as simple as the way I walk (which is entirely possible!)

I must admit I am feeling quite down and fed up this week. I am so desperate to go back to how I felt only a few weeks ago. This tiredness and general feeling of being unwell takes me right back to how I always felt pre transplant and it's somewhere I do not enjoy revisiting. Not surprisingly I am very anxious as well, because I am sitting here worrying that this is rejection, or some strange infection and my mind races away. Not to mention the fact I have a plan to return to work on 16th Feb, so have this artificial date in my head by which time I want to be fully fit again. I know I just have to take it a day at a time and take the rough with the smooth....but I want some smooth again. I just want to be normal. I have spoken with Newcastle today and they want me to see how things are by the end of this week. I am due down there in 2 weeks anyway but if there are any ongoing worries I can always go down sooner. Hopefully it will all just settle down and I will be bouncing around again soon :-)

Getting there slowly!

I've had a quiet week spent trying to take it easy and recover. My chest does seem a lot better (cough more or less gone) but I then developed a mild temperature for some reason...possibly just fighting off some viral infection, as there are plenty around. I had my routine bloods done on Thursday and on Friday the GP phoned to tell me my kidney function had gone off. Just what I needed to hear on a Friday evening! I am 99% sure this is due to dehydration, and strangely I was sitting discussing the fact I thought I was dehydrated with my friend when the GP phoned! It has been difficult to keep up my usual fluid intake since the operation because I can only take small sips, instead of downing a glass of juice which I would normally do. The GP did not seem convinced by my explanation and asked me to phone Newcastle. I managed to speak with the on call transplant doc who did agree that this could be the cause and was happy with the plan of drinking plenty over the weekend and rechecking bloods on Monday. So fingers crossed they come back normal this time! Otherwise I have been feeling a bit better since Friday, other than being more tired than normal. I think I am allowed that much though :-)

I have done some painting this week and even managed some baking - a banana loaf, which I managed to chew long enough to consider it 'soft food'! I am still struggling a bit with the eating and although they told me softer foods such as mince and fish would be ok I am still finding that they often get stuck, which is quite painful. It is only 2 weeks since the operation though so plenty time for things to settle down. I just have to be careful I don't lose too much weight! The scars are not too sore now, other than one which gets sore when I walk (like a stitch pain) but again, I am sure this will settle with time. They are looking really good and will be hardly noticeable when fully healed.

Now we are into the New Year, I am trying to get my plans for 'Team Jac' a bit more organised and confirming who is taking part so I can organsise transport and Team Jac hats!! I think we will definately have over a 100 people walking, which is amazing. The sponsorship is coming along brilliantly and as you can see from the Just Giving icon at the side, we are over the £2,500 mark now! The sky's the limit...

It Never Rains but it Pours!

I haven't had the best week to be honest. Although the pain is now much better I have managed to develop a post op chest infection. Probably not surprising considering I couldn't really cough properly and wasn't moving about much for a week. I went to see my CF consultant about this yesterday and found my lung function had dropped to 1.3 L from 1.8L (97% to 80%) and there were a few chest crackles to be heard (although chest x-ray looked fine). Although this does not sound a big drop, a 10% drop is considered significant, therefore I have been started on a 2 week course of oral antibiotics, so hopefully within a few days I will see the benefit of that. I don't feel too bad though, just very tired and washed out and not quite right. This is nothing compared to how I used to feel with a chest infection though so I can't really complain. They have taken some samples to see what bugs are growing but at the moment have to assume it might be the old bugs I had before - they are using a fairly broad spectrum drug so should have all bases covered!

Today I had another minor drama when the sore throat I've had since the operation became much worse. When I had a look myself I had this weird blood encrusted lesion which totally freaked me out. Sometimes people must wonder if I really am a doctor because since this transplant I feel like I over react at everything. I then decided it could possibly be herpes (even though this should present as blisters) and took myself off to the doctor to get checked out. She was fairly sure it was in fact trauma from the intubation last week and even if there was some superimposed infection I was already on antibiotics so should be covered. Eh, drama over then :-) Since this morning I have now developed a runny nose. Of course I have self diagnosed 'flu even though I have no other symptoms ;-) Seriously though, keep your fingers crossed it's just some self limiting virus and I can get back to normal asap.

I had my foot ultrasound yesterday and there was no evidence of anything worrying (they were looking for something called a neuroma but they could not see one) so this is good news. My foot has been fine for the last week but I haven't walked further than the next room so very hard to assess haha. Hopefully I will be walking about again soon and will get a better idea before I am seen at clinic in a couple of weeks.

From the operation point of view, everything is going well. The scars are healing nicely and are no where near as sore. I am sleeping better and gradually being able to eat more. I couldn't eat at all for the first 4 days so have lost about 3kilos but the dietician has promptly restarted my high calories supplements so I should get that back on in no time. I still have to eat a soft diet so am experimenting as best I can. I find that chocolate buttons can be nicely melted in the mouth first and serve as a handy snack :-) My appetite has somewhat waned with the infection and sore throat but I'm sure when it kicks back in I will be trying to find 'soft' things to bake!!

It is very strange not being on top form. It is a unwelcome reality check to the fact I do not actually have superhuman powers. I think I seriously thought I had secret superhero skills which where give to be during the transplant. I felt invincible. Now I feel vulnerable and a bit shaken by my first infection since the transplant. I know it comes to us all and in fact post transplant I am technically more vulnerable to infection.....but it wasn't really the way I wanted to start the new year. However I think I might just start my new year from February, since I have never been that keen on January any way. In fact I may have asked the doctor to sign me back to work for mid February....I must be mad ;-)

Back Home

The operation went well and I am now back at my mum and dads for a few days rest and recuperation.

I had the surgery on Friday morning and because I am diabetic I was first on the list, which was even better. I also managed to get my own room by emphasising the need for post transplant patients to avoid cross infection. This is true but I never get my own room in Freemans unless they are treating for rejection ;-) If you don't ask, you don't get!

They managed to do keyhole surgery (thank goodness!) and also repair the peg tube site. The peg tube site is basically a hole going from the skin through to the stomach. It should have closed up by itself but because I had it so long it had formed a permanent fistula (hole) which kept leaking. I though they would just pop some stitches in but they actually have to cut out the fistula so he said this would be sorer than the rest of the operation! It was quite sore I must admit but they set up a PCA (basically a morphine pump where I get to press the button and release a small dose when needed) so meant I could control the pain ok. The wounds themselves were not that sore but I had quite a lot of chest pain - they said this was probably because there were some stitches in my diaphragm. It just freaked me out a bit having chest pain again! I was also quite breathless when I woke after then anaesthetic and it was like having flash backs from waking up after my transplant, which was rather unsettling. The anaesthetist was fantastic though and very reassuring. He gave me some nebulised drugs and high flow oxygen for the first 24 hours and I was fine :-) Initially they were going to take me to HDU because I was a post transplant patient but since I was doing so well they just kept me in recovery for longer than normal then sent me back to the ward. It was actually very strange waking up from an operation without chest problems - all my prior surgeries (apart from transplant) have ended up with me getting a bad chest infection and being quite unwell afterwards. But this time my chest was fine :-) I must admit it is getting a bit crackly now because I can't cough properly with the pain so I have to do some deep breathing and huffing to keep things moving. It's weird even having to do that much!

I was pretty much out of it on Friday but did manage to start taking some fluids. I had a glucose/insulin drip in for my diabetes though so at least I didn't have to worry about controlling my sugars. However the venflon packed in that night and there was a bit fuss about getting another one in - after 10 attempts by two different doctors, they gave up! This was between 1-2am so I was not overly amused ;-) The nurses were then paranoid my sugars were going to go low and kept checking them every hour overnight. Needless to say they were fine!

They kept the PCA going on Saturday because of the chest pain and also sent a physio to see me. Andrew also came down at the weekend, which was great but had to head back on Sunday for work.

I tried to eat something on Saturday but was finding it really hard to swallow - it was just soup, but when it went down I was getting this pain as if something had got stuck and then the pain extended over my whole chest - not pleasant. So I gave up trying to eat. This continued over Sunday and Monday so they sent me for a barium swallow to make sure everything was ok with the wrap (the operation involves wrapping a small part of the stomach around the bottom of gullet to make the sphincter tighter and stop acid going up). Fortunately the wrap was in the right place and the liquid could be seen going into the stomach. He said it did look too tight however but that this was common a few days post op and was likely due to swelling. The swelling will gradually go down over the next 4-6 weeks but I have to stay on a sloppy diet for the next 6 weeks.. Yuk! I will see them again for review in 4 weeks when I am back for transplant clinic anyway. I did manage to eat some porridge this morning so hopefully things will start to improve now. I am finding it hard to swallow my tablets as well but that should ease off soon.

Pain wise things are not too bad and I am just resting up and trying not to move around too much. He said it will take a couple of weeks to be comfortable again but that's not too long. It's a bit hard to sleep at the moment as I can only lie on my back however that new tablet I started for sinus pain is a bit sedative so seems to be helping. Good timing!

Seb was pleased to see me and I got some little tail wags and he has been following me around since. However he is now in the huff with me because he can't understand why I won't let him jump on my knee! So he away into his basket to sulk.

So all in all, everything seems to have gone well and now it's just a case of some recovery time and hoping I can start to eat a bit more over the coming weeks. It won't be long until I am back to running around like a mad woman again :-)

Shelley just wanted me to pass on her thanks for all your kind thoughts and comments....the support is really helpful at times like this!

Back to Reality

Last week was busy busy, so had no time to post again! New Years day was lovely and Anne and John stayed with us for further celebration. We were a bit too tired for more sing star though....maybe not a bad thing ;-) The 2nd January is a big family gathering at my Uncles and was also a great day. I wasn't well enough to go last year so it was great being able to join in this year, especially with all the games! On Saturday we went into to Edinburgh to have lunch with my friends Claire and Giuseppe and had a lovely afternoon.....then of course I found out we were minutes away from a shopping centre so we had to make a wee detour. Christmas money is now spent :-)

We then headed back home on Sunday with a large proportion of the day spent packing up the car, then unpacking at the other end. It is always strange coming home to the Christmas tree, another pile of cards behind the door and all the decorations. We had one last night of Christmas tree lights before taking everything down on Monday - Seb is pleased because he can now see out the living room window again haha.

I also had a pile of appointment letters sitting - ultrasound for foot next Friday, appointment for surgery this week and an appointment at pain clinic yesterday (just as well we were back home or I might have missed that!) The appointment was in the city centre so Andrew had to come with me as there is no parking - bit awkward really. Anyway the consultant was very nice and listened to the whole story about my facial (?sinus) pain. I explained that this is by no means new - I have had sinus pain on and off since childhood, having my first operation when I was seven. Surgery would relieve the pain for a year or two, then it would just come back again. This time however there is no more surgery I can have. I managed before with a combination of paracetamol and ibuprofen, however I am not allowed to take ibuprofen post transplant (it affects kidneys) so am struggling to find something effective. The consultant did agree that this sounded very much like sinus pain (and not a facial pain syndrome which the ENT was querying). However he said that since there is not more ENT treatment to be done, then the main issue is now pain management. He is going to try me on a drug called Dosulepin which is similar to something I was on post transplant. It is traditionally an antidepressant drug but also used for chronic pain (don't worry, I am not depressed!) He did however emphasise that he is taking a rather pessimistic view of how much he can help, mainly due to the fact the pain has been going on so long. He cannot get rid of the pain (although I never expected this outcome anyway) but will try at least to find something to help a bit. Also because of the chronicity of the pain, he would not expect this to work quickly and will see me in 3 months time...and even at that point he is not sure that is a long enough trial. I am at least glad we are trying something new and keeping everything crossed that I see some improvement, no matter how small.

I am heading back to mum and dads tonight as mum is taking me down to Newcastle tomorrow for my hospital admission. The surgery is on Friday but I have to come in the day before. Please keep the prayers going that this will be done via keyhole surgery so that I am back in home in a few days. I probably won't be able to use my laptop (it's a different hospital I am going to) so may not be able to update until I am back home. I am a bit nervous to be honest. I wasn't nervous before my transplant because I had nothing to lose.....but now I am so well I don't want anything to rock the boat..

Lastly, I have heard some very bad news from my friend Shelley (who had her transplant the month before me). She has been unwell recently and has just found out she has chronic rejection. This is when the new lungs become scarred (the process is not well understood) and lung function starts to drop again - her lung function has dropped from 4L to 1L in a very short space. There is no cure but some options to try and slow the process so they are starting some treatment at the moment. Keep her in your thoughts and prayers - she is staying very positive and fighting this hard!