Improving

Thanks for the love on the last few blogs.  It has been a worrying time not only for me but I know my parents have been worried as well as A (even though he won’t admit it!)

After 3 visits to hospital in the space of 5 days my blood results look like they are improving albeit slowly, but things are going in the right direction with no need to biopsy my Mum’s kidney bean!

I have to say as always the care during my admission and close observation since my discharge has been fantastic as always.  I am so very lucky and certainly do not take the NHS or its staff for granted.

I have to return in 2 weeks for blood tests and then in a further 2 weeks for blood tests and an appointment with my consultant.  This week is half term, I am coming to the end of my antibiotics and although I am not feeling totally back to myself I am certainly on my way.  I am using the rest of this week to chill and recover fully so I am ready to get stuck back into work on Monday!

I have lots of other things keeping me busy at the minute A and I are continuing our work as committee members for the fantastic charity Harry and Co (which supported A when his daughter was stillborn in 2012.)  I have also just started doing Avon to fill the time when I am not at work and earn a few extra pennies that will come in handy with planning the wedding.

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Happy 1 Year 

On the 17th Mum and I celebrated being a whole year post transplant!  It seems to have gone so fast.  Although things aren’t fantastic right now, they are 100% better than being attached to a machine to keep me alive! 

Who would have thought I would be back at work, A and I would be planning our wedding and we would have had a holiday abroad! 

A helped me do a little tea party for the family as I am still not feeling fantastic and my friend from work made the amazing cake. 

As for my Mum, my hero.  Thank you will never be enough and I will be forever grateful. 

Us a couple of days after transplant.

Meeting the PM 

When I was an inpatient I was asked to meet a special visitor who was coming to the hospital, Mum was asked too and we weren’t allowed to know who it was. 

We guessed that it was probably Jeremy Hunt and we were half right.  Jeremy was accompanied by the Prime Minister herself. We found this out 10 minutes before meeting them.

We were briefed that all political views should be kept aside and this was purely a conversation about Organ Donation and Transplants.  The PM wanted to hear personal stories on how transplants change lives, this is due to the proposed change in the law for Organ Donation to Opt Out which presumes you would like to donate your organs after death and if you don’t believe that you will have to opt out. 

There are many factors that needs to be taken into consideration if this is to be a success. Such as resources and staffing being in place. Also your next of kin will still give final consent so you still need to share your wishes on Organ Donation as they can still refuse on your behalf.  If this gets people talking about Organ Donation in the meantime then it can only be a good thing. 

It was an interesting meeting, they looked interested in what we had to say.   

Here is a little article about the visit: http://www.warringtonguardian.co.uk/news/15599621.Kidney_transplant_patient_meets_Prime_Minister_during_hospital_stay/

Infection blues…

So we all finally had our long awaited holiday abroad to Crete.  You may remember last year it had to be cancelled as I was so poorly and they didn’t want me to dialyze abroad and catch an infection which would put the pending transplant at risk!

We had a lovely holiday, however it was tainted by the fact I was a usual drama queen and ended up needing to see the hotel doctor and a trip to hospital.  I thankfully was only in one day. A blast of IV antibiotics, 2 lots of painkillers, some fluid, a scan and a course of oral antibiotics later I was allowed on my way.  I can’t fault my treatment, however it is super scary being in a foreign hospital where only a few of the doctors speak English.

Their diagnosis was a cyst on my old transplanted kidney, funny that as when I returned both my kidneys and ovaries were clear of cysts. My pain eventually went and I returned to work after my holiday (I skipped that big news, I have gone back to work just part time and I am loving it.)

The pain was still niggling me a week later and when I started getting a temperature and not feeling myself I knew that something wasn’t right.  Sepsis was mentioned along with the return of the CMV, I was kept in hospital for 5 days and the final diagnosis was nephritis in my old transplanted kidney.  The pain has thankfully gone, it was horrendous, I have never had pain like it.

But what has happened now is that because of the infection my new transplant has taken quite a bit of a hit and lost quite a bit of function.  Safe to say it is a worrying time (I haven’t really slept properly which isn’t helping the fact I don’t feel I am back to myself after the infection yet).  The consultant isn’t worried yet but is in his words “slightly concerned”.

They are keeping a close eye on me, since discharge last Thursday I have been back 4 times and I am back a further 3 more times before next Wednesday.  A change in my tablets, lots of fluid and continuing with antibiotics will hopefully do the trick and I won’t need the biopsy of my new kidney that they keep mentioning.  The care I am receiving is second to none and I am in safe hands. I managed a bit more sleep last night now that we have a plan in place.

I am just disappointed I am off work so soon after returning! I was enjoying it so much.  Hopefully I will be right as rain in no time.

Sorry I haven’t blogged in a while and sorry it is not a happy one.  I promise the next one will be!

Update 

Just a quick update as I had ​clinic yesterday.  It went ok, they are continuing to keep a close eye on me as i’m still classed as having the CMV virus. A new drug regime means this is now my breakfast.

  Lots of upcoming appointments to attend, one at the eye clinic as CMV effects the eyes, one at the infection clinic to keep an eye on my chest and one at the transplant clinic to keep an eye on Mums kidney bean (which is doing amazingly well considering what it has had thrown at it!).  Very grateful as always to the teams looking after me!

I’ll do a proper blog soon as I’ve just realised I haven’t written anything about my birthday!  Will leave you with this pic of me before clinic yesterday modelling my new Cath Kidston dress and bag! 

After clinic we went onto Chester for a little walk round and a spot of lunch.  If you haven’t visited Hickory’s smokehouse… what are you waiting for! 


Not smooth sailing 

I’ve wanted to write a blog recently but I haven’t really known what to write.  I hope my ramblings that are about to follow make some sort of sense.

When you tell people you’ve had a transplant they think it’s a cure, everything is sorted and you can immediately do everything you could before.

I had a bit of a setback around February time with a bad UTI that knocked me for six.  But by the beginning of April I felt like things were back on track, I was enjoying days out and doing normal things that people take for granted.

Fast forward a few weeks and I began to feel unwell, I couldn’t really describe how I was feeling which was frustrating but I knew that something was wrong.  I stupidly (and have maybe learnt my lesson) waited 4 days before going to A and E.  I felt ridiculous saying I know somethings wrong, I feel weak and wobbly but have no other symptoms.  Safe to say A and E took me seriously and I was looked after extremely well.  Every test they did was clear apart from my white cell count which suggested infection but they weren’t sure where.  I had ecgs, bloods, chest x Ray, a cannula put in and some generic antibiotics that would hopefully cover the infection wherever it was.

I was in good spirits and thought that a couple of doses of IV antibiotics and I would be fine, I had packed and overnight bag with enough things for one night (I thought that was me being prepared).

To cut a very long story short.  From that night I spent 19 more days in hospital, all of these stuck in a single room with my own toilet.  I was in a negative pressure room and wasn’t allowed to leave  (not even for a walk along the ward), this drove me insane towards the end of the stay!  From the point in A and E to me leaving hospital on Thursday evening I was ill. Seriously ill. It was the hardest admission I have ever had (even that of after transplant).

A CT scan discovered that my lungs were, in the doctors words, a mess.  They were full of bacteria and this explained why I was struggling to breathe.  I was placed on normal oxygen, humidifier oxygen and high flow oxygen but nothing seemed to be helping and I was obviously panicking that even with all that help I couldn’t catch my breath.   All the teams involved in my care, the intensive care team, doctors, physios, nurses, infectious diseases were all amazing but according to my Mum (as I don’t remember) they were all pretty worried about me.  I remember a ventilator being mentioned and telling A that I didn’t want that because I would be worried that I wouldn’t wake up again.  In my head I still don’t think I realised how ill I was, and that I might not actually have much choice in the matter!

The diagnosis… CMV which is explained a bit more here.  This caused Pneumonitis and all the bacteria in my lungs.

So that is where we are at.   I almost feel I’m back to square one but I know I shouldn’t be frustrated.  The doctors explained that it is a life threatening illness (which scared the crap out of me, I’m not going to lie.)  I’ve had 2 weeks worth of IV antivirals and I’m now on oral ones and probably will be for 3 months.  I’ve been warned that it will take me up to 6 weeks to recover, but I’m here to tell the tale that’s the main thing.

Since being home I’m finding daily tasks a struggle again so I’m taking it easy, also finding it hard to sleep as the nights since I’ve been home I’ve woke up in a sweat after dreaming about being in hospital and not being able to breathe (maybe it’s playing on my mind more than I thought).

I hope some of this blog makes sense.   I just wanted to get it all off my chest, and reiterate that transplant isn’t a cure, it’s another set of potential issues. Also wanted to say thanks to the medical teams that were involved in my care and thank them for saving me! It puts everything into perspective, we’ve had to cancel another holiday (to Center Parcs to celebrate my 30th!) but I’m here, I’m on the mend and I managed to escape before my birthday!

Will leave you with a few pictures from my hospital stay! (And good old snap chat covering up how ill I was feeling).

Long time no blog! 

I’ve neglected this blog a bit but im determined to keep my foot back in the writing water… it keeps my brain active and keeps me out of trouble (most of the time!). 

The past few weeks have been a bit up and down.  I didn’t write much on Facebook as I didn’t really want to admit to myself or Mum that I was actually worried. 

A few weeks back I had a really bad water infection and was put on two lots of antibiotics.  My kidney function took a hit and it didn’t really recover (it still hasn’t really).  It took a lot out of me and this shocked me.  Before this I was down to monthly visits at the hospital but now I am back between 1 and 2 weekly visits so they can keep a close eye on me. 

They are constantly tweaking my medication to make sure they have sufficient immunosuppression to keep the kidney from rejecting but not too much that it damages the kidney.  My sodium is low and calcium is high  (which may explain why my joints have been giving me grief – they have been painful and stiff). 

I’m writing this because people often think transplant is a cure but it really isn’t, it’s another form of treatment for kidney failure and things aren’t always smooth sailing.  Things can change in a heartbeat. 

I had a scan yestersay of Mum’s little kidney bean and they were confident everything looked well, blood profusion was normal and my veins and arteries are working well.  Ironically I got to meet kidney bean on World Kidney Day! (9.3.17) I will blog about this tomorrow!

They are confident that with my recent changes in medication lots of drinking (water not alcohol unfortunately) will help. 

Being dialysis free is amazing  (thanks to Mum) but the worrying doesn’t just automatically stop, recovery is a long process and the past few weeks we have shown this.