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March 22 2015 1 22 /03 /March /2015 20:58
Ready for the Ball
Ready for the Ball

I have left it way too long to create an update.

As Kevin the kidney has reached his first official 1 year anniversary I thought this would be a great time to crack on with it.

My first Christmas with Chris and Jasmine with no dialysis was amazing, no watching what I was drinking or eating, no having to sit there feeling unwell and unable to play with Jasmine and her presents. We had Christmas day and boxing day at home and then we traveled to the In laws in Mablethorpe and spent the rest of Christmas and New year there with Chris' Family.

As we come into 2015 clinic appointments are staying at 6 week intervals which is fantastic and still going fortnightly for the Eculizumab infusion.

Just before Christmas I had been helping in school to see how I would be in a work environment but at the moment I am still not ready due to complications with my medication and so this is on the back burner again. I also resigned from my position on the patient congress due to the same problem.

I still manage some voluntary roles and am also studying from home which is helping to keep me mentally motivated even though I haven't the energy physically.

Over the past couple of months I have seen an ophthalmologist due to deterioration in my eyes. The problem I have cannot be corrected with glasses as there is a problem with the retina I have now been referred to a higher consultant to discuss further.

I have seen a neurologist due to the loss of temperature sensation in my hands and feet, constant nerve pain in my hands, arms, legs and feet plus daily headaches.

Although we believe the headaches are caused by the Eculizumab I had an MRI scan on Friday so should know the result in around 6-8 weeks.

I have been assigned to a 'headache nurse' who I see next week but not quite sure what that will do.

I have also been referred to a rheumatologist for the pain in my joints which I hope will help as some days I cannot hold a pen when it flares up.

Due to my calcium levels not reducing since the transplant I have been told I need to have a parathyroidectomy, so two weeks ago I went to Nucleur medicine and had the thyroid and parathyroid scanned. If all is ok with the positions of the glands then the op will go ahead. I have dreaded this op for years and was previously on medication but as I do not fit the criteria for it now the op is the only way forward.

Over the past few months my Blood pressure has slowly increased to the point where it could damage my kidney so I have been trying new medication with not much success. At present I have around 4kg of fluid on which means my trousers do not fit, my face and hands are swollen and my breathing is a little difficult due to the swelling in my stomach. Firstly I had a scan on Kevin to check he was working ok and the results came back good so I have started some different tablets this week and it seems to be working the only trouble is it can affect the kidney readings and therefore I have to be monitored closely.

As you can see with a lot of transplant patient the road is still not easy once you get that kidney. It is nothing compared to the horrendous journey on dialysis but there are a lot of people out there who cannot understand :

Why I do not work and look so well?

Why I go the hospital so much?

It has got the point now where I say I am fine but deep down I am not. I am still very tired, very irritable due the medication and in pain daily but as I have said it is a much better life than I had.

I am lucky that I have such an understanding family who are still there supporting me and some really good friends who have stuck by me.

I have managed some days out as a family and a lovely evening at Jo's dreams Ball - the charity which helps patients with CKD level 4 and 5 have a dream!!

Lets hope Kevin is still working so good this time next year and I still think about my donor and hope his family are enjoying life just as much with their new kidney too!

Anyway here is to a positive way forward and If I am very lucky maybe a holiday??

TTFN

Lisa

xxx

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  • : livelifelisa
  • : I decided to write a blog about my life on dialysis. Originally there was no option of a transplant due to a rare genetic disease but all this changed. I want people to try and understand what myself and my family go through, not just the bad times but the good as well. Hope you enjoy my story!!
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