When life knocks you down, calmly get back up, smile, and say. "You hit like a bitch."


Bloody Army Wives!

Last night’s Army Wives brought back a flood of memories to me. Devastation. That’s what I remember. Nobody can prepare you for that. Those words, “You have complete renal failure, sorry.” You have to get your head around that. It didn’t hit me at first. It looked like I really handled. But later, it hits you. Between the eyes. Hard. And there is no cure. No therapy to make it better. When I met with the transplant co-ordinator she told me that a transplant is not a cure for renal failure, it’s just medication. My heart sank.

And then you get sent on your merry way. Your first stop is to have a fistula placed in your arm. And because it takes 6 weeks to “ripen” you need a permcath in your chest, to dialyse immediatly with. Your family raleighs around you their heads spinning. Everyone thinks about being a good match.

I had the same argument with my youngest. He said it’s his choice and when he’s old enough he will give me his kidney. So sweet. And my Sister actually was a good match. But because there is a chance that she might get the same disease she was not a viable match. My Sister didn’t care. She wanted to be consulted on the whole deal, but Drs make the final ruling, no-one gets a say.  This could have been my story. I was also told they would put me on the list. And yes it could take years. We cried. What else can you do when hope gets taken away so swiftly?

And Heamo Dialysis is crap. I asked a patient who did both Peritoneal Dialysis and Heamo Dialysis for various reasons, which one she preferred? And she said that both were pretty shit. I must say I don’t agree, I far prefer PD, it’s not as harsh on your body. When I did HD I was a non-functioning person, my hair was falling out, my blood pressure was so low I could hardly walk. I suffered with dizziness and nausea all the time. You feel like crap after your treatment, so ill and weak.  You have one day to recover then it all starts again. I hated it.

It was difficult watching Army Wives. I find it hard to re-live that devastation, it’s not how it was meant to be. I do feel guilty for putting my family through all of this. It’s very hard for me, I so want this to be over so that my boys can have normal lives again.  And waiting is the hardest part. You hear stories of patients who had live donors and they are all doing so well. And I’m still waiting. That is very hard. But I will wait. There is nothing else I can do.

“Health is like money, we never have a true idea of its value until we lose it.”  ~Josh Billings



Its been a while, but trust me, A LOT has happened!

Ok, so I’ve been absent from my blog for 2 years. In my defence, my world kinda came crashing down. Several times. I thought 2009 was a rough year, sorry to hash this all up Sis, but its where my story starts, I have to start at the beginning, OCD and all that, you understand!

So in 2009 in April the 4th to be exact, my Sister who was pregnant at the time, went for a routine scan and the Dr found her little girl had died. Its hard for me to write this and not get emotional and teary, it still hurts.  Our world came crashing down. I had to watch my Sister suffer. Again. For the 4th time. And also the final time.  Her recovery from that was hard, very hard, nobody, and I mean nobody knew exactly how hard it was for her. I did, I heard, I knew. And off course her sweet sweet loving and ever supportive husband. I could do nothing. I felt and was helpless. All I could do was stand by and watch. No words.

But my Sister recovered. She grew into this amazingly strong and grounded person. I stood in awe as I saw her emerge from this painful horror story. She taught me so much. She is a happy well rounded person who isnt looking for that one thing to make her happy. And that, is amazing.

I didnt know how much I learnt from her and how much I would use these lessons until a year later. I was feeling ill, very ill, nausea stomach ache, tired, very very tired. I went to my GP, she diagnosed Collitis. Inflammation of the colon. She prescribed a heavy dose of antibiotics. I got worse. I went back and she gave me another dose of anti biotics. I got worse. At that time my husband told me to make an appointment with my Nephrologist. Now this is after my Sister had been on at me to go see him too, always asking me if it was not my kidney. I always said “Nah man! Dont worry, its not that!” Can you say DENIAL?

I went to see him, after I did the regular UK and E tests with 24 hour protein and createnine clearance tests. He took my blood pressure which was very high, a sure sign something is up. He took one look at my createnine clearance and said “Amanda your createnine levels are at 1400.” Which means renal failure. My kidney function was all of 4%. I really thought he was joking! He always jokes around with me! But apart from nausea only in the evenings I felt fine! So my world came crashing down once more!

We decided to go on holiday as a family. I wanted to have normal before I started dialysis, just one more time. It was a great holiday, but also a bad one for so many reasons. I also got really ill after that holiday. When I started dialysis my createnine levels were at 2700. The Dr could actually not believe I was still alive! And my heamoglobin was 4. He told my husband that not many people would be alive with heamoglobin that low. So I know ‘Im stronger than I think.

I started heamo dialysis in July 2011. I had a permcath (permanent catheter) in my chest, and a ripening fistula in my left arm. I used my permcath for 9 months, because I absolutely refused to use my fistula after I saw what happened to people’s arms after a while. Its awful, its hideous and very painful in the beginning. So amid a furore of nurses and drs telling me I HAVE to use the fistula, I said, “Nope” and stuck to my guns for 9 months. I am now doing peritoneal dyalisis. And I far prefer it to HD. My Sister was with me when I had the PD op done. I think she is still traumatised and probably in need of therapy which I will pay for! (chuckles silently) What and AWFUL op! I shall leave it there.

For 7 month my Sister and I did tests to see if she could be my donor. And she was! She is in perfect health and a great genetic match. We got our transplant date for the 30th of March 2012. We were extatatic! My Sister doesnt have children and she thought her destiny in life was to be my donor. At first I didnt want to hear her, but as the tests became clearer and we went further I saw that maybe she was right. And then, 6 weeks before our transplant surgery, my Dr pulled the plug. My world came crashing down again. My Sister and I were devestated. My Husband and my 2 sweet boys were devestated! Everyone we knew were devestated. My best friend heard through my sobs of the devestating news.  My Mom was devestated. It was awful.

But let me tell you, all these devestated people carried me through this. That was wonderful. Nobody gave me stupid platitudes, nobody said stupid things like “Its for the best” they just carried me through it.  And still are. I am truly blessed by the number of people who are just there for me. I gained a lot after I lost it all.

Not so long ago I told Pete I don’t want to be a slave to renal failure. I cant just wait for some random person to die to provide me with a life. And I hate being on the national donor list. But here I am. Because of the nature of the disease I was diagnosed with, a live donor is not feasable. But neither is a deceased donor. So my Sister, being the amazing person she is. Digs. And she dug until she found something. I’m seeing a Dr in October this year and I will say more about it when the time comes, suffice to say it looks hopeful, more hopeful than it ever looked. Im so excited for this appointment and really cant believe I have to wait so long, but I have no choice.

In the meantime, I will dialyse with my APD machine, and bide my time until then.

I have recently started drinking wine again, and I developed a taste for Bacardi Breezer Pineapple flavour, and I’m enjoying my life again. My boys are now teenagers and that keeps me on my toes!

You gain strength, courage and confidence by every experience by which you really stop and look fear in the face. You are able to say to yourself,  “I have lived through this horror. I can take the next thing that comes along.” You must do the thing you think you cannot do.