My Left Kidney.

haha (the title's making me chuckle) Hello Everyone, Last week I had an appointment with my Urologist. I wish I had kept the letter because I wanted to know the exact dimensions of the stone that the CT showed up. Anyhow it seems to be at the bottom of my kidney which is blocking the flow of urine into my bladder. No wonder I've been getting so many UTI's the last few month (yay...NOT!) He has booked me in for next Monday, he wants to just explore what's going on then decide if he needs to remove the stone if he thinks it's going to effect my kidney/bladder in the long run. I have my fingers & toes crossed that he will get it out!! The stone is left over from the one that he removed last November. That stone was the biggest one I have ever had! I didn't want to see it as I have a pretty weak stomach for those kinds of things which most probably find strange due to all the operations I've had over the years. When he takes most stone out he "blast them out" and because they're shattered into so many tiny pieces it means you can leave bits behind. Over time (say months) if the stone hasn't come out on its own then it gets stuck and just grows and grows until bam! It needs to be removed. I have this procedure anywhere between every year up until 3 years. It always seems to be my left kidney in which this thing keeps recurring! Dr. Vaughn says that this kidney is hard to get to, not only is it smaller (everyone's is I believe) but the "tube" leading from the kidney to bladder is smaller and my kidney isn't in the "usual" spot which means it takes longer for him to find and get in there to blast the stone out. When I was in my early teens I made a life changing decision to take over one part of my life. This meant no more help was needed from family or nurses. I don't exactly remember how we found out about this thing but all I know is that when Mum and I heard about it we (I) knew it was something I had to do to take control over my life, to be able to one day maybe live almost independently (which I do now). We researched what is know as an SPC. SPC stands for Supra Pubic Catheter. A SPC Catheter is a tube that goes into your bladder through your abdominal wall (at your pubic bone) which continuously drains urine from your bladder. It is held in place by an internal balloon that you cannot see. The catheter should be changed every 4-6 weeks. From day one my bladder has been unable to sustain this as i have so much "yucky" stuff in my bladder so mine is changed 2-3 weeks. I remember Mum and I made an appointment with a Dr (not Dr Vaughn) who did this procedure. He took one look at me and says something on the lines of "I don't recommend a SPC for a girl as young as yourself!". Then he turned to my mother and told he that "you're daughter could end up getting cancer because of the SPC". Now if you all knew my mum she is one tough lady... Not much makes her cry! When caring for someone with Spina Bifida I guess you have to be a little tough. Anyway as soon as this Dr said the word cancer I just looked over at mum (I was in shock) and I saw her cry! I don't think I've ever seen my mum cry before that day. It broke my heart that the one thing that I could do for myself could give me something so bad!!. Fast forward a few months and we had heard that there was a Urologist that had just started working at the Private hospital. He had moved from Melbourne and in my opinion it's the best thing he has ever done!! If it wasn't for him I don't think I would be living the life I have now. I know he won't read this but... thank you Dr. Vaughan you have changed my life forever!! There is not much information out there only from other people's experience. If you would like to know more please leave a comment & I shall try my hardest to answer you questions. The catheter is something I have been wanting to talk about for a while but have not plucked up the courage (only close family know about it) to speak or write about. But in the end my book is about my life, not just all the good and things I want to share but things that are bad and things I keep close to my chest. If I'm only to write about my good experiences it will never be out there to help other's understand what I've been though or to help those with SB. Which is why I want to write my book in the first place. I don't tell people about it because I am embarrassed and I don't want to be bullied or people to make fun of me. But I hope you can now understand a little more about me. Have a great day guys & keep your fingers crossed this kidney stone gets taken care of! Amanda <3.

busy week!

Hey Everyone, This weeks been a busy one! First I had an appointment with my Urologist on Wednesday afternoon. He has sent me off to get a CT scan of my Kidneys & Bladder. Those damn kidney stones have been giving me hell for the past few months!! I've had said stones in for 3.5 years now, they hasn't grown much so nothing was done. But I've been getting a lot of UTI's and my SPC [will explain in next post] has been changed more frequently Grr... Thursday was World Spina Bifida & Hydrocephalous Awareness Day!! In the afternoon we had dance lessons! Friday the community nurses came to change my bandage on my left foot. I have had a wound on my heal for almost 2 years now. It's great now because its very close to healing. Can I get a "hallalulia!!!!" [more about it later] Saturday [today!] we went to a local fair/show. It was SO much fun!! Even Hailee went on one of the rides, the Feriss Wheel!! If you know her she HATES anything like that! We go her a show bag [Dora of course] and we got Daddy one too! hehe. I shall put some photos up tomorrow! I won myself one of those "over the top-huge" plush animals, Giraffe. I am totally in love with him [whom has no name]. Well that's my week! How was yours? I have an appointment on Tursday for CT so will let you know how that goes! Amanda <3 Oh yah almost forgot...we have some pretty exciting news about miss Hailee. Will let you in on it next week ;)

as I sit here

Hello Everyone,

... I am typing to you from a hospital bed (sigh). I know, I know I've been a naughty girl and not helped my body fight a UTI. This past weekend, starting on Friday afternoon I was getting these horrible sharp pain all over my body. I just sat in my chair and cried.

'how could I let this happen again?'

How could I let my kidney shut down AGAIN!. I was so angry I just wanted to scream, but thought I keep quiet for there are others in the house. I waited till hubby got home and asked him to put me onto the couch, so he did just that. He could see in my eyes something was wrong, but I could hardly speak, I couldn't lift my head nor my finger. After he rubbed my back (which I don't let him do cause it hurts me) I lay back down and went to sleep.

Saturday morning came and even though the back pain had subsided I felt quite sick. He asked me I wanted to go to hospital & I replied with "NO WAY!". I was trying to get myself better as today was his birthday and I had planned a small surprise party for him (some friends were coming out for a drink). As I was so unwell I asked him to put on Facebook "I am unwell, party is cancelled sorry guys". After that the weight of 'having to get better quick smart' was lifted from my shoulders.

Sunday came around just as slow as the hours ticked by. I felt much better I even sat in my chair. My mum took Hailee (thanks mum!!) for the day so I could rest in piece and quiet. I had waves of feeling brilliant and waves of wanting to die, the nausea was worse cause I hadn't eating since Friday. Hailee come home with paint on her lips and tip of her nose...she had so much fun. I'm glad.

Which brings me to Monday I wasn't looking forward; a friend brought her new baby boy down..wow he's a big!. It was really nice to see them again and it made me feel like normal for just a little bit. She bought down lunch as she usually does, boy it looked good but I wasn't going to try eat a chicken roll after not eating for 3 days. They left and I went to the doctor to see what he'd say. "Amanda" he said, "you've got a UTI. That was fine nothing a little pill won't fix. I was sent home to rest.

Hubby took the next day off, I had an appointment in the hospital and was unsure if I could move in and out of the car (mum was supposed to take me), I got into the doctors showed them my pressure saw (il write about those later) you all should have seen the look on Steve's face, it's like he'd seen a ghost. I asked what was wrong they showed me my leg which had turned fire engine RED! (can't think of name right now). They told me I'd need IV fluids and antibiotics to get rid of it. Steve wheeled me down to Emergency and after 5 minutes I had blood taken and a IV line in. Whisked off to a ward and that's where I've been.

I hate these places with a passion I really do but I know I have to stay here till my fire engine RED leg goes back to it's normal color.