My Story!

[Rose From OZ]

Hi All

As you all know by now I am Amanda's Sister and unfortunately, myself, my father and now my sister have been affected by this disease. I first found out I was sick when I was 15 and the doctors told us it was only a matter of time before they fail totally.
For myself as a 15 year old I felt I had to grow up very quickly while friends were busy with boys and party's I never had the energy to do any of it and always worried about what was around the corner for me, my one wish was to finish my final year at school. My Final year at school came and I found my concentration levels were only getting worse and the specialist then said it was time that I considered leaving school. With this advise I followed it and tried to concentrate on my health. With in a month of leaving school the Dr advised it was time we discussed transplantation and my mum was there to offer a kidney ( We didn't know Amanda was sick at the time). The plan for me was to avoid Dialysis all together as I was young and already in a fragile state as I was only 37KG. I got started on Predinsone and Cyclosporin 1 weeks before my scheduled transplant to prepare my body.

We arrive at the hospital for my transplant and waited while they found a room, the waiting felt like hours as I was feeling so ill and my mother unfortunately had come down with the flu, they then realized the transplant may have to be rescheduled.  I was complaining of feeling unwell and that I felt like something was just not right we then pushed the Dr's to give me a urgent blood test when they did to there horror my system was on  shut down. The anti rejection drugs had shut my whole body down and I would of died if they had waited another few hours. I was then rushed in to have a vascath put in so I could start dialysis that day, we were then explained the risks involved in this procedure with one of them being a punctured lung.  There was a 1 in 10000 chance of this happening and unfortunately I became that 1.

With out them even realizing they had punctured my lungs while waiting for my xray in a wheel chair I could feel it getting harder and harder to breath and calling out didn't seem to get anywhere before I knew it I felt like I was in a scene of ER with Dr's hovering over me (Unfortunately there was no George Clooney ) I was then rushed into another surgery for them to put a hose into my chest. I can now honestly say that was one of the worst procedures I have had in my life. The pain is still so clear too me, they could only use a local anesthetic on my skin and the rest I had to be awake for I still remember the feeling of this hose crunching through my Lungs as the Doctors pushed it in.

I then started my first session of dialysis that night at midnight. I was hospitalized for a month with numerous doctors coming in and switching the machine that was trying to build my lungs up on and off. No one seemed to have known what they were doing as they then collapes over 10 times while I was there, we finally called a professor who seemed to have gotten it right and within the week I was back at home.

We then had to wait as my body wasn't ready for a transplant but for me Dialysis didn't seem to agree with me I was only on it for 3 months but it seemed like 3 years... I would sleep while I was on it cause I was so weak and would sleep when I was off it so I spent a good half of those 3 months with the fairy's...

On the 25th June 1997 I received my Kidney Transplant from my mum. I felt great instantly and didn't even remember what it felt like to actually feel well. My mum took a bit longer to recover and was feeling worse then what I was as they had to remove one of her ribs to get the kidney out without harming it.  Since then I have had 2 or 3 rejection episodes but nothing that they haven't been able to control with some extra drugs. I will be having my 10 year anniversary this year and will also be getting married so hopfully this year will bring some luck our way..

I know I haven't suffered half as much as what some IHD members have but I hope I can help in some way as well as others help me. I see how hard it is to live with this disease first off and I sometimes wonder why things happen the way they did. Although I'm thankful to god every day for giving me this chance at life I some times wish things happend the other way around for us so it would be me suffering rather than my sister. Saying that I would like to say a HUGE thank you too all the IHD members as things are sometimes tough for my sister but she always feels comfort knowing she has friends like all of you... so again THANK YOU.

[RichardMEL]

Rose thank you so much for sharing your story. Sounds like you've been through enough to me... and I am so glad your transplant has held for 10 years (almost)... I only hope I can be so lucky... and hopfully with your impending marriage things will go from strength to strength for you!! Looking forward to reading more from you

[Sluff]

Thanks for sharing your incredible story.

[tamara]

Rose, Thanks for sharing your story.

Tamara xxx ooo 

[goofynina]

I know I haven't suffered half as much as what some IHD members have

Girlfriend, it sounds to me like you've had your share of suffering, i am sure there are members here that not have suffered as much as YOU.  Thank you for sharing your story and i am so glad you are here with us, 

[boxman55]

Rose, thankyou for that I love reading about peoples's successes with transplants. Even more so now that as of yesterday I finally made the list. Look forward to hearing more from you-Boxman55

[goofynina]

Rose, thankyou for that I love reading about peoples's successes with transplants. Even more so now that as of yesterday I finally made the list. Look forward to hearing more from you-Boxman55

And why havent we heard this good news publicly here?  Come on Boxman, you deserve a thread of your own,  I'll be looking for it  
oh, and Congratulations,  but i will say all that WHEN i read your thread

[Sluff]

Congratulations Boxman!!

[Bajanne]

Rose, thank you so much for sharing that with us.  I really must never complain.  My kidney failure was diagnosed at age 56, and there you were, a 15 year old having to cope with all that horrendous stuff.  It is a real tribute to the human spirit (and I am sure, your supportive family) that you are here with us.  We look forward to sharing your happy moments with you. 

[Wattle]

  Thank you Rose for sharing your story with us.

[anja]

   Thanks for sharing your youth of turmoil with us.  You have endured quite a bit and still have a great life ahead.  When is the big day, Rose?  My congratulations on your upcoming marriage! 

[angela515]

Thanks for sharing your story. Congrats on the transplant working for so long. 

[Rose From OZ]

Thanks Everyone for your kind words! The wedding is on the 1st September and I cant wait 

[goofynina]

Thanks Everyone for your kind words! The wedding is on the 1st September and I cant wait 

I sure hope you have accomodations for all of your newfound IHD Family,  looking forward to being there   yah right, i'll settle on seeing some pics   (wouldnt get on a plane if you paid me to)    

[Romona]

I was reading through old posts. Rose is married now!
I like reading to see people's stories.