Were you a member of our Forum on http://TransplantBuddies.com
No
About Me
Where did you hear about Transplant Friends?
Are You Male or Female?
Female
Share - which illness led up to you needing a transplant?
My 3 yr old daughter. Congenital nephrotic syndrome
Which Organ(s) did you receive? If you are on the waiting list, please share.
Kidney
Drugs, vitamins, favorite foods
Anti reject myco, tacro, PRED, Bactrim
How many years have you had your Transplant for?
6 + months
I am Interested in Transplant Friends because...
Want to no what my baby girl is feeling and I always have questions running through my head never being able to talk to someone that understands so feel the need to talk to someone that might have the same experience etc. happy to share experiences with other parents and people to help me and my daughter grow in this journey together.
Which Transplant Center has or will perform your life saving surgery?
Royal Childrens
Share how your transplant experience changed your life?
PD dialysis at home for 3 years. No more PD. As my daughter would say no more machiney. So cute. Thankful and greatful for life :)
Share whatever information you want us to know about you
My daughter had a transplant at 3 years of age and is now 5 months in. stressful for a mother. Just wanting to do the best for my baby girl and make her enjoy and love life and feel good all the time. She's a happy little thing :)
Share your interests and hobbies
My daughter loves paw patrol, playing all day long, reading books and playing sonic.
What Part of The World Do you Live? Feel free to share city, state, country
Australia Vic
Comments from Your Friends
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Comments
Oh I see. PRED because bronchitis. I'm sure all the drugs effect everyone differently. Was curious why you were still on it.
My daughter got her kidney through paired kidney exchange program. Her grand mother wanted to donate directly to her but couldn't because her husband has hepitious and she contracted it through him. But she didn't get sick. Her body fought it. But the doctors didn't want to give it to Shelby incase a risk of Shelby contracting it. So one of Shelbys doctors came to us and asked if we would like to try the paired kidney exchange program and with I. The next run there was a perfect match for her. We were so grateful in so many ways. The other family were to cause their person we only new that they were very sensitive and hard to find a match for. So it was a blessing both ways.
Yes Shelby did PD - was a bit of a night mare but again grateful for it. Being so little it was very sensitive. We don't have to think about this stuff though. And For you stay positive 27 years is absolutely amazing and I wish you more and more years. Like I said I read 42 years and still going with kidney tx. Stay positive and that also helps allot. But I no sometimes that's hard.
What's a light box?
Yes the cooler months are coming for you. But atleast you can cosy up on the couch and what some great movies etc. we have a fire place which we love putting on in winter. But I'm glad to see that sun shining more and more. Get Shelby out of the house.
Shelby starts kindergarten next year. GERMS GERMS GERMS excited but nervous. I can't keep her in a bubble for ever. But I try my best to teach her about hygiene etc. then I got school for her then high school. GERMS GERMS GERMS if I was bright enough I would home school her. But!!! That's out of the question lol. Want her to be allot brighter then me!
Sounds like not much has held you back. And I'm so happy to hear your experiences etc. makes me feel hope for Shelby that she will actually do more then what I have in life. As you have travelled the world got a good education and a good job teaching. I like reading that and seeing that :)
Ok now. Shelby wants me to play Micky mouse with her. So have a nice day.
If you ever travel to Australia be sure to send me a message and we can meet one time :) weather it be now or in 5 years. Will be here :)
An Australia and New Zealand trip is on my list, but will have to save $ for quite a while after my Africa trip! The distance worries me a bit- I don't enjoy flying. Africa was 16 hours away nonstop! I get a bit claustrophobic being trapped in the air and always think of all the trapped germs. I get sick easily bc of immunosuppressives.
I am still on prednisone but on a low dose for a long time. Hard to say what is a side effect and what is me at this point. Tho last year I was put on high dose of pred for bronchitis, and it actually made my mood go up and I felt great and super motivated. So med reactions can be tricky.
I hate needles too, don't blame her. Wow- licking the floor- now that's revenge. Lol. For me IVs were the worst. I'm sure that is part of why my mom chose PD. I did it at home- Was taught how to do it myself. Then had a night machine for a while. I had less diet restrictions on it than hemo and didn't have to miss school that much. But I still don't like needles. Idk what I would choose if had to do dialysis now, prob whatever could work around my work schedule. I try not to think about it too much.
Yeah we should be in autumn here, though last week was really hot (low 90s)! Seems to be cooling down. The seasons def effect me- I got a lightbox last year which I am going to start using soon, hopefully will help some with moods.
Take care.
Yeah, my nephrologist was all for me going to SA. I was a bit wary about Zimbabwe and Botswana. South Africa is pretty advanced but those countries not so much- I'd probably be scared if i got sick there. But I got really god travel insurance with medical evacuation etc. and all went well.
I am a bit wary of visiting Central America countries, though. But I have gone to Europe and Iceland and all over. Which is pretty cool. I wouldn't have done well if my dr said I couldn't travel. But that was after I had my Rx for a while. The first year its still all new.
Yeah, I have had some bad up and down moods over the years. I blame it on the prednisone and cyclosporine and Imuran I take, but it could just be my brain was designed that way. I am usually okay, I see a therapist and have a few ppl close to me. I had a great July this summer so I tried to go off the psych medication i had been taking this August and that ended up being a bit of a shit show. So I am back on them, feeling a lot better. Trying to put things in perspective more.
I tend to do stuff all or nothing, so will prob be on here a bunch and then get busy and forget about I and not check the site for a while, and then come back. So if I don't reply right away don't take it personally.
How is your daughters cold? Hope she is doing well. Take care. Talk to you later.
R
I just read your comment on my page. Congrats on your daughters kidney tx. I dont have kids so can't really imagine what it's like to be on the other side, but I do remember my mom freaking out s lot!
I never had a tube, but did do PD for about 6+months I think. Don't remember some of the details. I'm sorry about your daughters cold. Being new I'm sure it's scary, though it's not gonna be the last one. I usually still get 1 or 2 bad colds every winter- (I do work in a school so am exposed to lots of germs though.).
Good to meet you. I joined this site this summer but haven't been very active on here- will try to visit more. I'm not really big on social media and tend to stay offline and unplugged a lot, so this is all new to me.
Anyway, best of luck with your daughters tx. With all the new medical advances now, 27 years is nothing- she will probably have it for 50+ years!!
Take care
R
Hello Lucy,
Welcome to TransplantFriends! I hope both you and your daughter are well.
Greetings and Welcome to Transplants Friends, Lucy.
Welcome Lucy to Transplant Friends!
Thank you so much for joining us.