Story written 2012
Hannah was diagnosed with Nephrotic Syndrome FSGS when she was 2 and a half years old. She woke up one morning swollen from head to toe. As a parent, I was absolutely terrified. I had never seen something so weird.
We took Hannah to hospital and they didn’t have a clue what was wrong. We stayed in hospital for a couple of weeks and they did a lot of tests. A renal doctor then confirmed Nephrotic Syndrome. I had never heard of it and we were sent to another hospital where they could treat us. We were there for 6 months while they treated her but nothing seemed to work.
In January 2012 Hannah had her kidney removed and was placed on dialysis. This meant she had a catheter placed in her stomach. On the 4th October Hannah will have her other kidney removed and will be placed on dialysis for 12 hours every night for 6 months.
Hopefully, in the future, Hannah will have my kidney (her mum). It has changed our lives dramatically and we just want to see a smile on her face.
Update 4th January 2016
Hannah is a year post transplant and has been in remission from FSGS for 11 months. After 3 years with Post Pals she is moving on. Thank you to everyone who sent Hannah and Kurtis post and kept them smiling through very difficult times.
Update 2nd December 2015
Hannah has not have a very good month, she has spent most of it in the hospice and could really do with some happy post to cheer her up.
Update 13th October 2015
Hannah’s doing OK but not great. We went to visit Ty Gobaith hospice today which was scary as she might be there one day. Apart from that Mummys kidney is doing good.
Kurtis had a parcel from someone with no name, it was a sea monster aquarium, he loves it. Hannah’s received cards and letters.
Update 5th August 2015
Both Hannah and Kurtis are doing ok, though we had a bit of a hiccup the other day as Hannah went back in hospital. She’s home now but she was gutted as we were due to see family.
Update 31st May 2015
Hannah is doing ok at the moment, touch wood. Her bloods are stable right now.
Update 27th March 2015
The doctors don’t think Hannah will reach her teens as the disease has come back in her new kidney and it’s not looking good.
Update 2nd March 2015
Hannah is still in hospital due to her kidney transplant but is not very well. She has been in two months now and no sign of going home. She’s having plasma and chemo to try and fight the kidney disease. We’re gutted.
Hannah’s had post from Robin and Jenny Math so thank you for those. Kurtis has had post too which made him happy.
Update 19th February 2015
Hi just a quick update. We have not been home yet as Hannah was transferred hospitals last week. Her kidney disease came back in the new kidney so she is having plasma exchange for 5 days for a few weeks to see if that helps save the new kidney. She’s not having much luck recently and is really fed up. She has to be able to drink 2 liters of juice and eat before we can go home which sucks because she’s struggling.
Update 25th January 2015
Hannah got the call for transplant! She has had the operation and is doing ok, but unfortunately her fsgs has come back in the new kidney so we are really gutted and sad.
Thanks for her balloon she received on Friday, it cheered her up.
Update 11th January 2015
Thank you for the Christmas post, Kurtis and Hannah loved every present they got.
Still no luck with Hannah’s transplant yet. We’re still waiting and they’ve opened the criteria so there’s more of a chance. Her blood pressure has also been really high recently.
Update 29th November 2014
Hannah received some birthday cards and a birthday gift from Robin this month. Kurtis has had some cards too. Thank you.
Update 29th October 2014
Hannah’s blood pressure has been high this month and her heart isn’t too good.
Thank you for the Halloween bits from Kerry and Mark for Kurtis and the letter Hannah received.
Update 29th September 2014
Thanks to both Kerry and Mark for their gifts to Kurtis this month and to the the person who also sent him a gift but didn’t give a name. Hannah received a loom bag from Hannah this month and a letter from Natasha, thanks to the both of you.
Update 28th August 2014
Thank you this month to Kerry and Mark and also Lianne for the post that made both kids smile.
Update 24th July 2014
Hannah’s blood pressure is currently a bit high and she isn’t growing at all. We’re getting nowhere with the new kidney either. Doctors reckon that if she doesn’t yet a new kidney by the end of this year then she will end up in ICU and have to wait for a kidney through there, as they don’t think she will live without one.
Apart from all that, she is happy and obsessed with Pokemon at the moment. They are on their 6 weeks holidays now and the weather is very hot.
Update 4th May 2014
Hannah’s doctors told us on Friday that she won’t last another year without a kidney transplant and it has to be this year. We hope that a kidney comes soon for her.
Update 9th January 2014
We’ve had some bad news. I won’t be donating to Hannah as my function is too low and because she has a rare blood group it’s going be a while for transplant. Hannah is taking it quite badly.
Update 4th December 2013
Hannah has been doing well recently. She’s having dialysis 4 times a week. Her weight and bloods are good at the moment. Kurtis is good too.
I’m having tests done at Manchester and will get my results this week, I hope to say whether my kidneys are healthy enough.
Update 28th September 2013
Hannah is now on the transplant list and we’re just waiting on the call.
Update 31st August 2013
Hannah is having hemodialysis four times a week now because she has two leaky valves that make her quite ill. We have no idea when the transplant is but hope it is soon.
Update 10th July 2013
Hannah has just come out of hospital from having high blood pressure and fluid retention on her body which made her liver get bigger. She’s under control now but still at hospital 3 times a week for treatment.
I have thanked everyone who sent us post and I hope you all had a good time at the Post Pals party, we were gutted Hannah was too ill to go.
Update 3rd June 2013
Hannah is spending 4 weeks in hospital. She’s had a permcath put in her chest two times because it stopped working. She had an operation for pd tube out and she is more prone to infections. She will be going for hemodialysis three times a week. She has been very poorly over the last few months. The transplant is ongoing as we are waiting for her blood type to pop up on the list.
Update 31st March 2013
The post that Hannah and Kurtis have received this month has made them smile as they have been down because Hannah’s transplant is on going. Hannah still isn’t well, she’s been put on steroids to reduce inflammation in her belly where the tube is as she’s allergic to it.
Update 10th January 2013
Hannah stopped breathing this morning. She is currently fully sedated and machines are breathing for her.