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Jacob’s CKD Journey

18 months ago our lives changed after what we thought was a simple trip to the doctors for our then 11 year old son, Jacob.

We went to the GP, were sent to the Cumberland infirmary then transferred to the Great North Children’s hospital, RVI Newcastle all within 24 hours. After many tests, an overnight stay in PICU, a biopsy and a three week stay on the renal ward, we were sent home to leave some very confused consultants to try and determine what was wrong with Jacob.

Eventually Jacob was diagnosed with FSGS (focal segmental glomerulosclerosis) in other words chronic kidney disease CKD. He was prescribed a medication which was supposed to help slow the deterioration in his kidneys, sadly after almost five months there was no evidence to show that this was working so he was taken off it.

Jacob’s condition is managed by diet which is a challenge. A boy of 13 being told he can’t eat this and can’t eat that is frustrating.

Monthly trips to the renal clinic at the RVI for blood tests and a check up to assess his kidney function, potassium/phosphate levels, blood pressure and amend his medication if necessary.

Back in December 2021 his kidney function was at 60% and by July 2022 it had fallen to 26%. That’s when discussions of a transplant began. We were told that this would be necessary within the next 12 months and plans were put in motion to make this happen. Paul and I had bloods taken to be tested to see if we were a match and eligible to donate. During our summer in Cornwall we received a phone call to say that both of us were compatible and we just had to decide which of us would go forward.

We decided Paul would donate and work began to ensure his body will be able to cope with one kidney and to make sure that Jacobs body won’t reject the new one. It is quite a long process but the staff at the RVI are amazing human beings, and we know we are in the best hands.

At his check-up in September 2022 Jacob’s blood test results showed that his kidney function had declined further and that it was looking likely that dialysis would be needed before his transplant (something the consultants had been trying to avoid). We went for a tour of the dialysis ward at the RVI, chatted with the nurses, other patients, and the ward teacher to help prepare us for the next steps.

By late November Jacob's kidney function had deteriorated further and his body wasn't handling it as well as it was. He hadn’t been feeling great and his appetite wasn’t good. He wasn't gaining weight which is a side effect and a big worry ahead of the transplant. Jacob went to the RVI to have a line fitted into his chest for dialysis and another into his tummy for nutrition to be fed directly into his body.

Friday 9th December saw the start of dialysis. Jacob said it didn’t hurt but it was weird watching the machine do its job. The nurses and patients on the ward were crazy, they did crafts, sang songs, danced and dodged nerf bullets. (Who said hospital was dull?) Paul and I have been trained by the nurses to administer the nutrition and look after Jacobs lines. We were sent home with a mountain of equipment and needed to do a few DIY jobs in Jacob’s bedroom to make the job easier.

Fast forward to now and Jacob still attends dialysis at the RVI in Newcastle, as this is the nearest paediatric dialysis unit to us. This means either Mum or Dad (mainly Dad) takes him on the 180 mile round trip 3 times a week. Dialysis is essential life saving treatment which doesn’t stop for Christmas, Boxing Day or Bank holidays. Jacob has nutrition administered throughout the night and has fluid/food restrictions but he generally feels well and has gained weight. Work up for the transplant continues for both Jacob and his dad, unfortunately we still don’t have a date for the operation, but we remain hopeful it will happen within the next few months.

Jacob is being a real trouper throughout it all and amazes us every day. We still have a long way to go and many hurdles to clear but we will do it TOGETHER, with support from family and friends.

That should give you an oversight of Jacob’s journey

SO now we’d like to ask you to help out if you can.

Dialysis can last for anywhere between 4 and 8 hrs depending on the individual child’s needs. This is a long time for anyone to have to sit in a chair, but for a child it can be really long and tedious. Ward 7 currently has 5 children receiving regular treatment and several others coming in for occasional visits. The resources they have for entertainment is very low to say the least and they have to share leading to long periods of boredom.

Jacob’s Dad is aiming to complete a full Iron-man distance triathlon which consists of a 2.4 mile swim, 112 mile cycle and a 26.2 mile run on Sunday 18th June and thought this might be a good opportunity to raise some funds which our family would like to give to the Paediatric Haemodialysis Ward 7 at the RVI: To purchase some new games, electronics and resources to help entertain the children who have to endure regular or occasional haemodialysis sessions.

Any donation, great or small will be gratefully received and will help many young people through a very difficult time in their lives.

Thank you