The Transplant Diary UK

The Transplant Diary UK 30 years old with a husband and 3 gorgeous boys, living with Type 1 Diabetes and Kidney Failure.

Waiting for that all important call to get a Simultaneous Pancreas Kidney (SPK) transplant!

18/06/2022

Saturday 18th June 2022

Not a lot has really happened over the past 56 days.

As part of the preparation for the double transplant I have to have an appointment with the Oxford (that’s where I will have the operation) surgeons. The appointment for this has come through and it’s not until August. I know it doesn’t sound that long away when you consider we’re half way through June already and July will fly by as the schools break up… But for someone waiting for a life changing operation - I want the appointment tomorrow 🙈.
I also have a meeting with my renal consultant in a couple of weeks time to just ‘check in’.

My dialysis sessions for the past two weeks or so have been really disrupted. The long line (CVC - Central Venous Catheter) in my chest which is how I get my dialysis treatment has been playing up. The catheter has two lumens and one of them has become ‘sticky’ - as the nurses like to call it. They’re planning on giving me a heparin like flush on Monday before I have my dialysis… fingers crossed this works as recently, because of all the machine disruptions, my dialysis time has increased and the quality of the sessions has decreased! Praying this flush works!

07/05/2022

Saturday 7th May 2022

Not a lot has happened since I last wrote. I had dialysis, like usual, on the Wednesday and Friday mornings. The boys had their usual clubs and an (extra) inset day after the bank holiday Monday… I swear when I was at school we never had this much time off (Wow! I sound ancient 😂😭).

We were reminded this week of just how far Oakley has come with his health, as he had his annual community paediatrician review. They asked about everything! From his medical goings on to his schooling. His health, touch wood, has been fairly stable recently. We are just so proud of how far he has come and just how much he does day in and day out!

Both boys had personal achievements this week as Beau got “Star of the day” on Wednesday and Oakley got the Merit on Friday! They both amaze me, somehow, on the daily. This week was no different. They try so so hard every single day. As long as they are happy and trying their best, I’ll forever be greatful and one proud Mummy!

03/05/2022

Tuesday 3rd May 2022

I’ve had a brief hospital stay! I’ve been coughing for a few weeks now and it eventually got the better of me. Caused my blood sugars to ride a rollercoaster and ketones to go up in a hot air balloon 🙄 I’m on antibiotics now and strict bed rest rules meaning I should be better soon! It’s crazy how a silly cough can snowball into making me so poorly.

My eldest boy instructed me to tell the Doctors that it’s his birthday on the 14th May and that I MUST be home for that - I don’t know why he thought of this first and foremost but the countdown to his birthday happens every year (it normally starts after Christmas 😂).

We’ve got a lot happening over the next couple of weeks so let’s hope we get through it all with no hiccups. All our childrens birthdays happen to be in May & June… it wasn’t planned that way… they were all premature and came at different gestations but obviously fate wanted them to be closer than ever!

FYI: I still haven’t heard from anyone regarding the date for meeting with the Oxford transplant team. I will keep you posted though!

28/04/2022

Thursday 28th April 2022

I have just had a phone call from my therapist who has had a reply from my consultant regarding my appointment on Monday.

He has said to her that I should get an appointment through for June to have a meeting with the Oxford transplant team 🤞🏽 He also reiterated what he told me on Monday and said that every month an appointment will be made for me to see him in the renal outpatients department to just ‘check in’.

I’m still unsure whether I’ve been listed as active on the transplant list but I should get clarification of this from the Oxford team?

26/04/2022

Tuesday 26th April 2022

I had a therapy session today. We spoke about how my appointment went yesterday and I expressed my worries about how I left the consultation. I was so determined to go into his office and not leave until he mentioned the transplant list that I forgot about asking ‘What’s next?’. My therapist said she would email my consultant and discuss my worries. She’s going to email me in the next coming days what she has found out. If she has found anything out.

Leaving his office without clarification has left me with more questions. Am I finally on the donor list? Should I get a hospital bag ready in case I get THE call? Should I make sure my phone is charged for every hour of the day? Does my husband need to let his work know?… just some of the questions whirling around in my head.

I‘m not sure if I’m ‘Active’ on the organ donation list but all I can do is hope and pray that I am.

I’m manifesting that this is Day 2 of my organ donation journey!

26/04/2022

Monday 25th April 2022

Dialysis day.
No different to my usual sessions. Lateral flow testing (LFT) day and because I have a bit of a chest infection and cough the nurses are a bit sceptical that I may test positive for coronavirus! (I have had this cough for a few weeks now and my LFTs have always come back negative - I suspect this test will be no different… & I was right after an agonising 15 minute wait for the result).

After todays session I had an appointment with my Renal consultant. I was NOT leaving until I got some answers. Well… not even answers as I wasn’t really asking questions. I was going in to his office to state how desperate I am to get on the organ donor list. I had done all that was asked of me by my consultant and now I am close to giving up hope… my only hope is to get on the list and have something to aim for!! My consultant seemed happy and said he’s eager to get me back on the list (I think he was confused as I’d never previously been on the list - I was always deemed too unfit). He said he would sort out all of the relevant paperwork - whatever that means.
Is this ‘Day One’ of waiting on the list?

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