I am so grateful for the surgery and transplant the islet cells are working, I no longer have the nasty pancreas pain, just dealing with healing pains and learning diabetes which I am on very low doses of insulin, back in New Zealand and getting stronger everyday, thank you to all u amazing people, lots of love
Today is 15 February 2022, I thought I might give you all a little update, if you're interested read on, if not that’s ok too.
12 days a go I went into surgery at 7am in Sydney Westmead hospital, after a barrage of tests and appointments and educational stuff completed the week prior.
I had multiple teams doing their part in this very well oiled machine the TP-IAT surgery.
Firstly they put me off to sleep and then they removed the pancreas which had been previously been butterflied onto the bowel wall, during a surgery in Dec 2018 called a pancreaticojejunostomy (puestow procedure) which was done at the same time as a hepaticojejunonostomy (roux enY procedure).
Due to the fact that I have a rare birth defect called an annular pancreas (when my pancreas developed instead of forming into a leaf shape under the stomach), the pancreatic tissue has encapsulated the duodenum, causing a multitude of issues from chronic pancreatitis to blockages, also not limited to the above mentioned.
The duodenum is the part of the body that connects the stomach to the bowel.
My duodenum and all pancreatic tissue was removed, along with any adhesions or scar tissue, to remove the duodenum part of my stomach was removed and joined to the bowel, creating part of my recovery to be similar to that of a patient with a bariatric sleeve surgery (meaning a raw new wound in the stomach) as my pancreas was smaller than expected initially the docs assumed I might not have sufficient islet cells to transplant, however to their surprise there were sufficient cells.
The pancreatic tissue was then taken to a lab where the islet cells were extracted and returned to the hospital - this was about a four-hour process.
The islet cells were transplanted into my liver, well I was still under general anesthetic my body tolerated the cells well and was able to take all of them.
After the surgery I went ICU. The plan was that I would stay there overnight and then head for the transplant ward following day, however due to complications I was put in an induced coma and on a ventilator until they brought me out of the coma and I was still on the ventilator. For anyone who feels that the Covid jab is rubbish let me tell you, there is nothing worse than being on a ventilator tube so wide it fills your throat from left to right. You can’t talk, you feel like you can’t breathe, you can’t cough, you can’t communicate, your body is constantly gagging because of its reflex with having the solid tube down your throat. Eventually I asked nurse for some tissues so that I could write to her to say that I felt like I needed to cough and that even though I’ve been in this position before but it never felt this bad.
After resting I came out well in with the ventilator out I was due to head back to the ward and unfortunately this was delayed again due to low blood pressure. On about day 6 I ended up on the ward.
I ended up with a kidney Infection/inflammation, well that’s initially presented on the left during an examination we discovered that it was on the right as well. I went down for an ultrasound which showed inflammation on the kidneys, I am on antibiotics now for this.
The kidney pain is probably been the worst for me. I have not struggled with the incision site nor have I struggled with support of the catheter sites and it just feels as if wolves have been digging out my flesh and guts with sharp sharp claws in my back between ribs and hips firstly on the left now on both sides. I struggle a little bit with pain and nausea after I eat and the surgeon has told me that’s due to the stomach having to be cut and reattach to the bowel so it’s like a freshen session my body just needs to heal and get used to.
I’ve moved from a soft fluid diet to a soft solid diet if that makes sense which I seem to be tolerating well, after a few days of that I am back on solids.
Learning to live with Diabetes.. Hummm initially it was all about finger pricks and what my sugar levels were at what they were doing I have progressed to giving myself insulin and learning to work out carb levels in food.
I’m just trying to find a balance as to where my body can cope with the changes that are being made and still allow me to eat which is most of you know I’ve struggled with for the last 4-5 years.
Next I need to master carb counting so that I can adjust my insulin according to what I eat and how I feel and hopefully that this will be easy enough for me to manage on my own, my body is showing good signs of the islet cells producing insulin which is the whole purpose of this procedure.
I feel like the luckiest person on earth to have the support that I have had especially over the last six months that have been so tough. The support from my husband, I think Craig showed me a whole different side of himself: you’re so sweet and kind and patient and tolerable and understanding and I could just go on all day long. Mom and Rod, my days would never be the same without your support your love and your general interest I love you guys so much. My family, Sam Justin and Dad and friends in South Africa the messages and phone calls keep me going, sometimes it’s really tough to see the wood through the trees, that I’m getting there and I think it’s all because of the support that I’ve had from you amazing people family and friends in South Africa, England, New Zealand, Australia and worldwide.
I’m blessed to have such amazing people in my life I hope you enjoyed my little update and I will do another one soon.
We had our predeparture tests done yesterday, both negative- nice drive to drop them off.
Today is Thursday morning in NZ and we leave on Saturday, then my surgery is 3 February.
Thank you so much to everyone who has helped me along this journey we are nearly there, after recovery, I am excited for what lies ahead. Thank you again and please keep me in your prayers and thoughts.
Tomorrow will be one week until I fly to Sydney.
It’s a very weird sense of fear, excitement and anxiety.
Thank you to everyone who has helped both financially and by sharing my story.
I will do my best to keep you all updated, stay safe everyone. All my love.
While there may finally be a date for my surgery on 4 February 2022, the end is near, I am so excited to get this done and move on.
We will head over a few days prior and remain in Sydney for a minimum of 6 weeks if all goes to plan.
I will probably keep this page open until 6-10 weeks post op depending how things go.
Please feel free to share this, it’s time for cutting edge transplant surgery on my pancreas.
I know things are tight especially around xmas so all I am asking for is the equivalent of a coffee if they are able too, if not prayers and positive thoughts will be greatly appreciated.
Thank you so much for everyone’s help so far, 6 week countdown is on.
Please have a safe fun xmas lots of love.
The specialist have pencilled in early February so I have extended this page.
Thank you so much for your kindness and appreciation. I am so humbled all I thought was if I put a page together I might get $100 maybe $1000 but I have so generously received that times 6.5.
Please can you share this listing maybe you know someone who might like to share a cuppa, I am asking if people could please donate the equivalent of a coffee to help me through this life changing surgery that I am looking forward too hopefully in early February. I have a life to live and post op after recovery I have some catching up to do.
Thank you again
Thank you so much for all your love and kindness we have a date pencilled for early February 2022 fingers crossed the new variant of Covid does not create further delays.
Staying positive, hope your all well regards Pip.
A quick update if you wondering what’s happening with my surgery, even though Sydney is opening up with their freedom day however that’s not what my surgery is depending on at the moment, we are watching their hospital numbers, I can not fly over for my surgery unless the hospital has sufficient ICU beds as I will be in ICU for up to a week and with current hospital admissions due to Covid are higher than normal.
So I am patiently waiting at home where we are in a hard lockdown, surely that to will effect my surgery date too.
I ask you to please share my page, let’s get this out there.
We are staying positive and still holding hope for this surgery to change my life.
While Covid is filling up the hospitals in Sydney with their patients, there seams like more delays. Thank you to everyone for you help and support it’s greatly appreciated thanks
Thank you to all of the donors I appreciate you help and am humbled by the feeling of love and kindness.
I appreciate that not everyone afford to donate in which case I ask you to please share this with your friends and family. Thank you so much lots of loves and hugs.
Thank you so much for all the help we have received over the past few months, I am still waiting for my surgery date due to Covid 19 in Sydney and our boarders being closed I am trying to be patient, pardon the pun. Thank you
Thank you so much for your support it’s greatly appreciated.
Currently our boards are closed with Covid so this has created further delays, but as soon as I have a date I will post it.
Thank you everyone who has helped donated towards my upcoming surgery.
We have recently had some great progress, the most recent delays other than Covid is that we have been waiting on the final quotes to come in, these have now been submitted in NZ and we are getting closer, and Covid vaccines have been been booked in, narrowing down my lists and working on final details, still waiting on a date... but now I can finally see hope on the horizon.
Please feel free to share my page and help get some more funds in.
Thanks again to everyone I am eternally grateful and humbled by your generosity.
Thank you all so much for your kindness and support. I feel very humbled by the love and support I have received.
I just want to take a moment to thank each and everyone for the their support, kindness and generosity. I am very humbled and so grateful, will let you all know when I have my date in may.
