One day I woke up and I couldn’t pee anymore. I’m raising money to go privately for my surgery and on going care as I have exhausted public system options. If you want to know more here’s my story:

Hey my names Alexis and I’m 24 years old. 2.5 years ago I woke up one day and couldn’t pee and haven’t since. This year my life had turned upside down with back to back infections that I just can’t seem to catch a break from. I’m getting 2-3 infections per month that have needed treated via IV antibiotics. At first I had been doing it at home with a midline or PICC line. Due to a rare issue I ended up with a 15cm DVT and when the PICC line was removed I ended up with a bilateral PE. This has made IV access extremely difficult and resulted with me spending weeks in hospital that should have been avoided.

I am raising money to seek a private route to my current treatment plan. I feel let down with the treatment plans and future plans from the public system and I have had enough. I’ve exhausted all options in Western Australia and now have to seek other states in Australia to support me and come up with a better treatment plan to avoid further infections, blood clots and worse outcome being dead due to the above.

I am also seeking $1590 ( currently on sale for $1199 but unsure for how long for ) to get the ‘preventative health test’ which is a detailed genetic testing to see if my issues are genetic related or if anything genetics are playing a part in other ways. For more info on the test the link is: Eugene Labs genetic testing

The standard price for a specialist appointment is roughly $400-500 for the initial appointment with follow ups slightly cheaper. If needing to go down the surgical route in the private sector I will need;

- urologist

- Colorectal surgeon ( I am needing an ileostomy or colostomy due to paralysed bowels )

- Gen surgeon

- Cardiologist ( due to history of cardiac arrest during surgery )

- Endometriosis specialist ( to remove endo while under )

- Haematologist ( due to blood clots )

- Respiratory Dr ( due to bilateral PE )

- Pelvic physio ( for post op care )

- Continence nurse ( for post op care )

And potentially more specialists as we work through each step of the way. These specialists will need 2-3 appointments prior to the surgery as well.

Ideally the goal is to get a double ostomy at once and have gynae / endometriosis specialist all in one to do everything in 1 time rather then 3 different surgeries. To get to this surgical point there will be multiple steps and won’t be as easy as finding someone and going in within a few weeks for surgery. The steps that will be needing to taking would be:

1. See a dietician and physio to discuss weight-loss support to try prevent further risk and complications during surgery

2. Get the all clear from haematology and respiratory to have any surgery ( stopping blood thinners )

3. Try and reduce anything contributing into bladder infections so I can have the surgery

4. Finding a team of specialists who are experience with reconstruction surgery as well as some knowledge if possible of my conditions

5. Plan when realistically the surgery will be possible

6. Book surgery and begin any treatment needed prior to it

7. Have surgery

( more steps might need to be put in place but this is basically a rough idea )

As for surgery costs I can’t give an estimate until I have a team in place. It will be costing a few thousand for out of pocket costs. Additionally I will be needing temporarily stay in the state for a few weeks before and after surgery. I will also need flights for myself, my mum and my son to be with me during the process. The biggest costs will be accomodation but might be able to get some assistance from the government but won’t cover a lot of it.

At this current stage this is the plan and an estimate cost. Being with everything in the uncertain I might have more unexpected admissions ( even with top cover health insurance there are out of pocket costs involved ) it is also unknown with how this surgery will go. With previously needing ICU there’s a high chance this could be needed as well.

I appreciate everyone who donates towards my health journey. This has certainly not been the life I wanted or expected but I would love to be able to have a little bit of my old life back and be able to not be In hospital 2 weeks a month as an inpatient with infections.

** I can’t figure out my old password so I had to make a new go fund me account. All funds were used for equipment, private hospital emergency department fees, scans and bloods that were out of pocket when needing to be admitted to private hospital. I will get them to pause it. All funds from that have been used however for the above **