I've been on dialysis 8 weeks now. I'm still getting tired very quickly and work has said they are unhappy with me doing more than 6 hours per week.
I was hoping I would be getting back to work full time by now - but I still don't have he energy and my back pain often makes it difficult to stand up straight.
I had an operation to create a fistula at the end of January and hopefully it will be ready to be used sometime in the next 5 weeks. Using a fistula will enable the dialysis machine to run at a much faster pump speed which means I should get better filtration in my 4 hours on the machine as the blood will go round faster and therefore get more filtering. I'm now pinning my hopes on feeling a lot better once I dialyse via my fistula.
The fistula is very cool - it buzzes the whole time.
I had an appointment with a Urologist this week to discuss removing one of my large polycystic kidneys. This should ease my significant pain and will also ensure there is room for a transplanted kidney when one gets offered from the national transplant waiting list.
The Urologist was happy to remove one or both kidneys depending on my anatomy and the complexity of the operation.
He said there was a chance they may need to remove my spleen and whilst this is not a major problem it would mean I would have to take antibiotics every day for the rest of my life to maintain my immune system. Another miraculous body part that filters blood, manages red blood cells and reacts to illness in the body sending healing cells and extra blood to the right place - clever God.
So next on the list is a CT scan - which I am keen to have as it will also allow me to see how badly impacted my liver is - currently I have not been formally diagnosed with polycystic liver disease but on ultrasound scans in the past the radiologist has been fairly sure I have cysts on my liver. Thankfully polycystic liver disease rarely leads to liver failure.
My nephrectomy (kidney removal) should take place sometime in May this year.
So looks like I will be off work for even longer and I'm now close to having used 6 months sick pay so I will reduce to 50% pay which will need some serious adjustments in our monthly budget.
1.That polycystic liver disease will be at an early stage when undergo my CT scan with no likely consequences in my lifetime.
2. For a quick nephrectomy operation so I can start getting better ASAP.
3. That my spleen won't need to be removed.
4. That on half pay we can manage our finances to stay out of debt.
The more I learn about my body the more in awe of God I am. I am definitely made in a wonderfully and complex way.
Thanks for reading.
Rob and Joy