I finally did what needed to be done, I went for my kidney biopsy.
At the time of starting my blog, I wrote about how lucky I was that my lupus didn’t affect my organs, and that it was mainly my arthritis and rash that affected my day to day life. Today, this post will change that, and just goes to show how you really must expect the unexpected with lupus and be prepared for anything. I am incredibly lucky to live in the UK and have the amazing, caring doctors, specialists and nurses of the NHS to look after me – and it’s all for free. I couldn’t be more grateful. Without them, their quick actions, communication and the team effort from the two departments I am under the care of – who knows where my health would be.
Honestly, I had kind of been unconsciously putting it off;
#1 because who really wants to have a biopsy done, and
#2 the results would confirm what I knew deep down I already had but didn’t want to admit.
I always felt positive and confident that I was lucky, and that my Lupus would not progress and affect the organs in my body. However, as my pregnancy progressed I realised maybe this isn’t the case for me. I hoped that the leaking protein and blood I had been testing positive for was all pregnancy related, and that after having the baby things would go back to normal. I was warned that after week 20 of pregnancy, I should expect for things to get much worse for me, but it didn’t which brought me more hope that everything would return back to normal and that Lupus nephritis was not something I had. Luckily, throughout pregnancy my Lupus, kidney function and protein leakage remained stable, which was a good sign in that my treatment was keeping the wolf at bay.
6 months post baby, I booked myself in to have the much needed biopsy. As the doctors didn’t push me, I took my time to let my body recover, and enjoy the first few months with my little one.
A kidney biopsy is a procedure where a tiny amount of kidney tissue is taken for testing, usually at least 2 pieces will be taken at a minimum to ensure a ‘good’ sample is extracted for more accurate results. This is performed when there is an issue detected through blood or urine tests and is needed when those tests aren’t sufficient enough to provide a clear diagnostic.
What felt like a week was actually only 3 days that I spent at the hospital following the biopsy. Although, it was 2 days too many as a typical biopsy would be a day case, there should be no need to be admitted at all. The procedure itself was more uncomfortable than painful, I was asked to lay on my front with a pillow propped under my waist to help my kidneys to ‘pop’ out more. The Dr then used an ultrasound scanner to mark out the top, bottom, sides and depth of my kidneys so that he could accurately complete the biopsy in as little attempts as possible, as each attempt could cause further complications. From his measurements they were only about 3-4cm from my skins surface, he took only samples from my left kidney, as it is the left kidney that is closer to the skin. During the whole time, as they measured, prepped and completed the procedure I had to remain extremely still as any movement, even heavy breathing, could affect the positioning of the kidney. The wait whilst they prepped the area made me extremely anxious as I didn’t know what to expect and was unable to move, it felt like forever, but I think I was only in the room for about 45 minutes – 1 hour max. A spring loaded ‘gun’ is used to quickly extract the kidney tissue, as the area is numbed I didn’t feel any pain, just discomfort like someone was poking my back. A dressing was then applied, and I was asked to roll onto my back into my bed where they wheeled me back onto the ward.
A couple of hours later, I felt the need to wee, however as I was under strict bed rest, they gave me a bed pan to use. I couldn’t go and only a dribble of fluid came out, this was red with blood (meaning I had hematuria) – this was not a good sign. At this point, the Dr had already decided that I would need to stay and be admitted overnight. I was extremely uncomfortable as my bladder was getting full and I was unable to urinate, all the signs pointed to a blood clot in my bladder blocking the flow. A few more hours later, and a lot of water, I tried again but was still unable to go, only a tiny amount came out which also had a very visible amount of blood in it – yep there’s definitely a blood clot. They measured the fluid using an ultrasound, this estimated that I had 500ml of liquid in my bladder which I could not release, you can imagine how uncomfortable I was feeling. I requested a catheter to be inserted as soon as possible, to which the nurses decided a 3-way catheter would be needed in case the clot did not come out from the insertion and needed to be flush out…
*WARNING – things are about to get even more detailed and gross!*
…Unfortunately for me, a 3-way catheter has a larger tube than a regular one, for those who don’t know, a catheter is a long flexible tube inserted through the urethra into the bladder to drain whatever is inside, and if needed can be flushed out via a 3-way catheter. My pain tolerance is high I would say, but the catheter insertion was extremely painful for me, it was over in about 5 minutes but because of the thickness of the tube, the pain and discomfort continued throughout the night. Luckily the clot passed through the insertion and no further intervention was needed. I was woken every hour for blood pressure and temperature checks to ensure that I remained stable. Halfway through the night, I experienced discomfort again, it turned out there was another clot not feeding through the catheter, with a little push from saline and the night nurses help, the clot came out unharmed! For the next 2 days in hospital, regular checks were made and slowly the amount of visible blood in my bag was getting less each time. The discomfort from the catheter was still there but was less noticeable after the first day as my body was getting used to it. On the 3rd day I was discharged in the evening, following approval from the Dr who checked there was no more visible blood in my urine and that I was feeling ok in myself. I have never been so glad to be home from a hospital visit, that was the worst one yet (yes it was worse than my cesarean, because at least I got to go home with a little human that time!). Once I got home I had mild pain around the biopsy area but it wasn’t bad, I took it easy for 2 weeks, with no exercise for 8 weeks as the Dr ordered.
The biopsy was performed in early September 2018 and I received the results around 3 weeks later which confirmed that I have type 3 and type 5 of Lupus Nephritis – a result I had prepared myself for already, but it’s still crazy when I think about it. On the outside I feel pretty normal – at least for my ‘normal’, but secretly my body is fighting this monster inside me which was only identified because of a simple urine test. This is truly an invisible illness. I think (and hope) we’ve caught this in its early stages, this way I have the best chance of winning this battle. In my next post I will go into more detail of the diagnosis, treatment plan and my feelings.
Until next time – keep smiling!
Much love to all,