Pesky Pancreatitis

My last post I mentioned that we were waiting for my blood counts to rise up to levels they were comfortable with firstly for a bone marrow biopsy to see if phase 1 had been effective, and secondly to be able to send me home for a week or so break between treatments.

On Wednesday last week my neutrophils were at 0.7 (0.75-1.0 being the target) and platelets and haemoglobin were coming up nicely. All looked well for the following Monday for the bone marrow and break at home (perfectly timed for Christmas week). On Thursday I woke up with what seemed to be indigestion, lots of pressure and discomfort in my upper abdomen which I mentioned to the nurses and doctors. I got through the day, lying and sitting awkwardly and tried some Gaviscon and Rennies, neither worked. Friday at 4 am I woke up in a lot of pain and started being sick around 5 am, not nice. By 7:30 am I couldn’t lie in any position without being in pain and when one of my regular nurses came on shift he knew straight away this wasn’t indigestion and something was seriously wrong. They examined my abdomen and was given morphine and anti-sickness drugs straight away, and then further bloods were taken for future tests. My blood results came back and they had diagnosed me with acute pancreatitis. They run a test that looks at the pancreatic enzyme Amylase, normal levels are 25-80, yesterday mine were coming back down at 170, however at the time of diagnosis mine were screaming help me at 1700!!

At this point surgeons were included on my care team, a very handsome surgeon (Dr DeAth – strong name ?) came and explained everything very clearly to us. Acute pancreatitis is a serious condition where the pancreas becomes inflamed over a short period of time. Common symptoms are severe pain predominantly in the centre of the abdomen, and feelings of/or being sick. Treatment for pancreatitis is limited and focuses on managing the pain and sickness, and naturally letting the inflammation ease on its own, which usually takes a week or two (just what we wanted to hear). Pancreatitis reveals its ugly head usually for two reasons:

1. Alcohol abuse (accounts for a quarter of cases)
2. Gallstones (accounts for half the cases).

Now as you know I haven’t been necking G&Ts in my spare time, and so the surgeons thought that gallstones were the obvious culprit. When I was first admitted to hospital I had a CT scan and there was evidence of minor gallstones, and so I had a stomach X-Ray and ultra sound to see if they had moved about to cause the inflammation. On the other hand, my haematology doctors also mentioned that one of the chemo drugs (Asparaginase) I had had during phase 1 of treatment has had a high correlation to the incidence of pancreatitis in patients receiving this drug, and proposed that this was the culprit. The ultra scan didn’t reveal any movement or visibility of the gallstones and so it was suggested that the Asparaginase was the cause, and so I will not receive this drug in an future treatment. Friday really was horrendous, but towards the end of the day the discomfort and sickness had eased and I could finally sleep. I must say a massive thank you to my Mum who stayed with me the whole time ❤️

Because I hadn’t eaten or really drank anything for over 24 hrs, the doctors had started me on a fluids to keep me hydrated. I had been given a lot of liquid throughout the night and into Saturday/Sunday. I hadn’t been moving around much, and my ability to store the liquid in the right places was reduced, and so I started to retain A LOT of liquid in my stomach and legs, 11 kg of extra water to be exact!! I felt like a whale, my thighs were the size of tree trunks and I couldn’t sit with them crossed, it felt like they might explode. The liquids were stopped and I was given water tablets in an attempt to flush out the extra liquid! On Sunday night I passed a total of 3280 ml… And by Monday morning had lost 4 kg of my fluid weight!!

They had scheduled in my bone marrow on Monday morning, and were happy enough with my recovery to still do it, and were talking about potentially getting me home on Tuesday! This was a massive surprise to us after thinking I may still be recovering from the pancreatitis, but my neutrophils had hit 1.6 and so everything else was looking good. This was my second bone marrow biopsy and would tell us how effective the first phase of treatment had been. I took the rest of Monday easy, and managed some soup here and there, whilst mum worked hard packing up my room. Tuesday (22nd December) I was told I could go home for a week! This was such a relief, and meant that I would be at home for Christmas Day and Boxing Day celebrations! We were also given the results of my bone marrow biopsy:

“Lymphocytes comprise approx 20% of bone marrow aspirate CD45+ Leucocytes and appear to have normal scatter pattern. B cell comprise <1% of bone marrow aspirate Leucocytes. There is no phenotypic or scatter indication of an aberrant B Lymphoblast population in this bone marrow aspirate”.

In lay terms, the first phase of treatment has been successful, and my bone marrow now looks normal, with less than 1% population of the naughty blasts cells!! So positive news all round. We packed up the rest of my room, and waited for all the check out tests/paper work and two massive bags of drugs for the next week. After 6 weeks of hospital life, it felt very strange being outside and in a car driving away from the hospital. I was quite tired by the time we got home and climbing stairs was interesting, my muscles have forgotten what to do, but it feels so amazing to be home! I intend to spend the next week recuperating at home with friends and family, and fingers crossed enjoy some home cooked food!!

“There’s no place like home” ?❤️?