This is a day by day account of my autologous stem cell transplant, picking up from my last post during the conditioning chemotherapy which you can read here. It’s not exactly pleasant reading, so continue at your peril!
It has taken me 38 days plus since the actual transplant to post this as I have been totally exhausted, and you’ll see in my next post I had a wee setback since coming home from hospital from the stem cell transplant.
Me sucking ice lollies madly during the Melphalan infusion – it helps prevent the worst of mouth ulcers.
Stem Cell Reunion
This video shows my stem cells (that were harvested back in May) being defrosted from storage in liquid nitrogen, warmed to 37° C and then reunited with me via an IV drip:
Went from the Ambulatory ward after being reunited with my stem cells back up to the hotel whilst we waited for my room on the ward to be readied. Finally got a call at about 10pm to say come down. Was absolutely exhausted, mainly from the stress of it all.
Woke up in my prison cell to a bad stomach and stomach cramps. Feeling nauseous but managed to put down a bit of each meal. Slept a lot but didn’t seem to help as felt extremely tired when awake. Blood taken daily from now on to check all the levels.
Nausea and diarrhea. This is the Melphalan drug stripping out your stomach lining apparently. No appetite.
Same as Day 2. Given IV fluids to help prevent dehydration. Glad to have it on the one hand as I know how horrible dehydration can feel but a bit of a nightmare as now I have to lug the drip stand to the toilet and back. Sore throat. Asked docs if this was the dreaded Melphalan mouth sores to which they replied ‘probably not yet’ and that it would get worse. Blood count showed white blood count flat-lining.
Felt slightly stronger. Sat in chair for an hour and had a bit of each meal presented to me despite the nausea. Peripheral neuropathy (tingling in the fingertips) bad.
Went downhill: Extremely weak. Nausea. Very sore throat (beginnings of mucositus proper from the Melphalan). Given Co-codamol for the throat pain which totally spaced me out! CRP level (inflammation markers in blood) climbing. Temperature hovering in the mid 37’s. Docs said I could be ‘brewing’ some sort of infection. Put on IV antibiotics just in case.
Spiked a 38° temperature in early hours of the morning. Given Paracetamol to keep it under control. CRP levels even more raised. Very weak. Throat and mouth very sore. Had developed a couple of mouth ulcers on the side of my tongue which hurt when I tried to eat. Given more Co-codamol and Oromorph (liquid morphine) to ease pain. Not enjoying feeling spaced out from the Codeine. Couldn’t eat anything besides yoghurt. Temperature spiking into 39s between doses of Paracetamol. Still got a bad stomach and nausea.
Bad stomach pain and diarrhea, not helped by IV antibiotics. Nausea a bit better but no appetite (not helped by the hospital food!). Mouth & throat very sore. Hair beginning to fall out (had been giving it a yank every morning to check its structural integrity).
Hair now falling out at a rapid rate. Nurse came and chopped my hair off with trimmers. Blood platelets dropped very low, had to have a platelet transfusion. Still having temperatures. Still got a bad stomach and tummy pain. Not eating. No energy.
Same as Day 8 except slight improvement with the stomach. Ate yoghurt.
Spiked a 38.9° temperature. Struggling to keep temperatures under control with Paracetamol. Platelet levels low again, had another platelet transfusion. Very sore mouth & throat still. Not able to eat. Day 10 is a big milestone with stem cell transplants as cells should have ‘engrafted’ now (found their way into the bone marrow and started doing their thing. Given GCSF injections – these encourage the bone marrow to release white blood cells into the blood stream.
Diarrhea and stomach pain really bad. Really getting to me now dragging the drip stand backwards and forwards to the toilet. Feeling very low. On a positive note the mouth and throat pain not so bad today. Given GCSFs again.
Still spiking temperatures. Docs reckon as soon as my body starts producing white blood cells the temperatures will sort themselves out. Throat and mouth slightly better again. Zero energy. Even slept through most of Emily’s visit. Needed another platelet transfusion. More GCSFs. Neutrophils (part of white blood count) up from 0 to 1.59!!! That means the transplant is successful and stem cells have engrafted!!!
Very weak. Still spiking temperatures. Still bad stomach problems. Mouth a bit better. Managed to eat soft food: yoghurt & porridge. Was sent for a chest CT scan to make sure no sign of infection. All clear!
Sent down for a tummy CT scan. All clear! Lower back pain, had this before from the GCSF injections. GCSFs stopped as neutrophils above 2. Tummy quieter. Still spiking temperatures but a bit better: low 38s & 37s. Mouth a bit better. Eating small amounts: soup, yoghurt, cereal. Craving cold sweet drinks. Needed more platelets. Also needed a red blood transfusion (2 bags). Towards end of day temperatures subsided. IV antibiotics stopped. No more being hooked up to a drip 24/7!
Feeling much better. No temperatures! Mouth and stomach much better. Eating proper meals (if you can call hospital food meals!). Sat up in chair most of the day, listened to music. Really feeling sleep deprived from 15 days and nights of being woken up at all hours. Asked nurses (as I wasn’t spiking temperatures) to give me antibiotics and check my obs early so I could take a sleeping tablet and have a decent nights sleep.
Had a decent nights kip! Woke up feeling much better. Really hungry, eating better. Still no temperatures. Tummy still a bit dodgy. Almost fell out of my chair when docs came in and said I could go home today!!!
So that was that. Job done. I survived the ordeal! All the staff on Ward 89 were amazing. I felt at all times that I was in safe hands. Am so glad this is over and am now focussing all my energy on recovering …which is proving much harder than I could have imagined.