Iām terribly sorry for my ridiculously long absence. A lot has been happening since my last update. Things arenāt any better tbh, everything has been getting worse. Thank you for your patience and overwhelming love and support my mom and I keep getting from you all even though I was dead silent. I appreciate it with my whole heart. This update will be extremely long and may trigger those of you who struggle with mental illness, so you may skip last part of this text post (Iāll put trigger warning in right place). Medical papers will be in separate posts.
I canāt remember exactly when I made my last post, but last visit from our hospice nurse was on June 10th (Monday). On Tuesday (June 11th) I got a call from full time hospice care and was informed there was a free bed in a single room for my mom available immediately and we have to decide now whether we want it or not. I told hospice worker that I need to discuss it with my mom. And I did. My mom and I decided that itās the right time and itās gonna be the best option. I called hospice and told them about our decision. Then I booked an ambulance ride for the next day. My mom has been in the hospice facility since June 12th. Sheās in a single room because she has those two nasty bacteria - VRE and ESBL+. Our new doc changed her pain management and some of the other meds - she no longer takes morphine tablets (prolonged or short release) but receives it 24/7 in a pump, gets IV metamizole and was receiving 2 tablets of Lyrica (pregabalin; more about it in a sec). Neoparin dose was changed to 2x60 mg a day instead of 3x40 mg. She takes only one diuretic drug atm and gets IV fluids with vitamins etc. No changes in other drugs like bisoprolol. During the first week of her stay she got very serious renal infection - a lot of sludge and blood clots in urine (especially in the left kidney), shivers to the point that I thought she had seizures, high fever spikes and excessive sweats. They started IV gentamicin and ceftazidime and did bloodwork. CRP was around 200 and HGB was around 6,5 aka serious infection mixed with anemia. She was really pale at the time, literally translucent. Doc decided to transfer her immediately to the nearest hospital (the same she was in February where they couldnāt change her nephrostomy tube because they didnāt have appropriate tubes) so she could get blood transfusion. She successfully got 2 bags of blood and HGB was around 9 which was a good thing. BUT. At some point her left nephrostomy tube was RIPPED OUT. I donāt know who did it - I suspect paramedics who transferred her from ambulance stretcher to hospital bed or one of nurses from nephrology ward where she was admitted. Tube started leaking on Saturday night/Sunday early morning (she was transferred to the hospital on Saturday). My mom and I both let docs know that tube was leaking several times. We were waiting for consultation with urology specialist for FIVE DAYS. For five freaking days no one from the urology ward bothered to come and check and attempt to fix it!!! Of course they werenāt able to put it back in or replace it, because they didnāt have appropriate tubes and our only option there was to puncture the kidney again and we both didnāt agree to do it. My mom and I decided to transfer her to our usual hospital where her kidney issues were treated since the beginning. I had to book private ambulance again. We went to the ER on Thursday (June 27th) morning. She was there to Saturday (June 29th). Ultrasound showed urine build-up in the abdominal cavity around left kidney (except usual fluid build-up around the liver [19 mm layer] and in lesser pelvis [16 mm] caused by probably cancer), heavily swollen pelvicalyceal system and no nephrostomy tube in the kidney. Thereās probably tumor in the bladder (the main one has grown into it) - ultrasound showed it and itās 7x7x6 cm. This is the second time when anything about the bladder situation is mentioned - first time was in February when doc mentioned thickened back wall of bladder. Tube was replaced at night (June 27th/28th) but there was still no urine in a bag for around 12 hours. ER doc tried to flush it with no effect. For next 12 hours around 200 ml of urine eventually drained. She didnāt receive any meds (including painkillers) during her stay in the ER, so I had to stay in the waiting room the entire time and sneak in to give her morphine (thank goodness I didnāt donate it and decided to keep it) and Neoparine shots. ER doc wanted to give her IV Ketonal (ketoprofen)⦠Ridiculous. She was transferred back to the hospice on Saturday (June 29th) morning where they started IV gentamicin again, because she was off any antibiotics for 2 days. When we were back in hospice, her saturation was 63 or 68% and she has been on oxygen 24/7 since then. Sheāll get last dose of antibiotics tomorrow. Dose of 24/7 SC morphine was pumped up in last few days because it wasnāt enough. Now about Lyrica - dose was reduced because it was heavily messing with her brain and did more harm than good. When she was on 2 tablets, she was hallucinating, crying in her sleep and sleeping almost all the time. I thought that the end was very very close but when I discussed it with our doc and my mom started getting only one dose in the evening, she came back to normal - sleeps less, doesnāt have hallucinations and is much more responsive. On Monday (July 8th) weāre going to our usual hospital for scheduled nephrostomy tubes replacement. More medical details like blood work results etc. will be in separate posts with papers included. I donāt have any papers from hospice yet - Iām planning to request a copy of my momās medical records when the end is really very close. For now I have several photos of my mom but I WONāT RELEASE THEM PUBLICLY EVER. If you want to see them, please message me. Please, respect me and my mother whoās dying, Iām begging you - remember that you ask for a photo of a terminally ill person. Itās the hardest time ever for her and I hope you understand my decisions. I further discussed funeral issues with my mom and already chose funeral company. My momās wish is to be cremated, but she still didnāt decide if she wants any church service. Funeral home says thereās 70% chance that my mom can be buried in my grandmotherās grave if sheās cremated after passing away. Cost of funeral would be around 7-8k PLN including paying for even being allowed to bury next person in the same plot, keeping burial plot for next 20 years, cremation, urn etc. (Not including church service which is 900 PLN as funeral home worker said); funeral allowance in Poland is 4k. Iāll show you details in the next few days.TRIGGER WARNING HERE. You can stop reading here if you donāt like reading about mental illness and youāre not interested what Iāve been dealing with.Long story short, Iām in a dip shit emotionally and mentally. Iāve been struggling with mental breakdowns for many, many months but in a last few it was more and more unbearable. Iāve been suicidal since at least February. Iāve never mentioned it publicly and avoided to speak about it privately as well. Everyone always says I need to be strong and I kept telling it myself but I canāt do it anymore. Iām not strong. I donāt want to live anymore. I donāt have the strength to live. I didnāt end it all yet just because I donāt want my mom to deal with my funeral. I donāt want to make her troubles. I talked to the psychologist who works in hospice and she booked a psychiatrist appointment for me. I wouldnāt be able to do it myself so she did it for me. It was a private appointment. Otherwise Iād have to wait for months. I think I wouldnāt be there in a few months. Ā Psych I had an appointment with used to work in our hospice and is also palliative care specialist and worked with cancer patients. I got meds but I donāt have any hope for the future. Thatās all I wanted to say. Thank you so much for being patient with me. Iām overwhelmed and extremely grateful for your help. Iām nothing without you and Iāll never be able to pay you back. You have so much love and care to give, itās amazing. Iāll give you more details about my expenses in upcoming updates, I promise. Iāll try to be more consistent with letting you know whatās going on. Itās just extremely hard for me to start every new day. Iām sorry Iām bothering you with my own issues.