The story of my father
I want to inform all community that my father is not alive anymore.
I will summarize our experiences in a list below, it may be helpful for all patients.
1- June 2009 - MDS or Aplastic Anemia, Bone marrow hypocellular, lymphocytes higher than neutrophils.
1. Platelet(5000) transfusion once a week, HGB(7000) transfusion every two week. Excade was used to lower ferritin levels under 2000.
2. Danazol didn't work, corticosteroids alone didn't work,
3. January 2010 ALG-Cyclosporine - After six months it work, No more transfusion of platelet(20000), RBC transfusion once every 20 days. Neutrophils were higher than lymphocytes.
4. May 2011- Hip replacement surgery, Platelet is 70000 RBC 11 before surgery by transfusions.
5. May 2012 Other Hip is drilled, it didn't work.
6. September 2012 Sleep apnea is recognized by me, High risk sleep apnea is diagnosed. CPAP machine was began to be used. After CPAP RBC transfusion once every 40 days.
7. May 2013 Other Hip is replaced. No more transfusion (PLT around 50000, RBC around 11)
8. November 2014 Cyclosporine(200 mg) was stopped. ( My opinion is , everything was good so we shouldn't stop it)
9. December 2014 Liver and spleen abscess, 1 month antibiotics treatment in the hospital. No cure.
10. Liver affects skin, terrible pyoderma gangrenosum on the ridges of arms from elbow to fingers. skin was dissolving and bleeding. Tuberculosis bacteria growth in the abscess culture(after 1 month). Thalidomide was also started. 1 year long tuberculosis treatment was started. After 2 months we were dehospitalized and everything was almost OK.
11. May 2016, Tuberculosis was cured. Platelet levels decreased(20000)(Maybe because of cyclosporine was stopped.) RBC was good so we didn't even think to start cyclosporine.
12. May 2017 PLT is 20000 RBC 16. I thought what was going on. I couldn't find anything.
13. May 2018, RBC is around 11. During infections RBC is low around 9.
14. October 2018, Spleen caused pain because of splenic infarct. Spleen is removed with transfusions(PLT 70000, RBC 11)
15. RBC started to decrease, Oh my god, Spleen was producing RBC. the name of the condition is extramedullary hematopoiesis. Every 10 day 2 units of RBC transfusion is started. Platelet is between 5000-10000, No need platelet transfusion.
16. January 2019 Started low dose cyclosporine, Neutrophils was around 1,5 but they decreased to 0.
17. February 2019 mouth infection, Mouth surgery. Doctors were suspicious about fungi(mucor), They started NOXAFIL but there was not fungi.
18. NOXAFIL caused liver not to produce albumin protein.
19. Low protein levels caused edema(20 kg) from feet to testis to lungs progressing day by day, also there was infection in the lungs. Last week he started to breathe with oxygen support.
20. Papaya leaves, graviola, curcumin didn't work on any of the blood types.
21. Antibiotics caused increase on renal blood values last 3 days.
22. March 20 2019 Last day his mind was OK, But his speaking can hardly be understood. (May be because of edema on the tongue) He was trying to sleep. He was cold. Pulse oximeter couldn't measure the oxygen level and heart beat. Electrodes were attached to the breast to measure heart beat. Last hour, He started to sleep in comfort, no difficulties on breathing. (May be he was dying, But it is my first experience, I never thought that he can die) When I came to the room, I recognized that heart beat is 50 and constantly decreasing. His heart was stopped. Doctors try to run it according to the procedure. After 30 minutes he was no more alive.
2009 august diagnosed MDS or AA, cyclosporine began,ALG (rabbit) treatment 2009 december, After 2010 April cortizone began, platelet transfusion free for 3 months. 2011-2013 Hip replacements with low platelet. 2018 splenectomy.
Your family has been through so much. I'm very sorry that you've lost your father.
Your father survived many years after his original diagnosis. He must have been strong-willed to keep up the fight through so many obstacles. Having your help must have made a huge difference to him.
I hope that his ability to sleep and breathe at the end is a comfort to you. He was finally peaceful.
Although you described his medical status in your summary (and thank you for posting it), I hope there were months in between where you didn't have to deal with his illness and could simply enjoy your time together.
Founder of Marrowforums and caregiver for my wife
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