This is going to be my last time I post here. I did spend 2weeks in the hospital. During that time my blood levels were hard to get and stay level. So many transfusions. They called in Dr Ignatius hematologist oncologist. I had a bone marrow biopsy done. I have 2 very different cancers. The first one I can't remember the name it has 3 letters when shortened and the ,,2,ND is Leukemia. I am terminal as there is no treatment for either. They are both advanced so they cannot even stage them. I had 12 units of platelets and I unit packed red blood cells yesterday as my platelets dropped to 29. I had developed 2 blood clots while in the hospital. I was switched from warfarin to pradaxxa. Everything is under attack by my autoimmune illnesses. This antiphospholipid syndrome is hard to get control of. I went home after 2 weeks and 2 days later readmitted with cellulitis of both legs and loe blood counts again. I was discharged this past Saturday only to be brought back in this past Monday and received 12 units of platelets and 1 of packed red blood cells. I see the local oncologist today then the 18 I go to Moffett Cancer center to see if I qualify for clinical trial as no treatments are available. I am also going to donate my tissues etc to them for science. They said they have never been seen such a complicated history such as mine before. I am doing this in hope I can save someone.
My daughter is 1500 miles away from me but has spoken with Dr Ignatius several times. Because my time is very limited, she surprised me with a call yesterday saying she will be here Thursday night.
I am scared as no one wants to die, but this is so fast. . maybe if the Drs would have listened to me several months ago, I might not be in this total situation.
Thank you to everyone for your support I have received here since I joined. You are all so kind. Thank you, Darlene xxx
Written by
dar58
To view profiles and participate in discussions please or .
I am so sad to hear about how very ill you are, and you are so brave, and your posts are inspirational, if you change your mind about more posts we are here for you as a collective support for you and your loved ones. Please draw all your friends close to you for the maximum support possible. Please feel our positive vibes beaming out at you. MaryF xxxxxx
Thank you for sharing your time, energy, and self with us.
I have learned from you already.
I hope for you what ever you yourself wish for with the clinical trials- mainly a very thorough understanding and good support with positive outcomes and minimal and manageable side effects.
In the meantime I trust you will get the support you need now that your family is near and helping you manage the logistics of all things going on.
Time to rest. Let others help you now.
Know we are thinking of you so very fondly and I am so glad our paths crossed! Life is very nice this way and and my heart is warmed thinking of you making the world a better place.
Sending you lots of love and hugs at this very difficult time for you and your family.
Others have said things better than I can, one thing I would say is, it is ok to laugh.
When my father was dying my mother, my brothers and I looked back at the many things we did from making a cops and robbers film in a bombed out piece of land to when I refused to do something I’d just had my nails done!
So incredibly sad to read this and you are so courageous. I am praying for you, for the miracle cure yu so deserve to have and I'm so pleased your daugher is flying there to be with you.
My daughter lives on the other side of the world and I know how much I'd want her with me.
Even though I am relatively new here,this is a very supportive group and one you can come to, lean on . Love & hugs. xxx
I read your message earlier and haven’t been able to stop thinking about you and your family since. My heart goes out to you. You are being incredibly brave and courageous, something we should all take heed of. If you feel up to it please do write again, we are all thinking of you. Sending much love and prayers to you all. xx
I feel so much for you, I so hope your daughter is there with you now for comfort. I do hope you are not now in any pain. Thank you for donating, let’s hope it will give us all hope, you are a wonderful lady, your inspiration, your strength. And so loving, caring, I’m stuck for words, just how lovely a person you are to be honest.......For that I really do thank you from the depths of my heart. You have so much courage, strength and so much love, to reach out to us all.
I wish you god speed, and you are in my thoughts and prayers. I just wish this syndrome could be given more awareness, like you do. Xxxx maria
Darlene I wish I had the words to ease what you’re going through but sadly I don’t. Thank you from the bottom of my heart for taking time to post one final comment. Enjoy every moment with your daughter, she is being sent much love and energy. Your courage is amazing and I’m in awe of you. May you sleep peacefully and shine with the brightest stars ⭐️ ⭐️⭐️
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
APS and my Pregnancy. Advice?
APS & Severe Diverticulosis? or anything similar
where do i go from here????
Elevated Red cells and APS
Long term Clexane or any form of heparin
