Connect
← Return to 200+ transfusions in two years! Rare strain of anemia...advice please
Discussion
200+ transfusions in two years! Rare strain of anemia...advice please
Blood Cancers & Disorders | Last Active: Sep 21, 2022 | Replies (31)Comment receiving replies
Hearing the reports of your experience in Jakarta is so disappointing. The conditions you report are really distressing so I can understand your reluctance for followup there! 😢
I really hope you’re able to secure a visit for your wife at a clinic in Malaysia. You’re so far from the US that I worry the trip here would be so costly, and very difficult for your wife in her condition.
You’re a wonderful, loving husband and I can see you’re literally doing everything possible to find a diagnosis and help for your sweet wife. It’s heart breaking and never easy when the people we love are going through the worst times imaginable and we feel so helpless.
I want to follow you and your along on her journey so please reach out anytime. Being a caregiver is so difficult. Do you have any family members nearby who can offer some moral support or relief for you and Cilvia?
Replies to "Hearing the reports of your experience in Jakarta is so disappointing. The conditions you report are..."
Connect
Hi Lori.
The only family members in offering some support online are her daughter in Spain, and mother in Jakarta.
I fear my wife may die soon. We just cannot get the bleeding stopped and it now occurs so frequently.
I cannot express how grateful I am for your kindness. It helps to talk about what is going on with her. A good release of emotional buildup.
Cilvia came home two days ago after 6 transfusions and none days in a Covid isolation ward. Because I could not visit, it was a living nightmare. She began to bleed again today and may need readmittance tomorrow. She will, once again, be isolated as she was discharged still positive.
Just a small example of care here.
Thank you again. I will post updates.
God Bless You,
Ron