[Marlene]

1) I guess I don't understand why her bladder is bleeding. Is it from an infection? John had serious bladder bleeding also and was on continuous bladder irrigation (CBI) 24/7 for about 3 months. For him too, the clots were blocking the urinary track and he couldn't pass urine. Even when they got his platelets up to 90K, it made no difference so it's not a platelet issue. He would get platelets daily. Hopkins would match his platelets. They worked really hard to make sure he got good blood products. We stopped the CBI when his bladder stopped bleeding for a few days. Unfortunately, it started up again but he did not start up the CBI again. Instead, he would lay on his side to urinate if a clot had formed blocking things. Easier for men but can be done for women also. He would be able to pass fairly large clots this way. This went on for another 3 months. We are talking quite a bit of blood so he was getting red cell transfusion 1 - 2x week.

The cytoxan and BK virus were responsible for the bleeding. We actually saw the clot/damage on the ultrasounds they did.

Well....It was Thanksgiving and fresh cranberries were in season and I started making cranberry tarts, jams and chutney. About one month later, all bleeding stopped and never came back. Cranberries prevent the bacteria from adhering to bladder wall and can help the bladder heal. There is also a product called D-Mannose that can be used in place of cranberries. At this point, in my opinion, I would use natural, home treatments for the bladder.

2) On hospice. I would look at palliative care. It can stand-alone or in combination of hospice. IMO, getting red cell transfusions can go a long way to making a person feel better and should be done even if there is no other "drug" treatment. I would push for the CBC and getting red cells if needed. Sometime, they do what's easiest for them versus what's best for the person.

3) Not getting bumps from platelets does not automatically mean you are refractory. And even if she was, it should not prevent her from getting red cell. There were times when John would not any bumps in his platelets and the there were time when he would. He was transfusion dependent on platelets for 20 months and red cells for 22 months.

4) I understand that 89 your mom is not going to be cured of her MDS but that doesn't mean she shouldn't be given what she needs to live a comfortable life. If getting red cells gives her the energy and strength needed to enjoy the day, then I would push for it.