Platelet question

[Kathryn]

Once a person becomes platelet refractory - is that it for platelet transfusions?

My mother was diagnosed with MDS 16 months ago and, at 88 years of age, decided not to do any treatments except red blood and platelet transfusions. She has had a pretty good year plus, but experienced numerous urinary tract infections. Her platelets have been as low as 3000 and as high as 78,000, averaging around 35,000. Her hemoglobin seemed to average around 9 and her white blood cells were 2 to 3. When she left the hospital a week ago her platelets were at 13,000, her red blood was at 9.2 and her white cells were up to 7 (unusually high).

In the past month she was admitted to the hospital twice due to blood clots in her bladder restricting urine flow. During the last hospital visit they gave her 4 platelet transfusions (single donor) to try and stop the bleeding in her bladder - none of which bumped up her numbers (they stayed at around 13k). The hospitalist and her hematologist said there was nothing more that could be done and will not give her any more blood products. She is now home and in hospice. She is in pretty good spirits and really has her wits about her for a 89 year old. She is still bleeding from her bladder, and is hooked up to a continuous bladder irrigation device to keep her comfortable.

So I am haunted, wondering if we have done everything we can to help her. Since she is in hospice she can no longer receive any blood products and we are trying to figure out if we can even get a CBC. We do have the option of taking her out of hospice to see a doctor re: treatment, but her doctor will do no more blood treatments. It does feel like doctors look at my mom and see an older person who's had a good life and should let go. In fact, when she first went to the hospital when this whole journey began, one of her hospitalists said she wouldn't give my mom platelets and that she should just go home and have a glass of wine and relax. Well, we didn't follow that doctor's advice and she's had a great 15 months since. So, my question is, have any of you heard of a case where platelets would not take, then they would? Also, I'm open to any advice about anything I've written. Thanks so much..

[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.

[Kathryn]

Thanks Marlene, I appreciate your taking the time to respond. As far as why my mom's bladder is bleeding - we were told by the urologist that she has cystitis, a result of recurring urinary tract infections. Through the past year plus she has been treated with antibiotics to treat the UTI's - but they would always come back. The last time she was in the hospital the urologist performed a cytoscopy to examine her bladder (the hospitalist had been telling us that the mass she saw in a cat scan was probably a cancerous tumor-luckily she was wrong, it was a mass of blood clots). So, what we have been told is that her bladder is very inflamed and, besides antibiotic treatment (which they took her off of when she went on hospice), there is nothing that can be done to help. We were also told that the bleeding in the bladder is due to her low platelets.

As far as palliative care goes, I agree. Her current insurance plan does not cover this (or the plan she is with does not have this). I am looking into changing her medicare plan this month to an insurance company that covers for and provides both palliative and hospice care. I think with palliative care we can get the red blood transfusions and other treatment.

She has been drinking cranberry juice for many months now to treat the UTI's - I'll look into more natural remedies.

Again, thanks for responding. I am still not ready to give up and appreciate your ideas and encouragement.