Mother just diagnosed - 2 trips to ER for Pulmonary Edema
 

I found your site a few days ago and really appreciate all the insight!

My mother was diagnosed with MDS on January 15th of this year. She started treatment with Vidaza and Aranesp last Tuesday. They checked her blood that day and said it was low so she got 2 units of blood Wednesday followed by her second treatment. Her blood pressure dropped very low during the transfusions and continued to be low during her treatment but nurse practioner thought it was due to so much Benadryl in the past two days. Thursday morning she was incoherent and we had to call 911 to rush her to the ER. They diagnosed her with pulmonary edema due to possible congestive heart failure. She was treated with lasix Thursday and was discharged from the hospital Friday (yesterday). Today she was lethargic again so we had to call the paramedics again this afternoon. She is back in the ER and doctor says he hears fluid again.

Her oxygen level has been extremely low and we have her on oxygen but that does not seem to be enough.

She is 77 and has some autoimmune diseases and high blood pressure.

Has anyone else had a similar experience? Does anyone have any advice or thoughts on questions we need to ask?

Thanks in advance...and please keep posting your experiences as they are invaluable to recently diagnosed patients and their caregivers!

Pulmonary edema
 

Hi MDSnAL,
If your mother has heart failure they should be very careful when they give blood transfusions since she can receive too much fluid and this can result in pulmonary edema.

I don't think Vidaza or Aranesp will give this kind of adverse effects.

Hope your mother will get effective treatment for the pulmonary edema - that is now much more important than treatment for MDS!
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006, supportive therapy with blood transfusions, Neupogen for low white blood cells and treatment for iron overload until 2010. Since then Thalidomide + Prednisone but after 2 years and 8 months low counts again. Will try Revlimid + Prednisone.

Birgitta-A,

Thanks for your reply. This has certainly been a roller coaster ride.

The doctors found she has too much carbon dioxide in her blood so they are using a b-pap (similar to a c-pap) machine to rid her body of the excess.

We agree with you, it seems all this started with the blood transfusion. She certainly cannot do without the blood when she needs it but the doctors said precautions can be taken prior to the transfusions to help prevent this from happening again.

The pulmonary doctor said the Benadryl (for treatments and the transfusion), Atarax (for itching), and sleeping pills she has used for years likely contributed to the congestive heart failure episode resulting in pulmonary edema. She will no longer take the sleeping pills and limit the Atarax as much as possible. When she has the terrible itching, she scratches so that she breaks the skin and causes sores all over her body. Does anyone else have terrible itching? If so, how do you deal with it?

The good news is she does not remember a thing when she has these bouts. The bad news is we remember every detail.

Thanks again!

Itching
 

Hi MDSnAL,
Atarax is supposed to be one of the best drugs for itching. Patients with MDS and other leukemia like diseases sometimes get itching that is difficult to treat - you have probably googled itching and tried many ways to prevent itching like avoiding hot showers and so on.

What type of MDS has your mother? How are her counts (HGB, white blood cells and platelets)?
Kind regards
Birgitta-A

Itching
 

Hi MDSnAL,
In another support group they discussed itching and one member wrote that Dermol had helped her so she didn't need Atarax. http://www.diomed.co.uk/dermal-labor...rmolrange.ashx. Hope this isn't advertiment.
Kind regards
Birgitta-A

Birgitta-A,

Thanks for the information about Dermol. We have called a few drugstores in the area and did not find it but will keep looking.

The doctor said she is low in RBC and has had two transfusions - one in December and one last week. Her WBC count is on the lower end of normal but some of her cells are "fuzzy" according to the doctor. Her platelet count is within the normal range but again some of the cells are "fuzzy" - not sure what that means exactly though.

My sister and brother joined Mother and me at the doctor's office that day. We all were totally shocked about the diagnosis and had never heard of MDS so we did not know questions to ask. The doctor did not tell us her score or level but we did see him on a Tuesday and he wanted to start treatment right away the next Monday. He explained we want to restart her bone marrow and this drug has a 75% chance of doing that.

If you read much on the Internet about MDS, it is very daunting. This forum has been the most honest but upbeat site I have found!

Thanks again!

MDSnAL

MDS
 

Hi MDSnAL,
You know MDS is very complicated - it took me a long time to understand what info is important. This forum has very good info at the homesite.

In short you have to ask about her level and her counts (hemoglobin, white blood cells and platelets). Ask for copies of the test result and write your own "report" about your mother. Then you can follow the disease.

Hope the pulmonary edema has been treated and that your mother is feeling better!
Kind regards
Birgitta-A