Need insight!

[JIm W]

It’s been awhile since I’ve posted looking for help/insight, but need some input now. I know there are a lot of experienced people here, so I just want to get a reaction from many of you out there as to what you think is going on, and what may be next. My Mom (69 years old, not very healthy in general, with concomitant Chronic Obstructive Pulmonary Disease) was diagnosed with MDS in December. RAEB, borderline RAEB-T. 5 weeks ago, she has admitted to the hospital with pneumonia, that has not been able to clear. I live in Philly, she is in Tucson, and we talk weekly. Last weekend she was home from the hospital, but sounded terrible. On Monday, she was admitted with severe shortness of breath, and it was determined she had a minor heart attack. This is in addition to the MDS and pneumonia. She’s been moved from CCU into a regular hospital room, and the HEM is feeling like the MDS may have progressed to AML, and that is why she can’t shake the pnuemonia (WBC were 99,000, but have been “fluctuating wildly” as high as 160,000 in the last week. Her plateletts were 22,000 this morning). They are going to do a bone marrow biopsy on Monday to determine more. She has had 2 platelette transfusions in the last 6 days. She cannot do anything for herself sure to fatigue, shortness of breath etc, so IF she is discharged, it will likley be to a LTC/Nursing home or home with full time live-in nursing help. Any input is appreciated. Thanks in advance.

[Suzanne]

Jim, these are all typical problems and complications that MDS or AML can cause or aggravate if an outside problem starts. One can get in plenty of trouble with MDS even if they have not transformed to AML. Once they know more maybe they can get some of her problems under control and at least make her more comfortable.

[Sandy M]

Jim,
I just wanted to let you know that your mom and your family will be prayed for

[Neil]

Hi Jim,
The BMB tomorow may clarify what is going on.
Discuss the following with her docs.
Her heart problem may be from low Red cell count. Makes the heart work harder since there is less oxygen being circulated to her organs. Is she getting packed red cells in addition to the platelets?
If she is getting packed red cells make sure they are providing irradiated/filtered blood. It will prevent downstream problems. This is very important!
If they are not already doing so ask them to provide irradiated platelets also. Again to prevent future problems. Also ask them to provide single donor platelets when she gets a tx. They seem to last a bit longer and do not have as many uncomfortable reactions.
Does she have any symptoms of low platelets—bruising, bleeding, petechiae?
When they get the pneumonia under control, they should be looking at her future. Hope she is at the Univ of Arizona at Tucson. They have some very good docs experienced in treating MDS.
Neil

[Kathryn]

Jim, how did your mother’s BMB go? Has her situation w/ the pneumonia improved? From my experience w/ my dad, I know that the lungs & heart interact closely and pneumonia can have quite an impact on both organs. Neil gave you some very important information, be sure to inquire about it for your mother’s transfusions.

My thoughts & prayers are w/ you & your mother. Please keep us posted.

Kathryn

[JIm W]

Thanks to all for the replies. She had her BMB yesterday and we’re awaiting results today. She has now had 2 RBC transfusions in the last 3 days. Have spoken to her and her breathing is very measured, but her cough is gone (for the most part). Does not sound good at all. Getting on a plane tomorrow to get out there and get a better sense of what is going on. We’re looking for a place to get her released to but she is on such high concentrations of oxygen that it limits the options. I’ll know more later today and definitely Friday. Thanks for all the help. I’ll be back for more…

[shirlsgirl]

Jim, thinking of your mom. Hope things improve.

Take care,

Jody

[JIm W]

Got the results of the BM Biopsy and it is not good. Mom has not advanced to AML, but she has stopped producing plateletts, and her WBC production is off. Based on the COPD, the advancement of the MDS, the mild MI last week and the lingering pneumonia, the prognosis is short term… While it has not sadvanced to AML, the MD explained that it took another course, and basically, these two courses intersect and ultimately it will result in a bleed or infection. “A couple weeks to a few months”. This is a moment that we knew was coming, so now it’s just a matter of dealing with it. I’m flying out tomorrow to be with her and get things in order — living arrangements that work best for her and the care she will need. I’ll also get more details as to other options, but all signs point to palliative care… I know I sound resigned, but it’s because I am.

[JIm W]

Wanted to update all. Was able to get here to Tucson on Thursday night, barely in time to say goodbye. She passed peacefully and painlessly on Sunday morning at 3am. The disease trajectory was quickly downward. Was told Wednesday, 2 weeks to 2-4 months, Friday evening it was a month or 2, Saturday morning, a few weeks, Saturday evening as I left her hospice room, was told it was 4-5 days and should get the rest of the family here. As I left her room we said we’d see her tomorrow… Memorial Service was yesterday. Thanks to all for the support over the past 8 months. You were wonderful and supportive. I’ll be tracking this disease over the rest of my life to watch the progress in hopes and cures….

[Bec]

Dear Jim,
My thoughts and prayers will be with you and your family.

I hope your fond memories of your Mom will help in times of sorrow.

Bec

[Joannie]

Dear Jim,

I am so sorry about your moms passing. I hope it was a comfort to you that you got to see her. I know it was a comfort to her. I too lost my dad to this dreadful disease, jan 2004. I continue to check in with the forum and will also continue monitoring this dreadful disease in the hopes that someday there will be 0 mortality! my prayers are with you, Joan

[Donna]

Hi Jim,

I too am very sorry. Your experience sounds quite similar to my mom’s passing. It’s soo sad. May you find comfort in knowing she is now free from her pain and is no longer suffering.
It’s a very tough road, losing a parent, I wish you strength.

Take Care,
Donna

[al’s wife]

Jim,

I’m so sorry to hear of your loss. Your mom is at peace. It is us who are left to grieve. I lost my husband to this awful disease (AML) in May.

My prayers and thoughts are with you and your family.

Lynn

[Marsha]

Jim

I’m so very sorry about your mom. My prayers are with your family to find peace and strength to get thru these hard times. Your mom is at peace and no more suffering.

God Bless, Marsha

[Author]

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