MDS – Pneumonia – MRSA
January 20, 2015 at 3:23 pm #26328
My mom was diagnosed with MDS in the past year. It was decided that she was going to get a bone marrow transplant in the next few months. She started her first low dose chemo treatment in November. Her immune system became so low that a couple weeks after the first round of chemo, she was hospitalized. They have diagnosed her with MRSA and pneumonia. This is her third week in the hospital. She feels the same except one lung has got better, but the other lung hasn’t got any better. Her platelets are currently 50,000ish, RBC 7ish and white count is 400. She does not have enough of an immune system to fight the pneumonia or MRSA right now. So she is dependent on the antibiotics.
Has anyone else experienced this? If so, could you tell me about your experience.
Thank you for listening.
July 26, 2016 at 11:55 am #30239Veronica WallaceParticipant
- This topic was modified 5 years, 8 months ago by haterry.
My father is going through the same things you mother experienced can you offer some advice.July 27, 2016 at 12:37 pm #30252July 29, 2016 at 12:33 pm #30270
Whatever happened with your mom? My grandmother was diagnosed with MDS last year, she started Vidaza, ended up having to hold off on treatments because of MRSA & Pneumonia as well. Now, she’s recently been diagnosed with AML. Now it’s really hard to fight off the infections she has at the moment. Interested in knowing more about your mothers situation. Thanks.July 29, 2016 at 1:04 pm #30273
My mother was hospitalized in January 2015 at a regular hospital. She had a temperature while she was getting a blood transfusion so they admitted her. She was doing fine, but they diagnosed her with MRSA and pneumonia due to lung x-rays. That hospital wasn’t helping her so we transferred her to Indiana University hospital. They did many tests to check her lungs. But she had a fungus called Aspergilliosis in her lungs. They never would have guessed that that was what was in her lungs. So I still don’t believe she has pneumonia or MRSA. I think it was the fungus the whole time. Her immune system couldn’t fight it since it was so low from the chemo treatment to start her bone marrow transplant. So fast forward, March 2016. Her body started to shutdown and she did some dialysis. March 27, 2015, she passed away. I honestly never had the thought that u would lose my mom to it.
I highly recommend Indiana University Hospital. I wish we would have went to them ASAP. If you have any questions, I am happy to answer them. Nothing will bring my mom back and I hate it, but if I can help someone here that will mean a lot to her and my family.July 29, 2016 at 2:46 pm #30276
OMG, I hate to hear that 🙁 I wish that we could afford to take her to a hospital out of state. I tried to contact one of the cancer centers of America facilities, but they said they weren’t taking any new Medicare patients. Here in Little Rock, Arkansas- we have a Cancer Insitute that we got her transferred to. Since she was at the regular hospital so long- they ended up putting her on the ventilator saying that it would keep her from dying since her breathing wasn’t doing well (she was breathing too fast and through her mouth and wasn’t getting enough oxygen to her body; in the middle of the night, she took her bipap mask off and the suggestion of the vent was the results) They’ve been trying to wean her off the vent, but she was still breathing really fast. They keep saying they don’t want to treat her with the standard treatment for AML, but they won’t explore the studies of using lower dosage chemo therapies just to TRY because of this vent. However, they are nicer here and more willing to do what we want as far as supporting her through this tough time. At the regular hospital, they were only pushing the fact that she’s dying. One doctor said we were being unethical. My grandmother put me over her for a reason, she’s requested to fight this within reason. If my grandmother does leave this world, I want to say I followed through with her request and fought and not simply gave up because I was criticized and made to feel ‘bad’. Thanks so much for your response, I really do appreciate it-and again, I am so sorry to hear about your mother. 🙁August 24, 2016 at 10:24 pm #30444Karen SkaatParticipant
I am seeking advice for quality of life for my dad , My dad was just diagnosed in June and is 81 years old . His levels were in the 30s in June and dropped to the 20s , by July 15 . They have held steady in the 17-23 range for over 6 weeks now. He was suppose to start treatments and has been delayed due to infections the last 2 weeks.
Most recently pneumonia in the hospital for 8 days . A doctor on his most recent visit made him rethink things treatment asking what would his quality of life be if he were extremely sick the remaining part of his life
His immune system is weak . Some drs says not to start until your levels are under 10 . He is insulin dependent diabetic , has a pacemaker and Coronary Heart Failure . Any thoughts and opinions with older patients would be so appreciated .August 24, 2016 at 10:29 pm #30445Karen SkaatParticipant
I am so sorry to hear about your mom . You seem you could be very insightful for us .
I guess I just need to ask if she would have had the choice would she have still tried the treatments ?
My fear is the treatments will lower his immune system so much that his quality of life will diminhs and quickly
Thank you for sharing and listening 🙂 God Bless your momAugust 24, 2016 at 10:54 pm #30446DeborahParticipant
Hi Karen, Of course, no one can make that decision but your dad. I would listen to his doctor about quality of life. Vidaza is known as one of the “not terrible” chemo drugs; and they’re right. But, it is still a strong drug that is going to probably have a few side effects and they will be unpredictable. The drugs they give to prevent nausea can also have their own complications. There is often a steroid involved. Taking Vidaza is not a walk in the park for most. I can only imagine that a round of Vidaza on top of the issues he’s already dealing with, low immune system and fever, frailty from pneumonia etc might be too much! I kind of want to go into Vidaza strong!!!! I get weaker every day as the medicine builds up in my system. Vidaza will cause his numbers to fall into a nadir about a week-10 days after last dose. The hope is that his numbers will recover after the nadir and his marrow will start making more mature cells. I was advised that it would take at least 4 rounds of 7 days each, to see any improvement. I had no improvement until after round 9 😱 A lot to consider and a lot of other things I’ve forgotten or don’t know. I am 63 and I’ve found it to be extremely difficult. Yet, I still take Vidaza, but not every month now.August 25, 2016 at 11:17 am #30450
Hello Karen, I just wanted to encourage you on this journey with you dad. First, its all about how your dad feels about it. But, I would like to encourage you in the Lord. Quality of life is often questioned at times like this because they want to know would you like to die peacefully or painfully. However, I first had to listen to my grandmother, she is 63 years old, and she initially had MDS, she too suffered multiple issues that caused her pain. She too had to wait for infections to pass in order to get the VIDAZA. With all of the delays, this resulted in her getting secondary AML. So many times, my grandma was weak, in pain, she cried some days, some days she was very confused, but Karen, through it all, she always said “God got me” she never gave in to the diagnosis, she always steadfast with God. Now, my grandmother is in the hospital on the ventilator and as her power of attorney, I am carrying out her will to fight, despite the fact that doctors hold concern for the quality of life. I know that God is able, even when my grandma got her diagnosis of AML, she said “I’m going to fight”. My grandma is also a breast cancer survivor of 20 plus years, even then, they had given up on her- so she knew the struggle that was ahead of her when she made the conscious decision to fight. Karen, I encourage you to do your research, look into studies that have been done, and know as much as you can. I have learned in this journey that doctors will tell you only what they think you don’t know. I have read some studies that tells us that high risk MDS should be treated with an urgent approach, so now that we are at AML, and she’s older, debilitated, etc. she’s been given a death sentence. If I could turn back the hands of time, I would’ve tried to get my grandma with another doctor that would’ve treated her MDS more urgently. The difference in AML and MDS is, they try to wait things out with MDS, with AML they can treat regardless of infection or not because the key is to get the white blood cells under control to attempt to reach a remission. However, in older patients, they don’t really like doing the standard treatment when it gets to that point. Talk with your dad, you guys pray and see what he wants. I am holding faithful to God, if she’s going to die from leukemia, she’s going to die trying to fight this trusting God totally. Things are not always how they look. Currently, they are treating my grandmother with low dose chemotherapy (Dectabine) and so far, the counts are going down day by day. I visit her everyday (sometimes with a day or 2 break) and pray over her, read scriptures to her, and speak positivity into her. I hope I’ve said something to help you figure this all out Karen. God be with you. -Whitley E.August 25, 2016 at 11:21 am #30451
I am so glad to hear that you eventually got some results. I hate that it took so long, watching my grandmother suffer has been truly a rough journey, but I know its been rougher for her-so I stay strong. I pray that you get better and stay better. I am happy for life in you. <3
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