Nancy,
Thanks for sharing about your recent stay in the hospital for blood clots. I am relieved to know that you are doing better now and are at home again. Good to know that you received good care while in the hospital.
Your input here on the forum is always appreciated!
Forums
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: How to handle when admitted to hospital from ER
Nancy, this was very good. Thank you for sharing.
Re: How to handle when admitted to hospital from ER
Hi Nancy,
I'm so sorry you had to deal with shortness of breath and the problems caused by Revlimid to your lungs. It was nerve wrecking for me to read about, never mind for you to endure. We are all glad that you are back at home and we hope that you are feeling better with each passing day.
We retrieved my brothers hospital stay paperwork and, as expected, multiple myeloma was all over his file. When my brother texted me early evening, that he was heading to the ER, I called the after-hours number for the specialist, and told the covering doctor that my brother was headed to the ER and the hospital name. The covering doctor said she would let my brother's specialist know right away. I guess that was the end of that?
It dawned on me that this was not actually my brother's first trip to the ER since diagnosis. He also had significant lung pain and pain in the sternum a while back. His oncologist, at the time, called the ER he sent my brother to, called my brother back and gave him the name of the nurse manager to ask for. My brother was taken right in to the examination room, where he remained for about 9 hours before discharge. His oncologist, at the time, made numerous calls to the ER staff for status, etc.
I think what this gets down to is a matter of style and standards for care.
We've learned a bunch and all from Beacon members. Priceless, really. Hopefully others have become aware of the goings on when a trip to the ER happens and admission to a hospital.
FingersCrossed, Philatour, Anonymous, Eric ... thank you very much for your comments.
GR
I'm so sorry you had to deal with shortness of breath and the problems caused by Revlimid to your lungs. It was nerve wrecking for me to read about, never mind for you to endure. We are all glad that you are back at home and we hope that you are feeling better with each passing day.
We retrieved my brothers hospital stay paperwork and, as expected, multiple myeloma was all over his file. When my brother texted me early evening, that he was heading to the ER, I called the after-hours number for the specialist, and told the covering doctor that my brother was headed to the ER and the hospital name. The covering doctor said she would let my brother's specialist know right away. I guess that was the end of that?
It dawned on me that this was not actually my brother's first trip to the ER since diagnosis. He also had significant lung pain and pain in the sternum a while back. His oncologist, at the time, called the ER he sent my brother to, called my brother back and gave him the name of the nurse manager to ask for. My brother was taken right in to the examination room, where he remained for about 9 hours before discharge. His oncologist, at the time, made numerous calls to the ER staff for status, etc.
I think what this gets down to is a matter of style and standards for care.
We've learned a bunch and all from Beacon members. Priceless, really. Hopefully others have become aware of the goings on when a trip to the ER happens and admission to a hospital.
FingersCrossed, Philatour, Anonymous, Eric ... thank you very much for your comments.
GR
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greenrobin - Who do you know with myeloma?: My brother
- When were you/they diagnosed?: 12/2014
- Age at diagnosis: 54
Re: How to handle when admitted to hospital from ER
Thank you all for your concern for my latest crisis. I am doing ok, although the air quality in Philadelphia is terrible today and breathing is a little more difficult. I guess I'll be spending my day in air conditioning.
Greenrobin-
Thank you for posting the experiences with your brother's recent hospital stay. I think that we all learned some valuable lessons from what happened to him. Hopefully your brother and the rest of us will never have such a disastrous experience in the future.
Nancy in Phila
Greenrobin-
Thank you for posting the experiences with your brother's recent hospital stay. I think that we all learned some valuable lessons from what happened to him. Hopefully your brother and the rest of us will never have such a disastrous experience in the future.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: How to handle when admitted to hospital from ER
Nancy,
I'm really, really glad to hear that you're doing well despite the blood clots that were found in your lungs. You did the right thing by going to the ER when you noticed the shortness of breath. Blood clots anywhere are nothing to treat lightly.
I don't want to hijack this thread, so maybe it would be best to start a separate discussion about your experience. However, I'd definitely be interested to know how the clots were treated, and what you're doing now to avoid the clots becoming a problem.
Take care.
I'm really, really glad to hear that you're doing well despite the blood clots that were found in your lungs. You did the right thing by going to the ER when you noticed the shortness of breath. Blood clots anywhere are nothing to treat lightly.
I don't want to hijack this thread, so maybe it would be best to start a separate discussion about your experience. However, I'd definitely be interested to know how the clots were treated, and what you're doing now to avoid the clots becoming a problem.
Take care.
Re: How to handle when admitted to hospital from ER
This has been a really informative thread and I don't have much to add, other than don't let any hospital staff, nurse, doctor, or secretary give you the run around. It's your brother's life, my life, someone's life. If things don't feel right ,then something is not right – even if it's just a communication issue.
Overall my care has been good and usually things run smoothly. I have had an ER doctor miss diagnosing a pulmonary embolism. Thankfully I followed up with my hematologist, who sent me for tests because she believed I might have one. Overall, the hospital communicates with my specialists and there are other doctors to take over if mine is out of town.
Best of luck. I hope your journey gets easier to navigate.
Kim
Overall my care has been good and usually things run smoothly. I have had an ER doctor miss diagnosing a pulmonary embolism. Thankfully I followed up with my hematologist, who sent me for tests because she believed I might have one. Overall, the hospital communicates with my specialists and there are other doctors to take over if mine is out of town.
Best of luck. I hope your journey gets easier to navigate.
Kim
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kjpoppit - Name: Kim Nelson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept. 19th, 2013
- Age at diagnosis: 47
Re: How to handle when admitted to hospital from ER
TerryH-
2 bags of Heparin were infused for the clots over 36 hours and then I was switched to Lovenox injections. Originally my doctor was going to have me do the Lovenox at home, but the copay was more than I could affford each month forever, $240. If I had only had to do them for a few months, I could have managed that copay somehow, but not forever. Actually I'm glad that the injections were scratched because my abdomen is almost totally purple from the bruising from the injections, 2, one week later. I'm sure it's because of all of the Heparin that i had in me.
Anyway, after lots of discussion among the team of oncology residents and oncologists, they decided to prescribe Xarelto. Xarelto is one of the new anticoagulants that doesn't require constant monitoring of blood levels and limitations in diet. The downsides of the drug are that it is new and the long term effects of it aren't yet known and there is no way to reverse the drugs action if you experience an event that causes significant bleeding. There is a way to reverse the action of Heparin and of Coumadin. So, because of the bleeding risk I have purchased a medical alert necklace that says that I'm on Xarelto. It sounds like I will be taking the Xarelto forever.
So far I'm doing well. I still have occasional bouts of difficulty with breathing, but I think that it is more related to the air quality here in Philadelphia right now than to problems with the clotting. Each day my breathing is easier. What I learned that I didn't know is that the anticoagulants is to stop the clots from growing and from others forming. Then one's own body supposedly dissolves the clots.
This has been quite a learning experience for me. Hopefully I won't go through anything like this again.
Nancy in Phila
2 bags of Heparin were infused for the clots over 36 hours and then I was switched to Lovenox injections. Originally my doctor was going to have me do the Lovenox at home, but the copay was more than I could affford each month forever, $240. If I had only had to do them for a few months, I could have managed that copay somehow, but not forever. Actually I'm glad that the injections were scratched because my abdomen is almost totally purple from the bruising from the injections, 2, one week later. I'm sure it's because of all of the Heparin that i had in me.
Anyway, after lots of discussion among the team of oncology residents and oncologists, they decided to prescribe Xarelto. Xarelto is one of the new anticoagulants that doesn't require constant monitoring of blood levels and limitations in diet. The downsides of the drug are that it is new and the long term effects of it aren't yet known and there is no way to reverse the drugs action if you experience an event that causes significant bleeding. There is a way to reverse the action of Heparin and of Coumadin. So, because of the bleeding risk I have purchased a medical alert necklace that says that I'm on Xarelto. It sounds like I will be taking the Xarelto forever.
So far I'm doing well. I still have occasional bouts of difficulty with breathing, but I think that it is more related to the air quality here in Philadelphia right now than to problems with the clotting. Each day my breathing is easier. What I learned that I didn't know is that the anticoagulants is to stop the clots from growing and from others forming. Then one's own body supposedly dissolves the clots.
This has been quite a learning experience for me. Hopefully I won't go through anything like this again.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: How to handle when admitted to hospital from ER
I was on Revlimid for three years and I am very grateful I never had any clotting problems. I hope you continue to recover.
Eric
Eric
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: How to handle when admitted to hospital from ER
Hi Nancy in Phila,
I was traveling earlier in the month when you wrote about your blood clot problem and got way behind in reading the Beacon Forum. And, unfortunately, I had some other stuff going on yesterday that conflicted with attending the PMMNG meeting.
But I've been thinking about you and hoping that you're doing a lot better. Are you recovered from the blood clots?
Sending positive vibes your way!
Mike
I was traveling earlier in the month when you wrote about your blood clot problem and got way behind in reading the Beacon Forum. And, unfortunately, I had some other stuff going on yesterday that conflicted with attending the PMMNG meeting.
But I've been thinking about you and hoping that you're doing a lot better. Are you recovered from the blood clots?
Sending positive vibes your way!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: How to handle when admitted to hospital from ER
Mike B-
Each day is a little better. So, I'm ok. We missed you on Saturday.
Nancy
Each day is a little better. So, I'm ok. We missed you on Saturday.
Nancy
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
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