[The Cruise Mermaid]

Multiple myeloma with lung involvement at diagnosis

by The Cruise Mermaid on Tue Sep 11, 2018 5:14 pm

Hello everyone, and thank you for allowing me to tell my aunt's multiple myeloma story.

My aunt is from Chicago, Illinois, and is almost 70 (October 2018 she will be 70), and she previously had no other health issues until this year. From about the beginning of the year she started having severe back pain. She of course like most thought it was just aches and pains and took Advil (ibuprofen) or Tylenol (acetaminophen / paracetamol). I believe she also may have seen a chiropractor and had a massage or two. However, without warning in late May 2018 while vacationing in Tennessee she passed out in her bathroom early one morning and was very disoriented. She was diagnosed at the Emergency Room with acute kidney failure along with very abnormal blood results. I'm not 100% sure what results were all bad, but the led them into thinking multiple myeloma. So at this onset she had to be on dialysis three times per week right from the start, and they did a bone marrow test to confirm the myeloma (this was all done in Tennessee).

Upon returning home to Chicago they decided to go to the University of Chicago Hospital and from there she immediately had MRIs, CTs, and it was noted that she had bone lesions in her spine, ribs, and also had some shadowing in her lungs that they were unsure of. Her treatment plan was as follows: radiation to the back for the bone pain, and treatment infusions once a week for the myeloma, along with the diaylsis three times er week due to the kidney failure.

Almost immediately she contracted pneumonia, was running high fevers, and so treatment was halted (this is through June and early July 2018). Then suddenly she developed a rash from neck to toe. They biopsied her skin and noted she was having HSV 6 (or 8, can't remember which one) and also they believed the myeloma was in the skin (they had a biopsy confirm that as well).

Then mid July when all of this was not improving she began having trouble breathing. She was admitted to ICU two weeks ago and was on a very high powered oxygen cannula along with periodic mask wearing and they kept saying she was getting worse and now they believed that she was having a condition called amyloidosis which could be a result of the myeloma. Her dialysis has not been keeping the fluid off of her lungs or her body and she began swelling bad and even leaking fluid right from her body (lower extremities).

Just one week ago the doctors advised my uncle that should her breathing get so bad that she require a ventilator, this was a decision they would not recommend as once she went on it, she would never come off of it, she would be sedated, and would also never speak again. While my aunt still had her mind about her she told the doctors herself that should this happen, yes, she wanted the ventilator. This past Saturday, my uncle said good bye to her on her trip to go to dialysis , and she returned on a ventilator. Apparently her oxygen went to zero during dialysis and so the ventilator was installed (it is a down-the-throat one, not a tracheostomy one).

To say my family is devastated is an understatement, but we've been told the first 24-48 hours are the most critical, and we have passed that point. However, now the doctors are saying they will "try" 24-hour dialysis and see if they can get some fluid off her lungs, but they do not expect that to help, and they are doing nothing further regarding any sort of treatment, and we will be needing to make a decision as to when to "stop the ventilator." I am so upset I can't even fathom all of this.

I have researched and researched and researched since May about this disease and I still feel like I don't know nearly enough. What I do know is that lung involvement seems very rare and I just can't understand why. This woman is a very young spunky almost 70 year old. How could this happen?

Well, I will end my story for now. Like so many others, I feel like we need a miracle. But I don't know if we will get that miracle.

[Arizonan]

Re: Multiple myeloma with lung involvement at diagnosis

by Arizonan on Tue Sep 11, 2018 6:07 pm

I’ve never heard of a case like this. So overwhelming. I’ll hope for a miracle too.

David

[The Cruise Mermaid]

Re: Multiple myeloma with lung involvement at diagnosis

by The Cruise Mermaid on Tue Sep 11, 2018 11:52 pm

Thank you for replying. Sadly, I found out today that the doctors talked to my uncle (five different ones) and told him "It's time." She needs to be turned off the ventilator. She will be "coherent" for about 30 minutes, and then she will pass.

I can't even believe the horror of all the above. I just don't get it. You have to sit and "watch " your loved one choke to death or gasp for air to death? I understand there are all sorts of sedation drugs, but how can you be on all those drugs and be "coherent."

This is all overwhelming sad beyond words. I have so many questions that of course I cannot ask because I'm just a niece. This isn't my spouse or parent or child.

I just can't help but feel so sad and horrifically mortified that my uncle and cousins (their grown children) are suffering through all this.

I still want and am praying for a miracle.

[Cali]

Re: Multiple myeloma with lung involvement at diagnosis

by Cali on Wed Sep 12, 2018 10:24 am

I am so sorry to hear about your aunt. If it is any comfort, my father was treated at the University of Chicago and we've had no issues with the multiple myeloma-related care he's received. So I feel that your family certainly did all it could. Again, so sorry, and hope you will get your miracle.

[The Cruise Mermaid]

Re: Multiple myeloma with lung involvement at diagnosis

by The Cruise Mermaid on Fri Sep 14, 2018 7:30 pm

My aunt has passed away. At the doctor's recom­menda­tion, they turned off life support yesterday, and she passed after about 5 1/2 hours.

My heart goes out to my uncle and cousins. Life is so unfair, this disease is so unfair. Time of diag­nosis til death was a little over 3 months, and it seemed like she just never had a chance. Any­thing that could go wrong went wrong.

She's in a better place now and may my family get through this horrible time.

Thank you all for allowing me to share, and my hopes and prayers are with all fighting this disease.

[Pepperink]

Re: Multiple myeloma with lung involvement at diagnosis

by Pepperink on Sat Sep 15, 2018 5:28 pm

What a sobering story. Your aunt was blessed with caring family around her.

Each of us facing our battle with multiple myeloma must approach the reality in our own way, but I'm sure we all wish so much that we could comfort you in some way.

Thank you for taking the time to update us while your heart is so heavy.