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  • My sister's story, myelofibrisis, BMT

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    Old 06-01-2013, 12:00 AM   #1
    Join Date: Apr 2005
    Posts: 83
    cheeto3 HB User
    My sister's story, myelofibrisis, BMT

    This is my sister's story, long but I needed to tell as much as I could:
    (Note:I certainly do not want to deter anyone from life saving practices or a BMT)

    My sister had ET for many years and was on medication through her (Oncologist) Doctor but unfortunately it finally turned into Myelofibrosis in 2011. Her spleen ended up being hugely enlarged and her blood counts were all over the place so it was decided she would undergo a Bone Marrow Transplant. The Doctors agreed that she was very healthy despite the ET and at 56 years old a very good candidate.
    My sister lives in Seattle so we heard Seattle Cancer Care Alliance was one of the best facilities for her to undergo her BMT. My younger sister and myself were the only ones tested for a match which we were not unfortunately. So the Doctor went to the World Bank which he did find a 9 out of 10 match. My sister underwent very aggressive Chemo & Radiation and then had her BMT Sept-13- 2011.She stayed in SCCA for a few weeks and was released back home as they said she was a Star Patient.
    I was her Primary Care Person and looked after her taking her back and forth to SCCA every day, hooking her up to the IV to hydrate her (only if you want to do it at home if not you can go and get it done at the hospital but way easier for us).
    I also cleaned meticulously at her home due to her having next to no immune system after a BMT. Along with all the other household duties to help her.

    I am a Canadian so the border guards were giving me such a hard time each time I crossed as I was only allowed to stay in the US for 6 months and had already been there for a month and a half waiting for the transplant.

    By the time I had to leave we all thought my sister was on the "Road To Recovery" and I would never have left her even though I was not allowed to be in the States if I didn't think this was true.

    Over the next 6 months my sister's white blood cell count was good but the red blood cell count was always low so she had to continue going in for Blood Transfusions every few days which by all standards was not great but all good as long as her health was getting better.

    By the end of July 2012 her daughter got married and she didn't have a lot of energy but was in pretty good shape to attend the wedding of her only daughter which we are all so thankful for.

    Things were getting progressively better each month after that with a little GVHD here and there but nothing hugely serious. I went to visit my sister again just before I left for Mexico at the end of November 2012 and we even had a few drinks as she felt that good. I then left for Mexico in December 2012 feeling good for her knowing I would be contacting her all along but all was going well.
    I January I heard that my sister had the Flu which we all had heard was a bad one that year. Well she had the bad Flu but she was also in excruciating pain where my brother-in-law ended up taking her to the Hospital in Edmonds, WA where she lives. I was thankful for that as I figured they would go through the all tests pertaining to her BMT to rule out any known extenuating health issues.
    The Doctors ended up chocking it up to the Flu then gave her Tamiflu and sent her back home when things seemed a bit better.
    The Flu symptoms subsided and the pain too for a bit but then she figured it must be Sciatica that is causing the ongoing pain. The Doctor prescribed Morphine, Dilaudid and I am sorry for not recalling the name of the other major pain killer but another Major drug for what they thought was Sciatica (are you kidding!).

    (Just a note that I have had major sciatica resulting in a herniated disc with excruciating pain and NEVER had that amount of painkillers before or after my herniated disc surgery).

    My Mom & Dad ended up going down to look after her as she had never asked but when my Mom said "do you need help" she said she did which is when you know my sister is in dire need of help as she has a high level of pain and never complains.

    I got back from Mexico and drove straight down to my sisters to take over from my parents who are in their 80's and may have needed a break. I took one look at my sister and wondered what the heck had happened as she looked so frail from when I had left. She said her pain was in her back but then it seemed to travel to her arm, legs and pretty much all over.
    The next day I was there my sister could not get out of bed or even move much with the intensity of pain so I put a call into the (Oncologist) Doctor but no reply.
    On the next day I was annoyed and asked her husband to call the (Oncologist) Doctor as he may only want a call from him, no reply from him again but his staff said maybe my sister should go to Emergency.
    At that time my sister had not been eating so I was attempted to spoon feed her food, she couldn't drink water without me putting a straw in her mouth as she could not lift her head or even drink from a glass, move, nothing without major pain.
    So we ended up calling 911 but her pain then was 10 out of 10 so they needed to get EMT in to give her more drugs that the doubled up pills of Morphine, Dilaudid and the other pills the Doctor had said to take were not giving her any relief.
    The EMT's arrived and I will never forget the screams of pain even after her getting the maximum IV pain drugs on top of the doubled up drugs she was given at home when they put her on a gurney to take her to the hospital.
    I found out after she died that there is a percentage that a patient could contract Leukemia after a BMT but we never knew this until after it was too late.
    My sister was diagnosed with Acute Leukemia March 31 2013 and was told she could choose Chemo or just do nothing and die as it was such a low percentage of survival. My sister thought through it and we had a conference call April 1st at 2PM with our family saying that she would not do the Chemo as she was too weak and had gone through too much pain and suffering at this point.
    My sister DIED April 3rd at 9:20AM.
    IF my sister had decided on March 31st or even April 1st to take treatment she would never have had a chance.
    I am not a Doctor for sure but if a trained Doctor could have recognized the symptoms like I do now know we may still have my sister with us today.
    I just want anyone else out there to know what to look for and be aware...

    Signs and symptoms of acute lymphocytic leukemia may include:
    The most common symptoms associated with both chronic and acute lymphocytic leukemia are Flu-like Symptoms.
    A patient with this condition has no or low levels of functional immune cells, making it more difficult for the body to fight off common infections. As a result, many lymphocytic leukemia patients experience persistent flu-like symptoms, which can include fever; excessive fatigue; Bone, Joint or Muscle Pain; swollen lymph glands; and sweating or chills, explain health officials at both the Mayo Clinic and Medline Plus, an informational health website established by the National Institutes of Health. Flu-like symptoms may arise suddenly (acute) or progressively (chronic) and can worsen over time

    I just don't get it that the Oncologist's never recognized the symptoms in January 2013 where they may have been able to do something for my sister. It was too late on March 31st as my sister was severely weakened and had suffered through excruciating pain for months right up until her death on April 3rd 2013.....

    Last edited by cheeto3; 06-01-2013 at 12:28 PM.

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