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  • in reply to: Surgery on Tuesday #60557
    mlepp0416
    Participant

    Prayers heading your way. Best of luck to you.
    Hugs,
    Margaret

    in reply to: My husband Chris #60538
    mlepp0416
    Participant

    Nicki: Welcome! You will find a lot of support from the people on this site. We are a very caring group of people and will give you as much support as you need with issues. A lot of us have a lot of personal experience having traveled the journey that you and Chris are now traveling.

    Once they are able to get Chris onto the correct antibotics to clear up the sepsis he should be getting stronger. My husband Tom experienced many bouts with severe infections/sepsis of the liver. Although he hated having to be on antibotics 6 – 8 weeks at a time, it was in his best interests. There were many times that I felt he would not ‘pull out of it’ but antibotics can do wonderful things.

    Having said that, surgery, Nanoknife etc may not always be an option. It depends upon the placement of the tumor. If the tumor involves the hepatic artery then surgery is NOT an option. Simply too dangerous. When my husband Tom re-occured his tumor was wrapped around the hepatic artery therefore surgery wasn’t an option. He did go through radiation and chemo for that tumor. You may want to discuss the option of radiation with Chris’ doctors.

    Hope this helps. My thoughts and prayers are with you and Chris.
    Go with God, and KEEP KICKIN’ THAT cancer.

    Margaret

    in reply to: Could this be possible? #60164
    mlepp0416
    Participant

    It really pays to know the doctor’s well when your body is experiencing issues. I had my liver ultrasound this morning at 9am.

    I ran into Tracy, one of the nurses that works w/Dr. Dempsey – he was the one that did all of Tom’s Tube exchanges….as soon as Tracy told him that I’d been in for a Liver Ultrasound, he went to check it out and compared it to a CTScan that I’d had done some years before…he told Tracy to give me a call (He had another surgery coming up or he would have called me himself) and let me know that he could not see anything that had changed from the previous scan and everything looked totally normal.

    He wanted to put my mind at ease as he knew that I’d be worried!

    AWESOME Customer Service and it also shows that Dr. Dempsey is one heck of a doctor! Now I just have to wait for the blood work – they are checking for hepatitis, etc. I know that will take a bit longer. But so far, I am relieved that it appears to be nothing so far! Finger and Toes still crossed!

    I will let you know more after I get the blood test results back!

    Hugs,
    Margaret

    in reply to: Father in Law #59627
    mlepp0416
    Participant

    I am so sorry to hear of your loss of your father in law. My thoughts and prayers are with you and your family.

    Hugs,
    Margaret

    in reply to: Avastin #60364
    mlepp0416
    Participant

    Jtoro:

    The first thing that you have to do is get a copy of the insurance denial letter. Most insurance companies also will send a courtsey denial letter to the patient as well.

    You physician can ask for a peer to peer review with the regional medical director of your insurance company. Once that happens, many times the insurance company will then authorize the medication.

    You can also appeal the denial, but your doctor or your doctor’s physician will/should know how to appeal the denial of the medication.

    I would advise you to obtain a copy of the denial letter, speak to your doctor or your doctors assistant and request them to appeal the denial or to ask for a peer to peer review. Your insurance company should also have a Medical Intake Team that may be responsible for denying the medication.

    You can also call your insurance company and ask why it was denied and what you or your doctor have to do to appeal the denial.

    Let me know if you have any further questions.

    Margaret

    in reply to: Fever #60231
    mlepp0416
    Participant

    Gavin:

    Tom did the same thing. He passed on a sunday but on Saturday he was alert and talking. His daughter and her husband were here, putting the lights on the two Christmas trees. He wanted two trees last year, one on each side of the fireplace. He neve got to see them decorated, but he did get to see them with the lights on. That surge of energy lasted most of the day and he was very alert.

    The next day was a complete turn around, and as the day progressed I kne hat the end was near. He passed about 3 hours after my daughter Kathie and her husband Kent and their two children arrived. On Saturday he commented, “I can’t go yet, I haven’t see Kathie, Kent, Kaylah and Kole”. he was in a coma like state but I really believe that he knew that they had arrived and that it was OK for him to go to his eternal rest. He knew that I was not alone.

    Margaret

    in reply to: Greetings from the Lone Star State. New to this board. #60312
    mlepp0416
    Participant

    Boost Plus is also an excellent supplement for those necessary calories. A bit pricey but very good if a person is unable to eat. The cancer center can give you samples and coupons! My husband Tom used to get 6 packs of the Boost Plus from his cancer center as well as coupons.

    Some days that is all he could tolerate. Snacking is also good, things with hight protein, peanut butter is a great one and most people like peanut butter! Unless they are allergic to peanuts. Hard boiled eggs, crackers and cheese.

    Even it your mom is ‘not eating’ it is Okay. She will eat eventually, when she is able too. Ice Cream is good…and when Mom requests something try to get it for her.

    Hugs,
    Margaret

    in reply to: Everything has changed #60330
    mlepp0416
    Participant

    Donna:

    Welcome to the site that no one really wants to join! Feel free to post questions, rant and rave, etc. That is why we are here. My husband Tom also had CC and just passed away 5 months aog.

    I have a lot of knowledge about Insurance as I work for a major insurance company and also have ton’s of knowledge based on what my husband went through.

    All you have to do is ask!

    Hugs and a tidal wave of suport coming your way.

    Margaret

    in reply to: Could this be possible? #60160
    mlepp0416
    Participant

    Ultra sound of the liver set for Tuesday and the blood workup. Will post as soon as I know the results!

    in reply to: Fever #60227
    mlepp0416
    Participant

    Lainy: No I do not unless it’s part of the dis-orientation? It did not explain that in my little booklet.

    in reply to: Farewell Dad #60299
    mlepp0416
    Participant

    My thoughts and prayers are with you and your family.

    God saw he was getting tired
    and a cure was not to be.
    So he put his arms around him
    and whispered “Come with Me”
    With tearful eyes we watched him suffer,
    and saw him fade away.
    Although we loved him dearly,
    we could not make him stay.
    A golden heart stopped beating,
    hard working hands to rest
    God broke our hearts to prove to us
    He only takes the best.

    Hugs,
    Margaret

    in reply to: Fever #60224
    mlepp0416
    Participant

    This may help and give some insight. I received a little booklet called ‘Gone from my sight, the dying experience’ by Barbara Karnes.

    This is only a guideline, nothing is concrete, all is very, very flexible. Death comes in its own time, in its own way. Death is as unique as the individual who is experiencing it.

    Changes begin 1 – 3 months before death occurs. The actual dying process begins within the two weeks prior to death. There is a shift that occurs within a person that takes them from a mental processing of death to a tru comprehension and belief in their own mortality. Unfortunately, this understanding is not alway shared with others.

    One to two months prior to death: Withdrawal
    This is the beginning of seperation, first from the world. No more interest in newspapers or TV, then from people, no more visitors then children, grandchildren and perhaps even those person most loved.
    This is becoming a time of withdrawing from everything outside of one’s self and going inside. Inside where there is sorting out, evaluating one’s self and one’s life. But inside there is only room for one.

    This processing of one’s life is usually done with the eyes closed, so sleep increases. A morning nap is added to the usual afternoon nap. Staying in bed all day and spending more time asleep than awake becomes the norm. Know that important work is going on inside on a level of which ‘outsiders’ aren’t aware.

    With this withdrawal comes less of a need to communicate. Words connect to the physical life that is being left behind. Words lose their importance, touch and wordlessness take on more meaning.

    Food:
    Energizes our bodies, it is the way we keep our body going. We eat to live. When a body is preparing to die, it is perfectly natural that eating should stop. This is one of the hardest concepts for a family to accept.

    There is a gradual decrease in eating habits. Nothing tasts good. Cravings come and go. Liquids are preferred to solids. Meats are the first to go, followed by vegetables and other hard to digest foods, until even soft food are no longer eaten.

    It is okay not to eat. A different kind of energy is needed now. A spiritual energy, not a physical one, will sustain from here on.

    1 – 2 weeks prior to death:
    Sleeping is most of the time now. A person can’t seem to keep their eyes open. They can, however, be awakened from that sleep. There is literally one foot in each world. A person often becomes confused, talking to people, and about places and events that are unknown to others. They may see and converse with loved ones who have died before them. There may be picking at the bedclothes and have agitated arm movements. There is a seemiing aimlessness to all physical activity. Focus is changing from this world to the next; thery are losing their grounding to earth.

    Physical changes:
    There are beginning changes that show the physical body is losing its ability to maintain itself.
    The blood pressure often lowers
    Changes in the pulse beat, either increasing from a normal of 80 to upward of 150 or decreasing anywhere down to zero.
    The body temperature fluctuates between fever and cold
    Ther is increased perespiration, often with clamminess
    The skin color changes: flushed with fever, bluish with cold. A pale yellowish pallor often comes with approaching death. (not jaundice) The nail beds, hands and feet are often pale and bluish because the heart can’t circulate the blood through the body at a normal flow.
    Breathing changes also occur. Respiration may increase from a normal 16 – 20 to upwards of 40-50 breaths every minute, or decrease to 9 or even 6 breaths a minute. There can be a puffing, a blowing of the lips on exhaling, or actual stopping of the rhythmic breathing only to resume. This generally occurs during sleep. Congestion can also occur, a rattly sound in the lungs and upper throat. May be coughing, but nothing can be brought up. All breathing changes come and go. One minute, any or all of these symptoms can be present, the next minute, breathing may be clear and even.

    One to two days, to hours prior to death:
    Sometimes there is a surge of energy. A person my talk clearly and alertly when before there had been disorientation. A favorite meal might be asked for and eaten when nothing had been eaten for days. A person might sit and visit when they hadn’t wanted to be with anyone for quite a while. The spiritual energy for transition from this world to the next has arrived and it is used for a tiime of physical expression before moving on. The surge of energy is not always as noticable as the examples, but in hindsight, it can usually be recognized.

    The one to two weeks’ signs that were present earlier become more intense as death approaches.
    Restlessness can further increase due to lack of oxygen in the blood.
    The breathing patterns become slower and more irregular. Breathing often stops for 10 – 15 and even 30 – 45 seconds before resuming.
    Congestion can be very loud. It can be affected by positionin on one side or the other. it still comes and goes.

    The eyes may be open or semi-open but not seeing. There is a glassy look to them, often tearing.

    The hands and feet now become purplish. The knees, ankles and elbows are blotchy. The underside of the arms, legs, back and buttocks also can be blotchy.

    Generally a person becomes non-responsive (unable to respond to their environment) sometime prior to death.

    How we approach death is going to depend upon our fear of life, how much we participated in that life, and how willing we are to let go of this unknown expression to venture into a new one. Fear and unfinished business are two big factors in determining how much resistance we put into meeting death.

    The seperation becomes complete when breathing stops. What appears to be the last breath is often followed by one or two long spaced breaths and then the physical body is empty. The owner is no longer in need of a heavy, nonfunctioning vehicle.

    They have entered a new city, a new life.

    Summary of guidelines:
    1 – 3 months:
    Withdrawal from the world and people
    decreased food intake
    increase in sleep
    going inside self
    less communication

    1 – 2 weeks:
    disorientation
    agitation
    talking with the unseen
    confusion
    picking at clothes
    Physical
    decreased blood pressure
    pulse increase or decrease
    skin color changes; pale/bluish
    increased perspiration
    respiration irregularities
    congestion
    sleeping but responding
    complaints of body tired and heavy
    not eating, taking little fluids
    body temperature: hot/cold

    Days or hours:
    intensification of one to two weeks’ signs
    surge of energy
    decrease in blood pressure
    eyes glassy, tearing, half open
    irregular breathing: stop/start
    restlessness or no activity
    purplish, blothcy knees, feet, hands
    pulse weak and hard to find
    decreased urine output
    may wet or stool the bed

    Minutes:
    ‘fish out of water’ breathing
    cannot be awakened


    As I look back and reflect on the last days of my husband Tom’s life, all of these things were present, at the times this booklet says they would be. I hope this information can be of some help to those facing the loss of a loved one.

    Go with God, Love and Hugs,
    Margaret

    in reply to: Survival #60236
    mlepp0416
    Participant

    During my husband Tom’s journey, the stats go something like this.

    1 in 200,00 present with Cholangiocarcinoma
    of those 5% are elibible for resection
    of those 1% will experience a re-occurance

    It is a rare cancer. My Tom was a rare kind of guy and he hit all of those stats. Per the research that I did, a liver transplant for CC patients is very rare because this cancer can, will and does re-occur, even with a transplant.

    Liver’s are ‘hard to come by’ so they do not like to do transplants with a CC patient because studies have shown that even with a transplant the CC can re-occur. And, even with a transplant, studies have shown that the life expectancy does not change with a transplant. The studies that I read stated that transplanting a liver into a CC patient does not change the 5 year survival rate.

    Sad, but oh so true. My Tom fought the battle of his life and his battle ended after 3 years and 8 months. My only hope is that the doctors and oncologists are learning more about this cancer and how to fight it and to increase the odds!

    I think that one should not focus on the stats, just keep the faith. Tom never gave up but eventually his body just started shutting down, he fought till the very end. And the doctors can be wrong! They gave him less than 6 months and he lived almost 2 more years to the day. I was grateful for every day that we had for those 2 years.

    Go with God and KEEP KICKIN’ THAT cancer!

    Love and Hugs,
    Margaret

    in reply to: Could this be possible? #60158
    mlepp0416
    Participant

    You guys and gals are the BEST! I’m so glad I’m part of this family.
    Love and hugs (and I will keep you posted as I learn more)

    Margaret

    in reply to: Weakness #60178
    mlepp0416
    Participant

    Theresa:
    Elevating the legs, massages from the toes upwards to the knees may help with any discomfort from the swelling. (I used to do this with my husband Tom when his feet and legs swelled) Compression stocking can also help (Walmart for about $20)

    Also some medications can also help as Marion mentioned. Paracentesis is a simple procedure for fluid in the abdomen but your husbands doctor would have to order it.

    ASK QUESTIONS! Your husbands doctors should be able to answer them.

    Hugs,
    Margaret

Viewing 15 posts - 16 through 30 (of 726 total)