Listed On Charts: Prognosis: Terminal

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  • #9052

    Anonymous

    Hi All,
    I check in every now and then–so many new people, which is too bad.
    Just letting people know the few where CIDP cannot be stopped and decline to a prognosis labeled TERMINAL.
    Been dealing with this for a decade, with the CIDP attack on the autonomic system.
    Been through ALL the protocol of treatments, with the exception of stem cell treatment. In September, I was told I would be evaluated for stem cell transplant–but the bad news with that, was that I was told that with such advanced CIDP, that most damage will not repair, and my only hope would be to put it into remission. Ah-but they tell me I have to be “sick enough” to get the SCT, but yet be “well enough” to make it through, with one of the top neuros in the country having doubts that I am not “well enough” to make it through. Ah well–but I told him I want to go through it for shits and grins, as I have nothing to lose at this point.
    Each month, something new happens now. The latest being, in two weeks, I will go from having a foley catheter, to having surgery for a super-pubic cather, as the total loss of bladder/bowel became worse. It is quite embarrassing to have to wear “diapers” {depends}, even though I have a foley catheter.
    And it hit the nerves controlling the eye muscles, giving me Strabismus, (seeing double), so I just had to shell out $650.00 for permanent glasses with prisms in the glasses, compared to the temporary stick-on prisms that weren’t working. Health insurance doesn’t cover glasses.
    And I am now on Morphine round-the-clock, with other pain meds when the pain becomes too bad–they want to keep me as comfortable as possible., as well as oxygen 24/7. Though it hit the phrenic nerve thus causing shallow breathing, I still smoke. It relaxes me, and my doctors see my point when I say, “What’s the diference at this point”, of which they agree.
    My primary care doc told me I was ready for hospice, but I told him “not yet–I will tell him when I am ready for that”.
    Swallowing is getting worse, and I only eat once every other day or so–am down to 157lbs, having been 205lbs in January. Was told when I get to 150lbs, it is time for the feeding tube. One doc listed me now as “gaunt”. and my partner is having the hardest time with me seeing me deteriorate to “skin and bones” in front of his eyes. But I have NO appetite whatsoever.
    Was on Cytoxan for 2 1/2 years, which slowed the progression, but not into remission. By being on it for so long, it did some damage to my body including mild kidney damage, and partially caused osteporosis in the spine with compression fractures, needing nerve blocks now and then as well as steroid injections.
    I’ve lost total use of my left hand-I use my index finger there to type…slowly. No strength at all-cannot even separate the fingers. And same with my left foot. But I have an electric wheellchair.
    Being off the Cytoxin now, I see the CIDP progressing faster again.
    Just had 9 weeks of Rituxin back in March/April, of which I called “Koolaid” since I knew it would not help me. But that is why the said I had to wait until September for the stem cell transplant evaluation. But waiting to ’til then, I continue to get worse. My neuro has already put in the consult again with my insurance, to see that top neuro, who will be in charge of the stem cell procedure. He is trying to rush it now, since there is nothing left to do.

    I have all good docs. We tried everything, but it didn’t work. I am one of the 5% that won’t make it through. They are all at the stage now of trying to keep me as comfortable as possible.

    And I think the CIDP has pushed my osteoarthritis worse as my joints are getting worse faster, with steroid injections being needed sooner than the 6months like it used to.

    Monthly boodwork is not good anymore. Another blood infusion will probably be coming up soon.

    I am happy for those of you where the diferent protocal of treatments have helped you. But that is why I don’t come here that often anymore–it kinda puts it in my face where I failed. The very few of us with advanced CIDP probably have the same feelings, since every year a few of us pass on.
    But I am ready for all that–Advanced Directive in order, Power of Attorney for my life partner in order, and what little life insurance I was able to get through AARP “no questions asked” is in order for my life partner.
    I feel the most bad feelings for him, as he watches me deteriorate in front of him. I am in a separate room in a hospital bed, with a 24/7 bi-pap as needed, and the oxygen, which he hates being separated. We are very close, and he is taking good care of me, having to deal with lidoderm patches, and bedsores that he attends to.
    Luckily, I still have strenghth in my right arm/hand, as I no longer have the strenghth to have a simple bowel movement, and must use a glove. I will feel terrible if he will have to take over doing that if I get too weak to do it myself.

    This CIDP has not been kind to my body. This is to let some of you new folk let you know how bad CIDP can get. As I mentioned, we lose a couple a year–some I knew from being on the site for so long. Doc David is the first that came to mind.

    If anyone has any questions about the different procedures, just ask me–I can give exact details on what to expect, since I’ve been through ALL of them. The worse one I hated was the high-dose prednisone therapy–it felt like my body wanted to jump out of my skin–it really whacked me out.
    And I got to know all the nurses on the Oncology ward at the local Medical Center, of which I would review with them each treatment what was supposed to happen and get, since I was so used to the treatments, and they thanked me, when certain details were missing on an order sheet, that I caught what was missing.
    And my indirect family, (cousins and aunts) have become closer now, (I am the last one alive in my direct family of father/mother/and 2 younger brothers). And a good, god friend from Holland now comes in from Holland every Christmas, not knowing if this will be my last Christmas, since that is my most favorite part of the year. She now wraps all my presents, since I don’t have much coordination for that anymore. And helps my partner with the cooking/cleaning.

    Like I said-if anyone has any questions, just through them out to me. I can tell you ALL the different parts of the body it can hit, if it hits your autonomic system. And the different pills/doctors that go with it.
    One MAIN thing you HAVE to have, are GOOD doctors to take care of you.
    If I did not like a certain doctor, I would switch. It took about 4 different neuros before I found the “right one”, (he is head of Neurology at the local medical center). And you need a GREAT primary care doctor, (which I think I have a fantastic one).
    Take care everyone, and I hope to pop in every now and then.
    All the best,
    Ken
    (KEDASO)

    #93643

    Ken, thank you for taking the time and making the effort to update us and for the sober reminder that CIDP is horrible. I know how hard it is physcially for you to type. Know that you’ll be in my thougths and prayers. I agree with you that there have been too many of us who have passed on.

    I visited my neuro last Friday, talking with him at length about CIDP, what they “know” about it, research and research funding … the bottom line was that in the eyes of those who fund research “CIDP is a extreemly rare syndrom that has effective treatments” so it’s not at the top of the funding priorities. (That position is a hard sell to those of us who have CIDP!)

    The steps of the justification process to receive treatments are ludicrous. One has to be sick enough, but not too sick … 😡

    So, I’m sorry to hear your prognosis is terminal, but I will also hold out hope that you’re well enough to survive the stem cell process and that it is effective.

    Please keep us updated as you are able; we care …

    Gary

    #93646

    Anonymous

    [FONT=”Georgia”]Much love and hugs and hope are going out to you, Ken.

    I don’t know what else to say. I’m so sorry that you have had to deal with such horror as is your CIDP.[/FONT]

    #93647

    Anonymous

    Ken,

    Thank you for the update as hard as it is for you to type now. Have thought of you and wondered how you are in between your postings.
    I will pray that the SCT is rushed and you will be well enough to have with effective results.

    Your partner is a great caregiver. When we are healthy and in love we never dream that our loved one would be a caregiver to our every need while watching the body of their loved one deteriorate. When are in love, we care for one another.

    Look forward to a SCT and a Merry Christmas.

    Will be praying for you.

    Shirley

    #93654

    Anonymous

    Ken Sorry to hear about what’s been going on with you. Ryan and I talk about you often. wondering how you are doing. We really hope that you get to do the stem cell transplant and we pray that it helps you.
    Please keep us updated when your able. we are praying for you and your partner for strength and comfort and that you will get better.

    Rhonda & Ryan

    #93659

    Anonymous

    You were the only one to welcome me at times and places long ago. And you encouraged me to LEARN! And I have. I just wish things were better for you now. Truly.
    Your experiences are why I encourage people who have doctors who do NOT diagnose according to protocol to go out and get second opinions! It was my THIRD opinion that saved my life, literally!
    Because of you, I learned about each treatment their advantages or not, and came to reasonable conclusions for that point in time. And because of you? I knew when things could work or not? And that I’m NOT gonna have this go away overnite anytime in the future. [DURN!]
    So, I’ve approached each treatment with a somewhat cynical optimism and if it’s half-way? That’s a plus overall IMHO.
    My heart is with you always! Hugs and good things in the interim!

    #93664

    Anonymous

    hey bro,
    first of all May the good Lord grant you some peace.
    what else to say, hard to do.
    I can tell you what I know from experience.
    When that day we’ve all been promised comes,
    the only thing is this world that matters is Love.
    I want you to know I love you, and God loves you. So fear not, and be strong,
    for God is with you always.

    I Love you

    soapy

    #93665

    Anonymous

    I am heartbroken from reading this…… Who has the power to say if you are too sick or not sick enough??????? My doctors didn’t want to treat me with IVIG because I was not sick enough. The years passed on and I lost feeling in my hands, feet and the pain has gotten unbearable at times. I have been sick for 8 years now and just started getting IVIG. I was only given IVIG because 1 neuro out of 12 said he didn’t want me to get “sick enough for treatment” meaning that he didn’t want me to end up in a wheelchair. I have 2 little girls, ages 4 and 2 of whom I have missed so much of their lives because of this damn disease! I have had 3 IVIG treatments since January. The first one made me feel like Super Woman. THe next 2, didn’t really do much. Now my doctor wants to go back to conventional mediications of which I have been on them all without any relief. I too was on steroids and I became viscious. Along with the normal neurontin, lyrica, cymbalta, savella, etc….. None have worked. The only hope that I hold on to is that I one day will feel the way I did after my first treatment. My neuro said that if the next IVIG doesn’t work, he is out of ideas??? What does that mean??? How can he be out of ideas/treatments??????? I am 34 for Gods Sake!!! I want to see my children grow up. I am tired of living on morphine, but that is all that they can give me know inbetween treatments.
    God, I am sitting here crying for you. My heart goes out to you, your partner and all those who help you. I pray you make it to your SCT. And I am not a person whjo prays, but Ken, I am praying for you………

    #93666

    Anonymous

    I am heartbroken from reading this…… Who has the power to say if you are too sick or not sick enough??????? My doctors didn’t want to treat me with IVIG because I was not sick enough. The years passed on and I lost feeling in my hands, feet and the pain has gotten unbearable at times. I have been sick for 8 years now and just started getting IVIG. I was only given IVIG because 1 neuro out of 12 said he didn’t want me to get “sick enough for treatment” meaning that he didn’t want me to end up in a wheelchair. I have 2 little girls, ages 4 and 2 of whom I have missed so much of their lives because of this damn disease! I have had 3 IVIG treatments since January. The first one made me feel like Super Woman. THe next 2, didn’t really do much. Now my doctor wants to go back to conventional mediications of which I have been on them all without any relief. I too was on steroids and I became viscious. Along with the normal neurontin, lyrica, cymbalta, savella, etc….. None have worked. The only hope that I hold on to is that I one day will feel the way I did after my first treatment. My neuro said that if the next IVIG doesn’t work, he is out of ideas??? What does that mean??? How can he be out of ideas/treatments??????? I am 34 for Gods Sake!!! I want to see my children grow up. I am tired of living on morphine, but that is all that they can give me know inbetween treatments.
    God, I am sitting here crying for you. My heart goes out to you, your partner and all those who help you. I pray you make it to your SCT. And I am not a person whjo prays, but Ken, I am praying for you………

    #93667

    KatyK
    Member

    Ken, I have been thinking of you lately and wondering how you’re doing.
    I am so glad to hear from you. Please know that even though I have lots of hope that the stem cell will help you I am still relying on prayers and the powerful energies that this forum has formed for those with CIDP.
    I love you because I admire your mind, your awareness and your deep concern for others. Please give a hug for me to you wonderful caregiver.

    #93672

    Anonymous

    Ken you are in my prayers. I am sorry that things are so rough for you. Thanks for letting us know how you are when it must be difficult and a struggle for you to write.
    Laurel

    #94363

    mhaddix
    Member

    Ken, Thank you for being so open with your struggles. My prayers are with you. Our daughter has had CIDP for almost 10 years and i’m afraid she might be in the 5% category.

    #94418

    Anonymous

    I am sorry to hear all that you are going through Ken. I hope you get the stem cell treatment.

    I am so glad you have such a loving partner to help you through this. I know he is suffering watching you getting worse. But when you love somebody you will do anything for them.
    So thank him for me for being so good to you and sticking by you during this difficult times.

    Sue

    #94426

    Anonymous

    Ken – you have put forth a great fight with this horrible disease, and I am proud of you. Your partner is so loving and caring – bless him! I am praying that the SCT will make the difference. You have been such a shining star on this site and I have so appreciated the wisdom you have shared! 🙂 Keep sharing as much as you can. Perhaps you could “dictate” to your partner so that we can stay informed.
    I do care that you are suffering so and will keep you in all of my prayers. With hugs, Judi

    #94502

    Anonymous

    Ken,
    How you have suffered, it is just not right or fair, but I have learned that life is not fair. I was also in that 5%, I remember after 4 months of being inpatient at Mayo back in 2002 (my 4th hospital, supposed to be the best in the world?) when the team of 5 neuros came in & said that there was nothing more they could do for me. They told me that my death would be much like ALS where the nerve destruction would eventually go into my diapragm & lungs & I would not be able to breathe anymore.

    I was just fortunate that my husband was able to get me into Dr. Gareth Parry in 2002 at the U of MN who put me on 9 months of cytoxan infusions. Today I still have to sleep a lot, wear AFOs & take a cane with me, but my life is otherwise fairly normal. My CIDP was arreseted & I had 2 years of nerve healing, allowing me to walk again & get most of the use of my hands back. Ryan is going through the nerve healing process right now. I wish you would have been able to get the cytoxan ifusions sooner in your treatment program. I will pray for you that you can bear this stage of CIDP…

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