Major Vent–countdown To D Day

    • Anonymous
      November 15, 2009 at 11:00 pm

      Hi all,
      My lifepartner is not doing well with accepting this.
      My body is deteriorating as time goes on.
      First, I like ALL my doctors–they are good doctors, I trust them, I listen when I talk to them.
      I have not had a good week at all.
      I have been on the Cytoxan, as my last possible type of treatment,
      fot over 2 1/2 years now. But, as I continue on this drug, though it
      slowed the progression of of my CIDP, it is weakening my body,
      and making my bone marrow in bad shape.
      I had my appointment with my neuro on Wednesday–everyone’s normal appointment lasts 15 minutes, due to insurance red tape. But I was with him for over an hour–discussing my declining health. Not good–nothing else he can do. If it turns out I will be forced to go off the Cytoxan due to declining blood labwork, then he said he’ll just put me on Rituxan, knowing it won’t do me much good, but it’s all he has left to use. He also just increased my pain med.
      Then, I had a bad call on Friday, with my Primary Care Physician. I am really becoming sick–constant nausea and no eating. I am using my Bipap more and more, day or night. I am at extreme high risk for infections or bacteria, or even a cold can do me in right now, as my bloodwork is declining–my
      WBC is 2.2, and my ABSOLUTE NEUTROPHILS are way down to 926.
      My PCP wants me to use the Marinol, (Marijuana in a pill form), more often,
      though I only try to use it in the late afternoon, since it definitely gets me high-though feels better with the nausea.
      But I pushed him for an answer on this–How long do you think I have left to live? I told him I know doctors don’t like to give answers like that, but that I needed some help here, since I am getting worse. He did answer me, and I wasn’t ready for something so soon–he told me if the bloodwork continues downward, then maybe 7 months left.
      I then had him talk to my lifemate, to explain what he just told me.
      After the call, my lifemate didn’t want to talk about it.

      I had two younger brothers that I was close to, but have passed on.
      I was orphaned when I was 5 years old, and raised by a grandparent, who is also passed on. I am the last person alive in my family, so I have no family member to talk to.

      This is very hard on me. The countdown begins. I get my regular
      hospital admission on 20NOV, for my all-day infusion of the Cytoxan and all the meds that go with it. EXACTLY 10 days after, on 30NOV, I have to get my bloodwork. And about 4 days later, I am guessing 4DEC, I will know if my bloodwork will continue downward. And if it does, that means the 7month deathmark. My PCP is suggesting it may be soon time for him to order hospice care.

      I have known many of you for years now. Just talk with me.
      I’m gonna get ahold of a cousin I have that we keep in contact about
      once every two months or so…just to talk about this.
      I gotta just get stuff off my chest…it’s hard when a clock is ticking.
      I am not looking for pity. Just need to talk this out.

    • Anonymous
      November 15, 2009 at 11:08 pm

      [FONT=”Arial”][COLOR=”Sienna”]Talk. Anything you want or need to say. Any time. I’m absolutely positive we’ll all be here for you, wishing we could be close to physically touch you, but always touching you with our thoughts.[/COLOR][/FONT]

    • November 16, 2009 at 1:46 am

      God Bless you Ken!
      I have admired the compassionate help and the good sensible advice you’ve offered to those in need. A miracle is always possible for you. Could one of your Doctors contact Dr. Burt on your behalf?

      I am here for you Ken and I and all the wonderful members on this forum will support you, listen to you and talk with you about things close to your heart.
      Your inner strength and emotional resilience are remarkable.
      Please know you are in my prayers.

      P.S. “Hope springs eternal in the human breast.”

    • November 16, 2009 at 8:27 am

      Ken, I’m with Katy. May God bless you and bless you with miraculous healing. May God give you strength to continue to battle. I prayed for you this morning. Are you confident your neuro and PCP are giving you not only their best but THE best treatment(s)?


    • Anonymous
      November 16, 2009 at 2:13 pm


      I have the greatest respect and admiration for the folks at Hospice. They do a tremendous job in challenging times. I have seen many people refuse hospice help in those last months, but they are quite helpful, for both the patient and partners.

      My sympathies go with you. I wish I could help you work your way through. I can’t imagine the wide emotional swings you are going through.

      Over the years you have shared with others completely. You have been fair and informative. You have stood up for those that needed support and at times you have chastised those who would tear others down.

      Thanks for your friendship over the years. I am not giving up on you just yet… I hope that things with Rituxan work. It is all so hard on the body.

      Good luck friend. my heart goes with you

      Dick S

    • Anonymous
      November 16, 2009 at 3:27 pm

      You do have family. They are here on this forum. We are with you until we hear from you no more. As long as there is a thread of hope, we won’t give up.
      The angels will watch over you. We are here for your life partner too, Frank I believe is his name. We will support both of you in all ways we can.

      I hope all on this forum will start a prayer chain.

    • Anonymous
      November 16, 2009 at 8:22 pm

      Ken my thoughts and prayers are with you. Just a question or two please. Since your body cannot tolerate the Cytotoxan any longer, can you not come off that and then the doctor re-challenge your system with things like IVIG? I know that sometimes works with other conditions i.e. IVIG stops working, another drug is used, and then down the road they bring the IVIG back again.

    • Anonymous
      November 17, 2009 at 12:20 am


      Is there any way you can contact TV shows such as Dr. Oz, Oprah etc.

      Share your story with the world and see if somehow someway there can be help to find the treatment you need without the expense.

      Just an idea,

      Rhonda from Canada

    • Anonymous
      November 17, 2009 at 1:18 am

      my deepest regrets for your news. you are in my thoughts. the oprah thing is a long shot but so was this disease. I wrote oprah and the doctors and a few others about you. I dont know. have you searched for grants and charity organizations or contacted the foundation for leads in that area?

    • Anonymous
      November 17, 2009 at 10:41 am


      Thank you so much for sharing like you do…you are a God send to so many .

      I am sure you understand that Dr’s cannot pinpoint time with a whole lot of accuracy. My Dad was given 6 mos and lasted 5 years.

      I know you wont give up…and that is very important right now.
      I cant even imagine what you’re going thru.

      No pity…I’m here…we all are.

      Prayers in Nebraska,

    • Anonymous
      November 17, 2009 at 11:29 am

      Hi Ken,

      I’ve only been with the forum for a short time, but I do remember the informative answer you sent me the first time I wrote. The people here
      are great!! If I could be there, I would give you a big hug and just hold
      you for awhile. I don’t have any words right now, just my prayers. Heres
      one for you…..

      God, grant me the serenity to accept the things I cannot change.
      The courage to change the things I can
      And the wisdom to know the difference.

      Ms. Judy

    • Anonymous
      November 21, 2009 at 8:57 am

      [COLOR=”Navy”]Ken, Rhonda and I have checked out a CIDP facebook site … they’ve been discussing the stem cell program @ Northwestern.

      another poster wrote:[/COLOR]

      [I]Please call Northwestern for yourself. I have talked to several other people in the SCT program and all costs are based on YOUR insurance, they have all been slightly different. The prices I have heard others mention have been grossly over-calculated and disheartening to those contemplating the treatment (even myself!!) I was so scared to take that first step. Please call, write or email Northwestern directly about your own particular situation. Paula is SUPER nice.[/I]

      [COLOR=”Navy”]Paula is the research nurse for the study and she can provide you with all types of information. email: [email][/email][/COLOR]

    • Anonymous
      November 22, 2009 at 2:47 am

      Hi Ken,
      Sorry to hear of your crappy week and the news you were given to process.
      I feel for both you and your partner, and send prayers and positive thoughts that you are one of the ones the docs get it wrong, as good as they are – they still dont have the crystal ball!!!. As Connorsmum mentioned, often 7 mths can in-fact be a lot longer. Hang in there and keep in touch.

    • Anonymous
      December 1, 2009 at 9:15 am

      I have not been on the forum for several months and just today read your post. I am truly sorry to hear what you have said. And I am so sorry your partner is struggling too. Do you guys have a supportive network of friends that are there in your life? If not, maybe you can encourage your partner to use this forum as well. I am so glaad that you at least use this and know that we are here for you. Talking and processing is the only way through so keep letting us know how you are doing as long as you feel you can.
      I will be checking in regularly and if you would like to talk privately you can PM me anytime.
      You are in my thoughts.

    • Anonymous
      December 27, 2009 at 10:00 am

      Hi Ken,
      I just wondered how you are doing? You have been in
      my thoughts and prayers. I have been hoping that since
      the time you first wrote maybe a new med was found
      or a different treatment. I refuse to give up!

      Hopefully, all our prayers will be answered for you in this
      New Year! I wish answers for you that will keep you with
      us for many more years.

      Yours Truly,

      P.S. Write if you can. This forum has great people who
      can listen and help.

    • Anonymous
      January 1, 2010 at 10:29 am

      Hi Ken,

      No pity here, only empathy, compassion, and understanding. I know things must feel hopless right now, but I also know that with this disease things can take a turn for the better, just as quickly as they can take a turn for the worst. So, keep your chin up and have faith. You have an abundance of fellow supporters here for you or your partner. Let us know how you are doing. Warm thoughts and well wishes coming your way.