Near the end :(

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    • #106983
      Anonymous
      Inactive

      Hi. I’m new here, my name’s Sloan, I’m 15, and my mom has CIDP. This will be a long read:

      My mom was diagnosed with an aggressive case of CIDP when I was 5, but she started having problems when I was 3.  When I was younger I almost lost my mom on multiple occasions because they hadn’t figured out how to fight her case of CIDP. Of course, I was so young I had no idea. I knew she was sick, but that’s all. By the time I was 8 or 9, the situation became basically stabilized. We had everything figured out. The drugs she’s allergic and not to, how often she needed treatment, etc. When I was 11, she was put in a wheelchair.  At the time, she’d go in the hospital once a month and stay for 2 days for IVIG. Over the years, it’s increased to 7, and stayed there. We’ve had a few bumps in the road, lots of problems with her port, having to get new ones, having too much scar tissue, etc. the most recent problem was repeat cases of MRSA in her lungs, and then pneumonia, which ended up with her left lung being partially paralyzed; now she uses an oxygen tank.

       

      To be completely honest, I never thought much of my mom being sick. It was normal for me, since I don’t remember her ever not being sick. But last year, I almost lost her. And now, I was old enough to realize it. I don’t remember what exactly was wrong, but it was horrible. The doctors didn’t want to listen to my dad, even though he knew exactly what my mom needs. He knows how much dilaudid, how often, and it’s quite clear when she’s in pain. My dad literally had to go to the hospital and be with my mom for a whole week, leaving my older brothers and i at home, to be sure the doctors didn’t screw anything up. Before they gave her any meds, they had to talk to dad. Dad made sure she got what she needed. If dad wasn’t there, I’m pretty sure those doctors would’ve ended up killing my mom.

      Now, I’m back in a similar situation. My mom went to the ER last night. She had terrible pains in her neck, her port was bothering her (and it had problems at the previous treatment) and I had accidentally given her bronchitis. She also had horrible stabbing pains in her eye, which has a cataract due to a way her body reacted with some kind of medication.  I’ve been texting my dad all day. They said it was a blood clot, and were going to do surgery to remove it. Now they say they have to remove her port. This is a serious issue. My mom has too much scar tissue to put in a new port. When my dad brought this up, they said they had to remove it, they’d figure out what to do about that later.  She also has my bronchitis, which of course, is hard for her body to fight. Even though she’s in her normal hospital, with the nurses we trust, doctors are still messing up the times she should be getting medicine. She’s in horrible pain.

      I hate to say this, but I don’t think she’ll live. Surgery is always a horrible risk for her, and even if they get her port out fine, what next? She has to have a new one, but there’s no place to put it. Before they left last night, I had a dream that they went it the hospital, the doctors mixed up meds, and she died. I told dad. He hugged me, and tried to comfort, but not once has he or did he said “She’s going to be fine.”  He has in all other situations when I’ve been scared for her life. To be completely honest, I don’t know what to do with myself. I want to ask Dad if she’s going to live, but I’m scared for the answer. I know if it was no, he’d tell me, but an I don’t know is just as bad. This may sound really selfish, but I’m too young to lose my mom. What am I going to do? I need her.

    • #106984
      GH
      Participant

      Your father doesn’t say “she’ll be fine” because he can’t know. Even the doctors don’t necessarily know. It’s better just to do the best that can be done, and accept the result.

      I’m wondering since IvIg has not brought her disease under control, whether other treatments ever been tried or discussed. Have they ever considered plasma exchange? I was switched to plasma exchange when IvIg did not seem to help much. After several PE treatments, I was put on a drug regimen which has controlled my disease. Of course one patient’s experience cannot be used to predict results for another with CIDP. But if one treatment doesn’t work, it is not unusual to try something else.

      Ultimately, there is the trial stem cell procedure for those for whom all regular treatments have failed. I’m not sure your mother would qualify for it, however.

      My thoughts are with you. I know how difficult it is to see someone close to you in this condition.

    • #106985
      Anonymous
      Inactive

      its not that the IVIG doesn’t work, it’s just my moms case is very severe and aggressive. She actually wasn’t expected to live this long, and apparently, she holds the record for  complete IVIG  treatment rounds done, she’s at like 156 now. (This is because once people hit a certain point they are usually under control or the disease had won.)Right now it seems everything we had previously fought has now teamed up to kick her while she’s down. I know she’s Oberon offered both plasma exchange and the trial stem cell research, but I believe the declined Both. I do not know why,

    • #107192
      Anonymous
      Inactive

      I’m so sorry you have to go through this Sloan.  My Mom’s on her 2nd bout bout of GBS and I know how scary it can be.

      Can your mom handle steroids?  They control the inflammation and help with the pain.

      Just so you know, because everyone’s body is different the standard protocol isn’t always appropriate and it’s necessary for family members or other primary caretakers to stay on top of everything that is being done.  Last time around I saved my mom 3 times from dying because of it.

      I wish I could tell you that everything’s going to be ok.  All I can say is hang in there sweetie and just give your mom all the love and support that you can.

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