Hi all I am a 40 year old CIDP Patient that was diagnosed in May of 2015, after about 4 months of deterioration. As I read through many of your stories I realize I was very lucky on the diagnosis part but at the time it sure did not feel like it. I went from being able to do normal daily functions to being unable to walk, feed or bathe myself etc. The doctors would not even share what they thought was wrong so my muscles atrophied as I sat and waited for direction. So through all these struggles I learned that I need to be my own advocate, that no one else will do that for me.
About the same time I started with the CIDP symptoms my OSA "Obstructive Sleep Apnea" began to worsen to where I could not tolerate my CPAP. I was sent for a BIPAP Titration which took the Sleep assistants all night to come up with optimal settings but the recommended settings were so high and I was still having more than half the Apneas that I have without assistance (In case your wondering none of this is good). So with all of this said I was recommended to an ENT. He puts me on a bleed in of O2 to CPAP until we can figure things out. So while waiting for the appointment I continue to fall asleep whenever and wherever my body wanted to. At work, literally training a group of people I doze off while continue to read and everything, fall asleep while working at the computer and continue to click away and type while snoring. What the heck is happening to me? I cant sleep all night in bed, my hubby will wake up and I am sitting at the edge of the bed asleep. I fell off the bed numerous times hurting myself and trying to take out the TV in the process.
The ENT appointment was not very encouraging, my husband and I sat there while doctor tells me he cant even see my tonsils and Uvula because everything is so enlarged back there. He says he has two recommendations, Corrective surgery, removing my tonsils, Uvela and revising (Shaving down) the Palate which may or may not help me improve by 50%. He proceeds to tell me that the best option that he recommends is a tracheotomy, he would put a flap over so it can be closed during the day and it can just be opened at night so the fresh air can just skip everything that is blocked. I just stared at Dr. This cannot be right I am 40 years old, yes I am overweight but come on here a tracheotomy???
Needless to say I opted for the Corrective surgery which was scheduled for Dec 3rd. Dr said patients with Severe OSA spend one night in the ICU because there is a slight chance that their lungs may fill with fluid once the obstructions are removed. So surgery is scheduled for 7:30 AM my parents fly in to be with me Thursday and return home Sunday (Short visit to help me), my hubby also takes off Thursday and Friday so off we go Thursday AM. We do the standard surgery check ins get in to the loose gown that leaves nothing to the imagination. No Cath or anything its supposed to be a quick surgery. They wheel me away from my family and tell them the doctor will come get them and take them to ICU as soon as I am done, My parents wait 3 hours in the waiting room before my panicked mom finally finds a nurse to ask about my status. Apparently I had been in ICU alone for 2 hours and Dr did not get my family.
Well next thing I know it is Saturday morning and I am dreaming that my Chelsea 9 year old boxer is lying in the hospital bed with me, I open my eyes to my dad holding my hand and Josh and my mom off to either side of him. I have a huge intubation tube in my mouth and I can feel that my tongue is swollen and sticking out underneath the tube. I have a feeding tube down my nose and I cant talk. What the hell happened!! I quickly began writing and asking questions in my notebook that I thought I would only need to use due to throat soreness. Apparently on Thursday they had to heavily sedate me because I did not rest. Little did they know the morphine they were giving me was what was making me not rest. So Dr. told my family my lungs were just to weak from the CIDP and he did not see me coming through this without a tracheotomy, No one in all of the surgery discussions mentioned CIDP affecting my lungs what the heck is this now??? My parents and husband were devastated but I started fighting. Even though they were sedating me to keep me at rest I was fighting though it so If I could continue to fight no Trach will be needed.I believe I lost all of Thursday and Friday I dont remember any part of it.
Saturday they removed the Intubation tube first and placed me on O2. Sunday they had to remove the Cath so I had to start ambulating to go to the restroom, Umm they are filling me with IV fluids and making me drink water WTH, So nurse says my goal is to eat Popsicle and drink water. So my poor mom who has been with me in ICU for three nights already Is kept up all night unhooking all the machines and taking me to the bathroom. God forbid I have to cough because there I go off the the bathroom again (Its a woman thing guys!). I was hoping to be released the next day but nope not the case, Doctor said if I behave I can be released from ICU not the hospital :(. So I ambulate more, I am eating regular meals, drinking what I can and they even let me shower on Tuesday! Finally Dr says if I can keep my O2 up while resting I can go home so at 4 PM they let me go home.
Now I have to figure all of this out, I am at home resting trying to heal, the tonsillectomy surgery pain is horrible I feel terrible for little ones that cant tell you how bad they feel. I still struggle with deep breathes so out of no where I gasp for breathe. My Lung doctor sent me home this weekend with a pulse oximeter to measure my Oxygen levels in my blood while I sleep, I did however spend a lot of time awake last night on the first night and I saw that even going to the restroom or sometimes even sitting an resting my Oxygen level drops below standard saturations.
I had no idea that the CIDP would affect my lungs, Ive told me doctor many times that when I put the slightest pressure on my diaphragm I gasp for breathe and he thought that was strange. I just dont know what to do next or if I am headed in the right direction.