Good evening everyone.
Just as some are healing, the Foundation is losing a loved one. I never got to meet Donald, but talked to his brother quite often. Donald's brother found my name and got in touch with me at a very frustrating time. Donald didn't only have GBS--he was suffering from many other demons. He was being moved all over the state, too often. When Donald's brother got in touch with me, it was my goal to get him in contact with our patient advocate so this madness would come to an end. Though we wish things like this could happen over night, it didn't. Our patient advocate for the Foundation was working on Donald's case while Donald's brother was trying his hardest to stay sane. In the meantime, I provided as much support as possible. I never got to meet Donald because he was in Milwaukee and then Wausau. I was notified by Donald's brother tonight that he made his final transfer-- and that was to hospice. Donald's respiratory system was no longer taking to the weening off the ventilator-- infact, he was depending on the ventilator at a very strong level. The typical patient that is ready to ween is at about a 40% level. Donald was at a 60, 80, & lately 100% level. The doctor's agreed that it's time to let Donald go in peace-- his body will not be able to ever be off of the ventilator. Human's cannot live in this sort of state. Donald has suffered for far too long and deserves to spread his wings. I pray he goes to Heaven and watches over all of us for the rest of our lifetime, as I know he will. I will get to meet him one day and I look forward to that day. All of us GBS-CIDP patients will be together someday! Whether we're a survivor now or up in Heaven-- we will all be reunited. Donald, you will forever be in my thoughts and prayers. Thank you to Donald's family for reaching out and finding me-- I am your support system. This will never change. God Bless.
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Another beautiful weekend has come and gone and wonderful things went on. I surprised one of my patients yesterday! She had gone to a specialty center while she weened off of the ventilator and is now back at the hospital in the inpatient rehab unit. Sean and I were going to be in Madison for the day, so I decided it'd be a great day to stop at the hospital for 2 reasons-- 1 because Sean had never seen where I spent the glorious 58 days while I was suffering from GBS and 2, I wanted to surprise my patient. The surprise was a success! We were so happy to see each other and I about fell to the floor when I saw how great she looked. She has come SO far and is doing magnificent. Her rehab doctor told her 2-4 weeks and she should be returning home. Let me remind all of you that this patient is in her 60's. Her recovery is unbelievably remarkable. It comes down to 3 things: Personal strength of the mind, support from family and friends, and God. We spent an hour talking about our experiences and could have probably talked for 3 more.
After spending time with her, I brought Sean to the Neuro Intensive Care Unit that I was in for 5 1/2 weeks. If you don't remember, I met Sean after all of this happened, so he's only heard the stories. When we walked in he looked at me and said, "Is that a phone ringing?" I chuckled inside and said, "No hunny, any beeping that you hear are the monitors on every patient." Think about it, if the ICU has 12 rooms with patients on ventilators and heart machines, they're all beeping at the nurse's station. I also brought Sean to the rehab gym where I learned how to stand, walk, and climb stairs. He was pretty surprised-- an eye-opening experience for him. Happy Easter!
I hope you have enjoyed another joyful Easter. I went to church this morning and found that GBS has really settled in. I've realized it's more than just my personal experience-- it's about everyone else that has suffered or is suffering right now. My parents and I went to St. Joseph's in Baraboo, WI this morning-- a new church to all of us. It was beautiful and reminded us of IJP in Flossmoor, IL. We usually go to St. Cecelia's in Wisconsin Dells, but wanted to give this one a try. Mass was wonderful, the music uplifting-- i've never been so emotional before. Today I was emotional not only thinking about what I was going through 2 years ago on Easter, but all of the patients I now know. A 17 year old beautiful girl in Alabama was probably in church at the same time as me today, but with very little strength. She's the patient that just got out of the hospital last week. Knowing she was an athlete at this time last year--- it crushes my heart. My other patient, here in WI that I visited a coupe weeks ago is still in the hospital not allowed to celebrate Easter at home. Another patient I just got notified about from the Foundation-- I haven't spoken to her yet. But thinking of all of this makes me melt and fall apart. I was asking God today, Why? I know I won't ever get an answer, but I continually ask. It's just not fair. HOWEVER! There is Hope. Before Easter Brunch, I made a call to my patient in WI. I have never heard her voice because I visited her when she was on the ventilator. She answered the phone so strong-- my heart melted! I was SO happy to hear her voice. She's getting stronger and stronger each day. I'm so proud of her! An Easter blessing for me today. Please don't forget to keep praying for those who need strength and always remember to thank God. http://www.youtube.com/watch?v=Sk2ZtenJbbg
Check this video out! If you cannot reach the video by clicking the link, search 'Cluster of Guillain-Barre Syndrome in Yuma County raises concern'. This was just on the Phoenix, AZ news in December 2011. Research needs to be done-- GBS is affecting so many. Happy Good Friday to everyone! I hope the Easter Bunny treats you well.
I've been a busy bee over here in Wisconsin. I just recently started a 2nd job, so my weekdays are pretty packed. Once May rolls around i'll be working 2 jobs and also playing co-ed softball until August. You can probably tell I LOVE to keep busy! This is what keeps us healthy! :) While training at a new job and living my normal life, I received another GBS patient! As crazy as it may sound, adding more to my list, I get SO excited to see new names pop up in my email. It's a great feeling to know that this new patient will have someone very caring and supportive at their side. And that person would be me. I love being a Liaison and wish I had even more time for everyone. I am slowly trying to put my presentation together so I can have the meeting in Madison. I am pushing for May-- the meeting spot is still undetermined, but please stay posted! Once everything is set in stone, I will get the information on here immediately! Aside from the GBS/CIDP life, I am thankful that my nephew is ok. He passed out at baseball practice and was having multiple tests done today. It comes down to being like his "Auntie Em" (me!) Starting around junior high age, I was fainting sporadically. We first thought it was because I was getting over heated, but when it happened in Anatomy class my junior year of college, while sitting in the front row and not being hot whatsoever, I fainted and was taken to the emergency room. After many tests, they told me I was having Vasovagal Responses. It is basically a malfunction in the parts of the nervous system that regulates the heart and blood pressure. In Layman's terms: You get nervous about something and have a quick freak attack-- blood pressure goes up, not sending enough oxygen to the brain and fainting occurs. I deal with that every so often, but nothing major to worry about! We just can't be worry warts!! :) Based on my nephew's tests, he's fine. GOOD NEWS! :) I want to wish everyone a very Happy Easter-- Happy Saturday!
Great news today! One of my patients is going home today! I am so happy how far she has come. I first found out on Facebook that she was admitted and diagnosed with GBS. I wrote on her support wall that I would be praying and if family needed any guidance, to please contact me. Not even 20 minutes later I had an email from the patient's aunt. It turned in to a long phone conversation, reassuring them that their niece (and daughter) will be ok. They have to be patient, though it's very hard, and wait for the recovery process to begin. The patient's mother was torn to pieces (as every mother would be). I promised her that everything will be ok. She WALKED OUT OF THE HOSPITAL WITH A WALKER TODAY! From Wisconsin to Alabama--- I am so proud of you! Mileage doesn't stop our family--- GBS Survivors will always and forever stay close at heart. Keep working hard w/therapy! You're almost there! |