3 Chances Of Life
AnonymousOctober 18, 2008 at 7:00 pm
No one really knows what ones’ life entails. Each one of us copes with misfortunes in different ways. Some people never get over with life’s problems yet, a few of us are*striving to turn life back to normal. I was diagnosed with Guillain-Barre when I was 18 years old. I had received the flu vaccine one month prior to my illness.
My presentation of*symptoms was atypical.* I had ptosis in my right eye, followed by fever, gait unsteadiness, slurred speech and paralysis. I was rushed to ICU Cebu Doctors Hospital in Cebu City, Philippines and 3 days later my lungs collapsed. I immediately had a tracheotomy and was connected to the ventilator. The only part of my body that moved was my feet. Throughout my whole ordeal, I kept on praying to God. I had a “life after death experience” in the ICU.* I felt a gush of air lifting my body and I was directed to choose which way I wanted to go.* I opened one door which was full of flowers and out of my curiosity I opened another door with a narrow pathway and as I walked through it, a hand grabbed me. It was my father reminding me that it is not my time yet.* I still have mission in life; I still have second chance in life. I finished my Bachelor’s Degree in Nursing and made it here to the United States.
Things happen for a reason.
It has been approximately twenty two years since I got sick of Guillain-Barre Syndrome. I acquired a flu like syndrome in early January of 2008. My right eye*started drooping on January 4th 2008.On January 6th, my symptoms worsened. My eyes were not focusing well and I had gait imbalance. As my husband drove me to Kaiser Permanente in San Francisco, I called my sister*Bebs begging her to come and help me. I knew that my Guillain-Barre illness had come back. A few hours after*my ER visit, I*had*slurred speech and was rushed to ICU.* The doctors thought I had Myasthenia Gravis but later ruled it out. The neurologist on call did the tensilon test and found that it was negative for Myasthenia Gravis. Again my first few hours in ICU were critical. I beg the nurse and the resident MD to give me IVIG as soon as possible yet they wanted to continue observing me*first.
Early morning on the 7th of January, my breathing*was getting difficult. More lab works were drawn such as ABG’s, chemistries, CBC and antibody tests.* Finally, I had the IVIG.* My “fear of the unknown” resurfaced. It was déjà vu*of what happened to me twenty two years ago. Around 0600 am on the same day, I could not breathe. A doctor asked me if I want to be entubated and be connected to the ventilator. I was sedated after entubation however; I was*awaken when several procedures were done such as NGT insertion, PICC line insertion and spinal tap procedure.* My body was in so much stress that day. However, I knew that God was with me. God had sent my sister to San Francisco to cheer me and watch me in the care of physicians and nurses.
The first few weeks of my stay in ICU, I had no clear diagnosis. The doctors were baffled by my presentation of symptoms and negative antibody test and CSF test were inconclusive. I remembered that there was a short Caucasian neurologist who did an EMG on me and while he was doing that there were few doctors that came in my room.* I overheard one of the doctors said: “I don’t know with you guys, I have never seen anything like this in my fellowship”.* It is scary to think that my presentation of symptoms was unique.*
My body was not responding well with the IVIG treatment. I was subject to more tests and procedures like EMG’s, central line and tracheotomy. My whole body was completely paralyzed except for my toes.* So my sister Bebs and my husband Reino*suggested to communicate*by wiggling my right toes as “yes”*and left toes as “no”. It was funny because the nurses looked at my face then my toes.
Another week passed by, the doctors were still puzzled and my family was weary of what was going on and what the right treatment*would be. Finally, a resident came by and stated “We don’t really have a diagnosis yet but we know that this is caused by a virus.* The virus study revealed Heamophilus influenza – a flu virus”.
After that I was given a five day course of plasmapheresis. My body was resisting the plasmapheresis treatment. I had high temperature 24 hours a day for 5 days.* My sister stayed overnight multiple times, giving me a sponge bath and making sure that I would get my medications on time. My family had visited me every day. I remember hearing my son’s voice saying “You take a deep breath okay!” My son was trying to make sure that I would not give up. And that means a lot to me. I also remember Dr. Fox, a young curly- haired neurologist, holding my hand stating “Hold on there Eden”.* Dr. Coppolino, another curly-haired doctor, who always made his rounds early and gave my sister frequent updates. He was also instrumental in making sure that I would get a communication device.
The ICU team finally decided*to ask me and my sister to have a muscle biopsy and a nerve biopsy done. I agreed and had my sister signed the consent for me. A few days later Dr. Taylor introduced himself to me.* He positioned me on my extreme left for the muscle and nerve biopsy to be done. It was done in my ICU room and my sister assisted. It was the most painful procedure I ever had and on top of it, it was a dragging 3 hours long. Another week passed by, my sister and I were informed by resident MD’s that my case was discussed at UCSF and furthermore the Patho-neurologist at UCSF concluded that the results of muscle and nerve biopsy were nonconclusive of new diagnosis. The results of the nerve and muscle biopsy indicated Guillain-Barre Syndrome.*
During my 4-months stay in ICU, I regained movements in my eyes, trunk and head. And the last procedure I had was the insertion of gastrostomy tube.
I was moved to a step down unit on April 1,*2008. While on the way to the step down unit, Aaron, an RN, told my sister “the problem is you did an excellent job in taking care of her (in which my sister just rendered basic nursing care to me)* and the expectations from us is the same but we can’ t do that”.* Nowadays, are nurses taught just to pass medications and chart? What happened to bedside nursing?*
At this time, there were thoughts placing me in an acute rehab in San Jose Regional Medical*Center, however, it was declined. There were no sub-acute*facilities in the Bay area that would accept a ventilator dependent*patient like me.* We were told by the discharge planner Jennifer that the other option would be to take me home. We disagreed with the plan, however, did not lose hope that there would be a better option for my hospital discharge. Then on April 25th Nicolle, the social worker, told us that there was a sub-acute*facility in Orange County, CA*that would accept me and that Kaiser would pay the transportation. On April 28th I*was airlifted to Orange County and was admitted to the New Orange Hills sub-acute facility.
During the first few weeks at New Orange Hills, it was hard to adjust.* For one thing, I was placed in a hot room with three beds.* Secondly, some night shift nurses did not want to suction me.* They relied on the respiratory therapist to suction their patients through their tracheotomy. On the other end, Orange Hills also had good staff members who were an integral part of my recovery (Karen PT, Susan OT, Vince PT, Iona PT, Jay PT aide, Cora RN, Rocio LVN, Brenda CNA, Maria Z CNA, and Wendy CNA). There were many more to thank for their good deeds.* They were great examples of excellent healthcare workers. At New Orange Hills, I learned how to stand up and take a few steps, which progressed to 50 feet then up to 300 feet with a platform walker and moderate to minimum assist.* However, I had no functions on my fingers and I still had wrist drop. I also had right foot drop, very weak quadriceps and gluteus muscles.
At New Orange Hills, I was weaned from using the ventilator. Dr. Ky first thought that I was too anxious and might have difficulty in my weaning process. However, it was not anxiety that keep me from using the ventilator.* My lungs and my diaphragm were just too weak. I was retaining carbon dioxide. So, Dr. Ky decided to wean me slowly until I could finally tolerate a tracheotomy plug without retaining carbon dioxide.
On August 18th, I was transferred to Long Beach Memorial Hospital for acute rehab. I had a 3 hour rehab session- from Monday to Friday. There were few events that I did not like and from those events I learned to speak for myself.* For example, I caught the PT not washing her hands after handling dirty equipment, so I voiced my concerns and the staff member observed hand washing technique.
In light of the bad things, some good things also happened.* My tracheotomy tube was taken out for good by a Kaiser doctor. In addition, I finally regained some movements in my thumbs and fingers. My endurance was also getting better. After being institutionalized for 9 months, I find it hard to believe that a patient can fall into “cracks”*of an HMO if he/ she does not have good family support and know his/ her appeal rights.
On September 17th,*I was discharged from Long Beach Memorial Hospital and went home to my sister’s. A week later I had outpatient PT and OT.* I can now hold a spoon or fork without using a splint when eating. I can also stand independently from my wheelchair.*It takes small baby steps to conquer what I have been through. I am thriving to be normal by eating healthy, exercising at home or in the gym, and staying focused and determined. I would encourage people who have the same diagnosis like me to do the same. It is important to aim for a healthy lifestyle and not to waste life. I might be lucky*for God had given me a third chance to live. Again, there is a reason for everything. This is my third chance in life and I will never know what mission in life I did not complete and what is ahead for me.
AnonymousOctober 18, 2008 at 7:40 pm
I hate to hear of what you went through but it was a very beautiful inspiring story. And I do believe we are all here for a reason. And when we have finally accomplished that reason then we go to another world.
3 chances at life is sometimes very hard to get but when we get them we learn to respect what happened to us and appreciate every single day we have. Thank-you for sharing such a beautiful story! Hugs
AnonymousOctober 18, 2008 at 7:47 pm
Such a rough time you have had, not just once but twice with GBS.
Thank God you had your sister to help you in the hospital. You have come a long way with baby steps and sounds like you are determined to keep making improvement. Give your sister a big thank you from me for being such a good caregiver to you.
Keep taking those baby steps.
Bless you and I will be praying for you
AnonymousOctober 19, 2008 at 10:29 am
What a beautiful story Eden. Thank you for sharing it with us. Your strength and courage are an inspiration to me/us! One day at a time and one baby step at a time. Keep up the hard work. Keep us posted as you recover. Hugs and prayers being sent to you and your family 🙂
October 20, 2008 at 10:07 am
Your courage and faith are astounding. My 11 y/o son has cidp and this weekend has been difficult, even questioning faith and hope. Not abandoning it, but questioning it. I think your story and courage will help get me back on track. I hope! I pray that you continue your progress and hope for good things to come your way. Your sister is an amazing woman to take such good care of you. I thank her for doing that. It is so much easier when you know people care. Best wishes and prayers.
Dawn Kevies mom
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