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Carlos' story

Fund physical,occupational and speech therapies,costs for going to a skilled nursing facility,and medication for life to battle Myasthenia Gravis.

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Carlos' story

Carlos' story

Carlos' story

Carlos' story

Carlos' story

Fund physical,occupational and speech therapies,costs for going to a skilled nursing facility,and medication for life to battle Myasthenia Gravis.

Fund physical,occupational and speech therapies,costs for going to a skilled nursing facility,and medication for life to battle Myasthenia Gravis.

Fund physical,occupational and speech therapies,costs for going to a skilled nursing facility,and medication for life to battle Myasthenia Gravis.

Fund physical,occupational and speech therapies,costs for going to a skilled nursing facility,and medication for life to battle Myasthenia Gravis.

Charlene Gonzalez
Charlene Gonzalez
Charlene Gonzalez
Charlene Gonzalez
1 Campaign |
San Juan, Puerto Rico
$615 USD 13 backers
3% of $20,000 Flexible Goal Flexible Goal
Choose your Perk

Carlos is 62 years old. He is my loving father. During the first week of September, he was starting to feel uneasy, but he was working, nevertheless.  His eyelids started to close, unvoluntarily with no control.  On September 17, 2012, he was sent to the emergency room at the Metropolitan Hospital in San Juan, P.R. Doctors thought he had suffered a stroke. First, his left eyelid was drooping, then the right eyelid started to droop as well; his head dropped forward, with no control over his neck. This made it difficult for him to breathe. He lost mobility on both arms. He could barely move by himself. He could not walk unassisted. He had double and blurry vision. His blood pressure sky rocketed. He could barely swallow his own saliva, or drink water. 

With this complicated group of symptoms, doctors discarted the stroke theory and sent him through several tests, including CT scans, MRI's, echocardiogram, etc., trying to pin point the illness. Three days passed before they could have the MRI done, because he could not lay down flat; every time he laid on his back, he lost his breath, and was scared of dying from asphyxia. He could not breathe right! The sedation did not work. It was horrible to see him suffer like that and not be able to complete the tests to get a final diagnose so they could treat him. On the third day trying to get the MRI done, he finally was sedated enough to go through the ordeal. But nothing showed; they just knew it had not been a stroke.
Several doctors where consulted: Internist, Infectologist, Neurologist, Gastroenterologist, Hematologist, Phychiatrist, Epidemioligist, etc., etc.


They decided to have a test done that took 10 business days to get the results from the U.S. to confirm if he had a disease called Myasthenia Gravis.  In the meantime, he spent two weeks with breathing difficulties; he could not swallow his saliva, so he had to have somebody clean it for him.  He could not even spit, because he did not have strength in his tongue, not even to speak. He barely slept an hour or two each day.  He was desperate and scared of what he might have.  Every day he got worse. He choked with his own saliva one day, and had to receive CPR.  Also, being a diabetic and receiving corticosteroid, did not help  control his blood sugar levels. And if he had Myasthenia Gravis, the diabetes may affect his ability of gettting better. Also, the stress of not being able to provide for his family, worsened his condition.

They put him on Immunoglobulin, but it did not work for him.  He was also on Mestinon, but that made him salivate more, and that was when, a couple days after being diagnosed with Myasthenia Gravis, he went into respiratory failure and was revived with a defibrillator.  The medicines were not working! He was admitted into the Intensive Care Unit.  He spent 15 days there.  There he  had a tube down his throat, was conscious, and could not speak.  That made him more desperate, his blood pressure was not under control.  He cried, he "fought" with his fingers because he could not raise his arms.  He tried to get the tube out.  They ended up covering his fists.  He even made gestures that he wanted out. He did not think he would get out from ICU alive.  He even mimicked "No More"-meaning he was done trying to get better, and getting nowhere.

Doctors decided to get a machine from the Red Cross that was used for a treatment called Plasmpheresis, but the hospital that used this machine would not take his case.

After dozens of calls, three days later, the Red Cross came to the hospital with the machine, and the experts, to offer him this treatment. That's when he started to get better. Finally, two weeks later, he could breathe without the tube, he could swallow, and speak but he have to receive therapies. He would now have to learn to walk again.

Myasthenia is a neuromuscular disease that makes the muscles get weak and in need of physical and occupational therapy.  This physical therapy had to be offered with extreme caution, so he would not get extremely fatigued.

He was then transferred to a skilled nursing facility where his medical insurance would not cover his stay, nore his therapies, or his medication, that he would need for life (Mestinon 120mg).

We ask that you help my father fund his physical, occupational and speech therapies so he can go back to his "normal" life. Diagnosed with Myasthenia Gravis, he suffered 40 days- 15 of those days in the Intensive Care Unit, due to a respiratory failure.

He has to learn to walk again, and to do all the things others normally do every day, like brush his teeth, put on his clothes, take a bath, brush his hair.
The costs for going to a skilled nursing facility, and medication for life, without being able to provide for himself and his family-including a 17 year old young man just about to go to college, makes this situation seem unbearable. We ask for the help of anyone interested in making the life of this wonderful, loving family man, a little more acceptable . He has to deal now with adjusting life to this condition that limits his ability to provide for his family. He has been out of work for two months, and now has to deal with paying for therapies and medicine that will not allow him to work like he had in the past, but at least he can try to do the daily functions by himself.

Myasthenia Gravis is a disease that he may be able to live with, but he needs to get out from this crisis. Stressfull situations like the one is going through, do not aid to his recovery.  In the meantime, we pray and thank God for the opportunity he has given my father to literally breathe and walk again, at least with difficulty. He is my everything, and I want to help him. Will you?

 

 

 

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