Mom's Story          

This page contains the story of the Carmen's ordeal, by Rommel Santos, her son.

Monday, October 18th. 

I will tell the story of the ordeal mom endured from the time she picked up the near fatal mushrooms to her courageous recovery from certain death. I must have told this story over 50 times in 48 hrs, while loving relatives from all over the world called me on my cellular phone wanting more news and updates on her condition. I'm posting this on the web so I can share with you the roller coaster of emotions as we received all the good news and the bad. I'm not a writer or a poet, so please don't expect Hemmingway.

 Mom has always been an all-natural "mother of the earth" type of woman who will pick and grow everything she cooks. I was told later that this is not the first time she has picked wild mushrooms so I assume that she felt reasonably comfortable picking wild mushrooms from a place she has been to many times.

It started on Tuesday, October 12th when mom went to the row of pine tress growing behind the neighbor's house looking for fresh mushroom to use for a delicious stir-fry she had planned. She fries the food in pure virgin oil along with other assorted vegetables and leftover meat in the fridge. Typical of mom, she has a crock-pot of soup simmering for Jim. She put some in there too.

She tells Jim that she is feeling ill the following morning (Wednesday) after having a beer before bedtime. Mom and Jim hit the road and she complains that she's tired after a visit to a potential hay buyer. They stop for breakfast and mom said she's not hungry and that she wants to save her appetite for a luncheon she will be attending at Mt. View nursing home where she is a volunteer. At the party she had a glass of lightly spiked punch and later confesses to doctors that she had a difficult time eating her meal but she tried to finish it. She experienced diarrhea that evening and slept uncomfortably.

Her illness becomes increasingly uncomfortable on Thursday morning. Jim insists they visit their family doctor for an examination. Upon arriving the receptionist explains that he will not be in and she strongly suggests that mom go immediately to emergency at Medina Hospital. She is showing flu-like symptoms. The first set of tests that were performed revealed nothing. They went home. The second tests were positive and they were advised to return immediately. Her liver enzymes were high and consistent with liver damage and hepatitis.

She has been admitted.

Jim leaves a message for me at home on Thursday evening saying "not to worry, but your mother is in the hospital and will there for a couple of days with flu-like symptoms"-an understatement. A battery of test was ordered and they are trying to pin point the problem. Perhaps it's hepatitis caught from their recent 8,000-mile tour of the United States. I receive Jim's message on Friday morning I and called Caroline immediately and advised her that we should pack up and visit her as she is always there for Maegen and Taylor. Caroline shops for a cute nightgown and furry slippers at "La Senza" to make her feel better.

The nightmare begins.

4:30 PM Friday. The doctors gives Jim the news that mom has toxic poisoning likely caused by mushrooms. The liver has sustained damage and the prognosis is 7 days to live. Mom is informed and Jim calls the children. I heard the news from Martin: "She has 7 days". Caroline sobs uncontrollably. Long-distance calls are launched and the children race to Rochester breaking speed records for the fastest land vehicle

Realizing this hospital is not equipped to handle this rare case, the Medina doctor will be on the phone for 3 hours frantically looking for a suitable transplant hospital: Strong Memorial. A medi-vac helicopter has been dispatched to take her to Strong. She is placed on the liver recipient list.

8:30pm. The severity of her condition is intensified. Mom receives her last rights and communion while she is conscious.

2:00am Saturday. I finally see her rolled into the ICU after waiting for 3 hours at Strong Memorial. Paramedics, nurses and doctors surround her. She doesn't hear me as I call out to her, and I quickly notice that her teeth and lips are BLACK. I thought she looked pretty ragged and weak, but conscious and alert. Little did I know that she would look like a truck hit her in 24 hours. There are I.V. bottles and complicated looking drip machines controlling her life.

5:00am. I met Dr. Donnelly (toxicology resident) in mom's room and is trying to explain that she must sign a form that appoints Jim her proxy representative. She is barely awake and very weak as Dr. Donnelly is forcing her to make decisions on her second proxy and sign her name on the dotted line.

I was offended at his persistence and I ask him if we can do this later. He explained to me that she must sign the document while she is in complete control of her mind and she is conscious. She picked me as her second proxy in the event Jim is unable to make decisions for her. She picked me because I was the only relative available at that moment. Ron and Candy have not arrived.

5:30 Ron, Cynthia, Candy, Martin arrive at mom's room. I am in mid conversation with Dr. Donnelly as he is explaining that they have not given her a death sentence because her liver has not completely failed, but it is damaged. The important part is that she is alert and conscious. He explained to us that dementia is the first sign of a total liver failure due to fluid in the brain, followed by kidney/heart/lung complications and eventually death. He explained to us that they would pursue an aggressive drug treatment that has worked in the past.

He explained that mom's case is rare but this hospital has seen this type of poisoning 5 times in 4 years. He warned us that they will proceed on the mushroom poisoning theory, but they are not 100% sure they are treating the right cause of the illness because they do not have the mushroom for positive ID. He offered hope when he said that this treatment has been successful for all the cases he has seen, with no permanent liver damage. We walked away encouraged.

9:00am. She undergoes CAT and ultrasound scans to prepare the transplant surgeons, to prepare her for the transplant . The transplant option is not our desired strategy. In the meantime we are at the farm and scour the yard for mushrooms and collected as many different types of mushrooms into a bag for the doctors to examine.

12:30pm Saturday. We leave the farm after a restless sleep. The sun is shining as Candy, Jim and I am engaged in light conversation in the car, making our way to the hospital. Mom's latest test results (they tested her blood for a variety of things every 6 hours) were good because she is stable. Her condition has not improved, but most importantly she has not declined. Every hour that she's stable is 1 point for the good guys. We had the mushroom samples with us, and we were confident.

3:00pm Saturday. We met with Dr. Sabine and Dr. Wax who educated us on the variety of mushrooms that they think is killing mom. Dr. Wax was 100% sure that it is mushroom poisoning based on timing, the order of the symptoms occurring, the severity in a short period of time, and the MONTH. October is the only month this variety of mushrooms grows. He said: "I don't need to see the mushrooms, nothing can do this much damage in this short period of time".

I sensed that Dr. Wax knew something that he wasn't sharing because he was offering very little encouragement despite the long period of time she has been stable. Dr. Sabine was more blunt: "I think your mom will get worse".

Dr. Sabine was right. Her condition deteriorated rapidly.

5:00pm Saturday. We were informed that mom's liver is showing virtually no signs of normal functions-it's totally shut down. The first symptom manifests itself: Mom is showing signs of losing consciousness and her lucidity is questionable.

6:00pm. Jim is asked to consent to administering blood products (platelets) and inserting large tubes into major arteries on her neck, pelvis and groin. Her blood is no longer clotting.

She is placed number one on the liver recipient list for New York State.

8:00pm. We are told there is fluid in her lungs. They have to insert a large tube down her throat to evacuate the fluid and this will help her breath. In retrospect, it appears that they were preparing her for life support. More forms to approve invasive procedures are required.

I ask Dr. Bolon for a prognosis. She no longer has days, but maybe 12 hours to live. Lori (ICU nurse) confesses to Candy: "Her lab values are not consistent with life"

11:00 PM Saturday. This was an emotionally charged time. I cannot explain the powerful emotions that overcome you when as you stand before your dying mother. You have to use your imagination because even the best writers cannot describe emotions to the point where you can feel the pain.

Dr. Bolon entered the waiting room where we were waiting and offered us to say goodbye before they inserted the ventilator tube down her throat. She will be not able to verbally respond and the powerful drugs will take effect. In retrospect, I know now that they were preparing her life support. We knew this was the last time we would see her lucid. We knew this was our last goodbye.

Present were Jim, Ron, Cynthia, Candy, Martin, Angelique, Caroline and myself. We lined up to say goodbye and she spoke her last words: "love each other". We sobbed uncontrollably and we left Jim to say his last words to the woman he loves, in privacy. Returning to the waiting room, we continued to sob for what seemed like hours and Jim returned several minutes later. We were quiet, and alone with out thoughts.

Before mom lapses into unconsciousness, she asks when her transplant is scheduled. We have no liver available, and there is not one in sight. Jim tells her not worry, it will happen soon.

6:00am Sunday. I was awoken in my hotel room with a phone call. It's Ron, my brother. Mom has been scheduled to be awakened in an hour to test for neurological responses. She's being tested for signs of brain damage caused by fluid building in the cranium and brain swelling. We are told that this test involves taking her off the drugs, at which time she will feel discomfort because of the tube in her throat. This may be last the chance to see her conscious again and comfort her during the procedure. We rush to hospital before the sun came up.

9:00am Sunday. More bad news. The fluid developing in her brain requires drilling a hole in her skull to monitor inter-cranial pressure. This pressure can cause brain damage and this procedure causes painful discussion in the family.

We wanted to avoid more invasive procedures, IF it's not necessary. We debate this and we agree we must meet with the transplant surgeon, Dr. Orloff, first. The conversation turns to speculating on withdrawing treatment in the event that there is no chance for donor liver to arrive. This discussion is emotional and Jim makes the final decision: mom would want die with dignity. We must meet with Dr. Orloff now -- where is he?

Finally, Dr. Orloff (a.k.a. God) arrives. He is not what I expect. I expected a distinguish man who carries himself with authority. Instead he is slight and reminds me of Howdy Dowdy. I quickly change my opinion because I immediately recognize his intelligence and his obvious experience. We confront him about the brain monitor and our concern regarding this procedure as being invasive and unnecessary given it's marginal benefit if she has no, or little, chance to live.

We confront him about the other issue. If she truly has no chance to live, we were thinking of withdrawing treatment and letting her die. We were encouraged by his blunt answer: "she is very salvageable…If I had a liver right now she has an 80% chance of living…you can choose to withdraw treatment now but it would be almost criminal negligence to do so……. We are not at that point yet. Jim makes the decision by signing the paper work-do it.

I enter her room after they perform the procedure. I'm distressed by the sight of the inter-cranial pressure monitor screwed into her skull, her face and body is grossly swollen, her hair is partially shaved, and the nurse was evacuating fluid from her lungs. Mom's limp body gags. I feel sick.

11:00 am Sunday. Candy, Maritesse (cousin), Aunt Paci, Uncle Bert attended a mass and a special prayer is said aloud with the parishioners praying for a liver.

12:30 PM Sunday. My cousin Angelique rushes into the hospital cafeteria where Caroline, Jim, and I are having an awful lunch and she has a desperate look in her face. Dr. Orloff is in looking for the family. A decision has to be made. Does he have a liver? Or does he want us to make another horrible decision?

 We find Dr. Orloff. He said it plainly, with no emotion: "We have a liver". I receive this news and I try to control my emotions, Jim breaks down. The liver is from a 50-year-old woman with a compatible blood type, and similar physical size. She is from Washington, Seattle and did not die from any organ failure. The liver is imperfect because it has congenital cysts that are benign, but it should work perfectly. He explained to us that the transplant in no way guarantees her life. Because she is so far gone, she can very well die from a host of complications.

I call my brother and sister with the big news. Ron rushes back to the hospital, and Candy is so excited she won't let me talk. Our prayers for a liver are answered.

2:00 PM Sunday. Her kidneys are deteriorating and more paper work is required for dialysis. Despite the good news she continues to deteriorate rapidly. In retrospect, the surgeons decided not dialyze her due to the extremely low blood pressure.

3:00pm Sunday. Her blood pressure is so low she may not survive the transplant. She's dying and this liver has to make it here FASTER. I'm told it's on route via private jet and they harvested the donor liver ahead of plan, moving the ETA from 10:00pm to 8:00pm. Dr. Orloff explains to us they are removing mom's liver before the donor liver arrives because this dead organ is beginning to release toxins and must be removed now.

5:00pm Sunday. She's alive. Dr. Orloff has informed us that she will lie on the O.R. table until the donor liver arrives.

11:30pm Sunday. Dr. Bronster (another transplant surgeon) informs us the Dr. Orloff is cleaning up and he is almost finished. It looks good.

12:30 Monday. We finally see Dr. Orloff. He announces to us: things can't be any better than they are now, considering how close she was to death. Then a stern warning: "anything can happen, we can still come out of this dead".

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From here on you can read the daily updates posted by Angelique and Ron. The liver came in time and I truly believe it was a miracle for two reasons: 1) A liver came less than 24 hrs. after she was placed on the recipient list. This does not normally happen. 2) It came immediately after prayers. Mom could not have waited for another hour for that liver. She was very close to death and she beat the staggering odds against her. The only thing that is keeping her alive today is her will, determination, and incredible strength.

The outpouring of sympathy and prayers have been overwhelming, and encouraging. I cannot describe how beautiful feelings of love I am getting everywhere. Please continue to pray for her because mom is still in danger of being snatched away from us.

I have role models that include famous athletes, leaders of science, industry and government. I have a new one today. Her name is MOM.

Rommel