When You Face Life and Death - The Fight

                         A Personal Story Shared from the Family of Ray Maciel ~

And then… after years fighting against Hepatitis C, undergoing different treatments that didn’t work, my husband doctor’s told us: You need a liver transplant, we don’t have another choice.

Could you imagine the feelings as a family we all had at this moment? Probably not… I was made aware just in that moment how it felt!  A lot of patients with hep c discover it too late and do not have time to do any sort of treatment. I can imagine how terrified they feel!!  My husband like another ones, kept trying to do different treatments we were praying it works  until his liver became decompensated and his liver got worst after using the medicine.  His body didn’t react well with Pegeleted Interferon and Ribavirin.  This made us feel so angry and confused.  How it can this happen? We had so many different feelings in our heart! Our thoughts were if we didn’t try the medications and treatment in the first place, would he not be so bad and would it have taken more time for the liver get to the decompensated stage?

 When a family needs to face some of these decisions to save their love one’s life and you don’t know for sure what the results will be it is like you are walking with a blind fold over your eyes and going through it completely blind.  But in our case like another families we have to remember that God is directing our steps and is in our hearts!

Fortunately, we just waited 2 years on the transplant list.  And there are thousands people waiting for so long to find a donor, many patients die waiting and I feel so sad about that because there is a simple beautiful action to save someone’s life.  The simple act of kindness can change drastically the life of an entire family just by donating a lifesaving organ.

While Ray was waiting for a donor he began to fight a lot against his depression like all the patients that are going through it.  But he denied take any medications for it. He wanted to continue to work and he was afraid about the side effects. Thank God he has a home office!

Family - Hepatitis C Foundation

Ray and his family after his transplant at
the hospital.

The Patients that goes to the liver transplant list are in very critical health.  The level of ammonia is getting high, some of them like my husband need to do a paracentesis procedure (take out the fluid that builds inside the belly), Ray in the end was doing it every week, and he was taking out 5 to 7 liters from inside his belly each time. Can you imagine how the patients feel about this?  They cannot eat well because they feel nauseas or pain and  the diet needs to be without salt. My husband was eating just fruits and ice for several days before the transplant. The patients cannot sleep well either because all the fluid buildup inside, the pain they feel, the depression, fear, the medicine they need to take for try to keep them alive. 

All the hospital visits because the patients get very very bad and need immediate medical attention.  Ray went to the hospital many times, because of the sodium level’s problems and one time he got a urine infection.

During all this going on I’ll tell you, all those times, a family of these patients suffers a lot too, it is not just the patient! My girls had so many emotional problems, the insecurity they felt, all the fear, all the worry they went on in their minds and each one had a different way to respond to all this situation!

With all this, my husband could fight and he was working but struggling to keep his mind on it. I started to help him more and more on the office, because the ammonia he had difficulty staying awake.  On the final days before the transplant, he couldn’t remember some important things and I was trying to keep all his daily work functioning while this was going on. If you are a caregiver you know what I’m talking about now! We need to make a “ring of love” in this situation! As a wife and  a caregiver I can tell you I got my car several times and went for a drive away from the house away from everyone just to cry and cry.  To see my husband dying every day, seeing his fears of dying and not knowing when the liver will shut down totally.   Every minute I tried to keep my mind in positive mode too, and all the time my question was: WHY IS SO DIFFICULT FOR SOMEONE TO WANT TO BE A DONNOR? WHY IS SO DIFFICULT WE SEE THE ADVERTISEMENTS ABOUT IT?  WHY I CAN SEE BUILDBOARDS WITH SO MANY DIFFERENT ADVERTISEMENTS AND THEY DON’T DO ABOUT ORGAN DONATION? WHY IS IT PEOPLE DON’T TALK ABOUT THAT? WHY IS IT THAT THOUSANDS OF PEOPLE ARE DYING OUT THERE BECAUSE THEY DON’T HAVE A DONOR? WHY ARE WE AS HUMAN BEINGS SO SELFISHINESS??? HAVE YOU EVER QUESTIONED YOUR SELF ABOUT THAT?

As a wife and a caregiver I didn’t take any medicine for the depression either, my friends and families were asking me about it, but I always had my thoughts and personal feeling about that and I went through all this without any medicine, I also didn’t sleep for several days!!

This is a day by day situation from someone that is waiting and fighting to save his life and the family all around.  I cannot forget the battle we had confronted when the coordinator for transplant told us about the medicines post-transplant my husband will need to take! Can you imagine after going through the emotional roller coaster of waiting for a transplant and then being put in the situation then they need to worry about the thousands of dollars for the transplant, all the medication to keep the liver from rejecting…. That is the money he needs to spend to save his life? Omg, that’s when I start to fight with myself and keep saying for myself everyday: You can, you going to learn and you going to do it!  I start to do a lot of fundraiser to raise money for it, never did it in all my life. But after all God was helping me, so…I did, and some friends and families helped me! My insurance didn’t cover all the amounts so we need figure out how we could do it without losing everything we built through our life.

For all those families who are going through it, you believe you can handle it, you can survive after all! But can you imagine a patient and family going through all this situation and now needs to make more money??  My husband worked until one week before the transplant with my help.  I was trying to do something to help him continue running his business and all the time I remember, I needed call him, to keep him wake up to help me with his work……but how about the patients that get worst and are forced to quit working?  They sometimes get put into a wheel chair with so many pain, think about it…….

We got called 3 times to the hospital for one possible donor, but for several reasons they never worked out.  On July 1, 2013 the doctor said to my husband that we couldn’t do anything more, all we could do was just wait.  He was dying…The worst situation ever! Ray had been fighting for so long….. All this we fought so long and hard for him to live felt like a ball was dropped.   My kids were so scared, me….. OMG I cannot remember my feelings. We all continued to pray, family and friends! WHY IS SO DIFFICULT TO GET A DONOR? WHY PEOPLE LET ANOTHER HUMAN BEING DY IN FRONT OF THEIR EYES AND DON’T DO ANYTHING? WHY PEOPLE ARE SO AFRAID TO BE A DONOR?   After 4 days from getting this news from the doctor we got a call from the hospital!! THE DONOR!! Between all the preparation, surgery, going back to the surgery again after some hours because bleeding, recuperation and going back home to have a normal life, we had so many feelings!

Ray is doing so much better after the transplant.  The liver he received was accepted by his body very well.  Now we are preparing him for the new treatment to cure his hep c.  We continue to pray every day for the donor’s family. THEY ARE OUR ANGELS, they saved my husband's life and my family is so thankful and this gift to us is priceless.  They suffered too because their loss, and we pray to God healing their hearts!

Man - Hepatitis C Foundation
Ray feeling blessed to be at his home after the transplant.

Of course This is a short version of our story, behind it there are so much more pain and fortunately my husband’s life was saved but there are thousands families out there right now suffering in this situation  and waiting for a donor!

Patricia, Ray Maciel and Family





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