In late November 2001, my mother began taking dialysis therapy for End Stage Renal Failure. Her kidney function had dropped to less than 15% of normal and the toxins produced by her normal bodily functions were building up in her blood stream and reaching dangerous levels. Without the therapy, the doctors said she would survive no longer than a few weeks at best.
My mother was 59 years old when her kidneys failed and therapy began. She is now 65 and each day she struggles with the pain, anxiety, and disabling effects of her condition. Therapy for her, as is the case with multiplied hundreds of others, has become both a life line and a curse. The treatments are a life line in that they do bring a measured amount of relief from the fluid buildup and pressure around her heart and other organs. They are a curse because without them she knows that death would be only days away. I often wonder just how much she can stand.
My father is her main care giver at this time. Strength of character and a deep and passionate love for my mother are the forces that drive him as he cares for her every need. He cleans the house, washes clothes, cooks meals, drives her to doctor visits and to therapy sessions. He listens to her cry and tries to be her support. It’s as though his whole life revolves around her needs because it does. My parents have been life partners, soul mates if you will, for nearly 47 years.
I truly admire my father’s example. In this day and age when commitment means so little to most, my father is a living example of what it really means to be committed to one person “to love, honor, and cherish in sickness and in health, till death do us part.” The disease has taken its toll on him as well.
My question is when is enough enough?
The Ordeal – Waiting for a kidney
End Stage Renal Failure patients are left with only two options for survival – A kidney transplant or dialysis therapy. There are no other options at this time. Their names are placed on a waiting list after some preliminary evaluation of their health. The list has several thousand names on it most of whom will never receive a kidney because there are not enough donors or they die while waiting. The few who are fortunate enough to receive a kidney face a life time of anti rejection therapy drugs.
When mom was first diagnosed with kidney failure in 2001, the doctors immediately put her on “the list” for a transplant. The hope that a donor may be found that matched her physiology gave her hope and made the idea of going on dialysis therapy more easily acceptable to her. After all, it would only be temporary right?
After three years of treatments, each one getting a little harder to bear, a donor volunteered a kidney. The whole family was excited. Compatibility testing, physical examinations, tests, and corrective actions began. For almost a year, the doctors checked and rechecked everything from her blood pressure to the soles of her feet. Finally they sent her to the Mayo clinic in Jacksonville, Florida for evaluation by a team of physicians who would be performing the surgery to replace her failed kidneys.
Mom and dad returned home near the end of June 2006 anxiously awaiting the results of her evaluation for transplant. What would the doctors say? Was the operation a ‘GO’ ? No one knew until the phone rang. Mom answered, “hello”. “Mrs. __________, this is the Mayo Clinic calling.” “Yes. “Mrs. ________ the answer is NO, we cannot risk the surgery. Good bye.” As she hung up the receiver, her heart sank. There was no explanation, no sympathy, no feeling in the voice on the other end of the phone, just a simple, short, and unfeeling answer, and the answer was no. Mom would not be getting her much needed kidney.
I remember that Sunday afternoon when my parents called the whole family together to share the news. My sisters, brother in law, niece and nephew in law, and my nephew, along with my family gathered in the den of my parents home. Mom sat in her easy chair with my father by her side holding her hand. She began by telling us all how much she loved us. Then, with tears on her face she told us the news.
By then, most of us were crying as well. Trying to be strong and controlled, I fought back the urge to leave the room and cry. I wanted to get away. A thousand thoughts a second were running through my mind. Why? Why? Why did God allow us to go this far only to be coldly told no? For a moment I found my self hating that nurse and those doctors who had put my mother through such torture, but there was nothing I could do. I could not change anything. This was the way things would be from now on. Momma would have to be taking those horrible treatments for the remainder of her life, but that’s not the end of the story.
Another Problem Surfaces- Pulmonary Hypertension
My mother’s rejection as a candidate for kidney transplant hit all of us as quite a shock. We had believed that she would be able to receive a kidney if one were
found. Amazingly, a volunteer donor had come forward. This donor had even taken the time to go and be cross matched with my mother to assure compatibility. Her blood and tissue type matched very well. We thought surely that an end to the nightmare was in sight. Even being on anti-rejection drugs would be better than the suffering caused by the dialysis treatments, but it wasn’t to be.
During my mom’s evaluation at Mayo, another problem was discovered with her circulatory system. This problem was called pulmonary hypertension or increased blood pressure in the arteries and veins of the lungs. It was life threatening, treatable, but, like kidney disease, incurable. It was also the reason that the doctors were not willing to attempt a transplant . Operating on her under these conditions, they said, would have a near 100% chance of killing her. She could not be placed “under” for the operation. There was no way to control the pressure in her lungs.
Again, mom and dad were disappointed. This condition, though treatable, cuts a persons life expectancy considerably. One article I read, while researching, stated that most people with this condition pass away within three to five years.
The End is Near- One More Problem
Over the last few months, I have watched my mother slowly deteriorate. Her treatments are getting harder and harder on her physically. This is partially because of the nature of the treatments themselves and partly because of her physical condition. As her condition worsens, the doctors have told her to begin getting things in order and she has.
while in an effort to treat her pulmonary problem, it was discovered that she had a problem with her heart called mitral valve prolapse. In the very basic sense, this is a leaking heart valve. Normally this is not a problem, but in some cases it can be life threatening and must be treated. Mom is such a case because this problem exacerbates the problem with her lungs. She is unable to move around for any distance without becoming out of breath, her blood pressure drops severely low during dialysis and at other times.
Once again, the doctors have told her that she needs to have an operation to correct this problem with her heart. Again, they have been testing everything imaginable before proceeding. A monitor has been placed on her heart for the last two weeks which monitors her “episodes” of shortness of breath, drops in blood pressure, etc. All of this is to find out if the operation can be performed. The kicker is that even with the operation, which carries a 98% chance of death given the other factors involved, it would only slightly improve her life. It would bring a small amount of relief to her problems with breathing and blood pressure and possibly buy her a little more time in this life. Without the surgery, the down hill slope toward death becomes even steeper and faster.
Decisions, decisions – what do you do?
When I think about all that my parents have been through in the last six years since mom was diagnosed and began therapy, it saddens me deeply. My heart and soul are broken because of the pain that I see them going through. There is a great sense of helplessness within me. I want to help them but I don’t know how. So what do I do?
I am a Christian i.e. I know Jesus Christ as my Savior and have a daily relationship with him. I believe in the power of prayer and that God in heaven rules in the affairs of men both big and small. He knows all about my mother and her situation. He knows just how much time she has and whether or not the surgery will be of benefit to her or not. So, what do I do? I pray. I pray and leave it all in his hands.
That may sound a bit ridiculous to some, but for me it is the best solution. God can do anything. Doctors don’t have all of the answers but he does and I know that whatever He decides to do will be the right thing for my mother, my dad and all of the rest of our family.
The ultimate decision to have the surgery on her heart with all of its risk will be made by my mother. She has said that she will not do anything until she discusses it with all of her family. I am thankful that she feels that way, but it is her decision. For myself, I think she has already been through enough. I am “on the fence” not really leaning for or against . If she chooses not to have this procedure done, I will support her. If she chooses to go through with it, knowing the risks up front, I will support her in that decision as well. I only want what is best for her and I trust God to help her make the right decision.
My parents are both Christians as well. Their faith is evidenced by their walk with him and the testimony they bear to their family, friends, and associates. Mom was a kindergarten teacher for 30 years in my home town. Dad was the assistant manager of a lumber and hardware store in the same town for 35 years. Their faithful church attendance, even today, is a testimony to their faith. Together they have raised my sisters and myself to be what we are today. I am thankful for their guidance, love, help, and their faithful testimony.
The day is coming when mom and dad will have to decide the ultimate. I don’t know when it will be. Only God in heaven knows that. The doctors have done just about all they can. They have told my parents to prepare for hospice care for mom. They really don’t give them much hope. I know in my heart, however, that as long as God is in heaven and in control, everything will be alright. It’s all in his hands.
What can I do – Advice from one who has been there?
If you are in this situation, have a loved one in this situation, or know someone in this situation, here are somethings you can do?
1. If you have a relationship with God, you can pray.
By all means, pray. Ask God for healing. Prayer can accomplish wonders. Through all of this time dealing with mom’s problems and the disappointments, it is prayer that has held her steady providing strength and comfort in knowing that God knows all about what is going on and he is in control. The Scriptures teach s that God answers prayer and he can do all things even above what we might ask or think. So pray.
2. If you don’t have a relationship with God, why not start one today?
You don’t have to suffer through this situation or any other one alone. God is there and he wants to be involved. He has provided everything that needs to be provided for you to begin. It all begins with knowing Jesus Christ as your Savior. The Scriptures tell us that He is the way to God the father. (John 14:6) To begin we must acknowledge our sinfulness (Romans 3:9-10,23; Romans 5:8,12 and 6:23) Then we must believe the gospel i.e. that Christ died for our sins, was buried, and rose again for our salvation (I Corinthians 15:1-4) The last thing to do is ASK God to save you by confessing your sin and trusting Jesus Christ.(Romans 10:9-10,13)
A relationship with God will bring peace to your troubled heart and soul. God will strengthen you by his grace. He will go with you through what ever lies ahead. He will hear and answer your prayers. He may say “yes” and bring healing. He may say “wait” and “keep praying”. He may say “no” for his glory and give you the grace to endure. BUT in any case, He will answer. All he asks of us is to trust Him.
3.You can and should learn as much about this disease as possible.
Do this for two reasons. Number one, for the person you care about. When you understand the disease and how it progresses, you can better care for the person it is affecting and help them make their choices. The better informed you are, the more help you can be.
Number two, for your own benefit. Knowing the causes of the disease and the treatments not only helps us help those affected by the disease, but it should help us “wise up” to areas where we need to change our lifestyle.
Moms disease is a side affect of another problem which she was diagnosed with twenty years earlier at the age of 39. According to the doctor, moms kidney problem developed as a result of unchecked diabetes miletus and high blood pressure. Both of these problems, had they been caught earlier in life, are treatable and proper treatment can prevent the side affects associated with kidney disease.
I was diagnosed at 37 with diabetes and have been controlling it with diet and exercise for sometime. I also have high blood pressure and cholesterol . All of these are factors that can, if left untreated lead to kidney failure later on in life. Do I get checked by my doctor? Yes. Am I seeking ways to change my lifestyle for the betterment of my health? Yes. Why? because I don’t want to end up like my mother whom I love dearly.
4. You can and should take a PROACTIVE approach to your own health.
Knowledge does no good at all if you don’t put it to use. Become proactive about your health. Take the doctors advice seriously concerning weight, exercise, and diet. Don’t become a hypochondriac but do take care of yourself. You only have one life to live. It is up to you how you live it – sick and in pain or healthy. No one can do it for you. You must do it for yourself.
Reference:
- www.wikipedia.com “pulmonary hypertension”
