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LIVING WITH END STAGE RENAL DISEASE, HEMODIALYSIS, AND TRANSPLANTATION

Well, where do I begin? Let’s see…let me begin with some background history…

I’ve been dealing with sickness, disease, and near death situations for most of my adult life. Why? Who knows!  People have asked me many times, “Aren’t you mad at God for making you sick?” Don’t you blame Him for allowing all this stuff to happen to you?” Or, and my favorite, (lol) “Did you not learn your lesson the first time around the mountain? You must not have because you’re going around that same ole mountain again.”

I don’t blame God or anyone else. No one is to blame! The Bible  is true, “the rain falls on the just and the unjust alike,” and “Many are the afflictions of the righteous but the Lord delivers them out of them all!

I digress…

In 1985 I was diagnosed with ESRD (End Stage Renal Disease) after battling Lupus since 1978 (7 yrs.), brought on by toxemia after my first pregnancy,  of which I gave birth to a pre-mature baby girl who I named Valerie Danyel Herron. Thankfully, she was born healthy!

The gynecologist that I went to for the very first time at the ripe old age of 18 – right after getting married – came in and yanked the sheet off me in one quick swoop. I was sooo humiliated. No man had ever touched me or seen my naked body, besides my husband.  As he proceeded to examine me, he asked why I was there. I explained that I was a young bride of just a few months and wanted to get birth-control. He laughed out loud! He replied, “Didn’t you think to do that BEFORE you got married?” I told him, “No, sir.”

I was young and naïve!

He proceeded to tell me it was too late for that and I was already “with child”. That explained all the passing out and nausea I had been having previously.  “Really? Are you sure?” I asked. He looked up from underneath the sheet from where he was examining me and said, “Seriously!” After a moment of silence he continued, “But if you don’t want this child, or you don’t want to have one this early in your life, we can take care of that now.” I gasped! “Excuse me!?” I was sooooo appalled! “Surely, I didn’t hear you right.” He said, “oh you heard me alright. We offer other solutions besides just being OB/GYN. If you feel that you can’t take on a child right now, at this stage of your life, then we could terminate IT. It’s only a fetus, and up until your third trimester we can abort this child. Then, when you are older, you can have other children.”

Being simply horrified I huffed, “Absolutely not! If God has seen fit to give us a child then we will gladly accept it, no matter the consequences. It is apart of me and my husband… we  can not abort our child! Never!”

Arrogantly, he replied , “Well I don’t believe GOD had anything to do with it.”

I never thought anyone could be so hard and calloused to be a baby doctor! Yes, I could have done so right then and there and no one would have been the wiser! But a fetus at 10 weeks, is a baby!!!! The child living, growing, breathing; with a heartbeat all it’s own! I would never terminate a child knowingly.

She was and is the joy of my life. Once the doctor placed her in my arms – three days after delivery – I realized I was a blessed woman to have this child. I know we were young an stupid (as some told us), but we were sooooo in love and are still today! Thirty-seven years later.

It was a tough gestation and delivery. After being put on bed rest several times, I was taken into the hospital for an amniocentesis. http://www.babycenter.com/; http://www.webmd.com/baby/guide/amniocentesis  She was in danger and so was I. I was induced and had my child the next morning after experiencing convulsions.  Both of us almost died. The first two days I was totally out of it…unconscious. But God brought us through!

Holding this bundle of love overwhelmed me to the point that all the pain and sickness through the past seven months was barely noticeable. Being so tiny and very fragile, weighing in at only 5 lbs., she was the light of my life at that very moment. Once she wrapped her tiny matchstick size fingers around mine, she wrapped my heart. And I will never let go! I suppose every new Mom feels the same way.

In the summer of 1978, I had been married 2 yrs., had an 18 month old daughter, and was so sick I couldn’t function. I couldn’t care for myself, must less my baby girl or my husband.  I had no idea what was wrong. After a year of battling fatigue, nausea, vomiting, diarrhea, fainting, etc…I wound up seeing three different doctors who were all passing the buck so to speak. The first Rheumatologist that the OB/GYN referred me to, told me that 85% of my ailments were in my mind, and only about 15% I was actually sick. He told me that I just wanted attention because the baby was getting all the attention! HOW ABSURD!

Finally, I got to a doctor who cared enough to put me in the hospital to “find out what’s wrong” even though he had no clue at the time. And Mark was at a new job and we didn’t have any insurance.  Something definitely was wrong, but the doctor didn’t know what…but really cared about people, and seemed determined to find out what was wrong. When I told him what the other doctor had told me a year before, he was infuriated and said that doctor should have been sued and he needed a beating!

After the third week in the hospital I had a claw mark looking rash appear on my left cheek. It appeared as though some wild animal had scratched my face. I screamed out when I saw myself in the mirror. The nurse came running in, ran out again, and then came back in with the doctor. The doctor in turn went out and came back in with a Physicians Desk Reference. He quickly flipped pages and said, “Yes! I have it! What you have is rare. From all signs and symptoms, it seems you have Systemic and Discoid Lupus Erythematosis (SLE for short).” Back then it was considered very rare – the doctors didn’t even know much about it – and the prognosis was grave at best.

The medical books (at that time) projected that if anyone had Lupus it was a death sentence. Dr. Joe Bancroft’s prognosis was three months… to live. He told my family that if I lived a year it would be a miracle and five years would be a long life! He began treating me with high doses of steroids, because back then that’s all they knew to do. It was touch and go for several years… until the Lord healed me of it. But my kidney’s failed because the damage was already done to my kidneys. It is thought to be that lupus settles it the weakest organ, so therefore, mine was the kidneys.

Well, I’m still here…so I guess that makes me a miracle for the past 36 yrs.!  Since they didn’t know much about Lupus in the late seventies, the doctor’s used me as a “study” case. I went about once a week for various tests and blood work; labs and x-rays.  After several years and many trips to the hospital, massive doses of steroids and drugs that did awful things to my body, and fighting against sickness on a daily basis, by the grace of God, He brought me through that as well. But, if it has helped to create data helpful for today’s patients, giving them better care or medicines, then I’m fine with that.

I learned a lot about myself and my Lord during that time in my life. One, He never leaves us nor does He ever forsake us!  He is our ever present help in time of need. Many years now, I have depended upon the Lord for my strength. Some people have said that I’m trying to be “super-spiritual” but that’s not it at all. If it wasn’t for the grace and mercy of God, I would NEVER have pulled through any of the things I’ve been through!

Note: If you want to find out more about Lupus go to: http://www.mayoclinic.com/health/lupus,  http://www.medicinenet.com/ ,  or http://www.benlysta.com/ )

1985 was a horrible year. I was in the hospital five times for various reasons: hysterectomy, kidney infections, dehydration due to side-effects of medication, anemia and effects of Lupus ravaging my physical body. It seemed that I went from one illness to another, and wondered what was around the corner next.  That was a frightening time in my life. I wondered at times why things were so bad physically, why I couldn’t shake it and how would I ever break free from the torment of pain and suffering in my life.

At that time the doctor asked me to try a new procedure which would supposedly arrest the Lupus and slow down the progression of the disease. The treatment the doctor proposed was a new type chemo-therapy.  He gave me all the pros and cons – and the cons far outweighed the pros!  Nothing seemed good about it to me. He told me to call my family and get them to the hospital so he could consult with them.

Something deep within me said, “NO! DON’T DO IT! Joshua 1:7,8, &9.”   At that particular moment in time, I had no idea what Joshua 1: 7-9 even said.   So I grabbed my Bible off the bedside table and quickly flipped through it until I came to Joshua…and there was my answer!  The words that stuck out at me were, “Be strong and very courageous…meditate in the Book of the Law (which is God’s word – the written word in the Bible) day and night… and you will make your way prosperous and you will have good success…do not be afraid or dismayed for the Lord your God is with you wherever you may go.”

I had never experienced anything like that before. It was so pure, and richly captivating.  So captivating that it took my breath away. I was like, “Oh my! Where did that come from?” I could do nothing but tremble, cry and obey it! I believe it was Holy Spirit guiding me in the direction I should go in that particular situation.

After consulting with my family; I still refused. I remained unmoved!  The  doctor turned his back to me and said to my husband, “Mr. Herron, if you don’t make your wife do this, an you don’t get her some help then she is going to die! “She may have three months at best. We must act now!”

Nope, Mark doesn’t work like that. He hates ultimatums and he absolutely  doesn’t like people trying to force anyone to do anything. In the doctor’s opinion we shouldn’t take any longer because time was of the essence and if we waited too long, there became a point of no return…then they couldn’t do anything about it. I believe he was trying to goad Mark into doing what he wanted…and make me do the chemo. But it backfired on him.

We knew that nephrologist was NOT a believer. Anytime God was mentioned he bristled. Never voicing his opinion on God or religion, his actions as much as said so. We don’t believe in forcing our beliefs on anyone. My husband, Mark Herron, in his humble, quiet wisdom softly said, ” Well, how much difference would it be if we go home and think about it for a few weeks?” He hesitated before replying,  “Not much…but I wouldn’t wait any longer than that or it will be too late to do anything for her.” Mark calmly an reverently said, “I understand.” There was nothing more to do so he discharged me that day from the hospital.  I knew my husband, and I knew what he was saying when he said we would take time to think about it…he was saying, we are going to pray about it! He just wanted to get me home and to a place where we could get peace and people to begin praying for us.

After we left the hospital that day, we called every ministry that we could think of and had people praying for us all across the nation. It was a matter of life and death! I had never experienced anything like that and haven’t since. But it was ohhhh  sooooo real!

Three months later, in October, the doctor’s office called to see if I was still alive! They made me an appointment for the next few weeks; to check me out…to see how bad I was! When I returned to the doctor’s office a few weeks later, the doctor concluded after numerous tests that the “Lupus is in remission”….(and it has been ever since!) He got around to telling me, “Well, it looks as though WE made a good decision not to do the chemo!” I thought, “ WE!” He was infuriated when I told him I wouldn’t do it – now he is agreeing with me! that’s a laugh!!! 

Each time something comes up and I’m hospitalized for one thing or another, all the doctors want to pin whatever ails me on Lupus. But in all these years since, every test for Lupus has been negative! When they say they are testing me for it, I tell them, “Go ahead! Check all you want. But you won’t find it.” Of course they all look at me strangely but then they never mention it again…and if I ask how the tests turned out, well, it was negative! I am not trying to be cocky, arrogant, rude or even “super-spiritual”. I just KNOW God healed me! Even though after all these years, they still won’t admit that the Lupus is gone and has been for years!  They always refer to it as being, “in remission”. Well that’s a long remission!!! lol And if HE can heal me then HE can heal you too!

And once He does something, it stays done. Symptoms may try to rear their ugly heads, but I quickly squash them with the Word of God. Some fights for my life are harder than others…but I refuse to give up, give in, or quit!

Now I’m not telling anyone to not do what their doctor suggest…but I must say that me, myself personally, I have to have peace about a situation – any situation – or I’m not comfortable going through with it! This philosophy has always seemed to work for me. Others must do what they have peace in doing.

In 1988 my kidneys totally failed. I was sooooo sick! I had projectile vomiting and explosive diarrhea, along with headaches and swelling of my extremities. My skin and the whites of my eyes were yellowing. I didn’t have an appetite and what I DID eat I couldn’t keep down…not even water! I couldn’t believe what was happening to me. My body seemed to be shutting down.  Another trip to the ER and once again, I was admitted to the hospital after the pleading of my doctor during a phone conversation. Upon arrival Dr. Bancroft, standing in the door with hand hands on his hips rushed me into an exam room. From the exam room they rushed me to ICU.

Later he revealed that if I had waited another two hours to come to the hospital, I would have died! The staff and medical team worked on me to keep me alive. It was horrible and devastating. All this time I was thinking I was healed, but now ESRD seemed to have won. My kidneys had totally failed! I was then implanted with a Quinton catheter place in my chest/neck just above my collarbone. This would enable me to do hemo-dialysis www.kidney.org/atozguides/hemodialysis; www.kidney.niddk.nih.gov;  until they could put in an AV graft in my lower left arm. This was the most painful thing I ever had done!

After a year I was finally able to use my hand again. During that year it was almost impossible for me to dress myself, do my hair or do much of anything that required using two hands. You should have seen me trying to hold a potato and peel it! It was awful, the potato would roll right out of my hand. I couldn’t grasp a thing.

I went to the dialysis center for about a year and a half when my care seemed to be unimportant to them. They wouldn’t listen to me  at all about anything. When they pulled too much volume I would be sick and pass out. Most days I had to wait for someone to come get me – even though I drove myself – because I was too weak to drive. This created extra problems for my family.  My wonderful husband and I discussed it and he decided to go to UAB and do the training for home hemo. We went through several weeks  training and got the equipment delivered, set up for Mark to be able to do dialysis on me in the convenience of our home.  Somehow it seemed to work better for me – no driving, being sick, blood pressures dropping, etc – not having to get someone to come get my car and bring it home… and all I had to do was walk across the hall to my bedroom and go to bed.
We did the dialysis in the evenings after Mark got home from work. It was my job to circulate and sterilize the machine and have everything ready, sterile and pristine for us to proceed once he was home. I had the easiest job…setting up the machine and taking care of getting the needles ready, drawing up the lidocaine and heparin, taking my vital signs, and getting dinner ready so we could eat as soon as Mark came home. Then move on to dialysis; three days a week for three and a half hours a day.
Our nephrologist asked me to consider getting a renal (kidney) transplant. During that time my family was evaluated and was concluded that I didn’t have any living related donors.  So I was put on the waiting list of UNOS (United Network for Organ Sharing) www.unos.org. At that time, 1990, the list was like a year and a half to a three years wait period. Now, it’s much greater!
In July, 1992, I got a cadaver kidney donor, thanks to the UNOS list. A 22 yr. old young man, from Seattle, Wa. was killed in an automobile accident and had “organ donor” on his driver’s license. They cross-matched and typed him and put his information into the UNOS computer and my name was among 8 different people that got organs from him that day! I have kept that kidney for the past 21 years!!!   If it had not been for the loving caring person that gave of himself after death – by one simple act of putting it on his driver’s license – I would not be here now! I am all about transplantation now! In the beginning I wasn’t… When I was first approached by the doctor to do a transplant, I thought, “I can’t do this…it’s like playing God.” But I prayed about it, and asked the Lord that if it was HIS will for me to do this then he would bring the perfect one for me. And, He did!
The Doctors have been amazed that I’ve kept a cadaver kidney as long as I have!
I honestly believed it would take me through the rest of my life! But it didn’t… and it won’t!

When a doctor tells you to get your affairs in order because you are about to die, it becomes the most important thing in your life. Our minds naturally go there…what do we do to put our affairs in order? Do we go ahead – in case God doesn’t intervene – and plan our funerals? Do we begin telling our families good-bye? A million questions ran through my mind. I was at that place before, many years ago. But I’ve learned over the years that, that is a dark place of possibly no return. It leads to destruction, depression, and  grief!

We can’t give in to those inner voices that tell us it will never get any better and we just need to give up, throw in the towel, just quit fighting!  Rather listen to the still small voice inwardly, quietly that says to “remain strong…be positive…put up the fight of your life”! BELIEVE!!!   We must do what we can to remain peaceful and positive…for the best outcome! God is the God of the impossible! I’ve said for many years now, “Nothing is impossible with God. Put HIM in front of impossible and you have HIMPOSSIBLE!!!

 In January of this year, my kidney of twenty-one years, began failing. The nephrologist told me that I’d have to have another graft – a fistula – surgically trans positioned in my upper left forearm.  So, in March of this year I had that fistula grafted in. I started hemodialysis again in May.
After 21 years, I fought it with everything in me. I felt I was too old, I am 23 yrs. older than I was when on dialysis the first time. I remembered how awful it was before and how sick I stayed the entire time. I felt I was existing not living! I just simply couldn’t do it again.  I was very sick. There were many days that I spent in bed. Mostly because I had to, I wasn’t able to cross the house without being breathless and dizzy. I would almost pass out going from the bed to the Master bathroom adjoining my bedroom.

Message Sent (go back)

But there were days I didn’t WANT to because I was depressed from the fact that this was all happening all over again!
to be continued…