My Story

Lynchburg's  Organ Transplant  Support Group

By God's Grace And Mercy...

                     My name is Herb Albert, I am a liver transplant recipient and this is my story...
 

                      While sitting in church on Sunday, my wife commented that my eyes looked strange. She stated that she was concerned  that I was sick and needed to seek medical attention. (This was preceded by two days of excruciating pain which lasted for hours each time. I can only describe the pain or liken this experience to a woman having labor pains non stop. After these two days the pains stopped and I thought it was gas, at least that's what I said.)  Later that evening at home I too agreed that my eyes had a yellowish tint to it. (jaundice) We both concluded that the quickest way to determine what was going on would be to  initiate lab work at the ER. So off to the ER we went. The results of the lab tests confirmed my fears.  I was sick, and not just the flu or a cold. I had hepatitis C and possible gall stones. The tests also revealed that my liver enzymes were out of sync as well. This was possibly caused by the hepatitis  C. however, further tests would be required to find out exactly what was going on. I prayed long and I prayed hard. This was not very easy to accept. I, for the most part had always considered myself to be in good health, didn't often get sick or suffer from colds or similar maladies. Enough was going on in my life already. I had just lost a job of almost fourteen years over what I saw as corporate power struggles and a need or want for new blood that was "moldable". At any rate I was out of work, angry, hurt, humiliated and now possibly very sick. I guess I no longer felt in control of my life. "Things" were happening at an alarming rate and I definitely felt like I was losing ground. Thank God for my wife and children, they were right there for moral support. I was referred to a Gastroenterologist for more in depth testing. I was scheduled for an ERCP which is a fancy acronym for an out patient procedure where they insert a tube with a camera on it down your throat to explore. Nothing like the confirmation of fears. My gall bladder was full of stones and would need to be removed. Lapiscopic surgery was ruled out because my gall bladder was in an unusual place behind the liver and the bile duct was also not traditionally positioned. I was told not to worry, that people often found such abnormalities within their bodies when it's time for some sort of surgery or observatory procedure. So, "do you want to do this before or after the holiday's" I'm asked. To me it didn't seem to make much difference so I opted for before the holidays as this would eliminate another yearly deduction. Thank God for insurance, and a policy that was, at least to this point covering almost everything. (even if it was only eighty percent, I thought, what if I didn't have any.!) Dear God, please let me not have liver disease, let the conflict with the enzymes being off be due to my gall bladder. I can live without a gall bladder. If there is some liver disease maybe my liver can heal itself. It's a known fact that this is possible. Lord, please help me.
Surgery was scheduled to be performed in December by Dr. William Gayle. During the surgery a biopsy of my liver would also be done to determine the extent of damage to my liver if any. Lord, please let this operation be successful.
December 1995
OPERATION SUCCESSFUL. My gall bladder was removed without any complications, however the liver biopsy revealed extensive liver disease. Whether it came from the hepatitis, years of drinking or both, I guess it really doesn't matter at this point. I've got it and that's all there is to it. Let's move on I told myself. Move on to what?  I didn't really know, however I felt a very strong sense of needing something to hold on to. Something to be certain of. Something.
 
 

                     My Gastroenterologist, (Dr. Robert Richards) suggested medication as a beginning treatment for the liver disease. We talked about the possibility that my liver may heal itself, however even if this were to happen no one could be sure to what extent this would occur. Medication could help prevent the disease from getting any worse. We talked extensively about the possible need for transplantation in the future. When?  How long?  How soon?  All questions that could not be answered with any certainty.                     {I hate wait and see situations...}
After many medications, and many months, and many changes to those medications, we (Doc, my body, and I) seemed to find a working combination of medicines that were effective. Effective at what? I wasn't sure, but I least I knew I wasn't getting worse. Or was I? You see I didn't have any symptoms, no pain, no visible afflictions, no discomfort. It was at times easy to pretend that I was getting better, maybe my liver was healing itself. Was this just a false sense of normalcy? Notice I said pretend. Having to take what seemed like mega doses of medication every day was a  sign that perhaps all was not well. The next nine months seemed to be uneventful in the sense that nothing to note got any worse, or any better either. I saw Dr. Richards on a regular basis and only occasional medicinal changes were made.
Then it started... Fluid, (also known as ascites). I began to develop fluid build up in my lower extremities as well as the abdominal area. Changes were made to my medications in an effort to reduce the fluid build up. We managed to reduce the build up in my legs and ankles but not in my stomach. More changes were made to my prescriptions. It seemed that with each office visit the amount of diuretics I was taking increased.(320mg lasix) I also developed a strange and unexplainable reaction to one of the medications. The glands in my neck swelled so large that I looked like a chipmunk with a mouth full of nuts. Oddly though, there was no pain or difficulty in swallowing associated with this new condition. Again, more changes to the medicines to try and alleviate this occurrence. Which by the way we finally did. Meanwhile my stomach was increasingly getting larger and I was gaining weight due to the fluid gain. Increased pressure was building up in my chest, I was having difficulty eating and breathing. As the diuretics were not working the next alternative was to remove the fluid through a procedure called "paracentisis". A needle is inserted into the abdomen (carefully of course) and another tube is inserted through this thereby allowing the fluid to be drained by suction. Not as much fun as one would imagine. The results however, were great. Six liters of fluid and probably twice as many pounds were removed in a matter of one hour. I felt overwhelmingly relieved.
                     Relief was short lived as the fluid was slowly but consistently returning. The rate of increase also seemed to hasten. The removal of fluid moved from once every six weeks or so to every seven days. Fluid in amounts of ten to twelve liters (and thirty pounds of weight) were now being removed routinely. Early morning rendezvous with my Doctor were becoming common place. I was on a first name basis with practically all of the hospital staff. I was getting a first hand experience of feeling and living what it felt like to be very pregnant several times a month. I had even gotten to the point where I felt I could do the procedure on my own. (talk about familiarity with unpleasant situations) To make matters worse the fluid taps were always followed by severe cramping of the legs. (because of the great volume of fluid shifts in the body) Cramps beyond description were experienced. Three and four places in each leg at the same time throughout the night. There was no medication to be given for this condition as they no longer used quinine, Tylenol was the only pain reliever I could take because of the liver disease and that didn't help at all. I did however find that prayer almost always eased most of the pain. Thank you Lord. As this continued, my body weight was declining steadily, my appetite was decreasing, my energy level was next to none. The constant removal of fluid also removed much needed proteins and nutrients from my body. I was depressed and I was sick, very sick. Thank God for the people in my life who are supportive.

                     March 97, Thursday before Good Friday. I had to call in sick at work. I just couldn't get out of bed. I knew it was coming to this as it was becoming increasingly more difficult each day to go to work. I thought I just needed to rest for a day or so. Little did I know that this would be my last day at work. It was clear that the medications that once seemed to be working were no longer effective. Dr. Richards and I began to talk seriously about transplantation as a next alternative. I was referred to The University of VA. April 97. The Virginia Organ Procurement Agency (VOPA) and several area organizations sponsored a training/presentation which I attended. There were professionals from the health care field that dealt with organ donation, transplantation and procurement. There were also transplant recipients who gave personal testimonials that dealt with their transplants. Reality set in. This was me. This was no longer my true life friend who was a kidney transplant recipient. This was now my reality to be. Or maybe not to be. Lord, help me. I'm so afraid. My wife and children were very supportive and involved in every step of my experience. We dealt with this as a family although none of us really knew from day to day what we were actually dealing with. My extended family was also very much involved and were positive and supportive as well.
                     May 29, 1997 - my first appointment at the transplant clinic, University of Virginia Medical Services Center, Charlottesville VA. There I met Dr. Cynthia Yoshida, a person whom I am convinced to this very day was sent by God personally to administer to me both medically and spiritually. We embarked on an endeavor that would become a very lengthy and thorough examination of my history both verbally and physically. The interview solicited everything about my being; work habits, personal habits, family habits and history, thoughts, feelings, diet, likes, dislikes, you name it - it was questioned or so it seemed. The physical exams were to be just as thorough as you have to be eligible first. Fifteen tubes of blood were required just for starters. (little did I know that I would later become a human pin cushion, it seemed like they couldn't tell who you were unless they had some of your blood. Imagine, you have to "qualify" for a spot on the transplant list first. Your body must pass strict requirements before you're even considered. This seems to be a "Catch-22". You've got to be sick enough before you're placed on the transplant list, but if you're too sick you won't qualify! Lord, help me. With the preliminary results in, I looked like a prospective candidate. I wasn't even sure I wanted to do this. The whole idea of transplantation had yet to really sink in. Of course further examinations and tests would be required. An MRI was scheduled as were, echo-cardiograms, lung test, more blood work, muscle conditions were examined, chest x-rays, hearing, eye and dental exams were also conducted.  I felt every inch of my total being was under scrutiny. Physically, emotionally, psychologically, and spiritually.
                     As a result of all of the "preliminary" tests, the topic of discussion was leaning towards a procedure short of transplantation called a "TIPS procedure". This is considered a bridge to transplantation and not necessarily a cure or replacement for such. This procedure involves the implantation of a shunt into the liver to divert the flow of blood. After being given a local anesthetic a catheter would be routed through a main artery in the neck or arm, through the heart into the abdominal cavity into the liver where the shunt would be inserted. This in turn would reduce the amount of pressure on the liver enabling it to work more effectively, with the end result being less fluid build up. Less fluid build up, perhaps a slower rate of deterioration of the liver, perhaps broadening the time gap for a transplant. I was assured that this was a routine procedure and was performed on a regular basis. There was very little risk involved as the entire operation could be monitored by video. After several trips back and forth to UVA all concerned parties were in agreement to go the TIPS route. This seemed the logical choice as my biggest problem was with ascites (fluid) which this would clearly eliminate. Surgery is scheduled for the TIPS procedure.

                     July 1997
                     Surgery is successful. Thank God. After four hours of having to lay almost perfectly still, the shunt is in place and should be working. Next week an ultra sound will be done to determine the effectiveness of the shunt. Ultra sound showed that the shunt was performing only partially. There seemed to be some sort of blockage or clog in the shunt. They would have to re-enter and clear the blockage. Second surgery - As the original shunt was already in place this second procedure would not require anesthesia or take as long. It would be a simple matter of threading a catheter inside again and unclogging the shunt. With the pressure of what felt like an elephant on my chest, no anesthesia and SIX Hours later the procedure was completed. Again an ultra sound would be performed in about a week to see if the shunt is working. Meanwhile, surgery is scheduled to clamp off varices (swollen and bleeding veins in my esophagus). For this surgery I was completely out and upon waking, only experienced a mild irritation in my throat. Again, the ultrasound for TIPS showed no improvement.
                     Fluid continues to be a major problem. It is being removed on a weekly basis. My weight is rapidly declining. Energy and appetite levels have dropped drastically. Each day affords me about two good hours of activity. After that I'm completely exhausted and refined to the bed. TIPS procedure needs to performed again. As one would imagine my emotional and spiritual state of being is quite fragile by now. Having to deal with an entourage of probably fifteen members on my team consisting of Doctors, nurses students, residents, aides etc. has made my daily life rather frustrating. By UVA being a teaching hospital your team members always change. There are always outside opinions and diagnosis. We are definitely not always on the same page.

                     A third TIPS procedure is scheduled. This time not lasting as long and the results seemed at first to be better than the previous procedures.

                     Completely exhausted, depressed  and angry. I wanted out. Feeling like I had come full circle and was not really any better off than when all of these procedures started, I wanted to go home. I needed time alone to pray, to reflect, to think. As soon as I could I convened a meeting with "the team". I informed them of my wishes to be included in any and all conversations regarding my health. I insisted that I be kept informed as to what their thoughts, and or recommendations were. From now on we were going to "dance to the same music". No more waiting until we get there too decide whether or not to cross the bridge. We were going to have a game plan before we reached the bridge. I felt better. The remainder of my stay was much better. Discharged and at home again, my routine hadn't changed much. Weekly visits to the hospital for fluid removal. Mega doses of diuretics in between. Little or no consumption of food. Energy level at an all time low. My condition was clearly getting worse by the day. My only relief was found in prayer and the comfort of loved ones who were always present. I have been truly blessed with an outpouring of love and concern from friends, family and even total strangers. My church family and other churches have placed me on their prayer lists and continual pray for healing and God's will to be done.
 

                     August 1997
                     I received a call from Doctor Yoshida, a liver specialist at UVA who said she wanted me to consider coming to the hospital for an early admittance and remain there until I received a transplant. My Lord, My Lord. I was speechless, I had never, ever, considered something of this magnitude. I had somewhat prepared myself for having to stay in the hospital after a possible transplant but, not prior to one. If and when you are placed on the transplant list it can take eighteen months, a year, two years. In fact thousands of patients die every year while waiting for a suitable match.
 

                     "My Lord, what would thou have me do?  I prayed, and prayed, and prayed some more. Lord, my father in heaven. All wise and all knowing, I praise you and I honor you. I ask heavenly father that you lead, guide and direct me. Open my heart to understanding, that I may be compliant with your will. Strengthen me if it be your holy will. Heal me, it that too is your divine will. Help me to accept the outcome of my situation whatever it may be. Heavenly father I ask you to please forgive me of my sins. Those sins I have committed against my fellow man, as well as those I have committed against you. I ask you dear Lord to have mercy upon me. I know that it is because of your grace and mercy that I have been brought this far. Father thank you for the many blessing you have already bestowed upon me and my family. Father thank you for my family and friends who have been so supportive of me during my illness. I thank you for the Doctors on this transplant team who are trying to heal me. Let them know also that you are in control. Let them realize that without you they can do nothing. Guide their thoughts, Father guide their hands and Father place in their hearts a meekness and a humble attitude that would allow them to be directed by you. Heavenly Father I pray for patients who are worse off than I am. Heal their bodies if it be your will, ease their pains and place reassurance in their hearts and minds. Father be with their families also. Give them courage and faith. I pray heavenly Father that they will trust you too. Father, ease the pain of the donor families as they are making tremendous sacrifices. Console them during their time of great loss. Give them comfort in knowing that their loved ones will give life to someone who would otherwise not have one. In Jesus name I pray and give thanks.                 Amen."
 

                     After a lot of prayer and discussion with my family, I have been led by the Holy Spirit to consent to the wishes of my Doctor and enter the hospital early. Dr. Yoshida felt that I would have a better chance of getting a transplant if I were hospitalized as opposed to waiting for one at home. We scheduled my admission for approximately two weeks from now. Three days later I was in the emergency room bleeding internally. Immediately I was referred to UVA.

                     September 4, 1997
                     I was back at UVA in Charlottesville sooner than planned. First order of business was to stop the bleeding, however fluid needed to be removed first. The fluid tapped. The bleeding was stopped through another surgery to clamp off varices. A new development now arose. The Doctor who was heading up the transplant team felt that I was too sick to survive a transplant and that he was going to recommend a discharge. "A discharge to what?" I asked. "To go home and die? Lord if I ever needed you, I think I need you now. This was Friday. Doctor Yoshida my regular Dr. would be returning from vacation on Monday. I asked if I could at least stay until then as this was her idea.     Granted.
 

                     Monday morning Dr. Yoshida arrived. She immediately stepped in and demanded that I was not going to be discharged. In fact I was definitely going to be placed on the transplant list and was going to receive a transplant as well. Isn't it wonderful how God just removes people who don't need to be in your life and places persons in your life who need to be there. God is awesome. Five days later (September 9, 1997) I was placed on the list to receive a transplant. (I wondered quietly to myself how long this might take. This being too much to try and consume, I turned to quiet prayer, instead of reckless thought.) What does one do while waiting. Sometimes we find things to fill in the void that has been created by forces beyond our control. Occupying ourselves with busy work, relaxing tasks, the company of others. Whatever. This however, is a different kind of waiting, like none I've ever experienced before. Objects nor pastime pleasures seemed to erase the thoughts of apprehension. The "what if's". The thought of the real possibility of not finding an organ donor match. The lonely sort of emptiness that can't clearly be expressed. The struggle to remain positive and not to succumb to self-pity and depression. Once again I find solace in prayer and the comforting thoughts, words and prayers of loved ones. You see I've been reassured by the Holy Spirit that everything will be all right if I put my trust in the Lord. Which I've been doing and thus far I've not been let down. My wife continues to be by my side almost every day. Her faith has been unshakable, she has and refuses to doubt the power of God. She is truly a blessing and an inspiration to all around us. My sons have also been trying to cope and deal with this situation as best to be expected. After all, how does one deal with something of this nature. Certainly something that none of us have ever been through. My mother, father, sisters, and brothers have all been visiting on a regular basis regardless of what part of the country they live in. My Pastor, my church family have all been praying for me. In fact everyone I know has me on their prayer list at their respective churches. My roommate is a minister. He and his wife have been very supportive. Their love is really making a difference in my life. His wife has had her family place my name on the 'wailing wall" in Jerusalem. The power of prayer can actually be felt as it is lifted up. No matter from whence or where it is initiated. God certainly knows what I need and has been providing for my emotional and spiritual needs as well. I've even had a Doctor request to have prayer with me. When I consented he said he'd like to do this on a regular basis. I feel that most of the Doctor's, aides, interns, residents and other "team" members  definitely believe in the power of God.
                     Of course like everywhere, some persons are here only for self gratification, a paycheck, or to be able to say they're employed somewhere. There are however, many more who are led and guided by the Holy Spirit. At this point I have almost no appetite at all. I long for fluids (water mostly) from which I am strictly restricted from.  Blood work is done twice a day, why so much I'm not really sure of. I'm told they always need to type and cross for emergencies . ???.  At any rate, only the best of the best from the  IV team can get anything from these arms of mine. My veins have all but disappeared, warm compresses need to be wrapped on my arms most days prior to drawing blood just to get the hint of a vein to surface. They usually manage. Doctor's are the worst at drawing blood, probably because the so rarely do it. Chest x-rays and ultra sounds are routine now. I can't for the life of me figure out exactly what they're looking for that they haven't already seen. Because I was exposed to a virus called VRE (Vancomycin Resistant Enterococcus)  from an earlier admission, precautionary measures are now taken. Everyone entering my room must wear a mask, gown and gloves. Most test conducted outside of my room are only done at the end of the day when all other patients have been seen. (more clean up after VRE exposed patients is needed) VRE, this strange new (to me) virus that they don't even treat medically, as it usually goes away by itself, has all of a sudden taken some of the ordinariness out of my life. (as if it were still actually ordinary) I feel like I've got the plague or something. People act like they're even afraid to talk to me. most certainly don't want to touch me. Then on the other hand some treat me as though nothing at all has changed.
 
 

                     September 16, 1997
                     News!!!
                     I have been informed that they may have a liver for me. Further evaluation would have to been conducted before it is certain. Is this really happening to me. It's only been eight days. Thank you Jesus.
 
 

                     If all went according to plan, the surgery would begin at around 5:00 am. A sleepless night to say the least. The longest night of my life to be sure. Many members of my transplant team were very positive and confident that things would be allright. Of course they immediately needed more blood, x-rays etc. for Last minute readiness. I showered and tried my best to relax. Impossible. My wife and I prayed. My roommate, minister, liver transplant patient, with current kidney problems and now friend has been very helpful. He, his wife and other family members have been a blessing.

                     September 17, 1997  -  6:00 am

                     They came for me. it was time. I remember talking to the anesthesiologist and several Doctors. Nine hours later the transplant was completed and successful!!!

                     PRAISE THE LORD!!!
 

                     Although I don't remember, they say the next day I was sitting up, talking and doing well. I guess as well as anyone could expect after such an ordeal.
 
 
 

                     * Suddenly my condition changed. The oxygen level in my blood dropped dramatically. My blood pressure shot up, and out of control. They began to slowly sedate me in order to keep me comfortable. After several days of extensive testing it was discovered that I had a hole in my heart, which had probably been there since birth. Everyone is born with this condition however under normal circumstances the hole closes. The trauma and amount of pressure from the transplant and the new organ increased pressure which did not allow the blood to pick up the needed oxygen to carry it to the new liver or the rest of my body. Sedation increased, to the point that I was completely sedated. I was placed on a respirator and other life sustaining systems. My condition didn't change nor could the Doctor's readily prescribe an answer. This lasted for six weeks until one of the rotating team Doctor's said that "we will be here until Christmas unless we start doing something." It was at this point they started trying some things that began to help me to respond on my own. They reduced some of the medications that kept me sedated.. they used nitrous oxide in an attempt to balance the oxygen levels. All of this along with dialysis and who knows what else began to work. Somewhere towards the end of October  I began to gain consciousness. My wife had originally wanted me out of intensive care for her birthday (October 27th), My being somewhat alert near this date was good enough for her, even though I was not out of ICU yet. My initial reaction to what seemed like a new world was extremely fearful. I didn't know where I was or why I experienced pain in certain parts of my body. What became ever so frightening was that I couldn't seem to move. Anything. My eyes and my head were about the only things I felt I had any control of and that seemed limited. To move my arms or hands took a tremendous amount of energy and concentration. I slowly started to recognize my wife and family. Everyone else was a stranger. I remember distinctly that someone was hovered over my bed talking about moving me. this terrified me as I didn't recognize the person saying this, nor did I know where I even was or why I had to move. What was becoming increasingly frustrating was the fact that I was still on a respirator. I couldn't talk. AT ALL. They moved me as planned. I was now in the "Burn Unit." Burn unit? Why there? I certainly didn't remember being in a fire. I later found out that that was the only critical care floor that had available bed space.  Lord help the sick and afflicted. The next few days were spent in realizing that I was alive. I had received a new liver. And to think it took all of seventeen days. Not one year, eighteen months or two years. God has truly kept his promise to me.
 

                     My first few days post-transplant were spent weeping. I couldn't understand why I didn't have the strength to move my legs beneath my bed covers. Why couldn't I lift my arms in praise? I couldn't even sit up in bed. Everything , everything had to be done for me. from bathing, to bathroom breaks, to eating. I was dependent on my nurses, aides and my family. It was soon explained that because I was sedated for so long I lost a lot of muscle mass and strength thereby losing the use of most of my body's resources. I was assured that with therapy and a lot of hard work things would return to normal. Abnormal is definitely what I felt then. Not being able to sit up in bed was traumatic for me. I was still on a respirator. I literally had to learn how to walk, talk and use my hands and arms all over. I was being tube feed throughout most of the night and encouraged to eat during the day. After not eating for over six weeks and having had only drugs and chemicals in my system, food didn't even taste real to me. in fact, it had absolutely no taste at all. Blood work was still required as were x-rays and round the clock vital signs. Early morning visitations by post-transplant Doctor's are as common as a mother checking on a newborn. An IV became what felt like a permanent part of my arms. It felt somewhat strange to have gone through major surgery and not feel any healing pains from the scars. My body though, was pot marked with the tell tale signs of cuts, lesions, and scars where drain tubes, feeding tubes and other monitoring devices were obviously attached to my body. Hard as I tried, I couldn't remember any of it. The medication made my hands very unsteady thereby making it difficult to write, to gesture or communicate. Then relief came in the form of a neat little gadget that could be attached to my trachea tube which would amplify my weak voice. It was odd at first to hear my own voice. It was also tiring. With time my own voice was getting stronger, not completely back yet, but stronger. I was also able to move around in the bed a little more on my own. Soon I would start rehab to gain the use of my arms, my legs, my everything again. I asked about the feeding tubes being removed. The Doctor's said I had to eat more first. (more I couldn't eat at all. I had no taste, no appetite. I had no desire at all for food no matter how hard I tried as I knew the importance.) Then the Doctor's asked me how much of a supplement I could consume in a day (Good old sustacal) I said "if it was going to get these tubes out of my nose, I'll drink as much as they wanted me to and some. You see, I actually like it. In fact I really like it. It took all of two days then I was craving it. Ice cold, room temperature, right out of the can was fine for me. good thing too, it got the feeding tube removed.
                      Then I started realizing that I did remember something. It was not about the transplant surgery or the sedated state that I laid in for six weeks afterwards, however what I was recalling were nightmares. Many, many nightmares. Terrible and hideous nightmares. Nightmares of the deaths of loved ones.(my Father) My own death and funeral. A murder that I actually saw myself commit. In fact it took me a week to muster enough courage to ask my wife when the authorities were coming to arrest me for this crime. She calmly explained that I couldn't have committed a murder because I was in the hospital the entire time. She assured me that it was indeed only a nightmare and that it wasn't true. There were dreams were I was drowning. Many dreams that dealt with water and/or not being able to breathe. Dreams and more dreams continue to reappear each day in my mind. They play themselves out as if they actually happened. My wife and the social worker at the hospital have been very instrumental in helping me to sort through them. Angels (members of my church congregation), trips to heaven , dreams of my own resurrection were some of the more pleasant dreams. These also, were highly emotional.  It would take time I knew, before I was able to sort them out. Some, more time than others. The Doctor's explanation for the nightmares; The large amounts of drugs and chemical used to sedate me were responsible. One other Doctor put it this way; "God shields you from having to deal with such a traumatic physical, emotional and psychological experience by shutting the reality out and puts dreams and nightmares in it's place."
 

                     Bad news. First I was told the virus (VRE) I had been only exposed to before was now active and that I would have to be isolated. My own room. Privacy, both good and bad. This also posed another glitch regarding getting in to the rehab center. There I would also require a private room, which were few in number. They would not have a spot for me until December. Two months away. That was not good. I couldn't see myself just laying there waiting for a spot in the rehab center. I asked if I could receive therapy in my room. I knew I could do it. But I couldn't do it alone. But I was willing and determined to work. I prayed for strength. Not physical strength but inner strength to be able to endure, for courage, for faith, for conviction and for acceptance of God's will. I asked God to send the Holy Spirit to be with me and to allow me to be guided by it. Not to rely solely on my own resources but on the power of Jesus Christ who has brought me this far already.
                     The hospital, my team, whomever, consented. The trachea tube was removed. I was now moved to the transplant floor and ready to begin exercising. They would start by sending a occupational therapist to work with me. (two were assigned to me on a "as they could get to me basis") We started with foam squeeze balls, therabands on the sides of my bed, neck and leg exercises. After a few days we started balancing exercising which entailed two or three people lifting me out of bed and letting me attempt to stand in place on my own. Before I knew it I could actually feel myself getting stronger.  I was hoping it wasn't my imagination. It wasn't, I could actually stand alone for a few seconds at a time. They even had me sitting up in a chair. I was truly making progress and liking it. Next, a physical therapist was sent to work with me. By now I was taking baby steps from my bed to the door. Tony (the Physical Therapist) said it was time to explore the rest of the hospital. After about a week of exercising in the room to ascertain my strength he said it was time to learn to use a walker. I consented as I was more than eager to do anything to get stronger. I couldn't live having to depend on everyone for everything. After being given instructions on how to use the walker, I tried it. Unstable and unsure at first, it didn't take long before I was literally running up the wing. For some reason I couldn't be satisfied with just walking at a leisurely pace. Tony (the P.T.) would follow me with the wheelchair in case I got tired and needed to rest. At the end of the hall I was completely out of breath, but I refused to sit down. It felt so good no matter how tiring, to be able to walk and stand without a person on each side holding me up.
                     The next day Tony said I didn't need the wheelchair. I asked "what do I do if I get tired." He said not to worry, because I won't get tired. Tony was very supportive of my desire to work at getting better. He allowed me to work as hard as I could. In fact, now that I look back he even came back to my room after having already exercised to see if I wanted to work some more. To which I would always say yes. After only a couple of days I was told that I was getting rid of the walker. "What then will I use?" he said "a cane." I was somewhat apprehensive about this, especially about my balance. Tony said that if I felt like I would lose my balance to either lean into the wall or to simply fall back  and he would catch me. He had put so much faith in me that I had no choice but to trust him.
                     I was now running up and down the halls on a cane. Everyone was so proud of the progress I was making and so was I. They had named me the "miracle man". Before I knew it I was walking up and down steps, I wasn't getting out of breath. I was bathing and feeding myself. I could get in and out of bed at will. (almost) They still wanted me to sit up each day for a couple of hours to build up my strength. They definitely wanted me to walk as much as possible as this was the one most important form of exercise to regain my energy and strength. It has been about three weeks and still no word about the rehab center. Now the talk is about: possibly discharging from UVA and transferring to a hospital where I could get rehab therapy; discharging from UVA and going home to receive outpatient or in home therapy; or both. All of the possibilities would be explored. My therapists who have been working with me thus far, as well as the transplant team would have a very important decision to make regarding my readiness. More importantly I would have to be the one who ultimately would decide what I felt I wanted to or could do. This would take a least a few days as everyone, including myself would need to think and sort things out in order to make a rational decision.
                     Meanwhile I told my wife that I wanted to visit the "SICU". (surgical intensive care unit) This was something several of the transplant Doctor's also suggested. They felt it would be good for everyone over there who worked with me to see me now that I'm "healed" and mobile. It most cases, nurses, Doctor's, aides and others who work with intensive care patients only see them one way. They're usually wheeled in, comatose, unconscious, and not able to talk. Then they leave the same way, never to be seen again. Rarely even heard of. Now they would get the opportunity to see a person almost come "full circle". I was very nervous about this because I didn't remember any of it. I wouldn't remember any faces. It almost felt like I would be visiting the place where I was "born again."  ...I think I'm ready.

                     My skin tingled as I walked through the doors to the "SICU".  Theses are the same doors that were visible  from my room for the past few weeks. I often wondered what was even behind them. I was about to find out. I walked past cubicles that housed so much electronic equipment with lights and monitors, tubes and wires, lights and graphs, beeps and signals, cords and instruments; all attached to a human being. I felt weak at the knees and tears welled in my eyes at the thought of picturing myself in these persons place. I could not fathom the thought. Although I knew it was true. Almost all of the staff present knew who I was and they were clearly elated. I was their "miracle man" and they were truly happy to see me. Introductions were conducted by my wife as I certainly didn't remember them. There were a couple of nurses whom I did recognize probably because they worked on and with me before and after the transplant. I thanked each of them for everything they did for me and wished them God speed. There was a certain sparkle in their eyes as my wife and I departed. Truly, God is using them in a marvelous way. I wondered for a moment if I could ever do their jobs. Days like these wear you out just from the emotional energy you expend.
                     The next few days find me continuing to exercise. I have been increasingly getting more and more anxious about going home. I've been talking to the social worker (Phyllis, another God sent person) about my alternatives. I would like to opt for going home with follow up therapy provided at a local facility at home. All of my physical and occupational therapists agree that I should be able to handle this with little or no problem. Now it's wait and see what the Doctor's think. Either way I'm ready to go home. Meanwhile my nurses have been working with me to learn my medicines and the scheduling of them as well. Once I go home it's going to be up to me to manage my medication on my on. Believe me, we're talking a lot of medication to manage. I will also have to record my vital signs daily and have my lab work completed twice a week. A home exercise program has been developed for me. Finally, late in November everyone is in agreement that I'm ready to go home. Thank God! Having now learned all of my medications, their dosages and frequencies, that part is taken care of. Lots of paper work to be completed. Final contact with the hospital where I'll be receiving out patient therapy has to be made. Several discharge checklists are gone over to be certain I'm prepared for this majorstep in my recovery. I pass with flying colors!!!
 
 

                     November 25, 1997  I'm being discharged. I've managed to bypass the rehab center altogether and I'm going home!  I'm told that this is very rare (having no formal rehab) as was such a quick and thorough recovery. I thank God for this and owe it all to Him. Without God in my life, my wife and family, with Him not present in my Doctor's, nurses, aides, technicians, social worker, therapists, the chapel and it's staff and this great medical institution none of this would have been possible. Upon my arrival at home, I was so excited I literally fell through the door.  I had to adjust to everything as my bed was lower, the bathroom stool was lower, some things were higher. Almost everything seemed strange. I guess one can really get used to being hospitalized or at least adapting to changes. The first morning I awoke and didn't remember where I was. All of this soon eased into normalcy. Eating was still difficult yet I knew I needed to eat, as I weighed a whopping 114 lbs. My wife had already instructed me that there would be no wheelchairs, walkers or laying around when I got home. There would however, be lots of eating, exercise and whatever else the hospital or she ordered. No problem. I knew she was right. Thank God for my wife. She never faltered. She never doubted.
                     Home for the holidays. Thanksgiving and CHRISTmas have a whole new meaning. I started driving on Christmas day. I had already received my present, at least the only one I really wanted. That was to be healed, to be home, and to be with my family. I went once a week for physical therapy at the local hospital. After four visits, I was told that I no longer needed to come in. They said that I had done very well; however, the exercises and work that I was doing there I could do at home on my own. Having had my first biopsy In December which I feared. Everything turned out O.K.  The next one would be scheduled for February.
                     My appetite is slowly getting better, I've been exercising at home and getting stronger all the time. My wife, true to her word has seen to it that I receive plenty of exercise. I think she's been dragging me to the stores whether we need anything or not. At any rate, I'm getting my exercise. I'm even gaining weight. I've got my routine down regarding medications and the monitoring of my vital signs as well. Working around the house and getting out (to walk) everyday has built my confidence and my stamina. I no longer get tired or require naps (as I once did). I feel like I'm ready to go back to work even though most people I mention this to say it's too early. I called my transplant coordinator at UVA as the hospital still follows my every move. From lab work and vital signs, to sniffles. The transplant coordinator seemed hesitant. She wants to talk it over with my Doctor's first. I told my wife that regardless of what they said, I felt that I was ready, however we'll wait and see. After going through what I just have, one learns not to be impatient and to trust the judgment, (or at least hear it) of others.

                      February 1998 biopsy and check up.
                      Biopsy O.K. and I've been given clearance for a job search. Since my transplant I've been "testifying" about my experience and telling everyone who'll listen. My wife has cautioned me, that I should use care when looking for work. No matter how illegal it may be, transplant patients are not high favorites when it comes to insurance. Whatever, I'm not going to stop telling people how good God has been to me. I been sending resumes out. (slowly) Putting feelers out, however, no bites yet. As far as I'm concerned, I'll be happy to work, regardless of where it is or what I'm doing. Early April - taking a test for Ericsson Communications. Passed. Hired. Orientation and I'm off. Employed, even though it's not permanent, my "foot is in the door."  It's easy work (building cell phones) eight hours and low level stress. Actually, there are a lot of stressed out employees there, but I guess after you've been through a organ transplant your tolerance level for stress is increased greatly.
 
 
 
 

                     May 1998
                      Biopsy and check up.
                      Biopsy O.K. Some slight traces of hepatitis evident in the biopsy, However not showing up in the lab work. According to the Doctor's, not enough to be concerned about, they'll watch it closely I'm sure. The major concern and the reason for the many biopsies is to closely monitor any increased presence of the hepatitis C. If this occurs my new liver is in jeopardy of being attacked by it. It was explained to me that hepatitis can be treated with medications however, the medicines involved cause some very unpleasant side effects. I don't know if the regularity of biopsies is required for liver transplant patients where Hepatitis is not present. We will pray for continued good health if it is the Lord's will. I continue to take my medications as prescribed and monitor my vital signs as well. It is very important to me that I do all that is within my power to maintain this precious gift of a second chance in life.
 

                      ...Since my transplant I've gained about fifty+ pounds. My energy level is great. I'm back to getting up early mornings (5-6 a.m.) and going to bed after the 11 o'clock news. There have been no restrictions placed on me whether about work, diet or otherwise. Thank God.
 
 

                     I hope and pray that my experience will give someone else a little hope, a little reassurance, a little insight, a little comfort. Remember that all things are possible, if you believe. Faith and trust in God worked for me. The support I had from family and friends alike was a Godsend. However afraid, depressed or angry you get, don't give up. Once you give up, no one else can provide for you the strength required to overcome such an ordeal. If a second chance at life is worth it to you, you'll have to work hard, very hard. It may in the end, seem like the hardest thing you've ever done. It will more than likely, very well be. But don't give up. Keep on pushing forward, you'll have plenty of time to look back.
 

                      No one can tell you what the outcome of your particular situation will be. I certainly can't say that you will or will not be as fortunate or blessed as I have been. In closing, one very important thing. I urge you to pray without ceasing that  God's will be done, not yours. In doing this it is easier to understand what is happening and accept things as they are. All things are done for a reason and God is the only one who has the answer to all things!
 

                     GOD BLESS!!!
 
 

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