This is a hard topic for me to give advice about but after thinking of it for several months I decided to write down what anyone will face while trying to cope with a major medical catastrophe. I recently felt bad one day and decided to go to the hospital to have myself checked out. I am the type of person that works till I die (so I thought) but God had a different idea than what I had in mind. I had been laid off from my previous employer due to the closing of the office and after 4 months of searching I finally found a job. After one week of being there I felt something was wrong and asked the wife to take me to the hospital. The doctor took one look at me and asked my if I knew my skin was yellow. A sign of Jaundice which meant my liver was in trouble. I don’t drink but the final analysis was my liver had quit working and there was nothing they could do except send me to St Luke Hospital in hopes of a transplant. I was transported by ambulance and admitted the next day and went through several more test but my body was blotting up due to the liquids that were being retained. My Kidney were not working well and soon after surgery went into shock and failed. I turned into a diabetic after surgery as well. (This is another problem that occurred after surgery that I am now left to handle and get on the kidney transplant list). My emphasis was on the liver at first and I was in a downward spin. I told my wife to call the kids and let me say goodbye while I was still conscious. I remember my father going through the same thing I was going through and knew it was a matter of time that I would not be here.
Since I had just started my job I had only paid for the first month of my insurance so I knew there would be no more health insurance after this month to help me. My bank accounts were low and I did not have enough money to cover for any long tern care or way to pay for my home or cars. No disability insurance, and no way to come up with any quick money to suffice the hospital in putting me on the transplant list. In order to be admitted you have to have the financial backing for the year to cover your medical cost of surgery and the price of the pills that you have to take in order to survive the daily threat of dying. I was in a pickle!!
I called my employer and told them I could not fulfill my job function anymore since I was dying and they would have to find someone else cause I did not know what was to become of me. My wife and I prayed and cried together and she was devastated that I was going to die. “Not much I can do about that” I told her. Its all in God’s hand now but I am ready to face my fate. The following day I got a call from my employer office and they asked me If they could do something for me. I told them sure. Two days later my office VP came to visit me and present me with a termination letter that I had to sign. With my resignation they offered me a severance package which I was surprised in that they paid for my health insurance for a year so that I could get on the transplant list. WOW!!! This was unexpected as I only worked for them for a week. Who would have done this for you? I cried like a baby and could not control my tears. God works in mysterious ways I thought, and this provided me with the testing to continue so I could get on the transplant list.
I still knew I would not be able to afford my home or pay my bills but I was not worried about those as much as I thought about how my wife would be taken care of. I knew I had a Life insurance policy and if I died she would be okay to pay for the house and have some money for at least a year. (not very good planning cause I never thought it would happen to me!!). All my children were grown up and had their lives to live so I was okay there I thought. However I would never see grandchildren like my father never did also.
My mind was racing away between test and being put to sleep for some of them but my body was retaining liquids and getting bigger by the day and eventually I could not breath. They took me to remove the liquid from my abdomen and 4 litre each day was removed for the next 4 days. My body was so blotted that blood vessels from my lungs were finding their way to my nose and esophagus and causing me to bleed internally. This was the worst feeling I ever had and there was nothing I could do about it. My legs were blotted where I could not put any shoes on not even sandals. My body was shutting down. Doctors gave me thirty days to live and I can tell you now I knew I would be close to death if I did not get help.
My room was always full of doctors every morning which I was grateful for the care they showed cause they were looking at everything and doing everything to keep me alive. After the first week of being in the hospital I was almost ready to be placed on the transplant list but there were three test that needed to be completed for the second week. The days seem to go by fast as I was always being asked to do more test but my mind would worry about my status and how I was going to pay my bills. We had social workers, financial workers, dietitians, physical care assistants, nurses, nurses assistants, religious clergy, and volunteer come to see me. I felt very humble knowing that many people cared about me and the prayer groups my mother, mother in law, friends and coworkers had for me I know helped a lot in directing the Lord to look over me. As my visitors would come to see me all I could was smile and make them feel at home. I like to tell stories and get my audience involved. Just like I have you now!! Want to know more?
I am a simple man which God gave a gift to share with others and am finally now understanding what he wants me to do and teach. You see we all need help now and then and we need something to push us forward to do what you were designed to do in your life. I have been in the Information Technology field for the past 30 years and have always worked my 80 hr weeks. (as many of us do!!) for a 40 hr pay. Apart from that 2 hrs travel to work each day and that is on a good day!! I spent more time in my car than with my wife and children. I love to teach and help others achieve their goals. So this laying in bed for two weeks was already getting to me. yet I was being shown to listen and learn who I was. I never thought of me!! Who was I and why was I in this pickle?
I looked back at the past and tried to understand how I did not see the signs. You see I am 6’2″ and weighed 300 lbs and always thought I was just fat due to my good eating habits. However when I started to think of my dinner portions for the past year I ate very little but gained weight. I did not realize that these were signs of something going wrong in my body (liquid retention). Going to the bathroom 5 times a night for the past month seem normal since I get up early anyway to go to work but I also went to frequent to urinate while at work also. I just did not put the puzzle together till it was too late. For those of you who procrastinate about your health “DONT” wait to be told! Remember what you drink must come out. If you think you have a problem measure what you drink in a day and see if your body removes it at the end of the day. Measure it!! If you body retains more and you cant get rid of it then you have something wrong.
My test were all completed and I was finally placed on the transplant list with a MELD score of 44. The top of the MELD score is 40 which means your in the 75% mortality range unless you get help. OOPS!! I guess I was in the 90%? The next problem was trying to find a donor that would match my rare blood type. This was one that only God again could provide. There was no way this could happen for me since I just got on the transplant list and there were many others in front of me. I was grateful to be on the list but I really thought it was a long shot since I had heard there were many people on the waiting list. Two days later a match was found and I was operated right after Thanksgiving!! A miracle for me but I was really feeling guilty that someone had to die to give me a chance to live again. This has been on my mind and I honor that person who gave me life again. I wish I knew who this person was or their family but I have not heard back from the letter I sent out to the family thanking them for giving me life. I am forever in their debt and to the person who gave me a second chance at life.
I had a terrible reaction to the major surgery as I was engulfed by a light followed by darkness and an abyss. I knew I died on the operating table. The feeling was horrific. While the doctors were working away doing their thing, my body was placed on hold while they cut out my liver and was on life support systems while they placed the donor organ in me. In another blog I will describe these nightmares and places I was at which to my surprise I would never have dreamt this strange places I was at and who I was with.
The next four days I was in recovery ICU and was returned to surgery room due to issues and they had to open me back up to fix me up again. Wow!! I am glad I never woke up until several days later from my coma. not knowing where I was or how long I was under I was totally incoherent and did not know anything or could not say anything. My voice was gone! I could barely open my eyes. My eyes were failing me and I could not stay focus for any length of time. My wife would visit me when she was allowed and when she could be with me was there every step of the way and I was grateful for that. I am beginning to understand how important having good relationships are with everyone now and not be a hermit like I normally was. I have family members but we were never raised to be close to each other. I guess you can say we were given so much freedom while we were young that we developed our mentality that we only needed ourselves in life and no one else. Wrong!!! We need each other more as we grow older and need to look after each other. What a weirdo I was!! I never placed family values above my own. What a jerk! I thought to my self. I had to change this and now I have been given that second chance. Broke but now I know I have to redeem me to all my family. A work in progress that will take the rest of my second life!
Currently I am trying to get on the kidney transplant list but have to suffice the hospital with Social Security Supplements that I should have bought within the 6 month period after receiving your Medicare card. Having to deal with government bureaucracy and rules on how Social Security works and what you are limited to do is a job all of its own. Its like learning a foreign language. You think you understand it but your not understanding the consequence of your actions or even worse you forgot a step in the process and its back to the beginning. I am just glad my family paid for a lawyer to get my application processed correctly and within six months I was approved for SS Disability benefits due to my ESRD and being under 65. Medigap policies are the hardest ones to get when you have been diagnosed with ESRD. I was turned down 15 different times both online and calling and seeing that what they covered was all the same but the monthly charge of the policy premium ranged from 400.00 to 1500.00 and it all has to do with your initial deductible. Since this coverage is mandated by the federal government insurance carriers must obliged and provide the policy but the agents are under strict rules on how they can write up a person and what triggers a disqualification. If your under 65 its not easy and that is what I am finding out now.
There is more to this story but will add another blog when I have more time to write. Let me know if you read this and what if anything you want to know about after surgery and what I went through with the State, Federal and local help. I can only say I wish I was working again but I am not. No one will hire someone knowing you have a disability. I have been turned down several times but I keep trying and one day I hope to get back to work or open my own business.