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About Woody2205

Woody2205 started this conversation

DOWN BUT NOT OUT

My name is Woody it's really my nickname. I'm a 51 years old, Africian American who has End Stage Renal Disease. Meaning kidney failure. I have been on dialysis since May, 1999.  Let's just say to me that was the beginning of my demise of health.  You see I use to be a cross country truck driver who ran the road for 30 years or so.  I was blessed in 1986 to find and train a lovely young lady to be my co-partner in life as well as work.  We drove as a team as a husband and wife team.  Well I was coming down with a real bad cold, so I thought.  I never really had poor health in my younger days. So I was buying all kinds of over the counter cold remedies to eleviate my symptoms, not knowing all the long that I had high blood pressure and the medicines I was taking had antihistamines in them which can also elevate you blood pressure.  Well to make a long story short, I was eating and trying to see when I told my wife I think I'm going blind.  I couldn't see the doorway in the restaurant where we were eating.

She took me to the emergency room at the local hospital and there I was told that my kidneys were shutting down.  I was immediately put on dialysis. My blood pressure was 253/151, the doctor said it was a blessing that I didn't have a stroke. We were stuck in Jersey City, NJ when this transpired.  I was so scared I thought I was going to die right then and there.  All I remember was I want to come home. Back where I know some familiar faces and close to my family. 

Well back at home I had to find a nephrogolist who was going to take care of me.  I live in the midsouth Little Rock, AR to be exact.  Whether people believe me or not racism still exist in the twentyfirst century.  I have seen how the color of your skin also determines how some people including doctors treat you.  It's also ashame how your medical treatment is determined by the type of insurance you have.  So since I was a hard working labor who didn't have the best of insurance; I have only my government to help me through Medicare.  By the way, I was declared 100% full disabled once I was diagnosed with E.S.R.D.  We really didn't have any money saved up and never saw this medical disaster oncoming. I all hit like a ton of brick at once. 

Since becoming disabled with kidney failure my health has been slowly declining.  I was put on a very powerful drug called "Monoxidal" brand new or generically called "Loniten".  I was told my physician who administered it to me that "one of the side effects are it will make you extremely hairy."  That was basically the only warning that he said.  Four months into taking this drug, I started to experiencing difficulty breathing.  At first I thought I was too full of fluid. Everytime I tried to lay down I feel like I was drowning.  I started having trouble swallowing anything to eat or drink. At that point my wife took me to the hospital.  They gave me an Ecocardiagram to see what was going on in my upper chest area. Low and behold my wife gasped as she was looking at the machine.  The cardialogist said "My God your husband's heart in surrounded in a lake of fluid trapped in his pulmonary sac.  He was immediately taken to surgery and a drain window was put in his pulmonary sac to extract the fluid.  In total there was 4200 cc of fluid on him.  Dr. C.D. Williams world reknown cardialogist said "in all my years of surgery he had never seen this much fluid on a person heart and the fact that he was not dead was anything short of a miracle."  My regular cardialogist Dr. Joe Hargrove asked me whether or not I was on Monoxidal.  I told him yes and he said that was what caused the fluid to build up on my heart.  I was trapped and even dialysis could not pull it off. I survived that episode.

I've had my gallbladder removed. In 2007 I was diagnosed with arteroclerosis (severe vascular disease, hardening of the arteries).  I had my left leg amputated below the knee and 45 days later I had my right leg amputated above the knee (up to my thigh).  In 2009 my left arm where I take my dialysis treatment, clogged up and became inflammed where it was almost amputated.  I had wound vac treatment to restore my artery and arm.  I also have had my back lumbar L-5 - L-3 rebuilt and also my Cervic C-3 was collapsing.  I have 7 screws 3 1/2 inches placed in my neck to keep it in place.

My wife quit her job in October of 2007 in order to be my full time caregiver and if it wasn't for The Almighty Creator and the undying love from my wife, my life would have ended a long time ago.

I have never had to ask for any help in my life.  We survive solely on my Social Security Benefits. My monthly allotment is less than $1,000 after they take out for my medical of $96 monthly.  We are living under the poverty status.  My wife's back is slowly degenerating due to age and picking me up to get in our 1999 Chevy.  My handicap ramp is in need of repairing and we also really need a handicap van with a ramp or a lift.  I would like to apply for a grant under my disablity status to see if I am eligible for this grant.

 

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Betty14
 in response to Woody2205...   That doesn't even make sense!  I am very sorry for giving you misinformation, but I know that they used to do that.  I wonder when they stopped supporting the cohesive family?
reply to Betty14
Woody2205
 in response to Betty14...   

Hello Betty14:

We were told by several other people the same thing, but the truth of the matter was as long as we live under the same address or household no my spouse can not get any assistance for taking care of me.  We already looked into this. Thanks anyway.  If we had different addresses it could work, but we live together.

reply to Woody2205
Betty14

Woody, I am really so sorry for all your misfortune. Your wife's name is no doubt Angel. Yes, there is help for you. There are grant's available for your assistance. Your wife can and should apply for caregiver assistance through the Social Security Administration; they will pay her to care for you. There are also Weatherization programs available, so your Angel doesn't have t do the work herself (that's local). There are also the Habitat for Humanity program's for which you and your's should be eligible. Then, if more assistance is needed you can always apply to the government for emergency relief. Grant's. gov, etc. Have you chcked with local churches and utility companies? Call your state government and explain your situation to them. God Bless you and your's and Best wishes, as well... May God Himself bless and keep you safe and warm...

reply to Betty14
Starshine
 in response to Woody2205...   

Glad you got that help!! My best friends sister who I knew had the same disease and I had googled it and the only doctor with good sucess rate was in FL . She got someone out in Ca to do it  - It is very scary to have calcium loss and what it can do to your body.

God Bless and I hope things improve for you. I just saw this.

reply to Starshine
Woody2205

Boy am I glad to be home. I've been in the hospital for the last five days. I had my parathryroids removed and one transplanted back into my arm.  This is the result of my not being able to get this very expensive medicine called Sensipar.  Seems like many dialysis patient develop this problem.  These over active parathyroids were releasing too many hormones that were causing my body to lose calcium. Putting many other organs and bones in danger of failure or breaking.  My bones were constantly aching. My mind was restless, filled with confusing thoughts. I was hungry all the time, but losing weight rapidly.  My fingernails were starting to curl upward at the tips away from my flesh. My eyes started widening. My teeth are falling out my mouth, whole molars.  Since taking these parathyroids out and pumping up my vitamin D intake I'm starting to feel much better.  Moral to this story stay up on your meds, and if your doctor is not listening keep seeking some other means to get what you need.

reply to Woody2205
Woody2205

Today is Thursday, a dialysis day. I go every Tues., Thrs. & Sat. I saw my nephrogolist, he also is my pcp. He told me that I am going to have surgery to remove my thryroid. Seems like my numbers from the lab work they take every month shows my range is 4000.  If my numbers was at 1000 they could prescribe some medicine to help, but someone never notice my range early enough for me to get the meds. No now I have to have them them removed. Where's the prevention before the cure?

 

reply to Woody2205
Woody2205

Do you know anyone who has had a kidney transplant? Was it from a cadaver or a live donor? Did they have problems with their meds to keep it from rejecting? How long is average time to be on the list for a transplant? I notice that there seems to be more Africian Americans on dialysis verse Caucasians.  Is it because Black people tend to eat more salt and pork?  There are 4 other members in my immediate family that also have ended up on dialysis.  How come more people seem to do hemodialysis compared to CAPD?  Are they scared or just don't have it in them to do the treatment themselves?

reply to Woody2205