Join Jerry (a father and a husband) as he shares his journey being a care giver. He takes on the role of being both mom and dad. His wife Bonnie is affected by VEDS also known as Vascular Ehlers Danlos Syndrome. Bonnie isn’t the only one living with disease. Please be considerate of Jerry and his journey, as he shares his story in his own words.
Vascular Ehlers Danlos Syndrome (VEDS) is considered the most severe form of Ehlers Danlos syndrome. It causes spontaneous blood vessel and organ rupture. EDS causes frequent joint dislocations and subluxations. It is an inherited connective tissue disorder. Learn more about VEDS here http://ehlers-danlos.com/vascular/
Ulcerative Colitis is an inflammatory bowl disease, it causes ulcers to form in the intestines. Learn more here http://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/basics/definition/con-20043763
Conversion disorder causes neurological symptoms, it is a mental disorder. Learn more here http://www.mayoclinic.org/diseases-conditions/conversion-disorder/basics/definition/con-20029533
My name is Jerry Wheeler. In my family my wife and my oldest son have Ehlers Danlos Vascular disease.My daughter has Ulcerative Colitis, and my youngest boy has Conversion disorder. My children’s names are in order of age;Amanda 20,Justin 19, and Robert 12.
My wife Bonnie has had problems with hip dislocations since her early thirties, she has had Varicose veins surgeries on her legs twice in her younger years, she was precancerous and had to have a partial hysterectomy so many years back and her gall bladder failed. She has always bruised easily and suffered from debilitating headaches all her life. Four years ago she thought she was coming down with the flu and had chest pains . She went to a walk in clinic and they sent her to the Er at our local hospital, they then sent her immediately to a larger hospital for emergency surgery on her Aorta which was dissecting. During that surgery she died three times and on top of putting a stent in her Aorta, the doctors had to put and emergency stent in her femoral artery which collapsed. She’s almost lost her leg.
She was sent home a week later but had to be transported back when a suroma formed in her surgery wound at her pelvis. She had to have a muscle flap taken from her thigh to correct that hole caused by the infection. That in turn wouldn’t heal. The new skin kept dying and the wound had to remain open eventually with a wound vac installed until it healed. This whole ordeal effected my family traumatically .
My son developed Conversion disorder from the trauma of seeing his mother, who he is closest to nearly die and in terrible pain. My wife ended up being in a rehab center for wound care six months before she could come home. During this time it was confirmed she had Veds. I took the kids to see her in Hartford an hour a way whenever we could usually twice a week but it was a strain trying to work and I relied a lot on my two teenagers at the time to cook and help with Bob.
Bobby is adopted we have had him since he was six to nine weeks old he was abandoned in a drug house. He was very sick with drug withdrawal and possible complications from HIV and Hepatitis C which he carried the antibodies for but thankfully we later learned not the diseases. His mom has always been his anchor, she saved his life when he was failure to thrive by feeding him every hour on the hour for the first months of his life while he couldn’t keep anything down. He had seizures for his first year of life. Now with conversion disorder due to stress breakdowns his body with shut down with pain in his legs , shoulders, arms etc where he won’t be able to walk. I have him enrolled at a special school to help him with this but I still have to get him ready for school in the morning give him his medications and wheel him out to the bus which he is often in a lot of pain in the mornings.
Bonnie is in hospice at home. She has nurses come in as well as AIDS who come twice a day during the week. She presently cannot walk to far and she had stroke symptoms when she tries to walk across the room from the bathroom. She is not safe to go unescorted. My wife is 44 years old. She should not be struggling to live at this time in her life. I or my son Justin have had to grab her to keep her from collapsing several times.
Bonnie had aneurysms throughout her body. The worst being in her Carotid arteries in her neck which could rupture and kill her anytime. Due to the weakness of her veins due to her body making the wrong kind of collagen, her veins are inoperable. They would collapse if doctors tried to work on them and she would bleed to death in minutes. The Carotids as well as her brain cause her to suffer seizures, pass out, have multiple mini strokes where he left side will go numb but usually although weak returns to normal in a few hours, but exhausts her.
My older son Justin coughs up blood occasionally from ruptured capillaries in his lungs, he has recently started having loose joints in his hips. His mother suffers frequent dislocations of her hips, pelvis, shoulders, fingers,jaw, and even fingers, especially her thumb. We are worried because his symptoms are showing over a decade earlier than his mothers did. We only found out she had the genes when we were able to qualify for state aid to test him and my daughter of which he was positive.
My daughter Amanda became sick from her disease Ulcerative Colitis when she was fourteen. She was bleeding from her rectum and was too embarrassed to tell us. When we found out we took her to her pediatrician who said she was Iron deficient . So we started her on iron supplements but they didn’t help. One day she couldn’t get off the couch and I took her to John Dempsey hospital in Farmington who sent her to Children’s in Hartford. There we were told she had to have her large intestine removed. I still remember the incredible sinking disbelief I felt when we were shown her scans. Her intestines were massively infected. We were given two choices have the surgery immediately or prepare to bury our daughter. My wife would spend so many months with her at the hospital. Amanda was there for over six months. When she came home she had a colostomy bag for eight months before her surgeries to attach her rectum to her small intestine and create a J pouch to help replace her large intestine.
During these times traveling back and forth to Hartford it was exhausting. I had to take care of the boys on my own. We had our family turned upside down. Right now we function on an hour by hour basis.
I have had to be Mom and Dad and advocation for my wife to make sure everything is being done for her that can. My wife battles on top of her illness depression and she doesn’t want to be treated as an invalid or an elderly person in their final stages , I have had many discussions with hospice on this. I have to give her whatever life I can.
I’m learning to take care of meals although I have assistance from the caregivers. I have to get my son off to school of which he just started regularly because we are still learning when and when not to send him with his pain. Many times I’ve had to leave work to go get him forty minutes away.I lose almost two hours pay to do this so I’m trying to educate the school and myself on how to care for him. He attends counciling services to help but it’s a busy week every day.
Bonnie still try’s to be independent and who can blame her but I’m scared of her passing out and hurting herself if she doesn’t tell me she’s getting up. Myself I do building maintenance of which I am on call twenty four seven. If my boss wasn’t flexible on time I couldn’t do my job and take care of my family.
My daughter is away at school on a full scholarship thank God. But she doesn’t drive so I go get her when she needs to come home. Her college is two hours away. Her health overall is good but she still had complications from her UC. Presently Justin and Amanda have no insurance as the state booted them when they turned nineteen. Bobby is adopted so he will till he is eighteen, me and Bonnie most likely will lose our coverage in August which terrifies us because we can’t afford it and she needs the care.
In our home I work and my son supports his car and his text books for college with a part-time job. I’m proud of him. He’s an honor student who wants to go into law enforcement. With his health that may not be possible.We have been fortunate to have two make a wish trips in our home . One to San Francisco two years ago for Justin who got to spend a day with the San Francisco Pd patrolling the bay among other things we did that week
And one for Bobby who took us to Hawaii for him to swim with dolphins. We have suffered many things and been blessed too. It’s on going. I manage with help a lot of medications and am doing my best to make the right decisions to make sure everyone has what they need. I’m exhausted most of the time and thankful for the help we receive. My kids are trying to start their own futures and worried sick about their Mom.
Me and Bonnie have been married twenty two years and are a year and a half apart in age. Me being the older.I hope this answers your questions feel free to correspond if not. I would have answered your request sooner but I didn’t know if this was spam or not.
Thank you Sincerely,
Jerry, your journey is eye opening it helps others see your strength and resilience. You truly are a brave soul. Keep doing what’s best for you and your family.