Saturday, November 23, 2019

Send Off for Jerome, Aortic Dissection Warrior

Jerome, my friend, you fought a good fight and kept the faith.  You defied the odds for a long time.  You inspired me to move forward each day.  Now you rest.

Today's post is a tribute to a friend.  His name is Jerome and he lived just outside Gainesville, Florida.  Jerome endured his aortic dissection (AD) in 2012, about a year after I had mine.  During his dissection and repair surgery he became a paraplegic due to strokes.

Although neither of us new each other at the time, Jerome and I both spent time researching aortic dissection on the internet.  Soon thereafter, Jerome contacted Dr. Peter Tsai of Aortic Warriors, one of the original founders of the world wide aortic awareness AD movement and the creator of September Aortic Awareness campaign.  

Dr. Tsai sent me an email.  Dr. Tsai had read a few of my AD posts and asked if I'd contact Jerome since we were both in Florida.  I called Jerome and exchanged emails.  Jerome and I talked or emailed every day, encouraging one another through the challenges of dissection life until yesterday when he passed away.

Jerome was a young man still, in his 60s.  He made the most of each day, despite being confined to a wheelchair and living alone.

He would take his scooter, ride out to the backyard fence and feed carrots to his neighbor's horse most days, and watch old westerns on television.

When aortic dissection occurs the inner lining or our body's major artery tears apart, leaving the vessel weakened.  Over time the weakness results in the aorta dilating and eventually leaking away the blood that our heart is pumping.

Jerome was an inspiration to me because he was challenged even more so physically than I.  Fortunately after my dissection I could still walk, though it took some relearning.  Seeing another human survive in spite of circumstances more dire than my own made me realize that, yes, I can and will do this.  Thank you my friend, for giving me this gift.

Jerome would regularly say, 'carry on, enjoy every moment you have, no matter all the sh*t that is happening'.

He would also want me to encourage others to be screened for aortic aneurysms and vascular health.

Here are a few excerpts of the emails Jerome shared with me over the years.

Sept 3, 2019 

Kevin, yes nasty way to start a day, had my cereal, and several cups of coffee and several oatmeal  cranberry walnut cookies and-a cinnamon raisin bagel and-thinking of asking VA if they have a standing grab bar I can get them to install next to the right side of my living room lounge that I might use to get myself off the floor if I am down like that for future use rather then calling 911. I will see how that goes. I use to to be able to pull myself up on lounge-using my good right hand and pulling on right  arm rest but when I tried last night it feels like I might pull arm rest off and become a useless futile effort. Will check into this and see.

Enjoy your day, Jerome.

Geeez Jerome, what a way to start the day.  I am sorry you had to endure that but am glad you did not break any bones or do damage to your body.  That is a shock though for sure.  Good thing you had your phone handy too.  Yes, what a life we lead.  Trying it is.  Here's to a better day for both of us.  Kev

Kevin, Morning to you. I just had to call 911 because I slipped out of my recliner when I tried to reconnect the control remote to its cable  that had-come undone, and once I was on the floor I can’t get back up so had to call for a lift assist. What a life I have to lead, but I am still alive right.everything is a struggle , but somehow we just keep going, Day after day after day.
Yes coffee time soon, maybe sooner for me.enjoy, Jerome.

Aug 17 2019
Kevin, yes rained here on and off all day as well. . I went over to feed treats to the horse and my scooter got stuck in the soil next to the fence so I had to slide off-seat stand on ground in water next to left side of scooter and reach down with my right good hand and lift up back of scooter out of rut it had wallowed out with rear idler balance wheels and reset onto ground out of rut. Then I had to just throw the apple slices and carrot over fence onto ground for horse. I hope he was able to get them out of mud and water. Then I just fast forwarded out of area and back onto driveway and home.I have   to find another part of fence where I won’t find it so soggy to be able to hand feed horse.i had my home phone with me and was almost tempted to call for fire rescue paramedics, but said to myself Let’s try this one more time to lift scooter out of rut. So it worked and didn’t have to call, thankfully!

Yes my Friend the night is here and coffee time on the horizon. 
The roofers have my roof weathered in with protective felt and polyurethane for weekend and will be back Monday to finish up . So hopefully all turns out good on that, no leaks do I see anywhere so good.

You take care my Friend and have a good night. Jerome.

April 17, 2019
Kevin, yes my CNA sweep up remaining glass for me them mopped up the floors because I had blood all over the place and had me take a shower to get dried off blood so she could see where to put bandaids on me. Yes I am the problem child for sure, but I did survive as you and I know how to do. Rest of day was try and take it easy day but you know how that sometimes goes because we still need to get things done that only we know how we want them done , so we struggle till we get thru our problems. 

You take care my friend and enjoy your night . Coffee soon, Jerome.

Gheez Jerome what a sucky way to start the day  I am sorry for you.  You may be in a wheel chair and that does suck but I will tell you that you are an ongoing inspiration to me.  I look forward to our communications because I feel you are one of the few people who understand what this life with dissection challenges is truly like.  My day was ok, I can't remember all I did but go for a short walk and stop by Harbor Freight for some zip ties for the chicken coop.  Its not even 7 pm here CST and I am already ready for bed.  The weather was balmy here today but we've got some strong storms coming in tomorrow.  Hope your CNA got the glass up and bandaged up your foot.  Once again night is upon us and we are still in the realm of the conscious.  You rest well if that is possible.  Tomorrow the weekend is almost here.  Kev

Kevin, I may have made it thru the night but I didn’t make it thru this morning , I was unloading the dishwasher and a glass baking pan slipped and shattered all overthe floor , cut my feet several times, blood all over floor and finally got most of glass picked up, will let my CNA sweep and mop the remaining amount, what a chore from wheelchair and one hand and foot usage,  this is not the first time this has happened to me and am sure not the last. Bad day start for sure.
Hope yours is better then mine, Jerome.

December 14, 2018
Kevin, yes, you did have a bastardized day with your candy bar. Mine was no better, forgetting to turn off lights as I leave the rooms and having to go back and do so. Then as I clean coffee pot out tonight I had water vinegar and baking soda spill on floor and made a mess to clean up, damn near slipped on my ass catching myself falling back into wheelchair luckily, what a life of laughs we-give others to laugh at! For sure but not us laughing at. We are clowns on the run just trying to survive day to day, but at least we are still surviving my friend, you hang in there as I will-on my end, so I am happy for that and only ran out to get my mail and send a bill outgoing to box. 

Take care my friend and and enjoy, Jerome.

Long day Jerome. Rainy and overcast making for a dreary day. Went to the library then to the health food store. Bought some groceries including a chocolate bar. Got back in my the truck and looked for the chocolate bar but wasn’t in the bag. Looked again and no chocolate bar. Wife looked no chocolate bar so I went back in with receipt and told them they didn’t put the chocolate bar in the bag. They thought that was strange but gave me another one anyway. Got home and unloaded bag and there were two chocolate bars in the bag. But we’d taken everything out of the bag back at the store looking for the first bar. Sometimes Jerome I think I’m losing it. Or at least slowing down. Sheeez. I still try and keep going but it doesn’t seem like it’s getting any easier.  Hope your Friday was ok. You should be getting this rain soon. Kevin

October 26, 2018

Kevin, Morning to you, I am having much difficulty just taking my catnaps let alone sleep, due to that cyst on my upper back just above chest. I called my primary office yesterday and nurse tells me the primary is out for several days and will check if on call  doctor will be available to relieve it in morning of next couple of days outside normal  prior scheduled patients but also have to be able to put in my file to be able to get me my transportation  to get in to see on call doctor at time available, and was told if pain gets to unbearable to come into ER. It is getting very close because I may have to wait until next week, but then that brings up the cost  ambulance service to get me there, when I broke my hip and went to VA ER the ambulance bill was $820which I never understood why so much and 
LVA wouldn’t pay any of it and I was only able to get Medicare to pay $540 and I had to pay rest. So much for the assistance of all that are supposed to assist us as we get older!
And as for my getting around in house in wheelchair I can’t carry  an.thing if I was using my walker, so don’t have a choice and then outside one handed use of wheelchair  I won’t be able to get up door entrance ramps and same into garage to use washer and dryer or put garbage in garbage can so have to use scooter. So yes difficult but only way I can do things. Our lives are just way to ***ked up and very complicated with constant struggles daily, but then the question becomes what is the alternative, Death which neither of us wants to go down that road. Boils down to must do them to survive or go into nursing home, take care my friend and enjoy your day.

Friday, October 26, 2018, 
Body sore and stuff like a cadaver today. Jerome. I don’t see how you can do what you do being in wheelchair. This stuff sucks.  Our weekend begins. Today. Enjoy yours. Kev

September 23, 2019
Kevin, Morning back at you. I envy that you are still capable to physically deal with those type of home repairs and drive a car, but I Have unwillingly accepted these facts that I can no longer engage in, but the cards were dealt to me in the order to which they came and I have to play the hand unfortunately I received with the best knowledge I have left to try and finish the game to the end.

Enjoy your day and still catnapping here And drinking my coffee and in a couple of hours will go attempt to see horse to feed him his treats. Later, Jerome.

Monday, September 23, 2019, 
Good morning Jerome.  Happy Monday.  I'm feeling a bit sleepy this morning which is normal for me, probably a carry over of monday mornings before dissection when I was trying to solve all of the problems around me in rapid succession.  Seems like I can't focus on what I'm doing then I move on to the next thing without finishing the first and end up getting nothing done.  Just the body care in the morning seems overwhelming sometimes, like brushing teeth, making coffee, taking medications, making bed, etc... is overwhelming.    I ordered a hot water heater to be delivered tomorrow.  The lightening strike we had a month ago hit our hot water heater and it has not been working fully even though I tried to get it to work, replacing elements, etc... So that will be a huge challenge for me even though it is an on demand wall mount heater and not too heavy.  I just will need to cut the water off to the house and remove the old unit and then replace with the new unit.  So today I think I'll take it easy.  Might sit in the sun this morning and soak up some rays.  Hope your weekend was good and you have an excellent Monday.  We just keep on going don't we.  Best, Kevin

Sept 25 2019

Kevin yes making  another day from the last. , yes, I get the downs as well my Friend, most of the time, this s*it we go thru  every day a new or more complex struggle, I guess we were the chosen ones, you and I  and a few others, because others couldn’t endure what we have been thru or were weaker then us.

Don’t mean to put them down either but we were just lucky enough to survive and others were not as lucky. I love you my friend you are an inspiration in making my days move from one to the take care and as you say coffee time soon on the horizon, Jerome.

Tuesday, September 24, 2019, 

What kind of steaks Jerome?  They sound good. I’m feeling down tonight for no special reason I just get this way occasionally it’s feeling sorry for myself. Hey coffee time will be here soon though. First we gotta do this night thing though. You rest well and tomorrow is another day as Scarlet says. Kevin

I am so glad I had the privilege of getting to know Jerome.  He'd tell me to move on and enjoy the day I've been given.

And as he'd suggest, I am encouraging whoever reads this to schedule a checkup with your cardiologist and discuss dissection, aneurysms and your aortic health.  Remember, everything is good until it isn't.

Finally read more about aortic dissection and Ritter Rules on the John Ritter Foundation and Aortic Warriors websites.

RIP buddy.