Members StarrD Posted July 3, 2020 Members Report Share Posted July 3, 2020 I still can't believe this is happening, but my brother Jordan passed way on March 31. He was the last close family I had, and he looked out for me, as I tried to do for him. I have thyroid trouble and the medicine I need doesn't help me like it should, so I haven't been able to work for years and even get SSI social security for it because my health is so messed-up. But Jordan looked after me, as best he could--and I feel like if I could've looked out for him better, he'd still be here. He wasn't easy to work with always with his health problems, though, and he'd fight me on some stuff....like not keeping some of his doctor's appointments, or not always taking some of his medicines. But in his defense on some of this, a couple of the medications he took were very hard on him. He ended up with liver trouble, and they gave him diuretics and something called lactulose, and they both make you go to the bathroom, a LOT, to help rid your body of toxins because the liver isn't working right. And he'd fight taking the full amounts of these medicines....and it was awful. When he did finally take the more correct amounts, that was too hard on him, too. And I think it led to his kidneys getting messed up, as well. It was hard to see him like that.... Some other things that were hard on this is that we were low-income, and that made getting him into different doctors that maybe he'd listen to more kind of impossible....and when he finally ended up in the hospital this last time, they delayed getting him on the liver transplant list by about a month-and-a-half because of money issues. They even said that--they just wouldn't put him on that list until everything was cleared with him becoming eligible for Social Security SSI himself, so they could see he'd have steady income coming in as he'd recover from transplant surgery. (Jordan hadn't been able to work much during the last year or so because of his health.) I did everything I could to move along getting his SSI faster, and I made it happen with the help of a couple of nice workers at Social Security....it's sad that no one at the hospitals would help me with this, themselves--I thought that's what the Social Workers were there for, but I guess I was wrong. And it was hard for me and Jordan's girfriend to get all the crappy paperwork done and stuff, but we did......he finally got on the Transplant List, for real. The nurses were real impressed that we'd gotten it done so fast, I guess compared to what some other patients had been through. I was so proud when they wheeled Jordan back up to the Transplant floor of the hospital--that's where he'd started when he came, but they demoted him down to a different floor when they said he wasn't qualified due to the money issues, etc. I was kind of a hero for over a week there, because they all knew I'd helped gotten him moved back up to the 8th floor....we all felt very hopeful. Jordan got offered a new liver on March 12 or 13th. I helped him sign-off on the surgery and talk to the doctors. At the last minute, they cancelled the surgery, saying they'd examined the new liver and it "wasn't a good fit" for Jordan. But they said, "Don't worry, a new one will come along, soon." Well, it never did. Jordan was still OK enough to be on the transplant list for over a week. The last time we visited him was on March 17th, and he was still on the Transplant list. Then the Covid-19 virus hit, and we couldn't visit him after that. I called a lot to see how he was doing...tried to talk to him by speaker-phone, etc. They even sent me videos on what to expect after the transplant. But after maybe a week or 10 days of his girlfriend and me not being able to see him, Jordan just got sicker & sicker--his blood pressure kept dropping, infections they couldn't fix, and then they started giving me all kinds of awful phone calls about how bad he was doing. Too sick for the Transplant list, anymore....and he passed away on March 31,2020. They gave us so much hope, and then it was taken away. It's so hard. i miss him so much, too, because even though we went through a lot of hard times together, I knew he always cared, and he was funny, and he could make me forget a little about all the hard stuff we'd been through (our dad died when we were little, and my mom was a widow after that with not such great health from thyroid, herself--she did her best, though.) I just miss him so much, and everyone says that Jordan knows I really tried for him as best I could, but I still feel like I let him down--and I wish I could've done so many things better, for him. P.S. I get mad, too, that whenever I say Jordan had liver trouble, people like to assume he was a big drinker--he never drank alcohol, at all. I think his liver got messed-up because he had thyroid trouble for years that wasn't diagnosed and treated, and that this made his liver function poorly as it put too much stress on it for too long (thyroid runs all over our family, but we couldn't get it diagnosed on Jordan until much too late. And thyroid hormone does affect how all your cells work, because it affects how every cell in the body metabolizes things and functions. Anyway, I miss him so much.........and I don't know why all this bad stuff had to happen. I thought we'd be working on his recovery from the transplant right now...instead, he's gone. 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Members StarrD Posted July 5, 2020 Author Members Report Share Posted July 5, 2020 Thank you, Valerie. That was very kind of you to reply, and I appreciate it. I will try to remember what you've said, and I'll even print it out. It's just so hard. I wanted for us both to get better, and then we could go do a lot of things together like we hadn't been able to for awhile, first because of my illness, and then his. My religious background is shakier than some (we're Jewish, but my mom only kept the main holidays and taught us very basic stuff. The temples/ synagogues that matched more how she was taught--Orthodox or Conservative--were too far away for her to drive and take us very often, because her health wasn't that good, either, due to thyroid.) So, my faith isn't as strong as some, but I'm trying. Everyone I've talked to, no matter what religion, all say that G-d decides when your time is up ultimately, and that I guess you try the best you can, but there's only so much you can do because in the end, it's His call. That's real hard for me to accept, but I'm working on it. When I was well and in school, I was a real good student--and when you are, you get used to how if you put in the effort, and really work on things, it'll pay off and you'll get good grades, etc. What I went through with Jordan was so opposite this--on some things, I put in a lot of effort for what I could handle, and it just wasn't enough. You're right, though, that Jordan really knew I was trying for him, especially those last months. His girlfriend has told me that a couple of times. It helps a little, but I just keep kicking myself that I should've gotten through to him better, sooner, or done certain things differently with him--but the circumstances were hard, and I guess I thought I was doing the best I could at the time. He wasn't always easy to work with, either-- even his girlfriend said so, and she said she couldn't work with him right on some health-related things, and she thinks if we would've teamed-up to try to get him to do certain health-related things, he would've gotten really mad and not done any of it, anyway. But I don't know. So, it's hard....but I'm trying. It does help to write about it here, even if no one answered. But I'm glad you did. Thanks again, Valerie. Link to comment Share on other sites More sharing options...
Members StarrD Posted July 7, 2020 Author Members Report Share Posted July 7, 2020 Thank you, Valerie, for responding again and posting the video. Everything helps. I hope I can get through this and do some good in Jordan's honor. I am trying. Jordan had such a hard time with the medicines they gave him because of his liver trouble that I made myself a promise that if I can get anything going with some artwork I do (cartooning) where it actually makes money, I will use the money to try to get research done for both liver and thyroid diseases (Jordan also had thyroid trouble, as it runs in our family but they didn't catch it fast enough on him-- I have bad thyroid trouble, too, that doesn't respond well to the medications we have, and that's another reason it's harder for me to cope with all this--because I'm not really well to begin with.) I think Jordan's thyroid trouble not being caught and treated properly years earlier led to his liver getting too stressed out and that's why it went bad--he didn't drink, or anything. Both the liver and thyroid diseases need better testing and medicines, so that's one thing that is kind of keeping me going--if I can help get something done so others won't have to go through all of what we did, that would be something to shoot for, and to make me feel useful....and it would be something that would make Jordan proud. Thank you so much for taking the time to care and to write back. I know Jordan would thank you, too, for doing that. All the nurses in the hospital really liked Jordan, because he was really nice and would thank them for everything--and when he was up to it, he'd make little jokes for them, too, just like he did with me and everyone else he could. That's one reason why it's so hard without him--I just wish I could've done better for him......and I feel it worst in the early mornings, like I read a lot of people do. But I'm trying.... Link to comment Share on other sites More sharing options...
Members StarrD Posted July 9, 2020 Author Members Report Share Posted July 9, 2020 Hi, Valerie. Just wanted to thank you for all your excellent ideas and help. And because you've been so nice, I wanted to maybe give you a little laugh or smile with some of the cartooning work I've already been doing....some people seem to like them. Maybe you would, too. Don't know if you use Facebook, but I have a page for something I call Crafting Cat Cartoons on there. It's about a family of cats that do arts & crafts together, and the fun and silly experiences they have while doing so. They were inspired by the Crafting Days they have on the Home Shopping Network, where they sell arts & crafts things for 24 hours. I was watching it and came up with the idea. I didn't know if it'd be appropriate to post any of them on here or not....they showed one of them on HSN, once, and that was really nice. A couple of them have been published in "Colored Pencil Magazine." The editor likes my work, even though it's not a fancy style like most of the people who contribute to that magazine have. Anyway, here is the Facebook for my work...www.facebook.com/CraftingCatCartoons/ I really hope I can use Crafting Cat, or maybe something else like you've suggested, to raise money for those research funds. That will help keep me going, if I can work towards that. Thanks again so much, Valerie. I really do appreciate all the thought & care you've given to my posts. Starr D. Link to comment Share on other sites More sharing options...
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