I don’t really know where to go or where to share this but I am heartbroken right now and I can’t sleep. I know this group will understand.
I have a strong family history of lupus and vascular problems on my fathers side. My paternal uncle died at age 41 of a ruptured aortic aneurysm. No one knows what caused the aneurysm. I have my theories. My paternal grandmother died of a massive PE and cardiac arrest after being taken off of her Coumadin. She also had lupus and aPL.
Yesterday, my aunt died of what I think was catastrophic antiphospholipid syndrome after having multiple vascular manipulations done to save her leg. She was only 69 and otherwise, a beacon of health and functionality by all accounts except every single one of her blood vessels looked like a clogged pipe. She died over the course of 2 days as clots showered everywhere causing multi-organ failure. She didn’t want to fight and just gave in. She knew it was the end. I lived too far away to make in time before she died.
I’m so sad and angry. All I can think about is how she wouldn’t get tested for lupus or lupus anticoagulant even though both my grandmother and myself have it. My grandmother had very similar vascular problems to my aunt. I just keep rehashing what if my aunt got tested and what if she knew that she had lupus or a clotting problem, could this situation have been mitigated? I know there is nothing I can do now. But I know people here will understand how I feel and how we all feel when we see someone struggle undiagnosed only to watch them meet a surprise demise because no physician paid attention to the writing on the wall.
I am seething and incredibly sad. I am also hoping this isn’t a window into my future.
As for my lupus, I think I’ve developed lupus myositis. My CK keeps going up. Rheum wants me to get a repeat EMG. My kidney function has declined a bit so I can’t take meloxicam anymore which really helped with horrid back/joint pains I’ve been having. I’ve been told to make due with Tylenol. Per usual, I am also persistently neutropenic. My one saving grace is monthly IVIG which buys me no more than 2 quality weeks of functionality a month.
This past week was the worst and for once, COVID had nothing to do with it. Thanks for listening.
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Jmiller623
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I'm so very sad for your loss and in such difficult circumstances. Please be very gentle and kind to yourself. I can say no more, sending my deepest condolences.
Im very sorry for your loss too jmiller. You need time to process and understand all thats happened with your aunt. Its specially tough when we're ill and having a rough time with our own health and now suddenly you have even more to cope with. Family links with these illnesses make it harder too.
Be kind as much as you can to yourself and know that your being thought of by us fellow lupies.
Hi J.i am really saddened to read your post .I know what it's like to lose family members to an illness it's not lupus in our family its non hodgkin's lymphoma and ive asked to be screen but have been told no.I understand the range of emotions you are going through...its a natural response but as misty & meg have said be kind to yourself. Take comfort from your happy memories and I pray it doesnt cause a big flare for you .
We are here to share the good times and the sad times with you . Take care sending love n hugs to you and your family xxxx
Gentle cyber 🤗🤗🤗from me Jmiller 💜 I'm so sorry for your loss 😔There r five recognised stages of grief n it sounds as if you're experiencing most of them right now 🤗the final stage is acceptance which is usually a long way off..but it's important to go through the grieving stage so how your thinking n feeling right now is completely natural!!
U are very aware of your own current health issues n u take appropriate measures to keep yourself as well as u possibly can..unlike your aunt sadly 😔
We all care about u on this forum n I for one know that you're a very strong lady who is very knowledgeable about all things autoimmune..you're amongst friends here!! 💜
U know the rules..u gotta take real good care of yourself n give yourself time to mourn your aunt 😔
Dear Jmiller, I’m very saddened to hear about the loss of your aunt who you obviously had a lot of love for - I can really understand how angry you must be at her right now for not getting tested but you did all you could - sending big hugs 🤗🥰
Oh, that is a loss. I am so sorry, JMiller. It stings because you know she should have had tests that may have prevented this. Family history is so important.
Thinking of you and know how you struggle with your own health.
I’m so very sorry for the loss of your Aunt and all of the others in your family.
I understand your anger and frustration over your inability to convince your Aunt to get tested/treated for lupus.
🤗♥️🤗♥️🤗♥️🤗♥️🤗
Like you my father’s side of the family has a huge history of lupus deaths. My dad’s grandmother and 8 of 13 Aunts died from lupus/or related conditions. The youngest Aunt was in her late 60s when she passed. My dad has multiple lupus symptoms but he refuses to see any doctor for them. It’s so heartbreaking to know he suffers so much. He hates and doesn’t trust doctors so much and always has.
He’s 91 and blind. He’s still separated from my stepmom due to the pandemic. He’s become unbearable due to his rapidly declining health with heart & kidney failure and his anger/bitterness against EVERYONE/EVERYTHING that he cusses yells threatens. insults accuses and verbally abuses us; we cannot please him or do ANYTHING right.
So I truly understand the toll it takes on loved ones that must helplessly watch the demise occur.
I just said a special prayer for you. 🙏🕊🙏🕊🙏🕊🙏🕊
I prayed for your needs to be met and for you to be comforted at this difficult time.
🌿🥀🌿🥀🌿🥀🌿🥀🌿
I hope that your conditions will be successfully treated and give you relief.
Please take care stay safe and abundant blessings always.
Thank you so much for the kind words EJ. My father is the same way. Also displays many symptoms. Also has pretty significant arterial disease. And also bitter but I honestly think he has a short fuse/mood swings like I do when my lupus isn’t doing well. I see my untreated self in him now more than ever.
I am very sorry to hear of your loss and the circumstances, with your family history. We can only try to make people listen and gently guide if they permit. Family can be the very hardest to get through to. Take strength from Bax and know we are thinking of you x
Thank you everyone for the very kind words and amount of love sent my way. Your posts surround me like a warm familiar hug. Hoping tonight provides a more sound rest.
Just read your sad sad post & these beautiful replies...just sending you my LOVE now...am groping for words...but everyone has said everything for me: this is what our LUK forum is all about! The combo of loving kindness, inclusiveness, intent listening & understanding thoughtful, considerate, responsible replies...am very glad you’ve shared...am very glad you found us...you’re a precious member of our community: you’ve given us so much (eg without you, I’d have been even slower to figure out the NHS reluctance to prescribe IgG therapy for certain neuropathies)...thank you, take care
So very sorry to hear of your loss and do understand the frustration and pain. So I can say i send you my best and and a Hug with again saying i am so sorry .
I am so terribly sorry for your loss. It is such a tragic circumstance, no wonder you are devastated and angry. Please be kind to yourself now. Take time to grieve. We are all here for you xxx
I’m so sorry for your loss and can only imagine how you must be feeling. I hope that after your grieving, that you will be determined to not let this be your fate. What you let your mind focus on will have a powerful impact. Much love to you and gentle hugs💜
A little late here but hoping you are getting some sleep and generally doing better. I would be grieving...and pissed as h3ll 🔥❗️Just being honest.
A couple of years ago, my older brother (by two years) landed in the hospital ICU for over a week, trying to die, because as you describe “blood vessels looked like a clogged pipe” full of DVTs in both legs to the point they couldn’t even find a pedal pulse in his right foot. His leg was hideously swollen out of shape. He lived, but to this day, his legs are two different sizes and he will be on Xarelto forever. Come to find out, he had had them before, as well as hemochromatosis and hadn’t really followed the best of treatments (had neglected to tell his doc he was on a bunch of energy drinks and Chinese medicine herbs, supplements etc.). He didn’t bother telling family until the ordeal was over and forbade his wife to as well. It was under the “no need to bother anyone clause”🤬🤯😤 I live in another state but I can be there in 2 1/2 hrs. and he didn’t think that was important enough. He also didn’t think it was important for my medical/family history? Sometimes I wonder where their thinking processes go wrong 😑.
I am praying for you and truly commiserate with you. 💐😘🌷❤️🌹
Oh my DR. Thank you so much for sharing. You hit the nail on the head. Same here. “Didn’t want to burden or bother anyone” clause here as well. I’m glad you also said “he didn’t think it was important for my family/medical history?” Thank you for saying that. I feel the same way but felt guilty feeling that way like I was being selfish.
In the end, I guess we all live life with a different mantra. I just can’t choose to ignore my health and live on because I remember when I was actually healthy before lupus and I’d give anything to regain that life. This ordeal also made me realize that my mind is what matters most now that my body can’t keep up and I’d want everything done to save me as long as my mind is okay aka no massive stroke. Prior to having lupus, I’d say let me go if I was intubated for more than a week. I have a very different outlook now even after caring for patients in the ICU for weeks. Never knew how strongly I felt about helping patients fight death until it hit home.
Thanks again DR. I am doing a little better. Sleepless nights but I’m at peace with what happened. Funeral is this weekend so it’ll be nice to be around family. I live 5 hrs away by car and could never make it home by myself without my husband. It was really hard not being there in person for my family.
I’m glad you’re feeling a bit better. You’ll need all your strength for the funeral. Hope all goes well there. Family gatherings- especially around death or serious illness always seem to be a double edged sword for me.
My brother (same one), the year before the last DVT incident, had a septic appendix burst as they were removing it. Same rule applies. He ignored it until his wife made him go to the ED (She’s a kidney transplant recipient so she told him she wasn’t going to carry him anywhere AND she would call his Momma!). Got a phone call after the fact. I mean, really? He’s brilliant! Was a nuke in the Navy right out of high school but he has the social skills and the common sense of a gnat! He’s my big brother though! Love him so much! But, I still want to kill him. Oh, I know how to bring him back when I’m done 😉😆⚡️ Hang in there! ✨🌈❣️😘💤🤞🏼
D🏃🏽♀️
Lean on your husband and vent here whenever you need to. That’s what we’re here for.
Just read your post and am so sorry for your loss. Be kind to yourself as others have already said. And don't lose sight of what an incredibly special and valuable person you are. You have helped a lot of people, on this forum especially, and will continue to do so. But no one can help all people all of the time.
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