Pulmonary Embolism

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September 27, 2023

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I received some more bad medical news today. I wasn't mentally or emotionally prepared for it and I need time to process the information. I'm terrified, devastated and it put me into an immediate depression.

My chronic Lyme Disease seems to have never gone into remission, like I thought. I'm still infected with Chronic Lyme and Bartonella, assuming Rocky Mountain Spotted Fever too, but that one wasn't tested. I have a lot of unresolved trauma from treating my Lyme disease, and suffering for years.

It took two years to get that diagnosis when I was in my early 20s, having insane symptoms and that's when the suffering really started. I was 21. I started treatment at the age of 23. It was hell, the treatment was intense, painful and made me much sicker. I didn't have the long list of diseases and complications that I do now. I was also much younger and had more energy and spirit then.

Going through that again, with the body and physical ailments I have now, it's seriously frightening. I'm devastated that I didn't find out sooner. I knew that Lyme Disease caused a massive amount of damage in my body, I didn't know that it was still doing that to this day. It's a ton to process for me. I was 24 when my treatment ended. I'm 38 now. I'm feeling hopeless and I have already been tired of fighting. This body doesn't seem to want to live. It's very hard now, the idea of making it harder isn't fathomable to me right now.

I stopped reacting to new diagnoses a long time ago. The last time that I was truly afraid and shocked was when I had a Pulmonary Embolism in 2018. I survived. They are normally deadly. I remember getting the call 6 months later that I had a rare autoimmune blood clotting disorder and a genetic clotting disorder. Blood thinners for life. I didn't react. I literally laughed on the phone. Not because it was funny or not serious, because I couldn't take it anymore but I also wasn't even surprised that something else was wrong. Another one to add to the list.

I had internal struggles when I thought I had lung cancer in 2021. But I knew that I would fight it and I had a plan to be strong like I always am. 5 months later, I found out that it was Sarcoidosis. Also rare and can be deadly. It's a terrible disease. Add it to the list. Later in 2021, Autoimmune Polyneuropathy all over my body - small and large fiber nerve damage everywhere. I was just happy to get it over with and have it in writing finally, rather than my doctors and I just assuming that's what it was. I seem to get a new diagnosis every 12 to 24 months. I've grown used to it.

Today was different. I'm at my max. I just had my nerves burned from my spine a week ago. I'm still in recovery from that. My doctor gave me steroids while I was under without my knowledge or consent, knowing I'm allergic. I don't know why this is my life and why I was chosen to live in my own personal hell since childhood. I started crying while the doctor was talking about treatment options. The idea of going through that again is what set me off. I told her that I barely want to keep fighting now. I don't want to make my life harder.

Yes, I get depressed very often in the last year. I'm overburdened and overwhelmed. I'm angry and I'm sad. I am scared. I live one day at a time. Making distant plans is hard for me. When I get my handouts emailed to me for my intensive trauma class 24 hours prior, I don't even look at them. I don't know what tomorrow brings. I'm here today. Everything that is planned must be in my calendar or it's not real to me.

I hold onto those bit of love that I have in my life. That's what keeps me going. My animals and the important people in my life that share love and compassion with me.

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StopTheClot

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@stoptheclot

MightyTogether September 25, 2023

I'm new here!

Hi, my name is StopTheClot. I'm here because

#MightyTogether #PulmonaryEmbolism #DeepVeinThrombosis

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Lilulicious

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@lilulicious

Grief August 30, 2023

I feel silly for even posting this but it's a weird kind of grief I'm really struggling with so please have mercy on me.

So, I've never really been into children, I've always loved animals. I'm married, now aged 55. I've had countless dogs, cats, even horses. I did livestock for the fairs when I was young, I know and have experienced the life and death cycles of the all too short lives of our pets. And I've had some really special animals over the past, from my first dog when I was 5, to the dogs and horses I have today. I also have a long history of depression and anxiety. I have ptsd from medical trauma (I had a pulmonary embolism due to AFib and the ER doc had told me that my situation was very dire and might not survive, it was extremely frightening for me) so COVID was initially quite terrifying for me and still remains a point of fear (I still mask) due to my underlying health conditions. OK, enough of the background.

I have two rescue dogs, Bella and Lola. Lola we got as a puppy, and she is one of a kind. I've never had a dog like this. Smart, emotive, intuitive, funny, vocal, beautiful, unique...much to the point where I have found myself grieving her loss in advance, if that makes any sense. We became even closer over the pandemic, working from home, and then she had both knees replaced so I was her nursemaid and she lived in my bedroom where she's pretty much stayed ever since.

I often find myself looking at Lola and saddened, sometimes to the point of tears, knowing that I will lose her and feeling like when that day comes, I won't be whole again. I'm not sure how this has happened. I've never fixated on an animal like this before. It's like knowing that someone has a terminal illness. In an animal's case, it's knowing that their life is short. But instead of enjoying her while I have her, every day feels bittersweet because it's a day less instead of a day more. Now she's aged 8, and as a larger breed, the feeling that time is growing short is getting more intense and my grief seems to be growing with it.

I know the obvious answer is to see a therapist. I just wonder, has this happened to any of you, whether about an animal or a human? Or is this really way out there? It's so painful, it's such a painful thing to look at her with such love and such hurt at the same time. I sometimes feel like I won't survive her loss when it happens. Despite having family, and friends, that the absence will be too much for me. Maybe this is a pandemic/lockdown mental health issue. I just don't know. But I had to get this out somewhere, even if it's weird. Because I don't understand it and it scares me a little. Thanks for listening, and I hope you can be kind.

#Grief #Depression #Anxiety #PTSDSupportAndRecovery #PulmonaryEmbolism #AtrialFibrillationAndStroke

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Dario Mendoza

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@dariomendoza

cteph June 11, 2023

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I thought i was never going to be cured. My CtEPH jouney part 2

We sent all my medical records to UCSD and it was a huge surprise they told us I could also get a quote for a PTE. I really didn't want to get one even when it was possible, because I knew it is a very risky procedure, your chest gets opened like a hot dog, you basically get killed for several minutes in a hypothermic circulatory arrest.

So we ignored the quote and just postponed the decision until one day Olga Cesena from the international department of UCSD called us directly and explained everything to us. She said that in Mexico it wasn't possible to do the PTE, but in San Diego it was, that they are more capable than anyone in the world and the mortality rates were about 1% , impressive considering anywhere else in the world the lowest mortality rates are about 15%. She also said that a BPA was possible but for my specific case it wouldn´t really make big improvments, the PTE was the way to go.

To get the PTE wasn't an easy decision, I was really afraid of dying, but we asked doctors here in Mexico their opinion and said it is the best decision I could take. My family was right all the time. When you're making life changing decisions such as choosing procedures and hospitals it's important to have other people help you find alternatives and show you the best options. We were told by Dr Madani and Dr Kim said it was very good i haven had any BPA before it would have been more difficult to perform the PTE, also that BPAs are not for young patients. So far my parents made perfect choices.

During my PTE I was in hypothermic circulatory arrest for 77 minutes in total, several more than other patients. Now I laugh about people that pretentiously say they have been clinically dead for 3 minutes. Dr Madani expected it to be of an average complexity but to his surprise he faced a challenge with my case.

Following the surgery, he remarked that he rated the difficulty level as a 9 on a scale of 1 to 10, with 1 being the easiest and 10 being the most difficult PTE he had ever performed. Typically, patients are able to resume eating and walking the day after surgery, but in my case, it took me 5 days before I could walk again.

Now it has been two months since the surgery and I feel amazing. I feel so much energy all day , I even started to run. Yesterday I ran and walked a 5k in 50 min. I often say to my mother Dr Madani gave me superpowers. Certainly it feels like superpowers, so much I just signed up for the San Diego Marathon 2024. I know I have a long way before running 42 kilometers but it has been my goal since the intensive care unit.

I want to give my medal to the UCSD team and show them how they gave me back my burning desire to live. Not enough can't be said about how good Dr Kim, Dr Madani and their team are. I always tell people I got presidential quality open heart surgery, and sure it was, my scar is barely visible now and it never hurt bad at all.

So now my CTEPH journey is over and I feel responsible for making awareness of this disease so no one else has to live like me for 7 years ignoring there is a cure. I also feel part of the community of people with Pulmonary Hypertension due to other causes I know, just like the PTE there are potential cures being developed. I know maybe 20 years ago a surgery like this wouldn't have been possible but we have people like Dr Madani and Dr Kim who push the boundaries and make modern medicine miracles.

#cteph #pte #ucsd #PulmonaryEmbolism #pulmonaryhypertension #PAH #APS

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Jackie Blair

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Coronavirus Disease 2019 (COVID-19)

April 5, 2023

I'm a Symptomatic Nurse Who Was Refused COVID-19 Testing

As a nurse, the past few weeks have been terrifying. COVID-19 is sweeping the country. The first week that cases started to appear in the United States, my county, including the medical professionals, were mostly unfazed. This was the most dangerous reaction that any of us could have had. As more and more cases appeared, [...]

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Kelsey Heythere

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Chronic Pain

October 14, 2022

What It Means to Fight for a Label You Don't Even Want

I’m a young adult, I look healthy, but I am disabled. I no longer wish to be ashamed of myself for that. My wish is for Social Security Disability Insurance (SSDI) to acknowledge that I am, in fact, disabled. I became disabled my junior year of college, shortly after being diagnosed with moderate to severe [...]

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Angie

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@angiewaffles

SexualTrauma February 12, 2022

Scan fears

#SexualTrauma . I have recently suffered a pulmonary embolism, blood clots in my lungs. As part of the follow up I have to have a transvaginal scan. I know it’s important, but I am terrified about the memories, flashbacks, dissociation etc. My abuse started at the age of about 5 with things being pushed inside me before it escalated over time.

I have avoided smear tests and sex for a long time, even though I’m married, but the thought of this scan, of the position I will have to lie in and what they will push inside me is really scary.

I don’t have anyone one to come with me, I wouldn’t want anyone to be there while those parts of my body are exposed. I will probably be fine during it, but react when I get home, when I’m completely alone.

I also have bipolar disorder and can be prone to harming when distressed. I wondered about letting my psychiatrist know to see if he could just talk me through how to get through this, but he is difficult to get in touch with and I done have an appointment for another 2 months.

I wondered about writing it down and giving it to the radiographer person. I’m not sure I can find the words to say it out loud.

I would welcome any suggestions, it’s important that I do this and it could be the difference between life and death if I get another embolism.

Thank-you
#CPTSD #Bipolar2Disorder

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DaniMarie

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@prettypleasemarie

Immunocompromised October 26, 2021

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Third Dose Booked Today #COVID19 #Immunocompromised

💉 if you can get vaccinated, get vaccinated. Not all of us can make the antibodies due to the treatments we’re on so we’re counting on you to keep us safe. Yes the vaccination doesn’t guarantee you won’t get Covid but it lowers the bio load of the virus in your body. So when you sneeze instead of unleashing the army you only release some soldiers from reserves; Instead of the entire national defence haha. (Bit of my history I’ve had two PE’s (Pulmonary Embolism - blood clots in lungs 2014), have a lymphatic disease and potentially an undiagnosed autoimmune disease. I’ve had minimal to zero side effects from the two vaccinations I’ve received previously (Pfizer). I took Tylenol following my injections in 4hr increments for the first couple days and believe this help prevent/alleviate any side effects). Choice is yours, always loved.

Let’s get through this, let’s protect each other 💪

“I’m jabbing, just jabbing, I just wanna jab it in you.” 💉 🎵

#Immunocompromised #thankyouforwearingamask
#washyourhands
#safetyfirst
#rituxan

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June 18, 2021

#Selfharm relapse (warning - self harm and suicidal thoughts)

I was able to manage to go for three years from early 2018 without wilfully hurting myself physically. I abstained and somehow managed to avoid succumbing to the urges to cut myself and hurt myself in general.
I promised my partner back then that I would not.

I went on to suffer a pulmonary embolism a few months later but get married to my partner a year later after a lot of melodrama from the families. Through the rough patches of marriage, the pandemic, major mood swings and self harm triggers right in front of me often (having to deal with my partner's) I managed to stay 'sober' so to speak.

Up until a few days ago when everything got to the point that I could not take it anymore. My family were being terrible to both my partner and myself, the amount of gaslighting could have blown up the house and it turned out that I was weaker than I thought.

I succumbed to the urge.

My mom kept drilling the point that my partner was bad for me, that we were molly coddling each other, that I do not have ADHD and should focus on doing my work efficiently, that and that the only reason I am still stuck depressed is because I say that I have depression and that I should just think positive.

I have never indulged in any substances and do not mean any disrespect to people who have had to grapple with substance abuse, but I really feel like an addict who has relapsed.

I did it once and then again and then again and I've been doing it since. I spoke to my therapist about it, they gave me some ideas to cope, I tried them, pushed them to their limits and then just started cutting again.
I had a suicidal episode the other night and despite formulating multiple plans on how to make all this stop I somehow managed to lock the knife in a drawer and exhaust myself crying on the floor.
I've been incapable of focusing on anything since.
My partner thankfully came and picked me up from my place the moment my therapist informed them of what happened that night.

I know I should be relieved that I'm away from home right now, but I feel hollow, I feel guilty for making a fuss and worrying them, I feel guilty for not being able to even sign-in to work since Wednesday, pretending that I was sick.

I'm just so exhausted. Part of me doesn't want to go on, but part of me doesn't want to die.

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