Need some good support....... feeling really.... bad

bearxfoo · April 2012

So, some back story.

In January of 2011, at the age of 22, I had a massive DVT - Deep Vein Thrombosis. It was my first major medical emergency and it came completely out of no where. All my life I've had aches and pains in my back, stomach, and legs, but never did I think it was because of this.

Well, it was.

I had stayed home from work from being ill (cold) and towards the evening, I decided to shower after lazing around the house all day (not sedentary - I had cleaned a little, gotten up to take care of my dog, ate, went to the bathroom, etc). While I was in the shower, my leg turned purple and hurt incredibly bad. I was taken to the ER and admitted. I was in the hospital for about a week and had the most hellish experience ever. Not because of the hospital, but because of the medical procedures I went through. I had two procedures done, and now have a stent in my vein.

The cause of my blood clot was because my illiac vein collapsed due to my illiac artery compressing it. It was a birth defect, essentially, that just "happened" (there is no none cause, like... some birth defects have). It's proper term is "May-Thurner Syndrome".

Lately I've been having nightmares about getting another blood clot... I don't know how many others have been through this, but did you get nightmares too? I'm so so scared of it happening again, especially since I've been trying to eat a lot more "green" foods, with have Vitamin K, which makes your blood clot! When I had my blood clot, I was restricted from eating them.

Now I can and I just can't get past the fear... so if anybody has been through this or something similar, how did you deal?

prism6 · April 2012

My dad did. I don't know if he worries about it,but I do know he really has to watch his diet and that it hasn't stopped him from mountain climbing,kyaking,snowshoeing ect... It can eat you up and keep from enjoying life if you let it. Just follow your doctors orders and try to stay active and healthy. good luck to you

bugnsamsmom · April 2012

My 13 year old was diagnosed with Intestinal Non-Rotation in November. 2% of the population is born with it and 90% of those are diagnosed by age 1 and 75% of those are diagnosed by age 1-month! How she made it this long without any problems or diagnosis is unbelievable!

She was afraid to eat for fear of another blockage. After her surgery she would lay flat on her back because she was afraid to lay on her stomach. School didn't help because once she got the all clear to return to gym class after surgery they wouldn't let her do sit ups or crunches and they only just started having her dismissed with the rest of the class otherwise she was being dismissed 5 minutes early so as not to be bumped in the hallway. She's still afraid of being bumped in the stomach.

What we tell her is...the surgeon went in and made your insides as safe as they can possibly be (things are not in their normal place). He did his job...and now you have to do yours...you have to live life to the fullest!

That goes for you, too. I get that you are afraid...who wouldn't be after being through all that you have. I applaud you for sharing your story. But the surgeons made you as safe as possible. Now you have to get out there and live your life...that's why they did the surgery...so you could live your life. Granted...it's not a guarantee...but there are no guarantees for any of us. My husband is a Police Officer and my girlfriends often ask me how I sleep at night when he's at work. I tell them...I can't the the "maybes" keep me from sleeping or from living my life. Those maybe's are very real...but then again...maybe not. So, I choose to live with the maybe not. If I never slept...if my daughter never got back out there (she's now doing the high jump and triple jump on her Jr. High track team) then why go through all the trouble of the surgery if she was just going to allow herself to waste away due to fear of what might, possibly, maybe could happen.

Get out there...live life! Don't let the scary maybe's allow you to miss out on the really good maybe's. Maybe you'll see a rainbow...maybe you'll meet your soulmate...maybe you'll meet a great new friend...

I know my stories aren't quite the same...but I hope the lesson helped a little bit.

Alex_is_Hawks · April 2012

I have Factor V Leiden gene...it's a genetic anomaly where your body doesn't make Protein C. Protein C and protein S are the two proteins in our blood that work together to manage clotting. People who don't have protein S are hemophiliacs, people like me, are clotters.

I had my first clot at age 20, three weeks before my 21st birthday, put me in the ICU and no one thought I was going to make it. It was very scary and very life changing.

I've had two clots since, both in aggravated situations. Even though i'm overweight, I'm VERY active, I move around a lot, stand a lot as opposed to sitting. I'm not asking for these again.

I've managed my clotting through aggressive medication routines when I knew I was in danger of clotting again. For example, I went on a 9 month injection plan when I was pregnant, and I just finished a 4 week injection plan after my surgery February 28th.

I take warfarin for 2 weeks before I fly and during my trip and then for a week after I get home. I watch each bruise I get and make sure it's just a bruise and not a potential to be something more.

As long as you take full responsibility for your care and educate yourself as MUCH as possible about things you can do to alleviate the syndrome then you shouldn't be held back by it at all.

I understand the nightmares, I've had them. That week in the hospital, in the Emergency care ICU I was in a private room watching through the door window as they wheeled person after person into the private care room across the hall from me, and 2-3 hours later wheel them out with a blanket covering their face. That was horrific. It really made me realise how close I came to dying at just 20 years old.

But once I fully took control of my destiny, MY care and MY responsibility to my body, then the nightmares stopped because I knew I was doing everything I could to live a long and happy life.

Know your symptoms, know your options on care levels, know your INR/PTT....everytime I get blood done for any reason, I ask them to add in an INR/PTT just so I can see my levels. I know where my ranges are and what they should be.

Thanks

Lauren

ZugTheMegasaurus · April 2012

For four years (2007-2011), I had a horrible digestive illness. It started out vomiting in the mornings, right when I got up. Then the stomach pain started in. Then I started vomiting more. I lost any and all appetite. Food made me sick, and it hurt. By 2010, I was vomiting upwards of 15 times a day, every day, and it was often bloody. Every waking moment involved excruciating abdominal pain. I tried vegetarian and vegan diets, restricting every kind of food I could think of, but nothing changed. I lost my health insurance in 2008, right before it got severe, so I paid out of pocket for the few doctor visits I could afford, but every test came up with nothing. My doctors started accusing me of having an eating disorder, making it up for attention, or exaggerating the severity. I completely gave up hope. I slept all the time. I was pale and shaky because I couldn't absorb any nutrients. I ended up in the ER over and over again to get rehydrated. I completely expected to die any day, but at least then I wouldn't be in pain anymore and at least my family might find out what was wrong at autopsy.

Finally, in May of last year, my boyfriend begged me to try one more time. I had insurance through my school at this point, so while I just knew that it wouldn't help, I figured it wouldn't hurt. I found a new doctor and made an appointment. She actually took me seriously. She believed me. And she walked me right across the hall to a gastroenterologist who took me on right then and there. He said to me, "A lot of doctors assume that because you're young, there can't be anything wrong with you. But I will find out what is wrong and I WILL help you."

He ordered test after test. Blood, stool, x-ray, ultrasound, colonoscopy. All of it came back normal. I was crushed. Finally, he said he had one last idea before we needed to find other routes: an upper GI endoscopy. I went in expecting nothing again and told them as much as they were putting me under, though I thanked them for trying.

I woke up from the anesthesia and my doctor was instantaneously at my side to tell me, "We found it. And we can fix it." It turned out that a medication I'd taken years before had relaxed the sphincter below my stomach. For years, stomach acid was leaking out and had nearly completely eroded away my duodenum (the uppermost part of the intestine). And while it would eventually have killed me if it hadn't ever been found, it was able to be fixed by nothing more than one pill a day.

So I really understand the fear. Every time I get even a mild stomachache, or catch a stomach flu, or feel nauseated, I panic. I am so afraid of going through it again, of being so scared and in so much pain. The only thing I can do is tell myself that NOW, I know. I know what to do, what questions to ask, who can help me, and how to get what I need. I know that giving up is not an option. I know that I'm the only one controlling my life and my health; even when something is beyond my control, I'm still the only one who can remedy or stop it. All you can do is live your life to the best of your ability. Be aware of your condition, but don't dwell on it. It only controls your life if you let it.

bearxfoo · April 2012

Thanks so much for the replies. It really helps to see you guys' stories and how strong all of you are. Really, thank you so much for sharing.

Need some good support....... feeling really.... bad

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