Sometimes, It's All About Your Shitty Genes

First some needed history. According to the esteemed doctors who sometimes don't know crap, I was told by one of them that I had to take Avelox for an ear infection. Avelox, I later found out, could give a person blood clots (the person in this case is me). I went to the Emergency Room for excruciating pain. 

Quoting from my previous blog (How Two Legal Drugs Caused My Hemorrhagic Stroke, and here's the link --https://stroketales.blogspot.com/2014/07/how-two-legal-drugs-caused-my-stroke.html), "The ER doctor admitted me and I was put on Lovenox, a low-molecular form of Heparin, to break up the clots. (Now here's where the story gets interesting). As a result of being on Heparin, I developed Heparin-induced thrombocytopenia (HIT), a serious side effect that may occur when one is being treated with heparin. HIT can lead to low blood platelet counts, which I had." 

HIT can also cause a brain bleed, ergo my hemorrhagic stroke. And that explanation, to my brain with parts that died, never to return, made sense enough.

But there's more to the story. Once I moved to Portland, I found out through a blood test that I had Protein S Deficiency, which causes abnormal clotting.

The National Institutes of Health say, "Protein S Deficiency (PSD) is usually hereditary, but may be acquired from lack of Vitamin K, for example. [My mother cooked everything more than it should have been, including  green vegetables, a primary source of Vitamin K, until they lost some of the vitamins inherently theirs].  The hereditary form of Protein S Deficiency is caused by a mutation in a gene called PROS1.  This condition is inherited in a dominant manner, which means that an individual who inherits only one mutated copy of PROS1 has an increased chance of developing symptoms of this disease."

So whether hereditary or acquired, I had PSD.

"There are tests for Protein S Deficiency, just ask your hematologist for screening," says James of the group dedicated to Protein S Deficiency.  [https://www.proteinsdeficiency.com/] "Apart from clotting related issues, I am not aware of any other issues caused by Protein S Deficiency."

I did a random poll among family and friends, knowing what happened to me, about whether they should get tested for abnormal blood clotting with Protein S Deficiency. Here are some of their stupid, meaningless responses:

"Hell, no. Why would I do testing if it's going to happen anyway?"

"If it's meant to be, it's meant to be."

"I hate going to the doctor."

The NIH also say, "The greatest life-theatening risk to patients with protein S deficiency is a pulmonary embolism (PE), a deep vein thrombosis (DVT) that travels through the bloodstream and gets stuck in the lungs. People with hereditary protein S deficiency have about a 2- to 11 times increased risk for developing a DVT or PE in comparison with those without a deficiency."

I had a PE, too, in 2015.

Whether the reason I got the stroke is from HIT, PSD, or both, there are tests to know the risks for both HIT and PSD. Wouldn't you want to know? 

Or are you like the ostrich who buries his head in the sand? (Not true, by the way. It's a metaphor. But it serves the purpose here). Why worry for a week or two if you have HIT and PSD before you get symptoms, if you could know the next day through tests? The tests would involve a blood draw, but man or woman up! 

Collecting Data on Stroke and Other Brain Injury Survivors Can Be Simpler When One Problem is Gone

Collecting stroke data are the bane of researchers. Few people are aware of https://clinicaltrials.gov/ where someone goes in search of a clinical trial. And to collect data from the patients or families themselves is not often done because of the strictly adhered to schedules of hospitalized stroke survivors. Welcome to the "disconnect" when patients are shamefully discharged out the door. So re-invent the discharge.

And once they are discharged, there aren't any places to find "us." The survivors and families are confused and angry to find the next step because often, there isn't any next steps. The hospitals take the brunt of their topsy-turvy positions because they struggle to get responses to their post-discharge surveys and live under the fear of readmission. Wouldn’t your life be simpler if you have a way to stay in touch with us? Why don't you work with a team who is collaborating to find a solution? 

The dreadful, devastating experience is real and is reflected on so many issues around data. You eventually lose trust with survivors, and the data is in jeopardy. When you have restored the trust and get back in touch, why would data ever be an issue? Strokefocus is the answer.

All the survivor wants is a light at the end of the tunnel, but months that turn into years live in the dark. Your research is therefore running empty often in total disconnect with the survivor community. 

I understand you are looking for data and participants to your carefully designed research projects. I have also heard so many times that you are struggling to find us. It often takes your team of very talented graduate students months to collect some data merely enough for your regression analysis. They hate how laborious it is to find us. They hate how much they have to work on the phone convincing us to come to your lab. Some of us who participated in your studies vowed to never go back. Many of us feel your researchers have no idea what we are going through and the help we want. Making matters worse, we hear that because it is so hard to demonstrate the value and impact of your research, funding becomes harder and harder to get. 

After all, there are 8 million of us crying for help. Shouldn't the task of getting a few thousand data points be like a cake walk? The issue is not with data but with a disconnect that destroyed the trust between us. 

Data collection is nothing more than “getting to know you” on an industrial scale. But you don’t even know, in most cases,  where the “we” are. And sadly, our ties with society breaks, or disconnects, at every discharge office. 

To rebuild the trust and connection, let me start by helping you understand what a survivor goes through. I had a stroke and spent 3-1/2 months in the hospital. Friends, family members, and colleagues, all of whom dwindled in time to a select few, came to visit me in the trauma center, the stroke rehab, and the step-down unit.

But after a while, I didn't want them to come. They said ignorant things like "Can you go home if you can't walk" (as if that condition would last forever) or "I hate seeing you in your condition" (even though I couldn't do anything about it) that added to my sorrow. Having the stroke itself is easy compared to what comes after: trouble peeing, constant and medically-induced constipation, double vision, speech and the resultant communication problems, one-sided mobility, anger, confusion, and frustration leading to depression, and lots more. I want to forget but can't. 

Does my stroke experience sound vaguely familiar? Of course, it does. Stroke survivors, even though no two strokes are exactly the same, follow similar patterns of recovery, similar to Elizabeth Kubler-Ross's 5 stages of grief (denial, anger, bargaining, depression, and acceptance). But even Kubler-Ross, if she were alive today, would say the stroke survivors take longer to go through the steps than, say, a death of a friend.

If you do not help turn the discharge office into the starting point of a new type of connection, then you will continue to be like chasing zillions of untethered flying kites into oblivion. We both have a stake in the game! Work with us! (1)

(1) This blog was a collaboration between me and Jing (Daniel) Gu, the founder of Strokefocus.net (new release coming this month), a site that's revolutionary for stroke survivors, caregivers, family, friends, health professionals, anybody who has stroke in their genetic pool, and other people who just want to know about strokes. If you want to read more about gracious, thoughtful, and oh-so-brilliant Daniel, check out   https://stroketales.blogspot.com/2016/10/a-place-for-everything-stroke-and-other.html