Survivor Spotlight with Lisa Marie Nielsen

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Today’s Survivor Spotlight is with Lisa Marie Nielsen. She actually wrote out her story herself in a blog.  I decided their was no use in me re-writing it and she has some videos and such added to hers that I wanted to keep intact with her story.  What an amazing lady with a great support system and reminders that the best medicine for some of us is those infectious little people in our lives that definitely keep us hopping, hoping, laughing, praying, loving, hiding and bringing much joy to our lives in so many different ways!

Click here to read and please share her story for Awareness!

https://lisamarienielsen.wordpress.com/2017/01/04/once-upon-a-december/?preview=true

 

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Survivor Spotlight with Kim Halloran

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My clotting history dates back to 1994 with my first known risk being birth control.  At that time, no leg scans were done to confirm my diagnosis, but looking back, I know that is when I started clotting. 

A few years later, I had multiple superficial clots in my legs.  My doctor didn’t seem concerned and only instructed me to take Ibuprofen, heat and elevate. 

While training to run my first marathon (couch to marathon) in 2003, less than a month before the marathon, I developed multiple superficial clots and was told that I was to rest, take Ibuprofen, heat and elevate.  I was also told not to run the marathon that I had been training for 9 months to do.  They still ran no tests to determine root cause.

In 2006, I had a pain in my thigh and I told my doctor I believed it to be a clot.  They sent me home with a diagnosis of cellulitis and a script for Cipro.  That weekend, we drove 6 hours to attend my cousin’s wedding with no dancing for me due to the pain being unbearable at this time.  I returned to the doctor with no improvement after a week.  They finally performed the leg scan and confirmed a (very painful) superficial clot.  When I got pregnant a few months later, my doctor decided to have a full work up done to see why I was clotting. We learned that I am hetero for FVL & MTHFR.  Neither my hematologist nor my primary doctor believed that having either heterozygous genetic anomaly would increase my risk of clotting so they put me on 81mg aspirin for the duration of my pregnancy as a precaution. I joined a list serve born out of FVLEIDEN.org, created by Deb Smith – before the days of Facebook. This community begged to differ.  They provided support and advice much like SASK.

In May 2008, a year after a successful pregnancy, I woke up and walked down the stairs with a “groin pull” sensation.  After arriving to work, one leg felt heavier and I immediately suspected a DVT (my first).  My FVL list serve community urged me to get to the ER as sson as possiblefor they believed I had a DVT.  With DVT confirmed, my FVL list serve community gave me the best advice.  they  told me I should seek out an interventional radiologist and get a consult for a catheter directed thrombolysis (CDT).  I found a vascular surgeon who would perform the procedure, knowing the best success happens when the procedure is performed within 7-10 days of DVT onset.  Time was of the essence to prevent post thrombotic syndrome (PTS).  I was asked to be in a study which was to help determine if DVTs were better treated by Warfarin+time or by the CDT.  I declined, knowing that the CDT was what I needed to do.  During the surgery, it was learned that I had May Thurner’s Syndrome (MTS), something that wouldn’t have been found without the CDT.  I had a stent put in to prevent future issues, believing that to be the cause of  my DVT. 

Looking back, I had the perfect storm which helped facilitate the DVT occurring – dehydration caused by food poisoning that resulted in bed rest & starting a new diet full of green veggies – all in a week or two span. I had felt the superficial clot the week before in my ankle on Monday, in my calf on Thursday and gone (no pain) by the weekend.  The DVT symptoms occurred the following Tuesday.  I was on Warfarin for 6 months & then cleared.  I never felt I had dodged a bullet so to speak.

In Feb 2016, I got home from work, elevated my legs to watch a little TV, and upon standing I felt one leg was heavier than the other.  Immediately, I thought I may have a DVT.  I went upstairs & packed an overnight bag while calling my doctor’s office to talk with the on call doctor.  He told me to drive (through a nasty snowstorm) to the regional hospital where I was sure they’d keep me for a night and send me home.  The ER whisked me in, confirmed the DVT and was afraid to touch me, preferring to transfer me to the hospital my vascular doctor was affiliated with.  Needless to say, I had my first chauffeured (ambulance) ride to the city for a lovely weekend at the B&B (was stuck there for 48 hours in observation).  A week later, my vascular doctor had me in to clear the clot and put in a 2nd stent to elongate the first one with 6 months of Xarelto which caused horrible bloating and a 30 lb weight gain in 6 weeks

About a month after stopping Xarleto, whistling as I worked in the garden all weekend (Nov 2016), never occurring that I could possibly have another DVT, I became dehydrated.  Within two days time , I knew I had a superficial clot.  I treated myself (NOT ADVISABLE!) with regular aspirin to “dissolve” the clot for a month.  The aspirin wasn’t working, so back to my vascular doctor for a check.  All went well, only a superficial clot was found, so back on Warfarin it was with the hope of preventing a DVT.  A few days later, I had a ‘”twinge” in my back, believing it to be a slightly dislocated rib, I saw my chiropractor for an adjustment.  That same afternoon, I saw my hematologist for a follow-up and Warfarin management.  Both were told of my pain which occurred only with deep breath and only one spot on my back, right side under the back of my bra.  My pulse O2 was 98% & heart rate was fine.  The pain level increased significantly over the evening.  After 2 painful nights, I googled rib pain and PE.  Two posts came up stating that PE was often misdiagnosed as rib pain. Given, I had suspected I had a superficial clot for a month which had been a confirmed diagnosis the week before, it made sense that it was a PE. When my husband brought me to the ER, I told them it was very likely I had a PE. They ushered me in quickly and performed a ultrasound that confirmed a DVT and the CT showed bi-lateral/saddle PEs. I got in quickly, so no residual issues for which I am very lucky.  I am on Warfarin for life now and I’ve been having (mostly superficial) clots for 25 yrs now.  The years of clotting and multiple DVTs weakened my valves.  Due to this damage, I’m now more prone to DVT’s. 

I’m one year out from dodging that PE bullet and hear the message loud and clear now!!  I am thankful I didn’t die, as my grandfather did from a PE. We only live once and I am so very blessed to not have PTS or chronic pain from all my years of clotting.  I am also equally blessed to have a wonderful husband that supports me.  As much as I resisted having to take Warfarin for life, it has given me a second chance to be with my family,  do things I love like scuba diving for which I did this summer and it was a blast! I don’t think I’ll be skydiving again and I don’t think I’ll be skiing black diamond trails on icy days, but on fresh powder? Sure! I’ll wear a helmet and take it slow. I’m probably more at risk of bleeding when I am quilting.  😉  Counting my blessings daily.  ❤

Survivor Spotlight with Heather Davidson

My Survivor Story…..By Heather Davidson

My nightmare began on December 27th, 2016 . At least, I felt like this is when it all began but actually it began on May of 2016.  I have dealt with a hormonal imbalance for many years.  After numerous naturopathic remedies, Endocrinologists, Primary doctors, support from friends and family, I decided to take my last option available to me, birth control pills. Marvelon was Marvelous! I felt myself again for the first time in many years and was living life to the fullest again.  Little did I know that this “magical pill” was doing more harm than good.

I had Sinus and Septoplasty surgery on November 1, 2016.  This was a simple Day Surgery and I was only off work for 2 weeks to recover.  The only reason I needed 2 weeks off is to catch up on all the lost sleep that I didn’t get from the week before. After returning to my teaching job I noticed a charley horse pain in my left calf that would come and go.  I found sitting caused more pain while moving and walking made it feel better.  I developed eczema around my neck and had major night sweats for a few weeks.  I kept telling myself it was from the surgery and that my leg must hurt from potassium deficiency.  The pain continued into December. I remember going Christmas shopping with my mother and I couldn’t wear my favorite heeled boots as the charley horse pain was becoming more painful.  I seemed to lose my energy more quickly and even climbing up 2 flights of stairs to get to my classroom seemed like a huge challenge.  I jokingly asked my administration to put in a chair lift as I was breathless upon getting to the top. Again, self diagnosing, I thought I just must be out of shape because I had not exercised since before my surgery.  I just felt I never bounced back from surgery the way I should have.

My family noticed over Christmas how I had a hard time walking.  After leaving my mother’s house to return home on December 27th ( a short 45 minute drive), I couldn’t walk thanks to my left leg pain.  I told my husband how I thought I needed physio and finally decided to go see my family doctor. The doctor listened to my heart beat, measured my left leg and checked my blood pressure.  Shortly after that, she told me to immediately go to Emergency Department as she feared I had a blood clot.  I remember laughing at her and saying I was too young for this.  After waiting hours at the hospital, the ultrasound technician called me in and told me that yes, I had an ankle to groin left leg DVT.  I was sent home with a prescription of Xarelto and told to follow up with my family doctor.

The next day I went back to my family doctor. Again my blood pressure was off and I had a lot of PVC’s when listening to my heart beat.  She was worried that these clots were also in my lungs.  She called the hospital and they rushed me in for a VQ lung scan.  I knew immediately after the test that the worst news was coming my way as they made me wait in a waiting room filled with Kleenex boxes.  I was told 2 clots were in my left lung and I was lucky to still be alive.  I was in shock when I heard the term 2 PE’s in your left lung. I remember crying for hours as I called my family to give them the news.  I was supposed to be going to a Buffalo Sabres game that evening with all of them.

I was hospitalized for 3 days in a hospital that had no beds.  I was placed in an emergency ward surrounded by patients with pneumonia and influenza.  A week after coming home, I had pneumonia which wasn’t easy on my poor lungs.

The next few weeks were a challenge.  I could hardly walk and was sleeping at least 16 hours a night.  I needed to rely on my husband and mother to pretty much do everything.  I was told no lifting anything over 5 pounds for at least a month.  It was very difficult emotionally to go from an active person to a dormant person.  The worst part was that I have a 6 year old boy who witnessed all this and wanted his mommy back.

My nightmare, as I refer to it, has taught me a lot over the past 10 months.  I am still learning who I am, who I want be and who my friends are and who supports me in my life. supports in my life.  I have learned to truly love myself.   I am lucky to be alive! I and thankful, appreciate am grateful for my second chance.  Recovery has not always been easy and I have been faced with many challenges along the way but I believe this experience has made me a stronger person.  I am beginning to work out again, build back my strength in my lungs and my muscles.  I am able to play with my son again and not always tell him that mommy is too tired.  I am able to go out in the world again and not panic that this experience will ever happen again even though some days this is a struggle more than others.  I am climbing a mountain, ready to reach the top and start my journey down. By sharing this story I hope to raise awareness to support those who are struggling.  I give huge thanks and gratitude to the 2 Facebook support groups I joined that have helped me tremendously in my recovery.  I hope my story will help others.

Survivor Spotlight with Vikki Mathews

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My story began February 1st 2017.  Eight days before turning 18, a horrid headache hit me very suddenly. It felt like a very bad migraine, in which usually pain killers, a nap and a dark room would cure. Three days later, I still had no relief.   I sought help and was told it was a classic migraine. I received migraine medicine, which I was happy to accept, as it wasn’t the first time I had a migraine that lasted days. Over the next week I tried a few more migraine medicines and days of rest to help.  I spent my 18th birthday in awful pain.
On February 20th, at 5 am, I woke up with a blinding headache. I rang in sick to work and immediately made another doctors appointment. On this day, I got sent to A&E. The right side of my body was numb and weak.  I was vomiting and had a massive headache which are the classic signs of a stroke right? Apparently not, the ambulance team and doctor at the hospital told me it was stress headaches.  I was sent home with more migraine tablets! I recovered from a mini stroke at home and spent over a week in bed. I was in and out of consciousness.  I was also having seizures (which I didn’t know were seizures until much later). After another complaint of head pain to my doctor, I finally got an MRI.
Finally, on March 13th, I got a phone call to get to hospital for immediate treatment. Here, they found a secondary bleed and 2 blood clots in my brain. They also told me that I had a mini stroke in February. I was diagnosed with Cerebral Venous Sinus Thrombosis and put straight on Clexane and Warfarin. After experiencing another seizure, I was told that I was experiencing partial seizures in my arms due to scarring on my brain from the clots.
I found out in June my clots and bleed had disappeared.  My brain looked much better! In September, after blood tests, it became apparent that I had a genetic mutation called Prothrombin Variant Heterozygous Mutation causing my blood to clot more than usual.
This mutation combined with the contraceptive pill, triggered clots to form in my brain. I still struggle every day with the effects the clots had on my brain, despite my brain “appearing” okay on scans. Before this, I never even thought someone my age could get blood clots anywhere, never mind in the brain and be at risk of a deadly stroke or sudden death. I am still coming to terms with what I have been through myself, but still try to raise awareness where I can of the rare side effects of the pill and the signs and symptoms of thrombosis and stroke. I would like to think I could prevent this from happening to someone else by raising awareness.
 

 

Survivor Spotlight with Suzie White Korte

This journey for me all started in 2005 when my back went out. I was literally in bed for two and a half months before they could get me in for surgery. I could not walk and had to have my son, mother- in- law, sister and my husband assist me to the bathroom and back to bed.

My first back surgery was August of 2005. During this surgery they took the bottom two discs out and didn’t put anything in their place. Another surgery came in 2008 where they removed another disc above where the other two were. At this time, I was diagnosed with fibromyalgia, high blood pressure, high cholesterol, severe nerve damage in my left leg, irregular heartbeat, severe depression, anxiety, panic attacks and several other medical conditions.

In May 2011, I had a spinal cord stimulator put in. It is supposed to help with the chronic back pain.

In January 2014 ,I started swelling in my face, legs, hands, etc. The then put me on a water pill.   It worked for a little while.

Then in September of 2014, my legs swelled so bad they looked like tree trunks.  I couldn’t see my knees or ankles and my face swelled up enormously.  That evening I started having heart palpitations and really bad chest pain. I honestly thought it was a heart attack. I took my blood pressure and it was really high.  I told my husband that I needed to go to the ER.   He stated to me that he didn’t have the gas to take me there and still be able to go to work in the morning.  By this time, my chest hurt so bad I was crying.  I told him I was going to call 911 and he said “No don’t do that. What if someone has a life threatening situation?” At that point, I didn’t care. I called 911.  The paramedics came and took my BP.  It was 175/110, my pulse was 168 and my O2 was sitting at 87 .  I was then placed in the ambulance.  By this time, I was wheezing really bad and so they gave me a total of 3 Nitros in the ambulance.  It didn’t change anything.  I got to the hospital where they took me straight to a room.  They did the IV and several other things.  Then they rushed me for a CT scan.  When the results came back the doctor came in and said you have massive bilateral pulmonary embolisms and a DVT.   I had never heard of it before now.  He said to me that usually when he places this type of diagnosis on someone they are already deceased.  I spent 3 days in ICU. I don’t remember much. I do remember my husband came to see me in ICU.  He walked in crying.  He said he was so sorry and that he had no idea I was that sick.  After 3 days I was sent to a regular room. I spent a total of 6 days in the hospital.  They had me on Lovenox injections and Coumadin. I went home with a script for Xarelto for which I am still taking.  

A few weeks after all that,  I went back in and had another DVT. They kept me a few more days and sent me home.  I finally got in to see a hemotologist and asked him to run tests for blood clotting disorders.   He said there were too many to test for but he did test for a few it came back I had MTHFR.  I had to do some reading to find out what exactly it was.

After I came home from the hospital I was afraid to even move.  I had many panic attacks and I was scared to death.

Now, 2 years later, I got a second chance at life! I never take not a minute for granted because it can all be gone in the blink of an eye. I want to say I don’t know what I would have done without this group.  You ALL got me through the scariest time in my life ever and for that I can never EVER repay you all! I love each and everyone of you ❤

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Survivor Spotlight with Gary H. Steadman

                                       Half Marathon Finish Line Photo
                                              
At 54 yrs of age, I was more healthy than I’d been in decades. or so I thought. What I didn’t know was my life was at greater risk than ever before. Four years earlier I’d made significant changes to improve my health and quality of life. I began exercising consistently, changed my diet, lost 50 pounds and transformed blood test results from ugly to spotless. It all worked fabulously and yet, my life was in grave danger with every breath and heartbeat. I had no idea what was happening, none.
The end of October marks my one year anniversary from the moment my world suddenly changed. I should say my awareness suddenly changed because what was happening in my body took time and developed slowly. It was late October of last year that I found myself desperately short of breath. I couldn’t climb stairs. I’d been fighting for what I thought was a cold for weeks, over eight weeks to be exact. The cough I told everyone would go away in time, was getting so severe I could barely breathe without having a coughing fit. I’d made three visits to the doctor, gone through every prescribed course of treatment and was only getting worse.
At the same time, I was limping along with knee pain. A pain I believed came from my running. I’d trained for weeks in preparation for an early September Half Marathon. With distance training, for me anyways, has always had some form of pain somewhere and the pain in my knee wasn’t new at all. This time it couldn’t be soothed in the usual ways with icing it down, stretching, foam rollers or even deep tissue massage. I completed that Half Marathon in early September. Knowing what I know now, I feel fortunate I made it to the finish line alive.
My wife had seen what was going on with my health but it wasn’t till late October, when I shared one more symptom with her, we decided I had to get to the hospital. The leg with knee pain was now swelling and the pain extended from my ankle up to mid-thigh. We were received at the hospital ER rather routinely, checked in and waited three hours till a room was available. The nurse ran us through the routine of questions and examined my leg and lungs for the coughing. From there, things got a little crazy.
This ER nurse was an angel. Although she wouldn’t say so directly, she knew what was going on right from the start. She pressed for quick action in getting specialists in to see me, tests ordered and processed. Over the course of the next few hours, I would see no less than five different specialists. They ran round after round of blood tests, x-rays, EKG, ultrasounds, CT scans, more CT scans. It was a long night and very much a blur.
My diagnosis was Deep Vein Thrombosis (DVT) in five separate major veins of my right leg extending from ankle through hip. On top of that, the CT scans confirmed extensive Pulmonary Embolisms (PE) in both my lungs and in all lobes. There’s not a lot of detail I recall from this blur of a night but a few things that I do recall clearly are numerous medical professionals reviewing my case and shared I was “very lucky to be here”. I don’t recall any doctor willing to state I’d be ok, just that they’ll do everything they can to help me. The Pulmonologist, reviewing my chest CT started to count the PE’s then stopped because there were too many to count. His comment was, “It looks like a snowstorm, this’s impressive!”. I really didn’t want to be, impressive.
For the next four days, I would be in Critical Care. I was administered Heparin by IV to stop further clotting. We reviewed numerous potential avenues to resolve the clots in my leg and my lungs. Ultimately, we were advised, my situation was so extensive any invasive action which could be taken would put me in even greater danger (of a terminal event).  We’ll use medication to stop the clotting and the rest is up to my body’s natural healing processes. In time, that’s exactly what has happened. My body has largely healed itself. My leg is still not what I would consider normal, but it’s 95% and that may be my new normal.
All that being said I have to be honest, this is where things actually got difficult for me. This was, and still is, an emotional roller coaster like I’ve never before experienced. For me, this was the first time I’ve been convinced I was truly facing my pending mortality. The challenge of this and the changes it brought on an emotional level have been something I simply didn’t see coming. This is very hard to share and something I’ve pondered countless times in the last few months. I don’t see many addressing this side of what’s happened to them, the emotional impact, and that’s part of the problem. You can feel very alone even though you’re not. So if you’ve been through this or something similar and that roller coaster is hitting you hard, know you’re not alone.
To survive a day you’re absolutely convinced was to be your last, profoundly changes your outlook on everything. EVERYTHING.
I can’t think of a better way to characterize the impact of this event. It can be a good thing. There are highs on the roller coaster I refer to above. You appreciate everything in new and more powerful ways. Your family, music, the spring air, fall colors, a baby’s cry (even if it’s in the airplane seat behind you). You have less time for things that waste your time and more time for things that don’t. There are countless cliche’s I could rattle off here but what I’ve come away with is this. At my one year anniversary of this life event, I can appreciate this year which might not have been. Better than that though, knowing my risks means I have a better shot at enjoying many more to come and I’ll be savoring every bit of it.
Learn the symptoms of thrombosis and your personal risks. One day it could save your life or the life of someone you love.
To Survive a Day...

Survivor Spotlight with Maria Buchan

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My Survivor Story

In 1996 ,at the age of 23, I was celebrating my 1st wedding anniversary and the news that we were expecting our first child.  Everything was going well with the pregnancy until 36 weeks. At this time, I developed pre-eclampsia and was admitted to hospital for rest. My body was swollen, I had high blood pressure, protein in my urine and the most excruciating pains in my legs so much so I couldn’t lie on them.

At 38 weeks, I went in to labor.  I had complications and had to have a C-section. I had a bad reaction to the anaesthetic and went into shock.  I was on a drip, antibiotics and pain meds. After 5 days, I left hospital with my gorgeous newborn son, but things just were not right. I was breathless, unable to walk very far and still had the pains in my legs. No one listened to my concerns. At my 7 week post-natal exam, I mentioned this to my doctor and she told me not to worry for the fact that I had just had a baby. She assured me things would be fine.
Three days later, I collapsed at home with only my baby boy with me. Luckily, I woke and phoned my mum. She ran over and phoned a doctor on a Sunday afternoon.  After the doctor saw me and examined me he told us that I had to go to hospital immediately.  I wasn’t in a good place.

In the hospital, I was placed in a critical bed near the nurses, I couldn’t even walk the 2 feet to the bed! I was placed on oxygen. I had chest scans, vq scans, more tests, bloods etc. Later, I found out how lucky I really was.  I had numerous blood clots including a sub massive clot in my left lung, and pneumonia.  They had medical students round me listening to my double heartbeat, they said they probably wouldn’t hear one again soon. I was on heparin, painkillers and antibiotics.  I went into shock again, my body was in trouble. Eventually, after 10 days in hospital, I was discharged and left to get on with life at home with only 6 months of warfarin, and no check-ups. What was meant to be the happiest and most wonderful time in any woman’s life was blighted and turned upside down, but that was only the beginning.
In 2003, after the sudden death of my only brother, my mum was rushed to hospital with blood clots in her lungs. She was released within 5 days and on blood thinners for 6 months. Less than a year later the same thing happened again and she was admitted with blood clots again.  The doctors then starting asking questions about our family history. When mum was discharged from hospital and a lifer on blood thinners we checked and found death certificates.  We found out that my maternal grandfather and his mother my great grandmother also had died of pulmonary embolisms! At the ages of 61 & 58.
We were sent for genetic testing in 2004 where it came back positive for antithrombin def III and unfortunately, I have passed this down to my son.
In 2009, I was having breathing problems.  By this time, I was diagnosed with asthma and after seeing my GP I was admitted to hospital with numerous blood clots in both lungs.  I had a stroke also.  Now, I was a lifer on blood thinners.
Since then my breathing and stamina has declined.  I have had various problems and recently had tests to see what’s happening.  Some of the clots in my lungs have never absorbed (pulmonary thromboembolic disease) and I have been left with scar tissue (fibrosis).  I have 2 holes in my heart, a irregular heartbeat and the start or pulmonary hypertension due to the strain on my heart due to the clots.
I have problems that probably in time will get progressively worse but I still get up every morning, swallow a handful of drugs and use inhalers. I live life to the fullest and I enjoy my life. I appreciate everything and everyone in it.  I have people that love me, help me, look out for me and most of all I appreciate being able to breathe. We all have problems.  Some of us must live with the consequences but don’t dwell on them. Life is to short and too precious.

I would like to add that in 1997, I was depressed and in a bad place.  By 2003, I withdrew from life and this continued right up to 2009. With the second blood clot, it gave me the wake up call I needed. Why was I playing around and wasting the best days of my life? I decided instead of wallowing in self pity… I now had another fight, rehab, speech therapy, physio and a whole lot of Staying Alive!

Survivor Spotlight with Beth Bruning

I moved to Albuquerque,New Mexico from Phoenix,Arizona in July of 2015 and have had a hard time breathing since. I have allergies really bad and that makes breathing worse. I got worse when I had mildew growing under my carpet in Arizona. The complex was going to redo the apartment so they didn’t do anything while I was there. They have corporate health care here in New Mexico and I had to wait until December to get an appointment with a pulmonary docotr. I found a primary doctor but she was fresh out of school and didn’t help me much.

Now to take you back to my first clotting episode. My first clot was caused from a laser vein procedure that a nurse practioner did and she couldn’t access the vein so she entered from behind the knee which caused the clot. This was January 24th, 2012.  I went back the next day and was in excruciating pain. I saw a sonograoher not a doctor or nurse practioner. She patted me on the arm, said for me to get some Arnicare and I woukd be ok. My leg was huge at this time. They gave me hydrocodone.

On February 14th, 2012, I saw the doctor and he gave me Gabapentin. Never even caring or giving a second thought that my left leg was huge and red. I was on my way to see another doctor when the nurse practioner’s office called and told me to come in. They did an ultrasound and told me “you have a blood clot”.  I had to be put on blood thinners. Now I had a chronic blood clot in my left leg. The doctor took no responsibility for doing the damage. I had my INR done every week. It was a nightmare.  I was put on blood thinners for six months. 

At 10 months , I was still on them. I finally had the discussion of getting off of them and that is when they told me the clot was chronic and would never go away.   They kept me on blood thinners for 10 months.  Now this is where the allergies come in. I was told I had COPD and asthma. I was given medicine for the allergies,COPD  and everything. As I mentiined above, I had mildew under my carpet and developed a horrible cough but no one did anything about it. My ribs were sore from coughing.

In September, I went to the doctor and had an ultra sound on my chronic blood clot but nothing was done about me being short of breath. They just figured it was my COPD or something else. I have muscle cramps regularly so I thought when my right leg was aching it was from a regular cramp. I was very short of breath. I sat in the ER for 9 hrs on November 17th, 2015 because I couldn’t breathe. The drew blood, took a chest x-ray.  When I saw the doctor and he said I had bronchitis but didn’t understand why my O2 sats kept going up and down. They gave me a breathing treatment, antibotics and steriods. This is the standard treatment when they don’t know what is wrong. All I could do was sit and pray.

On December 25th, 2015, I got my Christmas present. It was bilateral pulmonary embolisms. I drove myself to the ER because I couldnt breathe. The EMT at the desk looked at me and said come with me.   I didn’t go home until the next night. I eventually learned I have Factor V Leiden.  I was 65 years when I was told this.  I have 2 children and have had several surgeries without complications. My heart is ok but I plan on having it checked again. My O2 sats were 70 when I was at the ER. I am on oxygen and blood thinners for life.  I’m on oxygen because of the high altitude in Albuquerque.

My sister that passed away had blood clots in her heart so I think she had the gene.  My older sister was tested but doesn’t have it. Her daughters do.

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This leg has chronic clot behind knee. My leg never looked like this before.

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This is the leg that produced the PE. Yes,I scratch it all the time. I have to move or it swells bad.

I am 67 yrs old now and counting my blessings.

Survivor Spotlight with Ashley Marconi

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In early May of 2014, my husband and I were still growing into our home, shuffling things from room to room after the arrival of our daughter one year earlier. While carrying a heavy antique dresser down the stairs, the back end landed on my right foot at the bottom of the stairwell. It left quite the mark, but I continued to work through the pain and by the end of the day it felt back to normal, or so I thought.
 
Life carried on as normal the following weeks. Being a working mom I had a pretty solid routine down that I stayed focused on. One day in late May 2014, I started experiencing some pretty intense back pain. I was struggling to make it through the work day and asked to be excused early so I could make a trip to the chiropractor. When I arrived, I was limping from the car to the door, but still thought nothing more than maybe a pinched nerve or strained muscle. I got the usual crack and adjustment done which usually brought instant relief. Instead I left feeling worse than when I had arrived. I drove home and immediately called my physician upon arriving. I described my symptoms and was told to get to the ER immediately. A little frazzled by the urgency in his voice, I hobbled into my house, kissed my daughter and mother-in-law goodbye, grabbed my phone charger and drove myself to the hospital.  By the time I arrived, I was in so much pain I had to call the ER and ask them to bring out a wheelchair to get me, I could not walk.
 
The nurses came running out, a look of concern on both their faces they weren’t hiding very well. They ran me through the entrance and bypassed any introductions at the front desk to a fast pass to ER testing. Everything was happening so fast they didn’t even have me get in a hospital gown. I didn’t know what to think, my mind was racing a million miles a minute. My back went from hurting that morning to not being able to walk that afternoon. Was I going to be paralyzed? Did I have permanent nerve damage? What was going on ?
 
I remember laying on the table for the first set of tests – the ultra sound. The technician ran the wand up and down my leg and I saw her face drop.  I looked at her and said “what, what is it?! Please tell me no one has told me anything, please.”. She took a deep breath and said “I’m not supposed to say anything officially until the doctor reviews this but…you have a blood clot. A big one. Its running from your ankle all the way up through your groin.”  I remember it felt like time stopped in that moment. My heart skipped a beat. A blood clot?! At 28 years old?! How?! How is that possible?!  As if she was reading my mind she said “I know you’re young but it does happen. We will figure out why but for now let’s focus on fixing this. Now I’m going to put some pressure on your leg, it is going to hurt so just breath.”  Hurt, didn’t even begin to explain it. The pressure and pain felt like a vice clamping my leg with each press of the wand. I screamed out in pain and tears. She started crying and apologizing. It was all so surreal. I was so frightened.
 
After the ultrasound I was sent straight to an MRI and then to a CT scan. By the time I got back to a room in the ER, my family and husband were there waiting for me. While I was telling them about everything that had happened, I heard the doctor’s outside whispering. “It’s a blood clot, a large one. I don’t know….no I don’t know…. we have to take precautions to prevent this from traveling…..she is so young……yes, I see she has two herniated discs in her back we can’t worry about that right now. If we don’t get this blood clot under control, she won’t have a back to worry about.” They then put on their best faces and walked in together to “officially” inform me of the monster blood clot that had formed in my right leg. They were going to get me started on IV blood thinners and admit me. They were throwing around terms like heparin, dvt and pe, all things I had never heard of before now.  This is my new normal.
 
I spent two days in the hospital before they sent me home for the weekend on lovenox injections. I still couldn’t walk so I relied on my family to assist with my daughter and around the house. My husband gave me my shots as I was in too much pain to do it myself. I spent those days terrified of what was to come. All I could think about was that I had just been blessed with my beautiful daughter and I couldn’t leave her. I had flashbacks of losing my father at a young age and flashes of a future without me in my daughter’s life. It was the most terrifying thing I have ever felt and that gave me the strength to fight.
 
I was admitted back to the hospital after the weekend for a planned procedure. I was going to undergo a procedure called thrombolysis where a catheter is inserted into the back of my leg and it vibrates and dispenses potent blood thinning medication directly into the clot. The risk of catastrophic bleeding was high with the procedure so I was informed a several day stay at the ICU would be to follow.
 
I went into the procedure more scared than I have ever been in my life. They started with some “medicine to relax me” although I was very much awake and feeling everything that was being done. They placed the IVC filter down through my neck into my chest to prevent any clots from traveling up to my lungs. Immediately after I was flipped onto my stomach to have the catheter inserted. I was then brought back to the ICU for observation. I was not allowed to move. I spent that 24 hours in a daze. Being poked every 3 hours around the clock to check my INR. I was terrified. I was scared I wouldn’t make it through to see my husband, my daughter, my mother and my sister. I was depressed about all the memories and moments I would miss. I started thinking up my goodbyes. I tried to write them down but I just couldn’t muster up the energy.
 
My vascular surgeon was about one of the worst doctors I’ve ever encountered. He was uninformative, rude, rough and had terrible bedside manners. He came in after the first 24 hour round and took me back to the OR to check progress. He said my body wasn’t breaking down the clot and he wanted to try an angioplasty. I consented, just desperate to end this nightmare. I was given some pain medication and then he began. I remember him maneuvering the instrument through the vein and feeling like he was ramming bone. I almost fell off the table it was so painful. After several more attempts of this and scream and cries for him to stop, he stopped the procedure unsuccessful. He then stated we would do another 24 hour round of the thrombolysis and revisit the angioplasty if needed.
 
48 hour check – after 48 hours of not being able to move under threat of moving the catheter and more catastrophic bleeding. More bloodwork every three hours…..more nightmares….flashes of leaving my daughter without a mother. We checked the status and the clot still wasnt broken up. Too massive, the whole vein was blocked that carried blood back up to my heart. Second attempt at an angioplasty. More ramming and hitting nerves and bone to the point where I begged for them to stop and said I cannot handle the pain. Pain that made my 12 hour labor feel like a papercut in comparison. Every muscle in my body hurt and I was drenched and shaking in a cold sweat. I couldn’t do it.
 
I was wheeled into recovery prior to going back to ICU. I remember just breaking down sobbing. I felt defeated. The doctor came in shaking his head. I told him I couldn’t go through that again it was too painful. I asked through gasps and tears what would happen. He stated my right leg would always have swelling and wouldn’t go down. Blood flow would be poor. Pain would be worse long term than it would if he had been successful. I felt like I failed me family and myself.
 
I went through one more 24 hour thrombolysis, another day in the ICU. I later found out upon research how truly risky it was for me to go through 72 hours of this treatment. After the final round, I was anxious to get home to my daughter. My mother, sister and husband got me through my time there but I was ready to get out. The doctor yelled at me for not being able to put my right heel down when I walked and made that a requirement for me to meet prior to being discharged. My leg had not been used for over a week and was tightened up from the procedures. I pushed through pain I had only imagined, crying again to get through the task of walking to the end of the hallway with my heel down. My leg felt like it was being ripped apart but I did it so I could get out of that awful place and back home to my family.
 
The years to follow brought with it additional tests, procedures, etc..  to show that there is extensive permanent damage to my leg. The vein is all scar tissue with only calateral veins to assist with menial blood flow.  It was found that I have Factor V Leiden as well as MTHFR677t gene mutations, resulting in the need for life long anticoagulation therapy (I had smoked on birth control at the time of the clot, quit cold turkey the first day at the ER). I tried warfarin for the first year post dvt only to switch to eliquis after struggling to keep my INR in range. My right leg is still 3 inches larger than my left. I have constant pain, swelling, cramping, and spasm. The simple act of walking a flight of stairs causes burning and severe pain in my leg. I was diagnosed last year with post thrombotic syndrome and severe anxiety after the experience. I worry constantly about a recurrence.  Three years later and I am still learning,  recuperating, and trying to find my new normal. I returned to work full time a month after I returned home and I continue to work as an HR professional for a home care agency.
Some days are worse than others, some are better but all my days I am grateful to be here and to be given a second chance to be the best I can at this beautiful life I love. I am a mother, wife, sister, daughter. Equally as important, I am a Survivor.

Survivor Spotlight with Stephanie Ward

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My life changed forever on July 2, 1998. This day will forever be etched in my soul.  Looking back, most of that day and the days that followed were a complete blur. I lost my sister that day. She was previously healthy with her entire life ahead of her. Looking back now, Jenny saved my life and the life of many others in my family. Once Jenny passed away, doctors decided to run some tests on our family. Almost all of us tested positive for Protein S Deficiency. Some of them with a history of blood clots and some, like me, without.
In June of 2004 I gave birth to my first child, a son. Two months after having my son I felt like I had pulled a muscle in my shoulder. I went to the doctor and he thought it was from carrying my son, in his infant seat around with that arm. That day I went to work. I worked at a pharmacy when half way through my shift I bent down to get a drug and felt the most excruciating pain in my chest. I couldn’t take a deep breath, the pain would not stop. A trip to the ER proved that I had a blood clot in my lung. I was on Coumadin when I clotted. I spent days in the ICU not able to see my newborn son. I had an 8×10 picture of him on my bedside table. He is the one that kept me going. I HAD to be here to be his mother! Needless to say, I’m still here and able to advocate for those suffering from blood clotting disorders.
Since I had “failed” Coumadin, my only realistic option was Lovenox. I stayed on that for 4 years, twice daily….hoping and praying that I didn’t “fail” Lovenox as well. After being told my entire life that I would never be able to get pregnant, we were elated to find out that we were pregnant with our second child. What a true blessing! To be told I would NEVER have children to being pregnant with a second child was a miracle. My pregnancy was uneventful although I was high-risk and my husband was deployed to Iraq. Yes, he would miss the birth of his daughter and not meet her until she was 5 months old.
4 years ago my Hematologist recommended that I try Xarelto. After considering all of the information, I decided to take the leap. Things were great for a long time, then it hit me again. That feeling of pain, not being able to catch my breath. We drove to the emergency room. This time I had 14 blood clots in my left lung and 9 in my right lung. I had severely failed Xarelto or for lack of better words, Xarelto definitely failed me. It failed me in so many ways because I thought Xarelto was my “lifeline” to not have to inject twice daily for the rest of my life. Hello Lovenox, we meet again.
After 4 Hematologists, my most recent one really wanted me to give Pradaxa a try, so I am. I am currently still on Pradaxa, being careful not to miss a dose or be late with taking it. I have a beautiful son and daughter who are my life. I want to be around for them.
Knowing that Protein S Deficiency is hereditary, many people in my family have been tested and to date, we’ve lost count as to how many people have it. Previously, I had counted 32. Now, 33  My daughter, who is 8 was recently diagnosed with it and I find myself having to make the decision to start her on Lovenox at only 8 years old. Sometimes education is not always enough and despite the fact that I know she has it, my gut tells me that she needs to be on something because of other medical issues.
My story continues and will continue for the remainder of my life. Protein S Deficiency writes part of your story and you write the rest. The reason why my story does not end here is because I’ve seen too many people lost, limbs lost and lives changed. I refuse to let it rule the life of my 8 year old daughter. I lost a sister (when she was only 21) to it and I won’t lose anyone else. I quite often find myself questioning why God would have taken Jenny away from us. Now, I see it. Even in death, Jenny has saved the lives of so many of our family members just by handing the doctors and our family the information we all needed to be SURVIVORS!