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: Julie Cinders Hewitt

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The only illness or condition I have ever really had in my life was eczema. I did not realize bigger things were around the corner for me.

I had my DVT nearly 7 years ago. Just before New Years Day, I had the most horrendous pain and cramps in my leg.  It radiated down to my heel. Instead of paying attention to my pain and cramps, I carried on until January 2nd.  I then went to the doctor who sent me straight to the hospital where I was diagnosed with a DVT.  I was sent home with Fragmin injections and Warfarin. I was to take them for 6 weeks. I was never educated or told about DVT’s so I had no real concerns. 

On February 21st,  I was told I was highly unlikely to have anymore clots. I was never educated or told about PE’s at this time either.

Four weeks later,on March 22nd, I had a bad backache.  I went to my doctor who told me to take Ibuprofen and rest. It seemed to get worse. 

On March 24th, I went for a meal.  On my way home, after walking 15 meters, I couldn’t breathe. I couldn’t walk and my legs felt like lead. An ambulance was called and I was taken to A & E (UK Emergency room) where I was waiting for a doctor. I was sent for an x-ray but all the porters were busy so off I walked. I ended up clinging to a post, crying, as I felt so ill. Breathing and moving were so hard. I was moved to a ward where I was given my results of multiple bilateral pulmonary embolisms. I was told that I was being moved to ICU.  They did not have a bed for me there.  I was very sick and they didn’t want to send me to another hospital. At that point, I still didn’t know how lucky I was. I was wired up to machines and a nurse sat with me all night. The following day, a doctor told me I was lucky to be alive. I was sent for scans and heart scans. I spent 2 weeks in the hospital on Fragmin and Warfarin. I struggled to keep my INR in range without the Fragmin and was later changed to Apixaban. 

I had no symptoms really. On the same night I was admitted, a young pregnant lady came in with the same as me.  Sadly, they didn’t make it. I had bouts of guilt as to why I should have survived when two lives were taken. Thats when I realized how serious blood clots are. My anticoagulant nurse was no help at all.  I was told to not eat any vegetables, etc. I sat crying and all she said was here’s your appointment for tomorrow.

I found your group on facebook and a UK one too.  It’s the members who helped me on my journey.  Without you, I would be a bit of a mess. Silent killer is the right name for it for sure .

Here’s a BIG THANK YOU to you for all the help you have given me. It has been amazing xx

Survivor Spotlight: Amanda Nicholson

On November 2018, I was 31 weeks pregnant. I have had hypertension for a decade and was warned by my midwife that I was at high risk of developing preeclampsia but this was my second pregnancy so I wasn’t too concerned. I had a normal delivery without any complications with my first child.

On the morning of Monday, November 19th, I went to a routine midwife appointment which showed my blood pressure was very high. My midwife suggested I go to hospital. I arrived at the prenatal clinic and my blood pressure had risen further; I was starting to feel very ill. My body started to fit and the decision was made to be transferred by ambulance to another local hospital which could better support having a preterm baby in the event that he needed to be delivered early. The next couple of days I was monitored and given blood pressure medication around the clock.

On Wednesday, November 21st, I was informed that I had developed preeclampsia and my baby had stopped growing as my placenta was failing. The only option was to have an emergency caesarean section which was performed later that day bringing our healthy son, Theodore, weighing 3lb 4oz into the world.

By the end of the week, I had made a full recovery and with Theodore cared for in the Special Care Baby Unit (SCBU) I was discharged from hospital.

A week later, I started to get searing pain across my abdomen which I put down to the after effects of the caesarean section.  Within a day, the pain was so unbearable I could hardly move and couldn’t sleep. The pain had also started to radiate down to my legs. I went to A&E thinking it may be a kidney infection. When I reached the hospital to book myself in, I was in so much pain I could hardly say my name. Bloods were taken and I was told I would need to stay overnight whilst they investigated what was happening to me. The pain continued to increase and overnight my right leg completely swelled and turned purple. The doctor told me this looked like a blood clot and took some bloods to do a D-dimer test which came back positive for Deep Vein Thrombosis (DVT).

The following morning, I was given an ultrasound on my right leg which showed a clot which started in my calf and went up my thigh. A further CT scan showed that the clot had continued to travel and was in my main vein the vena cava stopping just before my lungs. I was visited by various specialists.  Each specialist told me that due to the extent of the clot it would almost certainly travel to my lungs or heart and that they would do all they can for me. I couldn’t quite comprehend the gravity of the situation and was in so much pain I think I blocked out the severity of what was happening to me. I had already had a traumatic ordeal developing preeclampsia and having to deliver our son early, only to be told that my life was still in danger.

I spent 11 days in hospital in the worst pain I have ever experienced. By this point both my legs had swollen due to the restriction of the blood flow and my liver and kidneys were showing signs of distress as the clot was blocking the blood flow to them. I could barely stand up let alone walk. I had to get around the hospital including visiting my baby in SCBU by wheelchair.

After discharge, I was at home for eight days but the pain and swelling increased in my legs rendering me completely immobile.  I was taken back to hospital by ambulance. This time I had a new consultant who fortunately had a vast knowledge of thrombosis. A CT scan was repeated and showed no change in the size of the clot. The rivaroxaban was not working for me. I was put back on the enoxaparin injections, my legs were also wrapped in compression bandages and I was still wheelchair bound.

I felt completely helpless, it was three days before Christmas and I knew I wouldn’t be spending it at home with my family, the thought of which was unbearable. I pushed through the intense pain I was in. I was determined I wasn’t going to die in this hospital bed at the age of 30 when I have a husband, a six year old and a new-born baby (who was thriving in SCBU). I set myself a goal to learn to walk again and take an extra step each day.

I spent 12 days in hospital this time, missing Christmas and New Years. There was a glimmer of hope starting to emerge, my blood work slowly started to show progress. My kidneys and liver were no longer blocked. My D-Dimer reading was going down showing the clot was starting to dissolve. The swelling in my legs subsided enough that the pain decreased and I was able to be more active. I was able to achieve my goal of being able to walk along the hospital corridor unaided.

After further blood tests,  I was discharged with compression stockings and a daily dose of enoxaparin which I needed to self-inject.

This was six months ago and whilst I am still at the early stages of my DVT journey, I have made a vast improvement. My legs still occasionally swell but I can walk unaided. I no longer take painkillers and my blood works are improving with each consultation. My consultant calls me his ‘walking miracle’ as neither he or the other consultants can believe that the clot did not travel to my heart or lungs.

I have seen a hematologist who tested my blood for clotting disorders, these came back negative showing that my clot was provoked by a combination of pregnancy, preeclampsia and my caesarean.

I continue to take daily enoxaparin injections and wear my compression stockings.  I am hopeful that the clot will have dissolved enough to continue a normal life, though if it has not then surgery may be an option. I know that there are still challenges along the way but regardless of the physical and emotional impact of blood clots I feel lucky enough to say I am a survivor with a healthy four month old baby. I am grateful for every day that I am alive and can’t stress enough that if you have any symptoms of a blood clot to please go and get checked out.  Catching a clot before it travels could save your life.

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Survivor Spotlight with Tina Cuva

My name is Tina Cuva. I am 51 years old and I live in NJ. I am a wife and mother of 2 who is very lucky to say, “I am a survivor”. I never knew anyone who experienced DVT’s or PE’s and there is no family history, so when I was diagnosed, I had no idea the impact it would have on my life.

On January 3, 2017 I had a total hip replacement. I followed all of my doctor’s instructions precisely, trying to make sure my healing would be perfect. I was cleared for surgery and as mentioned, with no family history of blood clots, I was sent home with a regimen of 650mg of aspirin a day. I started physical therapy in the hospital and then upon returning home my Bayada Physical Therapist starting coming 3 days a week for an hour. My therapist, Jeff, gave me my instructions to continue exercising throughout each day and to walk every hour for at least 10-20 minutes.

On January 23rd, I had just finished a short 10-minute walk around the house and sat down on the couch. As I settled back down to rest, I found myself short of breath. I brushed it off at first thinking I am out of shape and maybe did a bit too much walking but 15 minutes later I still found it hard to breathe. My husband came into the den and said, “you probably did too much today, take a deep breath”. He has been an athlete and a coach the majority of his life so I did as he said but still I wasn’t any better. Luckily Jeff was scheduled that day and when he came in he immediately noticed my breathing and jumped into action. A local Bayada nurse was also called in and within 15 minutes after she arrived, an ambulance was at my door. I was told by Jeff, my nurse and the EMT’s that I possibly had a DVT or a PE… a what? What are you talking about? I had no symptoms prior to the onset shortness of breath. No swelling, redness, leg pain, leg cramps, NOTHING.

Upon arriving at the hospital, the ER team quickly took my blood and off to a CT Scan I went. My adrenaline had kicked in so my breathing felt a bit better and I was telling everyone “I am fine”. I was still restricted on my movement with my new hip, so I had asked the nurse to help me as I needed to use the restroom. As the nurse was about to accommodate my request, out of the corner of my eye I see the ER doctor running towards my room, shouting, “MRS. CUVA DO NOT MOVE”. The next words out of his mouth made my head spin and I literally watched my husband slide down the wall…. “Mrs. Cuva you have over 20 blood clots that are hanging on the tops off both of your lungs, please do not move”. Scared, petrified, and overwhelmed barely cover how I emotionally felt. Knowing that if Jeff was not scheduled that day, I probably would not be here to tell my story.

The next three days in the hospital I tried my best to stay positive but the thoughts, for which I’m sure you all feel, kept creeping up: What if I move and a clot comes off and travels to my brain? Am I going to die? How did this happen to me? My hand constantly holding the button in case I needed the nurse and I was scared to be left alone.

They found the DVT in my femoral vein in my thigh. My team of doctors continually met with me and discussed my options of medical treatment to move forward. After leaving the hospital, I was put on 20 mg of Xarelto daily until May.

Testing was done and showed clots and DVT were gone. Now I’m on a daily dose of 325 mg of aspirin and an inhaler for the rest of my life. If I travel (plane, train or long car ride), I will be given Xarelto again for the duration of my trip and then back onto aspirin 2 days after I return home. The 20 tubes of my blood that were sent to the Mayo Clinic and showed no markers or indicators as to why this happened to me.

I would be lying if I said I live a life without blood clots lingering in the back of my mind whenever a bruise swells, I have a dry cough or even if I am short of breath if only for a minute or two but it is getting better. I am thankful for this group and the continual support I receive whether I am having a good day or a day filled with anxiety. Each day I become stronger knowing what happened to me does not define me. It is a gift that I am able to share with others. I am alive and one very lucky woman. I constantly tell my story in hopes that it can save someone given they are in the same situation or have the awareness to help someone else. I will forever be grateful for my Physical Therapist, Nurse and local Emergency Response Team for saving my life.

Thank you for letting me share my experience with all of you.

In gratitude,

Tina

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 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 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 Leslie Ponciano

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Like most young ladies, I was just spending my life working and trying to figure out my life. I was battling pain in my hips, lower back and knees.

Now. Just to give a little background , I was born with a congenital dislocation of my hip. So pain isn’t a new thing for me. When it started to get worse on my left hip and thigh I didn’t think anything of it. I was seeing an orthopedic doctor for this issue and he had this idea that I sshould see an arthritis doctor. Maybe seeing this doctor would pinpoint all of my issues and get a handle on it. During this time , I was having issues with my coworker due to being in pain. I know most of you will understand me when I say unless you have pain on a daily basis you don’t know what it’s like. The woman I worked with had no idea and so this pushed me to quit my job. I couldn’t take care of myself and deal with all of my pain and stress. I depended on my insurance from my job but thank goodness I have a great support system.

Now, let’s talk about the arthritis doctor. I noticed my legs were starting to swell a lot when I walked which never really happened before. I didn’t worry about it because I had an appointment with my arthritis doctor coming up soon.
I went to see him on November 18th, 2014. He ran all kinds of blood tests. He took my history which was long.(Reading the clinical notes from his visit… I can see why he didn’t catch what was happening in my body. He thought I was only in it for pain meds.) I got a call from his office the next day, they told me I had inflammatory arthritis and to set another appointment. The next day , I woke up in terrible pain. Mainly in my left thigh and hip. Since it was my “troubled” hip, I didn’t think too much of it. I took some Advil and laid back down with a heating pad.
Later on I got my “lazy” behind up and decided to take a shower. While in the shower I started to feel dizzy. I thought maybe the water was too hot so I cooled it down hurried up and got out. I went to lay down again. When I started to feel better I got myself a little something to eat. As soon as I did, I got really nauseous and barely made it to the bathroom. When I was done, I noticed it was getting harder to breathe. I looked down at my leg and my thigh was swollen and purple. Like really swollen. I needed help and fast. I called my best friend and had her drive me to the ER. They asked me if I was on birth control. I said I was and then they asked to see my leg. They pulled a vile of blood and had me show them my leg. As soon as they saw my leg they rushed me back. Before I knew it I was having a CT scan of my chest with dye then a Doppler of my thigh. That was the most painful thing I have ever experienced and I’ve had a hip replacement! Within minutes my mom arrived and then the doctor told us the news. As soon I got nauseous a part of the clot had broken off and headed straight for my right lung(That’s why I had trouble breathing). I had a pulmonary embolus which started from a blood clot in my left groin. All the pain I had been experiencing for months and swelling was caused by this blood clot. They told me it was caused by my birth control. I then asked them if this could have been caught with bloodwork. I had had all kinds of blood work done 2 days before. They said “yes”. I was floored. This could have been caught before a PE. Unbelievable! I was started on Warfarin in the ER and then moved upstairs. I was admitted to the hospital. Plans I had with my stepdad to see Mockingjay Part 1 were cancelled. While in the hospital they tried to pump some potassium into my body through IV. It felt like my body was pumping acid through my bloodstream. I wasn’t reacting to the medicine like I should have been. So this was a challenge. They tried other meds on me. Finally, they tried me on Xarelto and just gave me other things through IV. I had all kinds of genetic tests to make sure I didn’t have anything that could cause this again. Thank goodness I don’t. I was one of the few this happens to. I took Xarelto for a year then transitioned to Eliquis for 6 more months. Then my hematologist thought I would be ok. So I’ve been on a baby aspirin a day since. I haven’t taken birth control since or Advil/ibuprofen. I still have some shortness of breath but I’ve been told sometimes it just sticks. I have no long term damages and have been released from all of my blood clot team of doctors. It will be 3 years on November 20, 2017. I’m so happy I’m still here and lucky to be able to spread awareness.