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!

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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!