Patient Story: A Double Whammy by Ruth

This patient story “A Double Whammy” was written by Ruth Work for the Blood Clot Recovery Network Blog.

I am a 51-year-old clinic nurse with rheumatoid arthritis (RA). I’m on those nasty meds that keep me moving, but they also make me immune suppressed. At the beginning of August 2016, I was feeling run down, and I thought it was my allergies acting up. I took my RA meds on a Friday night, and I woke up the next morning feeling like I’d been hit with a mac truck, like you do when you have influenza. I went to urgent care, and I was diagnosed with a sinus infection and sent home with an antibiotic. The next morning, I woke up feeling worse, my fever had gone up and the lymph nodes in my neck had blossomed. I called the Urgent Care with this update and was instructed to go to the ER.

After three hours in the ER, I was admitted with pan-sinusitis (all sinus cavities infected) that had gone septic. The next day, I had a CT scan of my neck, which showed one of the lymph nodes suspicious for malignancy. The next day, I had more scans looking for other malignancies. On day three, I had surgery to remove the suspicious lymph node. I finally got to go home on day four to await pathology results.

During this hospitalization, the doctors did everything right. I was on birth control pills for menopausal symptoms, and they took my pills away. I received Lovenox injections, wore the Jobst compression stockings, and had the pressure booties following surgery. They were being proactive which I thought was overkill at the time. The surgeon called me the next day and told me the local pathologist was leaning towards a lymphoma diagnosis but to confirm, they were sending my specimen on for further review.  In the meantime, I was instructed to make an appointment with the oncologist so we could get things rolling after the final pathology report came back. I saw the oncologist on August 12, 2016, and I was told I did not have lymphoma! What a blessing! But, four days later, I was huffing and puffing just trying to make my bed.

I called my primary doctor who instructed me to go to the ER to check things out. That day, August 16, 2016, my life changed so drastically! A positive D-Dimer and CT revealed extensive bilateral PEs. I was admitted again, started on Lovenox shots again then started oral Eliquis. I was sent home and told to do nothing. I was terrified! I was afraid to even sneeze for fear I may throw a clot and die. As many others have commented, even getting up to use the restroom was a major feat. As a nurse, I was familiar with DVT and Pes, but I was not aware at how long a recovery it can be. It has been a very slow go for me. I no longer make plans, I make goals. Some days I make my goals, some days I don’t. Little things like walking to the mailbox was a huge accomplishment. I returned to work on a very limited basis last September. My doctor was very protective, which I greatly appreciated. Unfortunately, I was not able to increase my hours to my normal work schedule in November. I was so fatigued, continued to be short of breath, and heart palpitation had also set in. Since I wasn’t getting better fast enough, I was placed on a ‘layoff’ status since I was not at this job a year yet, and I was not protected by Family Medical Leave Act (FMLA). I was put on ‘layoff’ for 90 days, and if I was not placed in another position by the end of 90 days, my employment would ‘conclude.’

I just can’t believe everything that has happened these past few months! It was the perfect storm, how one issue led to another issue. Due to the sepsis, I had to go off my RA meds so my RA symptoms returned. Due to the blood thinner, I can’t take any anti-inflammatories. I have recently been able to start a different RA med, which is not helping. I’m trying to be patient and give it time to work, but I’m feeling very down lately. I’m sure it’s a combination of the slow PE recovery and the RA symptoms, a double whammy. I’m not able to do the things I used to, don’t have interest in many of the things I used to, and with anything that takes a lot of energy, count me out. It saddens me to lose my nursing job, but I understand why. How can I take care of my patients when I can barely take care of myself? I feel like I’ve let my co-workers down, and I’ve let my family down. Six months later and there are so many things I just can’t do. I guess I’m not a very patient person, but am trying to be. I’m usually a go getter and this has shaken me to my core.

I’ve learned that PE recovery isn’t just a physically recovery, but an emotional recovery, which I was not expecting. Through it all, I continue to make goals and I keep trying. My husband and I love to travel and being told I couldn’t travel for six months after my PEs has been so hard, especially with most of our family being out of state.

To celebrate making it to my six-month anniversary, we flew to see our kids. I was so scared, but determined. I knew what I needed to do, what not to do, what to watch for, but I was still scared. What if I got sick again? I am happy to share, our short flight to and from our kids and grandkids went great! I was really nervous before we left because I had bronchitis the three weeks prior to our trip. I kept thinking I was going to be fine by the time we left, but I can tell my lungs have changed. The day of our flight, I went to the doctor, the pharmacy, and then the airport.  With an antibiotic, steroid and inhaler on board, I made it. We had such a great time! I had the same nap time and bedtime as our grand-daughters, but that was okay. What a blessing to be with family again.

I went off my Eliquis after we returned home, and I have noticed I feel better since going off it. I seem to feel less fatigued. I had my genetic testing labs drawn last week, and I see my hematologist tomorrow to review the results. Due to my latest illness, I had to go off my RA meds again, and I am starting a new injection tomorrow. We will see if this one is more beneficial. Will see what happens next. I am taking it one day at a time!

My journey continues, but I am here for a reason. God has a plan for me and I will continue to take life one day at a time. I’m hoping to look back at this all a year from now and realize how far I’ve come, but right now, it’s still hard.


Reader Writes In: Has anyone else dealt with PE’s and RA? Share in the comments.


Editor’s Note: Thank you, Ruth, for sharing your story with BCRN. Connect with Ruth, or share your thoughts, in the comments below.


Read more Patient Stories from BCRN. Visit How to Share Your Story to share your story with Blood Clot Recovery Network.

A Survivor Speaks: A Remarkable Recovery

I wished to share my PE experience which is now 3 months out. Back in May, I just came back from a successful but exhausting trip in Calgary to my Montreal home. I decided to extend the long weekend by taking Friday off when I woke up with a strange and out of place feeling in my right breast. It felt like a little inner poke or a little lump. It did not feel cardiac, more muscular, but still out of place. I found it strange as I only did cardio workouts for the last few days and did no lift any weights or performed push-ups. Since it was on my rights side, there was no immediate panic and I simply tried to rub it out over and over again. I even called one of my staff and joked about this sudden chest discomfort brushing it off as nothing.

I went downstairs, my wife was on the twins case about homework and getting their project done – being a traveling father and now dealing with this lump, I really did not want to get into it and kept rubbing by chest as the discomfort grew. At this point it was not painful but did not feel natural. We all have aches and pains and in most cases they go away – or so I was hoping.

The uneasiness grew, I did not want to scare my wife and kids and discreetly started to look up heart attack symptoms on my iPad, took 2 baby aspirins -and even some Tums. Even though it was on my right side, it was in my chest area. I had no typical symptoms except for this persistent lump that I kept rubbing. So I figured I had to “walk it off” and went to do errands with my head slightly getting overloaded with anxiety.

I came home and kept holding my chest. It was not really painful, just out of place. I figured I might as well get it checked out as it was not going away. Somehow this hit my little boy and he began to cry and fear for his Dad. I decided to drive myself to the Lakeshore General hospital in the West Island of Montreal.

Now Lakeshore is not the biggest hospital in Montreal and does not have the reputation carried by the Montreal General, Royal Vic or the Montreal Jewish hospital. It’s close by and convenient. I figured and “hoped” that if I did have a cardiac event, they would know what to do and, if need be, stabilize me and ship me out. But a hospital is a hospital and I just lauded spending possibly hours in ER triage and waiting room. I mean I looked really healthy otherwise so who knew what the wait would be, I packed up my iPod , iPad, chargers and portable Wi-Fi. I was set for the next several hours.

As I left home, my wife said, “Tell them you have chest pains and high cholesterol.”  Okay, I guess, anything to get through this faster so I can back home.

“Yes sir,” said the ER nurse. “Hum, I have high cholesterol and chest pains,” I replied

She barraged me with the typical questions and asked me the pain level from 1 to 10. Something I did not expect, at this point there was no DVT pain or anything except for this lump.

“About 3, but if I move this way or breathe hard it can go up to a 6 maybe,” I replied and went to sit down because I was getting light-headed with stress and hunger.

The wait was not that long after all; I guess being middle aged and complaining about chest pains gets some attention. The same questions kept coming back: “Why are you here? Where does it hurt? Do you feel nauseous?” And the dreaded, “What’s your pain level from 1 to 10?”

They gave me an EKG that was rather funky but not definitive. Blood work, several hours apart, was in order to see if the ticker got damaged and the gurney took me from triage to the bowels of the ER. A young Doctor who comes from the same country as my parents and with the seriousness of seeing one too many hypochondriacs asked me again to quantify the level of pain I had, if I had shortness of breath etc… Frankly at this point, I thought I was wasting everyone’s time including my own.

“Look,” I said, ” I’m in solid shape” which I am. “I was in Calgary where I did 3 solid cardio workouts in 3 days, doing 50 minutes on the elliptical followed by climbing 20 flights of stairs – no issues, no pain all good. My last night in Calgary was brutal as the fire alarm went off at 1:30 a.m.,  and I had an early morning meeting before coming back East that day. I was wiped by the time I got home. It’s probably just muscular, plus fatigue etc.”

The young Doctor kept saying, “We will just make sure.”  And for the next few hours, he kept checking up on me, asking if the pain was the same, and it was. The answers never deviated, but I wondered if I just needed to pack it up believing, that I was taking someone else’s bed that needed real attention. He kept coming back and then asked in a Dr House manner, “You said you travel, right?”

“Huh huh” I replied. “Let me check just one more thing.” He then proceeded to have me do a chest x-ray and CT Scan. All I could think was “Wow,this is Canada, not bad.” I was not keen on having this liquid in my veins, for the CT scan, but I’m here, let’s get everything checked. I did not think much about it. The young Doc came back at 11:00 p.m. to interrupt my Candy Crush game. “I’m glad I did the test,” he said, “You have blood clots in your right lung.”

I was to be kept overnight, monitored and told I would have to to take anti-coagulants and blood thinners. In the morning, I would see a hematologist. I asked if I could be out of the hospital by 1:00 p.m. as the puck was dropping at that time for the hockey playoffs. I had priorities obviously.

I was nevertheless stunned. I knew it was serious, but realized only when I started doing internet searches on the severity of the matter. The young doctor’s gut feeling to do this scan probably saved my life and/or avoided further internal trauma and damage to my lungs or worse. Spending a night in the ER is quite something, but the staff made me feel comfortable, even fetching me a sandwich when I was starving late in the evening.

I was quite happy to go home. Say what you want about the Canadian Medicare system, but it works. I had no papers, insurance or others to sign and all that it cost me was $13.50 for parking. I now continue to see a no-nonsense hematologist at the hospital and am proceeding strongly. I have recovered well, and after reading the challenges of so many, I feel fortunate. I was back doing long walks and working out. I did suffer a setback due to a severe summer cold causing extreme fatigue, but finally recovered from that and am back full swing. I continue to take Coumadin and am stable with little bleeding incidents. I will likely do so for a long time, if not life.

My PE was “unprovoked” and since treatments work and don’t affect my day to day life and sport activities, the Hematologist believes I should stay on. Overall, the hospital was great and accessible but I again attribute my recovery to this young ER doctor and his common sense gut feeling. While serious in his duties, I remember seeing him smile when I said, ” You know that Milan Lucic, the hockey player from Boston and nemesis of anything Montreal, he is one of us.”

Since I left, I joined Blood Clot Recovery Network on Facebook or BCRN. Sara, the founder, has been my rock, helping me understand what was happening to me, to my body, and what was I going through in the healing process. For this I’m grateful to Sara and her commitment. My awareness regarding thrombosis is at a heightened level, and I feel lucky to be able to share my story and while fortunate appreciate the struggles that so many who are afflicted by a blood disorder go through.

*Editor’s Note:  Thank you, Yves, for sharing your story with BCRN! Connect with Yves in the comments below or in the BCRN Facebook Discussion Group.

 

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