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.
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You had a terrible experience! Keep in mind, autoimmune diseases, including RA, start in the gut. Look at how you can cure yourself by changing your diet and getting rid of heavy metals. There is no need for pharmaceuticals for chronic diseases. Look at natural ways to heal. Consider nattokinese instead of drugs to thin your blood. (Dr. Stephen Sinatra).
Betsy *sigh* this has not yet been proven. No amount of changing your diet is going to stop the damage from RA. It will help you feel better to lose weight and eat right, but will not stop the disease.
My sister has a masters degree in nursing and was a nurse for years. Once you have been taught in the pharmaceutical mode, it’s hard to look elsewhere. Read what anti-aging MD’s have discovered to cure autoimmune diseases. I had a friend who had MS, another autoimmune disease, and was in a wheel chair. She went to see an anti-aging doctor, and he prescribed a change in diet and perhaps methylated B vitamins. She has been symptom free for years. Ozone therapy also cures RA. If you are looking for double blind studies to prove that these alternative treatments work, you won’t find them. Scientific studies are very expensive, and the pharmaceuticals are the only ones that can conduct them. They make a huge profit on their patented drugs. What is found in nature cannot be patented. If you want to get well without all the side from drug effects learn about what causes autoimmune diseases. There is a ton of information out there if you look in the right places. No one ever had a shortage of patented chemicals in their body. Learn about how the pharmaceutical industry started in the late 1800’s. Be open to other ideas. Get well. Study what Nattokinese does for blood clots. I have been on natto, (fermented soy,) for several years. No side effects. No DVT. No PE. Good luck.
I also have RA and had a PE when I was 25 ( I am now 50). I then had a clot in my portal vein which could have shut down my organs when I was 41. I was told 12 years ago THAT my blood tests were positive for RA but had no symptoms until last year and it hit me hard. I was bedbound for 7 weeks. I still can’t do much yet, but just getting into Humira so hopefully in time. Bad thing about RA & clotting problems is that you can’t take anti-inflammatory meds. I take warfarin to prevent clotting. I just deal & always keep in mind. Many people have worse problems. Just happy to be here.
Hi Daisy, I was just re-reading the comments to my story. I hope you are doing better! How is Humira working for you? I started with Humira years ago, but found that Enbrel worked the best for me, but just as the labels warn, can cause illness! I started Orencia after my clots and after 6 months of agony, stopped it and am now on Actemra which is working great! I’m FINALLY feeling so much better! My joints don’t constantly ache and I’m able to move more freely and trying to increase my activity. However, I still have some SOB at times, especially with heavy/humid summer days. I know I’m going to be reliving everything that happened last year as I come up to my one year anniversary, but we’re here for a reason! I still take life one day at a time and continue to make goals to get back to where I used to be! Keep smiling! It could have been so much worse!
Hi Ruth, thanks for the reply. I am switching from Humira to Enbrel in 2 weeks. The Enbrel caused your clots? I am on warfarin forever now so I get my INR checked often. What other illness’s if any have you experienced from the Enbrel? I have only been on the Humira since January 2017 but it is not working as well as we would have hoped. I did get 2 epidurals in my back almost 2 weeks ago and have felt better all over, than I have in over a year. Remission? That would be great but I’m not sure yet. Fingers crossed & Smiling!
Thanks so much for sharing your story Ruth. Mine is much like your also. I’m 3 months from my PE date and exhausted everyday. I went back to work but it’s all I can do somedays. When I get home I’m done. I had a 4 cm clot in my jugular vein and multiple in my lungs as well. I tried to take eliquis and my clot doubled in size after a week. I am taking a big dose of warfarin and it makes me feel so bad. I will agree definitely about the healing process being very emotional. I’ve been a train wreck. God has a reason for us and we are blessed.
Hi Mekeshia! I’ve been re-reading the comments to my story. I hope you are doing better, your strength is increasing and the emotions manageable! I’m doing better now that we found an RA med that is working and I don’t hurt every day. The emotional healing continues! I’m coming up to my one year anniversary and I know I’ll be reliving everything. But I am thankful as things could have turned out so much worse! We’re taking life one day at a time and continuing to smile! Yes! God has a reason for us and we are blessed!
Hi Mekeshia! I hope you are doing better, your strength is increasing and the emotions manageable! I’m doing better now that we found an RA med that is working and I don’t hurt every day. The emotional healing continues! I’m coming up to my one year anniversary and I know I’ll be reliving everything. But I am thankful as things could have turned out so much worse! We’re taking life one day at a time and continuing to smile! Yes! God has a reason for us and we are blessed!
I just got out of the hospital with a blood clot in each lung and a dvt blood clot. I luckily did not come out with oxygen. I never had to take a pain n med in the hospital(REALLY high pain tolerance) They had me attached to a heparin drip for around 3 days and then switched me to Xarelto. I feel ok except mild pain in my chest area. They said it stressed my heart, but they saw no damage. Going back to work on the 5th, so we will see how I do. I work retail. Should be fun!
Oops forgot to add RA uncontrolled by Orencia and just found out that Orencia can cause these blood clots in the first 6months of use. Welp that is me in my first 6months of use!! Just fired my Rheumy for ignoring my RA and focusing just on my weight. She wants me in Xeljanz,but everyone I’ve known who has taken it has developed bad cholesterol. Not sure I want to start that …. going to new Rheumy next month. I’ll ask her then.
She didn’t try Humira 1st?
I had clotting problem before being diagnosed with RA & my Dr put me on Methotrexate, then added Humira when it was evident that methotrexate was not enough.