I like water. I like to drink it, swim in it, bathe with it, cook with it, wash clothes with it, live near it...you get the idea.
I do not like water when it is surrounding a heart, particularly my heart.
Because of my auto-immune disease of Rheumatoid Arthritis (RA), I had pericardial effusion, which means I had water surrounding my heart. As it turns out, I had lots of water surrounding my heart.
The first time I heard I had RA and pericardial effusion was in early 2000. At that time the effusion was mild. As the years passed I noticed more shortness of breath, fatigue and my heart having to work harder especially as I climbed stairs.
I had been under the care of a rheumatologist and cardiologist for several years. I told my cardiologist that I had been feeling different. He suggested I see a cardio-thoracic surgeon for a second opinion. He suggested Dr. Fariba Gharai.
(image from internet)
I did just that.
My first meeting with Dr. Gharai on May 5, 2016 was excellent. She was friendly and answered all of my questions. She wanted me to have a cat-scan with and without contrast and then see her the next week.
I did just that.
My second appointment with Dr. Gharai on May 16, 2016 was just as excellent as the first. She showed The Colonel and I my cat-scan. Even with my untrained eye I could see that my pericardial effusion was quite large...no wonder I was feeling like shit I did.
(image from internet)
After viewing the cat-scan, we went to the examining room to discuss my options. I could have surgery or just wait until I became very symptomatic and then have to have emergency surgery. I opted for surgery as soon as possible.
"How about tomorrow?"
"Uh, can I have at least one more day to get things ready at home?"
"Okay, pre-op procedures tomorrow and surgery on Wednesday morning."
"Okay."
The Colonel and I got things around the house done and all of my pre-op procedures went smoothly the next day. We even got to take a private tour of the Heart Tower where I would be cared for post-op. The tour helped me to have less anxiety about the upcoming heart surgery.
Surgery day (May 18, 2016) was upon me. I had fasted since 7:00 p.m. that evening before but was nowhere near hungry, thirsty yes, hungry no.
The Colonel and I arrived at the Heart Tower at 5:00 a.m. I was taken to my private room and was asked to shower with the special antibacterial soap again as I did the night before in my own home. Then the morning nurse came in with clippers in hand and asked me to expose my bathing suit area so that she could do a bit of "landscaping". This was in case the surgeon had to perform a heart catheterization while I was on the operating table. Sure, why not, I was not shy, she was a nurse and I had given birth to two children, modesty never entered the picture.
Doctor Gharai made an incision between my breasts (closer to my left breast) to gain access to my heart's pericardium (the sack surrounding my heart). She also inserted a chest tube near my sternum. The chest tube would continue to drain the water from my pericardium (It was removed before I left the hospital). I was hospitalized for about 4 days.
I had a happy heart until on July 9, 2016 I was experiencing chest pain and difficulty breathing. The Colonel took me to the ER. A cat-scan showed another large pericardial effusion but this time behind my heart. An ambulance transferred me to the Heart Tower. They were surprised to see me again so soon. Dr. Gharai was very surprised to see me again. On July 11, 2016 my second pericardial window surgery was performed. This time my surgeon made an incision under my left breast and the chest tube was inserted on my left side (Again, it was removed before I left the hospital). I was in the hospital for another four days or so.
I once again had a happy heart until on July 21, 2016 (just ten days after my second pericardial window surgery) I was back in the ER with chest pain and difficulty breathing again. This time it was not my heart with an effusion...it was my left lung. It appears that the pericardial windows were doing a good job of draining the water from around my heart but now fluid was collecting at the base of my left lung.
(image from internet)
I was admitted into the hospital again and the next day, July 22, 2016 (Yam's 25th birthday) I underwent a procedure called a thoracentesis. That is when a needle is inserted into your back to gain access to the lung and then the fluid is drained away.
(image from internet)
Yes, it is painful. When the needle touches the pleura (the membrane surrounding the lungs) it feels like a lightening bolt is shooting through your body, from the base of your lung and right out through your shoulder. The nurse asked if I wanted to squeeze her hand. I said no, I would squeeze my hands together. I was afraid I would hurt her if I had a hold of her hand. At one time the doctor who was performing the thoracentesis asked if I wanted him to stop...heck no, let's just get this over with.
They drained a huge jug of fluid from my lung (cannot remember the exact amount but the jug reminded me of an Ernest and Julio Gallo wine jug/bottle). The fluid was a pretty burgundy color.
I was in the hospital again for a couple of days. During my stay I had a plethora of doctors parade into my room. I had doctors who specialized in cancer, infectious disease, lungs as well as autoimmune disorders. They wanted to discover why my body was producing the fluid. I told each one that I believed that my RA was the cause for all the fluid production and issues. I had all kinds of tests. My blood was being drawn every couple of hours (finding a good vein in me is a feat in itself). Finally, after all kinds of tests (and post hospitalization appointments with said doctors) they all agreed my fluid production was due to my RA.
My RA doctor put me on a drug to help mitigate fluid production. It was doing the job but it was also making my hair fall out by the handfuls. The drug was a cancer drug created around 1940. My RA doctor then switched me to a "cousin" of the drug. Better, little hair loss with this one. He said this could also curtail my appetite...I am still waiting for that side effect to manifest.
It has been nearly five months now since I have been on the new medication and all seems to be working well. I have not had any recurrence of pericardial or pleural effusions. I would like to keep it that way and maintain a happy heart and happy lungs.
Note: Between my pericardial window surgeries I flew back to Indiana as my mother had passed away on June 13, 2016.
You had a hell of a 2016. I am impressed that you've kept it all straight. I'm ever thankful that you, my dear friend, are well!
ReplyDeletekim
You are a strong woman indeed, dear sister! Jenn
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