Heart Biopsy and Catheterization

Lupus attacked my heart last summer.*  I was suffering from chest pain, fluttering heart beat, and shortness of breath.  A chest X-ray showed fluid in the lining of my heart and my steroid dosage was increased.  Unfortunately, this was the beginning of what was to be a major flare, resulting in hospitalization and chemotherapy for this, and other symptoms.  After nearly a year, I was still suffering from symptoms related my heart and my rheumy referred me to a cardiologist, Dr. S, who suspected that I might have myocarditis and other heart issues.  To be sure, she recommended that I have a heart biopsy and catheterization.  I was scared to undergo an invasive procedure and was unsure if my body could withstand it.  I insisted on more blood tests and more echocardiogram, but my rheumy put it to me straight  explaining that I needed to do this, because if I do have these heart problems and we don't treat it, I can die in 2-4 years.  OK.  I scheduled it right away.

Leading up to my appointment with the catheterization lab, I was anxious and stressed.  I have never had this done before and the fear of the unknown was great.  When I made the appointment, I was reassured that everything would be explained to me before I started.  This did not happen. I am always amazed at how much self-educating a patient has to do.

I went in for the procedure last Friday.  My appointment was set for 11:45 AM.  I was told not to have anything to eat or drink starting at 7 AM.  I got up at 6 AM, had a little snack and relied on mint/ice cubes for the rest of the time.  Once I got there, I was kept waiting for about an hour.  Since I am still going through a major flare and still very sick, I asked if I had a bed to lie down on while I waited.  At that point, they were ready to admit me to the prep room.  I don't know if other cities are like this but NYC hospitals are like NYC restaurants, you have to keep asking the Maitre D' if your table is ready.

Jim dropped me off in the prep room where a number of nurses took over.  I changed into my hospital gown and laid down.  The nurses put me on an IV, strapped on the blood pressure monitor, and the heart monitor.  One nurse came over to shave me in the groin area where they were going to insert the tubes -- no need -- Lupus/chemo and steroids all ensured that such measure is not necessary, loss of hair was not limited to my head.

I waited another hour or so.  At this point, I was crying from the nausea, dizziness and general Lupus pains.  It was past 2 PM and still no news of my going in for the procedure.  Finally, a nurse came in to let me know that they were ready for me.  She explained that I will be lying flat during the procedure and for about 4 hours after that for recovery.  I was devastated since it is difficult for me to lie on my back due to the chest pain, nausea, dizziness and headache.  I asked if I can chew on mint or gum or ice or ANYTHING during this time.  As is the case with hospitals, the answer was "absolutely not, we're afraid of asphyxiation."  I told her it sounded like legal talk and I would sign something if it helps.  The nurse snapped and said, "it's not legal talk, it's nurse talk."  Now, I know they have their concerns but hospital protocols generally are strict, at the expense of the patient.  It's also ironclad.

I tried explaining that I have Lupus, that this is something that was not explained to me before and that I just needed mint of something to get through this without feeling the nausea/dizziness.  I was exasperated.  The nurse, also exasperated, stated that I do not have to go through the procedure if I don't want to.  She said, it was my choice.  This statement completely broke me and I was left crying even more and saying stuff like -- well, it's not my choice, I don't want to be here, I am too sick for this, but the doctor said I could die, so I am here -- and as I was saying these things, I realized, I had no choice and I had to go through with it.  Time was of the essence and I could not put this off.  I was not going to feel better in a few weeks.  Defeated, I decided to go through with it.

I cried the entire time.  They wheeled me into the catheterization lab, where I laid naked on the bed/table.  My groin area was cleansed with alcohol and a monitor was placed on my chest and ankle.  I was awake the entire time and had to listen to everyone's discussions.  This was very reminiscent of when I had to have a C-Section about a year ago.  The doctors talked to each other about what was happening ("ok, the tubes are being inserted") and then talked to each other about other things ("hey, can we get some music in here").  You realize, while it's a devastating day for you, it's just another day in the office for them.

Incisions were made in my groin to access an artery for the catheters.  Because they numbed the area, I did not feel too much pain.  Pressure was added at times and my heart was pumped faster than usual.  It was the closest I came to feeling what a heart attack must be like.  The procedure lasted about an hour.  The pain really came afterwards when I was taken to the recovery room.  The nurse took both of the catheters out and applied pressure to the area.  I had to lie still for 4 hours after that.  The area was incredibly sore, the incision areas burned and I was in general Lupus pain, including nausea, body aches, difficult breathing, etc.

I was finally released at 8pm.  I stayed up most of the night from the Lupus pains, aggravated even more from the procedure.  This is the problem with Lupus.  My body cannot handle the stressors that a normal body might be able to.  The bruising from my C-Section lasted almost a year.  I wonder how long this will last?  At least no infection so far and fingers crossed for the results.  Sigh.

Picture:  Bruising from the heart catheterization and biopsy

* Heart disease is a major complication of Lupus and is a leading cause of death among Lupies.  Non-invasive blood tests, chest X-rays, an electrocardiogram (EKG), or an echocardiogram may be used to find out if you have a heart condition caused by Lupus. For more information on how Lupus attacks the heart, please refer to the Lupus Foundation of America website. 

http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnaffects.aspx?articleid=2301&zoneid=526

The Diagnosis

"It's not like you are going to die. . . ."

I remember thinking I needed to exercise.  I was on a ski trip in Utah and I could not keep up.  I was short of breath, my chest was hurting and my body was aching after one run on the slopes.  I called it quits, had some chow and went to bed thinking I must just be tired from working long hours, recovering from the holidays and flying.  The next day, I woke up with incredible chest/back pains.  I told my husband Jim to press a huge book on my back while I layed faced down to try relieve some of chest pain.  I also tried getting a massage.  None of these remedies helped, but again, I thought it was just a regular sort of body pain.  Nothing serious. 


Then I woke up in the middle of the night crying.  Actually, I woke up wailing.  I did not know what to do with myself because I was in so much pain.  As soon as the sun rose, my husband and I took a cab to the nearest hospital.  They ran a variety tests all morning.  At the end of it all, a doctor came in, and proudly announced that they figured it out -- I had pneumonia.  What I found amazing about this is that they delivered this news like they won the lotto (for figuring out the cause) and as if I just had a common cold (no explanation whatsoever as to what pneumonia is).  This was the beginning of a long line of my interaction with doctors, where devastating news is nonchalantly delivered to me as if they were delivering news of the day's weather.  To make the long story short, I stayed out the rest of my vacation in Utah, then flew home to NYC, went back to work, and in a short while, was hospitalized.  I had my lungs punctured and fluids drained.  I was in debilitating bed rest for about two months.  My pneumonia was pneumonia pleurisy and possibly a flare. 


When I returned to work, I started to have muscle and joint aches.  As if I didn't learn my lesson the first time, I believed it was because I was out of shape again.  I thought the prolonged bed rest led me to these weird joint and muscle aches.  I was also unreasonably fatigued all the time and had to steals little naps just to get through the day, but again, I reasoned that the pneumonia must have taken a toll on my body.  It wasn't until I could no longer sit up on my own, or lift my arms to get dressed, that I finally went to see my doctor.   My primary physician, Dr. F, ran some blood tests and suspected that I might have Lupus or Sjogren.  He referred me to a rheumatologist, Dr. G, who confirmed that I had "mild Lupus". 


I was more confused than devastated.  Lupus? What is that?


So I asked my rheumy Dr. G., who advised that I do not scare myself with websites and support groups and instead, referred me to an old pamphlet from the 70s.  He stated that nothing really has changed since the pamphlet was published.  He then sent me home with a prescription for a low dose of prednisone.


I had lots of questions after reading the short pamphlet.  


So I then turned to Dr. F with my inquiries, to which he impatiently replied -- "It's not like you are going to die from Lupus!"


I took odd comfort in these unsympathetic comments.  After all, these are doctors and they must know what they are talking about, right?  Besides, I thought, my life is too busy to make room for Lupus.  If it's not going to kill me, what's the big deal?


This was the wrong start to being  a Lupie.  Since the diagnosis, the mismanagement of my disease led me to come face to face with death and it was an ugly fight.  I have survived but not without a heavy price.*  


*If anyone reading this has been newly diagnosed with Lupus, I urge you to become an educated Lupie.  Please reach out to your local support group, the Lupus Foundation of America or even to me.  Avoid websites until you have read some books on Lupus and living with Lupus.