A little over one year ago, I was a 34 year old mother of one who was relatively healthy with the exception of a
kidney stone in the bottom of my left kidney. I had gotten together with a urologist who was once my employer. If my problem were any more serious that a stone I might have chosen differently. But as I had been this urologists ( and the five others in practice with him) check out secretary for almost three years, I felt that he was a fine choice for a simple kidney stone.
I want to state for the record that at the time that this took place, I was not a diabetic, I was not being treated for high blood pressure, nor did I have any bleeding disorders. The only thing that showed up in my testing ( IVP and urine culture & sensitivity) was a bladder infection. I was scheduled for a ESWL (Extracorporeal ShockWave Lithotripsy) and given
Antibiotics to take up to the day of surgery.
An ESWL is where a doctor uses fluoroscopic xrays to determine where the stones are and break them up with shockwaves. I had seen many types of people pass by my desk when I worked for this particular group of physicians. Alot of
kidney stone patients. Lots and lots of people who went through ESWL and passed their stones and either went on with their life or had more ESWL to get rid of any remaining stones that hadnt passed. I saw old and young, thin and fat, male and female. I had never heard that it was a particularly pleasant procedure to have, so I knew to expect some pain. I was informed as I had listened to him and the rest of the doctors inform many others that this procedure at worst may blow a vein or bruise the kidney. I even signed paperwork to acknowledge that I understood that these side effects could happen.
The morning of the procedure I was just as happy as a lark because something was getting done to make this wretched stone pass!
Roughly an hour after I woke up from the procedure, I had been sent home. A nurse, prior to discharging me told me that I needed to try to eat or drink something. When I replied that I hurt too much and felt too nauseous, she shrugged her shoulders and said "well, thats ok, you can just take them home with you!"
I felt dizzy, nauseous and was in some pain. To me, home was the ONLY place I wanted to be. When I got home, I went straight to bed. The nausea wasnt any better and the pain was getting worse. I dont think I had been asleep for a half hour when the urge to vomit hit me like a ton of lead. I made it to the bathroom and when i was finished it was hard work just to keep standing up right and my chest was feeling like someone had parked a bulldozer on it.
I called my husband into the room and told him to call 911. He opted instead to call my doctor first. He told my doctor that I was in alot of pain and complaining of difficulty in breathing.
My doctor wanted to speak to me. I was crying and panting for breath but I took the phone.
He said "Carly! You know it is supposed to hurt!"
I replied, in tears, telling him that I really dont think it is supposed to make it hard to breathe and why cant I stand up on my own?
He told me in a very impatient tone of voice that he would meet me at the emergency room if I really felt like I HAD to.
When I got off the phone my husband dialed 911 and a squad came to get me. When I presented at the ER the doctor on staff asked me if I was there because Dr. So and so hadn't prescribed me enough pain killers?
I can remember being furious with that SOB but at the time it was getting harder and harder to breathe and stay awake. My urologist had admitted me after he realized that my blood pressure was extremely low and that my blood work was coming back VERY abnormal.
To make a long story a little shorter, this doctor, who had once been my employer, kept me in the hospital for three days.
He ordered tests which other doctors refused to perform because I was simply too weak, and too short of breath and too nauseous. After three days he felt that the ESWL may have injured my spleen. He called in a general surgeon who then disputed his diagnosis and insisted I be life flighted to another hospital for an operation called a selective angio-embolization.
He felt my kidney was bleeding profusely, and my lab work indicated that I was already in acute renal failure. I vaguely remember asking this doctor why I couldnt be taken by ambulance- I was SO out of it- his reply to me was that if the ambulance would have hit one chuck hole in the street I would be finished. I remember being life flighted and taken to the Angio room and having masked and gowned people try to explain to me what they wanted to do. I remember that they tried to get me to lay down on a table so they could start and when I did, I couldnt breathe and I panicked and started to cry and struggle to sit up.
After this I have no further recollection until 14 days later.
I was informed that the ESWL had shattered my kidney and the renal artery at the bottom portion of my kidney. I had lost eight pints of blood. A great deal of it had gone into my lungs causing a condition known as ARDS. (Acute Respiratory Distress Syndrome) for which I was placed on a ventilator for 12 days as well as other tubes to suction the blood out of me and one in my nose to try to feed me.
I can remember upon awaking that there was an IV in each arm and a line running into my neck as well as a bandage on the right side of my groin. During the time that I was on mechanical ventilation I "crashed" several times due to pulmonary insufficiency.
I also suffered very high fevers as a side effect of the angio embolization.
I also came to find out that my heart had gone haywire too, but it was felt that the amount of drugs they had to use to keep me sedated might have had something to do with that.
I fought hard, and do have vague memories of realizing that I was tied down. I remember trying to call out for my brother and realizing that I couldnt breathe in to speak.
From what I am told I struggled so hard that after I had physically thrown two nurses across the room it took six large men to hold me down and tie the restraints again.
The end result of this is that here I sit one year later, and still no one will say why this happened. They call it a rare complication and tell me that I am "the text book case".
The doctor who originally performed this ESWL called me on the evening of the day I woke up in the intensive care unit, and told me to get myself set up for a CT and another ESWL.
I accused him of trying to kill me and fired him. I am now with a urologist at the hospital I had been life flighted to, and he is also a professor of Urology at a prominent medical school, and even HE doesnt have an answer for me.
Needless to say I have done a ton of reading. They are right, it is rare.
What is even more rare is that the people this does happen to, usually are dead within the first 48 hours. They either succomb to the ARDS, or they have a heart attack due to the blood loss. But the one thing that stayed common among all the people I could find on the FDA website- they ALL died.
I have tried to obtain legal counsel, but no one thinks it is worth their time. But the one thing that I have heard from each and everyone of them is that either the machine was not functioning correctly, or the doctor made a mistake.
My reason for sending this story in is try to find out if there are any other survivors out there. I also hope to try to educate some people out there who are stone makers and should be informed of this complication- rare or not!
I am also posting this in hopes that if God forbid, some one else should have this problem maybe they will fight the urge to just lie down and give into it.
When I think of how close I came to feeling stupid about calling my doctor, and how tempted I was to just take a few more pain killers and go back to sleep, my blood runs cold. There is no doubt in my mind that at some point later that day they would have taken me out of there in a bag!
If there is anyone else who has had a problem like this I would love to hear from you... to all of you who read this, I thank you for taking the time for my story and hope you will keep this in the back of your mind if you or a loved one gets dignosed with a kidney stone.
Sincerely,
Carly A. Chandra