Chronic Pain Support Group

I've posted about this before, but it's been along time. I was wondering if there were any new members that could offer some advice. Also, older members who might have missed my post. It's been since October, I believe.

Well- to start things off, let me introduce myself. I'm Stefanie, I'm 24 years old, mother of two boys and wife to my husband of 5 years, been together for 9. I have went through pure hell beginning in 2005.

I got pregnant with my first son in July 2004. It was a pretty uneventful pregnancy until about 24-26 weeks when I developed a horrible (and I mean horrible) bout of kidney stones. My left kidney was literally filled with stones, ranging from 5mm to almost 2 1/2 cm. I was in excrutiating pain, and could barely stand at some points. I was hospitalized for a week, and had my kidney drained and tried to stay as hydrated as possible (which did help, a lot, with using the bathroom). Finally I had to get a stent placement for a week because my urine was backing up. Miraciously, the stones began to break up and pass on their own. The bigger ones stayed though. They were not blocking my kidney or urine from passing, so they "left them alone", but they never broke up on their own, and occassionally I would get pain in my back that would take my breath away.

Well, my son was born February 13, 2005, premature by 6 1/2, almost 7 weeks. He, thankfully, was fine. His lungs were developed and had to stay in the special care unit only due to a case of jaundice. The jaundice wasn't very bad, but he had to stay under the billi-ruben light for 4 days, and had a 7 day dose of antibiotics because I had tested positive for Group B Strep (a bacteria that lots of women get during and before/after pregnancy, that can not harm the mother, but can harm the fetus. Therefore, they administer antibiotics during labor for precaution, and also if not treated can give the baby a strep infection, usually in their lungs) Well, needless to say, my son did develop a strep infection at 6 weeks and had to be hospitialized also.

Anyway, to make a very long story a little shorter, at about 4 weeks post-baby I began to feel very ill. I started running a temperature ranging from 101-104 at times. I was constantly on Tylenol and Motrin switching off during the day to keep my temperature somewhat regulated. I was hot, then I was cold, then I was hot, then I was cold, etc. This went on for about 2 weeks. I visited 2 hospital emergency rooms only to be sent home with a "kidney infection", or as the last doctor said, "your white blood cell count is very elevated, and you have some kind of infection somewhere inside your body that we can't pinpoint at this time." That was after I was forced to drink contrast for a CT scan, that I violently threw up the contrast before they could perform the X-ray. It tasted like banana chalk. For one, I loathe bananas. For two, I was already nauseated out of my mind. Why would they think I could possibly drink contrast that tasted like total ass. Anyways..

They still performed the x-ray hoping that some of the contrast would have stayed within my body and that they could possibly see something that was making me sick. The doctor examined the reading and said there was nothing he could see, but that I was clearly in pain, so he gave me two doses of demerol while in the ER. Drew more blood, and sent me home on some Levaquin and Mepergan for pain. While although mepergan is strong, didn't touch my pain in the least. Something was seriously wrong with me, and they did not figure it out. Anyway, before I left I was asked to sign a paper stating that a radiologist on the next shift would review my x-ray reading and I would be contacted if anything else was seen on the x-ray and if I needed further evaluation. Needless to say, I never got a call.

Two days later, after 2 more doses of the Levaquin (plus the IV dose I got in the ER), my pain was even worse. My fever was still not under control, and I literally felt like I was dying. I had a newborn baby, our first baby, and it was hard for me to take care of my son, thank God I had my husband and mother to help me during this process. Otherwise, I don't know what I would have done. Anyway- two days later, when my husband got home from work, he woke me up out of the bed, I was drenched in sweat, my face was as red as an apple, I was burning up and I began throwing up in the trash can I was keeping at my bedside. He said no, this is not working, there is something seriously wrong and they don't send someone home in this type of condition. So, he called 911.

When the ambulance arrived, I was so weak they had to carry me, place me on the stretcher, started IV fluids and put ice cold rags all over me. My fever had reached 104.6 by this time. I was taken to the emergency room, where at some point, I passed out when I got up to use the restroom. I woke up, with half a dozen doctors staring at me asking me "if I could breathe". I looked at them in horror, because on one of the lab coats under the doctors name it said Pulmonary team. I had just turned 20 years old, what was a lung doctor staring at me for? I was being pumped with demerol, zofran, and 2 antibiotics, the strongest ones they administer. I can't spell it, but one was Roseffin (sp) and they said they only give it to very ill patients, and burn patients. I begged for answers, wanting to know what was wrong with me. Where my husband and son were, where my mother was, I was horrified. I had oxygen going through my nose and also a mask on. My hands were also restrained, I guess so I couldn't take the oxygen off. I had never been so scared in my life.

After a few minutes of the doctors consulting with each other, they FINALLY decided to tell me what was wrong. I was almost in congestive heart failure, and my left lung had completely collapsed. They told me I must have contracted pneumonia while I was pregnant and it had got undetected because I was not showing signs or symptoms of pneumonia. No trouble breathing, no weakness (until my lung had already collapsed), no wheezing, nothing. Only fever. So initially, they thought it was a virus. I kept returning to the hospital, get this, 8 TIMES, once via ambulance, because the pain was SO bad in the left side of my chest I literally felt like I was dying. Of course I dont know what dying actually feels like, but it's the closest thing I've came to it. And the doctors in the hospital I was brought to (not the same one I had went the other 7 times) told me that if I had waited a few more days I'd most likely would have been on life support fighting for my life. Because I was literally, no joke, drowning myself. And remember, I was only 20 years old!! I had JUST turned 20, this happened in April 2005 and I had turned 20 on March 12th 2005.

So on to the point, more or less, lol.. I'm just trying to let everyone have a feel of why I hurt so bad and so constantly at such a young age. I was, of course, admitted immediately, and to my downfall my mother, brother, and some of my immediate family was at the beach at the time of my admittance. Because here where I live (Augusta, Georgia) there is one week in April (usually the 1st or 2nd, depending on the dates) that a major golf tournament comes here for the week. Most of the locals who are either A) not interested in golf, B) can't stand the traffic, or C) rent their houses out to travelers (can make big $$ doing this); and my brother's birthday falls on April 11th so every year my family would take a trip to the beach during this week to get away from all the chaos of the town.

So, I am a new mother, a newlywed, and here I am lying in a hospital bed, being told my lung had collapsed, that I was going in for immediate surgery in less than 1 hour and I couldn't get ahold of my mom to save my life (no pun intended). I was scared out of my mind, I didn't understand what was going on because A) the pain was so bad it was making me delerious, also the pain medicine leaking through my veins wasn't helping me to be coherent, but thankfully helping me to cope with the pain, and B) I'd never even been sick in my life. Plus, I had my newborn son at home with my husband (he left him with his mother and came to my side when he found out how serious it really was) and I was worried sick about how they were feeding him, if they were changing his diapers enough, was he getting enough sleep and comfort without his mother, I was a complete wreck.

So, the next thing they told me is that I was going to have to have an immediate surgery to "drain my lung" and that it was going to be very painful, and that i would have to be awake for the procedure. So I was laid on a very, very cold table, had a pick line placed through an artery (hurt like the devil) and then had another catheter placed in my back inserted into my left lung cavity and then the pain began. I could absolutely FEEL my lung expanding. I have never experienced such pain in my entire life. I've had two children and I'd have them again in a heartbeat with no pain medicine or help at all, rather than go through that painful lung procedure again.

So after that surgery, I was wheeled back into my hospital bed and was told to "wait" until tomorrow when I'd have another chest x-ray and CT scan to see if enough fluid was drained (they got 3.7 liters, it was orange, so nasty looking, and I made them stop because I just couldn't take it anymore. They said they thought they got enough.) Well, after the new x-rays it was determined they did NOT get enough, and that the fluid had been in there soo long that it had scarred my lung, and left lots of scar tissue that they had to get out. So I went in for a thorocotmy surgery. I have a 9 1/2 inch scar across my chest where they ripped my chest down and I have two scars in the form of X's where I had two chest tubes breathing for me during and after the surgery. I had an epidural placed in the top part of my back to prevent me from feeling myself breathe. They said THAT pain would have hurt in ways words can't even explain.

So, I stayed in ICU for 7 days, and the hospital a total of 52. When I got home, life was horrible. I had to sleep in a recliner chair, I couldnt lay back from the pain, even after all the pain meds given to me I was still in excrutiating pain.

3 months later, I got a nerve block. They determined that I had nerve damage and two broken ribs from the surgery (which I was never told about). The nerve block was unsuccessful. 2 months later, I had another. Again, unsuccessful. So I started with the aquatic therapy. Then the PT. It was getting harder and harder for me to maintain a normal life. I couldnt even lay down without shooting pain in my side. To this day, where my scars are, is numb. The pain is INSIDE. I can feel it radiating from inside my body. And to top this all off, I began to get kidney stones again.

I had two lithotripsy surgeries, 11 more stents, and 4 years of hell. I am never pain free. Ever.

I finally got sent to a PM doctor by my pulmonary specialist. When I had to go in for my 11th stent and last kidney surgery is when they gave me the extra meds. My PM doctor dismissed me as a patient because I accepted the extra medicine that I needed for post surgery pain.

Does this sound fair to you?
Posted on 06/27/09, 02:06 pm