Kidney Cancer and will I ever get answers from my doctors?

GeorjeanParrish Member Posts: 26
edited December 2011 in Kidney Cancer #1
Survivor Septic Shock,complete organ failure,fungal infection, resulted from a doctor accidentally puncturing my intestines during surgery. My family says I was swollen like a balloon, I remember my hands and feet peeling so bad & my hair falling out from daily CTs.

My story:
I had surgery on Dec 17,2008 to remove my kidney for what we were told, was advanced stage kidney cancer. We now find my Dr records show only renal mass, presumed TCC of the kidney, and not a single biopsy done before or during surgery that confirms any cancer, and my family was told immediately after surgery I was Cancer free. Then just the other day after the 12th request for ALL medical records(don't understand why this is such a struggle). We again, find even more disturbing information. I never saw any oncologist,that my PCP & Urologist clearly told us I was seeing, only (PCP,Urologist,Radiology)and now we are finding information that just turned up in my latest records request showing an Ultrasound I had on 11/11/2008 clearly indicates NO left or right renal mass, and a urine cytology shows negative for cancer cells another traumatic story, so I will stop and discuss the septic shock trauma from this surgery.

12/17/2008, during surgery for Left Laparoscopic nephroureterectomy,left aortic and interaortocaval lymph node dissection, right iliac and obturator lymph node dissection my intestine was accidently punctured.
12/17/2008 - 12/19/2008, I laid in a hospital in terrible pain for 2 days begging for help and was told by nurses & doctors I was being a baby and they just gave me more pain meds. I also find out no blood work had been done except Hct & Hgb and they were both Low and my urine output was very very low, maybe something that could have been a clue for the future, how about total blood work after a major surgery.
On 12/19/2008, the last thing I really remember for many, many months was looking into the eyes of my husband and telling him I was dying. He rushed to get help and General surgery stepped in and rushed me to emergency surgery, I was in Septic Shock. I spent 20 days on life support in ICU and survived only to be discharged quickly on 1/16/2009 with tubes and open wounds and the doctors & hospitals knowledge that I had another huge 9 cm abscess in the left flank that they couldn't reach through the abdominal incision, Major respiratory issues, etc. Well of course my husband had to rush me back on 1/21/2009 and then more drains added until they finally they did a flank surgery on 1/23/2009. I also had over the course of my treatment many blood transfusions, mixups in my treatment orders and various other traumatic events. Well,I finally left the hospital early March 2009, and had home health & my husband nurse my wounds at home for months, until all drainage tubes,wound vacs and open wounds healed in late July 2009. Since I am a strong willed person & a fighter that has never let anything get me down,(but this trauma),I fought my way out of the bed, wheelchair, walker, and was told by my doctors to walk,walk,walk. Only to find out around Sept/Oct 2009, that the additional pain I was now noticing was my abdominal wall tearing in the lower pelvic area, because of the infection, then the next month they found 2 more inguinal and ?? in my upper abdomen. My doctor didn't feel I was physically or mentally ready for another major surgery to repair them until after the 2009 holiday, but then the problems started as I was out of work for a year and lost my job and insurance. So there went my multiple hernia repair surgeries, and all care, since I could pay cash. I think that was the point I started wanting to know more about all that had happened to me, I was then told I had to ask questions through their risk manager and was never able to talk to any of my doctors and labeled "CRAZY", I know this as the nurse thought she hung up the phone when she called to cancel an appointment and continued talking to the office personnel on my vm about how Georjean Parrish, this CRAZY person will be calling upset we cancelled her appt.

I new I wasn't crazy for thinking they should be responsible for completely fixing all the medical issues they created, but since I couldn't pay and had no insurance, I was sent numerous letter asking me to quit asking questions & that as of 4/30/2010 I needed to find new doctors, and I didn't even understand all that had happened to me to be able to explain to a new doctor. My PCP basically acted ignorant to all that had happened to me and never referred me to any needed services, for R lower lung paralysis, asperating from being intubated twice,etc. Blood issues,etc.
The the last PCP I found to treat me after my medicare started, got frustrated with my questions and didn't have enough time in her schedule to accommodate me, so here I sit home bound with no life, no car to find a doctor, no correct abdominal supports, since now the doctor I discussed surgery with is worried it has been so long that there will be issues with scare tissue and adhesion, so until something ruptures or my intestines get incarcerated/strangled, he say to leave well enough alone.
OK, I can kind of agree that God has gotten me this far he wouldn't let me down now, but days when I am so sick, I get scared. I struggle to pay for the medicines I take, since medicare doesn't cover and AZ doesn't offer supp plans if under 65.
I live on daily Miralax and now a very limited diet, low carb,low fat, low cholestorol, no caffine, no dairy, only water, water and more water, 1 glass of tea per day since I can't eat a lot of meat with my hernias and have been told last month my blood work is terrible & my 1 kidney is compromised. I feel like I am limited to bread and water and don't dare try and ask for more specific info as to why for fear of loosing another doctor, because I ask too many questions.
Yes, I thank God everyday that I survived Septic Shock, so I can be here with my husband, children and grandchildren, I just wish I could get completely well and feel better and have my life back.
So much for life after Surviving Septic Shock, I really do try to stay Positive and Hopeful, but that doesn't seem to be working very well, somedays. I just want to be healthy again and able to LIVE my life.
Thank You, for listening
Georjean Parrish

Making sure Mayo Injured Patients get their life back, and the truth, with compensation for loss of my life as it was before Mayo CLinic AZ came into it and ruined it, for their unknown selfish reasons, since they won't even discuss anything with us. I do deserve lost wages & pain & suffering, just like any other person that is injured by someone.
Thank You Georjean Parrish 623.217.2116

Perfectly healthy until I started seeing dr Richard Wall at Arrowhead. I had right pelvic pain - he sent me to hosp for ultrasound for possible appendicitis. Dr Ricky Arnold informed my husband and I that I had a very advanced stage TCC of the kidney that had spread to my lymph nodes and lungs, and things didn't look good for me and needed surgery immediately. Well,of course, we were over whelmed,scared,confused, and all the other feeling that come with being told you have a very advanced stage cancer and this was the part of his job he hated(being the bearer of terrible news), he offered to schedule all my appt for testing to start. We saw a Dr Shane Daley who works with Dr Erik Castle who would perform the surg. The original plan they told us was to do a chest xray, ok that came back great we were excited it hadn't spread to my lungs, then on to biopsy of lymph nodes, those were all fine as well. Then kidney function test, they told us my left kidney was only functioning @ 30%, So the plan of course was since the cancer was limited to my left kidney I was to do a round of chemo then surg then more chemo. Somehow at the last minute the drs recommended doing the surg to remove my kidney 1st then would follow up with chemo, except somehow as soon as the kidney was removed my family was told I was cancer FREE, and didn't need the Chemo. Of Course, I didn't get that news until July/Aug 2009, because I went into SEPTIC SHOCK after the doctor punctured my intestines. How does that happen??? Then to make matters worse I remember feeling like I was being forced to do things against my will, and no one would let me see my family. I was in fear for my life - how does that happen in a hospital. Then I ended up with a punctured intestine and left in terrible pain for 2 days while being told I was a baby. My last words to my husband were I am dying before I went into Septic Shock and spent 20 plus days on life support and not treated correctly as I had septic fungal infection and they weren't giving me the right medication as they didn't know I had reached the point of fungal. Sent home with many tube and open wounds - had to be re-admitted 3 days latter and stayed 3 more months. I have been left with multiple abdominal hernias as my insurance lapsed and so did and care. I also requested to discuss all that had happened with my drs once I was somewhat coherent and told no I was not allowed to, we had to submit them to a hospital risk manager person that would get the answers. We also have had terrible hurdles to jump through trying to get my medical records and nothing we have shows any cancer confirmed in my body prior to surg and for another dr to tell me that Shane Daley & Erik Castle mad a medical decision without my consent is not acceptable. They told me I had advanced Kidney Cancer, and his medical note show PRESUMED TCC OF THE KIDNEY. I have also found reference to transplant papers in my file where would these come from and an additional surgery with drs I have never heard of or seen. I have lost my job and insurance and Medicare won't pay for dr injuries to patients. This needs to be addressed and soon. Why would I ever have memories of feeling like I was fighting for my life or a nurse telling me I had to just co-operate or they would let me die. And also a point to note I was never seen by any oncologists, and my ct that states I had cancer that was shown to me was updated, where is the original. WE also had 2 incidence that we found paper given to us that referenced kidney transplant and those where taken immediately from my hands. I also have a copy stating some of my medical records are archived and I want those. Why would anything be archived,there is a 5 year retention law. How does a hospital take out my kidney and all related organs and lymph nodes that clearly had NO CANCER confirmed anywhere in my body prior to surg, this is criminal.

I need medical care,hernia repair, medical garments for protruding hernias. MY pay that I lost due to negligent behavior in your facility by your doctors. I nearly have all 40lbs of records in timeline order and scanned and it is a pretty ugly story. Even the information that my family thought I was in a medical coma and couldn't communicate, but somehow I had a medication vacation everyday 5am till 8am with trauma added as my family wasn't allowed to be there during those times, I have the memories and there feel the pain for not knowing I was awake at any time during those 20 days. I have lost my home,my cars,my job and still too sick to work fulltime. This is not the way to do business and I will not go away.
Thank You, and have a great day
Georjean Parrish