Kelle had a cancer scare, money problems and minor health problems. But she was determined to better her life. Meeting John was a blessing, moving to a new home another blessing, and peace seemed to be coming to her life. She researched and pushed to get into college with grants, kept her grades up and has made the Dean's List each semester. Her Dad and I were so proud of her. With John in her life, her education and chances of employment after graduation, her attitude was better and better. John and Kelle decided to go to a new church together, which was another blessing, and her three boys were doing fine in school and at home.
Unfortunately, things took a turn and her endometriosis got worse and was causing her pain and problems. Also a lump appeared and she went in for surgery to remove the lump. At this time we are waiting for her 6 month checkup to make sure it has not turned into breast cancer.
Just weeks after the breast surgery, her second surgery was scheduled. After 3 years of trying to manage the endometriosis, the doctor felt that "surgical intervention was the most likely option for relief ". There is no cure for endometriosis, and Kelle's had become so bad that her organs were fusing together and causing cysts, fibroids, and lesions. July 15th was post op...blood work and checkups.
JULY 16, 2013 - Kelle went in for the 2nd hysterectomy, the doctor came out and told us it went very well and he was very pleased. They did a robotic operation as it was not as invasive he felt. If all went well she could go home pretty quickly. She was sent home that same evening, even though she was in recovery for more than what was normal, they said she would probably feel better at home. With the pain medications, she appeared to have the normal pain and soreness from the operation. The next day she was in pain, and asked if I could come and stay with her on Thursday so she wouldn't be alone.
JULY 18, 2013 - I go over to my daughter's house early, she asked me to buy her pads and some other things, but while I stopped to pick them up I get a hysterical phone call and Kelle is screaming and crying. I rush over to find her sobbing, bent over in pain and upset because she is "peeing" and can't stop!! I get her dressed, and we rush to the ER. Now there's another story! Talk about poor service in an ER!!
We get in and tell them she is in pain, had just had surgery 2 days ago, and is uncontrollably losing urine. We spend the next 8 hours trying to convince someone that she is in pain, needs new gowns because of the constant leakage, try to get pads, while watching them repeatedly mess up trying to get an IV connected. One nurse puts it in and her arm immediately starts to swell and poor Kelle is crying and telling them it hurts, another nurse comes in and pulls out the IV, mutters under her breathe at the other nurse and proceeds to calm Kelle and try another IV. FINALLY after almost 8 hours they take her for a CT Scan. She comes back and I am trying to dry her off. Not long after they came back for her for another CT scan as there were some errors with the first ones. Next thing we know doctors are coming from all over. A Urologist comes in and tells me it is a "good thing I brought her right in because there is a hole in the ureter and urine is flowing into her abdomen and more, which is why it is just flowing out and she can't control it! The urine flowing into her abdomen only had one place to flow out:you can fill in the blank there. She was close to septic and it could have killed her!! WOW, good thing ER took care of her so quickly..........yeah, NOT.
Now my poor girl is admitted and upstairs. Several surgeons, urologists, etc. come in and tell us they are going to take her in and put a stent inside the ureter until it heals and hopefully the stent can just be removed later. We research the robotic that they say was used and find out it is the Da Vinci Robotic, which has a tendency to spark and apparently has caused a hole in the ureter in other patients and does not have a good reputation. The FDA is currently looking into the system and had sent alerts out earlier in the year. GREAT! Apparently that is JUST what happened to my daughter. No one told any of us that could be a complication!
July 20, 2013 - she is released and goes home, in pain, which they say is normal. She has a follow up on the 29th, but is still in pain.
August 5 - Kelle is still in pain and still leaking urine which is making her sick as well. The doctor does not think she is leaking, but he schedules CT Scans.
Appointment is botched up and it gets rescheduled for August 9. The CT Scans show that the stent is and had been blocked.
AUGUST 12, 2013 "“ Due to the inflammation and condition of the stent, Kelle now receives a nephrostomy tube. (This is a tube inserted into her back into her kidney that allows the urine to collect in an external bag). She is urinating normally from the kidney that is working, has a bag, but is STILL leaking vaginally as well. Pain is getting worse and she is so weak and befuddled from all the drugs she has to cancel her schooling, loses her grant money and is becoming more depressed because she is NOT feeling any better, but getting worse and no one seems to know what to do.
Sept 3 - they replace the old stent with a new one in yet another procedure.
Sept. 6 - she goes for more bloodwork to check on why she is not feeling better, having severe cramps, shaking, numbness and more pain.
Several more appointments...
Sept. 20 "“ She is scheduled to have her Neph bag replaced, they can only remain in place for short times before needing replaced. During the procedure they discover that the Neph tube is crimped and blocked as well and cannot replace it or leave it in. In the process, the stent is causing buildup and with the neph tube removed she is now passing the build-up in the stent and kidney stones 2x the size of most normal sized ones. Not only is she passing that, the threads used in the original surgery that were supposed to dissolve never did because of all the leakage and are now breaking up and passing through her system as well.
October 8 - Kelle goes back to her OB/GYN and he is shocked at everything that has happened and very upset. He had been told she was doing fine.
October 8, 9, more doctor appointments. They are trying to get a specialist to take care of Kelle because of the problems.
October 14th - Kelle has more CT Scans and sees a new doctor.
October 21 - A follow up with the new doctor has him referring her to a specialist as her case is so complicated.
No money and the bills are piling up. The wonderful church they go to have helped with cleaning, food and of course prayers! God Bless everything they have done for my daughter so far, especially helping to keep her uplifted through all the pain and depression. We have been instructed to work with an attorney. That costs money to even begin.
The first specialist was at the Cleveland Clinic which is out of network for her insurance. Since Kelle has insurance she doesn't qualify for any financial aid at the Clinic. The Clinic has told her she would need to put down a security deposit of over $800.00 before they would even schedule an appointment to see the specialist and has to front her portion of the uncovered amount of the procedures before they will do anything since they are OUT of her network. That would cost $12,000 for what they THINK they would have to do. After that was met, her insurance would only pay 60% of any further treatments. So of course, can't afford that - so she doesn't see that specialist.
Nov. 6- Kelle landed in the ER and chose to go to University Hospitals because of more severe pain and hopes of finding another specialist. She now is being treated for an infection caused by all of this and has been referred to yet another specialist. We have been told that at this time they will begin a new round of tests and exploratory surgery to determine what procedure will be needed and how much damage all of this has caused. At this time the BEST CASE SCENARIO is they will do surgery to remove the damaged section of the ureter and re-implant it into a different spot in her bladder. This does not always work because the bladder does not like things attached to it, so many times it rejects the attachment or there could be a failure to attach period.
WORST CASE SCENARIO is that there are fistulas caused by complications from the surgeries (which is what they think they will find) and they might have to relocate the bladder if there is one fistula as the ureter will be to short to re-implant, and if there are two they may have to use some of her bowels or colon to recreate a section to connect. The scar tissue from the endometriosis and the fused organs might prevent that from happening so she could lose her kidney.
We have been praying and trying to pull together whatever monies we could, but it has become too much. We are frustrated that no one seems to be able to help my daughter and that it just keeps getting worse and worse instead of better. She is worried about the follow up on the lump, worried that she won't get better. They have already told her no matter what, she will not be better
Kelle needs a minimum of $2000 to pay the attorney to begin work on her case which he is very confident about. She will no longer have funds for rent or utilities after December. She lives off of a small amount of child support, student loans, grants, scholarships monies she was awarded to attend college full time, and part-time work when she can. Anyone that has been a full time student understands how that is, and she is doing this with 3 sons at home. She is now on medical withdrawal from school, has no driving, work or school privileges. The doctors and hospital have listed her recovery date as "indefinite", "ongoing", and "to be determined". She is worried about possible doctor costs, keeping her house, taking care of her boys and would love to just get fixed up and have no more pain!!!
God has been good to us, but we now need to go outside of that and help her a little bit too.
I will send a little gold angel necklace to the first 50 people that donate $20 or more to help out my daughter and my blessings.
Kelle is so full of love and was on her way to climbing out of a bad situation, had become close to God, was beginning a new relationship and I am so worried that if she doesn't get help soon, she will not just lose a kidney.
GOD BLESS YOU ALL for listening and helping. We will keep you informed of every step of her journey to hopefully good (or at least better) health and a happier future. I know we will be able to help her out with your help.
- Connie Ramos
- kathie Dice
- Cindie Schneider
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