Jessica Cowin is in kidney failure and needs a kidney transplant.
One Week ago today, Jessica and I had surgery. The kidney transplant went really well. My left kidney was small and is working well in Jessica. Jessica had two plasmapheresis treatments after the transplant and since her antibody level is low, there is a good chance that she will not need any further plasmapheresis treatments.
Jessica had her first kidney biopsy yesterday and the results were good and everything is working well. She has to go three times a week for blood tests for now, but will probably be cut down in a couple of weeks. Jessica is also being seen by a home nurse, who comes to the house twice a week to check on her.
People from my Moms work, have been bringing us dinner for the past couple of days this week, which is so thoughtful. Our mom took off this week from work to take care of us, which has been greatly needed and appreciated. Friends and family have called, emailed, stopped by and sent cards to us to make sure we are doing well.
We want to thank everyone for all of their continued help, support and encouragement! It all means the world to us.
Surgery is TOMORROW April 2nd!!! Jessica is getting her last treatment of plasmapheresis right now and later we will be preparing for our early arrival at the hospital.
As long and trying as this whole process has been, I cannot believe that surgery is tomorrow. It has been an exhausting, frustrating, and unbelievable journey to get to this point. 6 months have passed since we were first told about Jessica needing a kidney transplant and here we are, a day away from surgery.
This past weekend a couple of friends held an event called "The Blank Canvas Event" in which green businesses set up tables to showcase their business and Ethan set up a table for Give Forward showcasing our Fundraiser. A day later, after the Shamrock Shuffle, Give Forward set up a fundraiser at McFaddens Bar to help raise more money four us, which went very well. Ethan and his staff raised $300 by selling shirts, wristbands and gathering donations from fellow Shamrock Shuffle Runners and complete strangers.
Ethan and Give Forward, Thank you for all of your help and endless support! You have no idea how much it means to us.
A week ago today Jessica was approved for Medicaid, thanks to the help of Congressman Mark Kirk and his staff. Jessica is currently getting her first treatment of Plasmapheresis this morning, which should last about 4 hours. Tomorrow she will have her 2nd to last treatment of Dialysis before the Transplant next Thursday. We are currently staying in the city at the Affina Hotel, which is literally next to the hospital and don't have to run back and forth to Northbrook. Although we miss being home for a week, this was a little easier for us and little less tiring to stay close to the hospital.
Jessica is tired, but in really good spirits. We went for Pre-op yesterday, where they told us how to prepare for the surgery the night before and what time to be at the hospital in the morning. We are trying to get some rest and prepare for the surgery and recovery.
The surgery is back on! The hospital changed their minds AGAIN! Surgery will be on April 2nd. Keep you all posted!
Today we found out the Kidney Transplant Department will NOT go ahead with the transplant due to us fundraising without their knowledge, Jessica is not guaranteed Medicare when they have told us numerous times that it was automatic since she receives SSI and that they are not sure She will be able to take care of herself like taking medications after the transplant.
So, for the second time, the Kidney Transplant Department at Northwestern Hospital is denying life-saving treatment because they are greedy and only concerned about how they are getting paid.
The way we were approached was awful. This morning the nurse called us to tell us to go see the social worker before we pick up the two week schedule for the transplant. So with no knowledge of what this might be about, we got to the hospital and the social worker, patient representative and financial person took us upstairs to a small conference room to tell us straight out that it is their policy to not proceed with the transplant. The reason was because we were fundraising and never told them.
Fundraisng? To pay for the transplant, maybe because they had said they wouldn't proceed until we could either pay up front or until Jessica gets medicaid. What choice did we have, to just wait months on end for medicaid and just let things happen on their schedule. Jessica is in end stage renal failure, which means she is dying. The social worker had the nerve to tell us the Kidney Transplant was ELECTIVE surgery...yes, sign me up!
Thanks for listening!
Jessica finally came home this past Thursday from her two week+ stay at NMH. During her stay she received two heart biopsies, a vascath implantation for dialysis and four treatments of dialysis. She has six more appointments for dialysis, three treatments of plasmapheresis, and one treatment of Rotuxin before the scheduled transplant surgery on April 2, 2009.
For the next two weeks leading up to the surgery, Jessica and I will be traveling back and forth from home in Northbrook to Northwestern Hospital for her treatments. The dialysis treatments each take about four hours, the plasmapheresis also takes about three to four hours each.
Jessica, is of course not happy about the dialysis but none the less she is making the best of it. Although it is hard to do some of the simple things we take for granted everyday, like being able to take a shower and blow-dry your hair, Jessica has needed my help. The vascath that she had put in for dialysis and plasmapheresis is located on her upper right chest and collar bone. This little annoyance cannot get wet, so we had to get creative with plastic and tape. Although she will need the vascath after the surgery for more plasmapheresis treatments, it is not going to come out for up to six months after surgery in case she needs more treatments.
Thursday March 26, 2009, Jessica and I will go for pre-operation blood tests and consent signing. Then it is only one week away from surgery!
Jessica has been in the hospital since 3/3/09. Today she had a cathater put in by her neck so she can have dialysis for the first time. She is tired and weak, but she is pulling through and making the best out of the situation.
This morning, Steve Miller of Radio 780 WBBM ran our story on the radio and is posted on the website: http://www.wbbm780.com/Woman-Raises-Surgery-Money--To-Donate-Kidney-To-Si/3984314.
Another story was written by Tracy Coenen on WalletPop.com: http://www.walletpop.com/blog/2009/03/09/how-much-is-a-life-worth/.
We have more people interested in our story, but the news broke to the public this morning. Judy Graham is also writing a piece on us for the Tribune.
Thank you to everyone who is supporting and encouraging us and sharing our story.
Special thanks to Steve Miller at Radio 780 WBBM, Ethan Austin and Desiree Vargas at Give Forward, and Tracy Coenen at WalletPop.com.
As of yesterday, Jessica was admitted to the hospital through the ER. She is doing ok, but they found that she has fluid around her heart, which they are administering medicine to get the fluid out. Jessica had a heart biopsy today because she was having trouble breathing and heart palpitations for the past couple of days.
Yesterday, while Jessica was waiting in the ER talking to doctors, I talked with a Patient Representative at Northwestern Hospital. I told her the whole situation about Jessica and the refusal of treatment and transplant. She immediately called the Kidney Transplant Department Manager and about two hours later the Transplant social worker called to tell us that they were going to go ahead with the transplant.
They said since we are raising money and that Jessica will automatically get Medicaid because she receives SSI, they are going to go ahead with the transplant! The hospital is assured that they will get paid, so they are going to get things rolling hopefully within the next three weeks.
Fundraising will not end!! She needs the money for medical expenses and still needs your help!
When Jessica had the heart-transplant, we were told by several people that what insurance covers relating to transplants is never enough. The Children's Organ Transplant Association (COTA) suggested that we raise at least $100,000 for transplant-related expenses, such as medications, which are life-long, living expenses if she's too ill to work (related to heart or kidney); gas from travel to and from hospital; parking fees, etc. These are all expenses that are above and beyond what is normal medical care because the expenses occur more often and the medication is life-long and extremely expensive.
Originally, we raised about $52,000, of which we've used about $22K and COTA still has approx. $31K. On their website it states that we have the original amount and we've spoken to them about stating what was actually still in the account. We have no direct access to that money nor the money being raised on GiveForward. That will be transferred to COTA. When we request funds from COTA, we have to submit receipts to our Trustee and he then forwards it to COTA for disbursement to us. Again, the money is ONLY for transplant related expenses.
If Jessica does not survive, we do not get that money back. It goes to other families in need of transplant-related expenses.
If you have any questions, please don't hesitate to ask.
Jessica Cowin is in kidney failure and needs a kidney transplant. She is on the transplant list and I, her sister, am a match to donate. Jessica is not new to this process; she had a heart transplant in 1999. All donations go to COTA for Jessica Cowin.
Jessica has been in and out of hospitals all of her life. When she was born she was missing part of the left side of her heart, a condition known as hypo-plastic left heart syndrome. She couldn't pump blood the right way and underwent two open-heart and two closed-heart surgeries before the age of 13, which led to the implantation of a pace maker.
At the age of 16 she was in complete heart failure and needed a heart transplant. After being on the list a short three weeks, on September 26, 1999, she was called to Children's Memorial Hospital in Chicago for the heart transplant. As frail as she was, she walked back to the operating room and a long 12 hours later, she was out of surgery and in the ICU.
Throughout the past 9 years, Jessica has had the best medical care at Children's Memorial hospital and more recently in the past 5 years at Northwestern Memorial Hospital in Chicago. The life saving heart transplant gave her vitality, strength and a great outlook on life. She has been doing well with the heart and in more recent months has been experiencing problems with her kidney function.
As you might know, when you receive a transplant of any kind, there are anti-rejection medicines that you must take to keep you healthy. For the past 9 years, Jessica has been on the same anti-rejection medicines, which are the cause of her kidney failure. Although the medicine has helped keep her heart in perfect condition, it started to hurt the kidneys in such a way that she needs a new one.
The situation with the kidneys as of right now, is that Jessica is cleared for surgery, but her insurance has a transplant maximum coverage of $30,000. Since I, her sister, am a match, Jessica will need to go through 3 treatments of plasmapheresis, which cleans out the blood of antibodies. She needs this treatment because she had more than 6 pints of blood transfusions over the past 4 months. The clearing of the antibodies from her blood will allow for a better anti-rejection rate of the new kidney.
The plasmapheresis treatment alone costs $30,000 and the entire cost of the transplant is over $100,000. As of February 24th, 2009, the kidney transplant department at Northwestern Memorial Hospital will not go forward with the transplant until we can pay the full amount of the surgery. Jessica has applied for public aid through the government and financial assistance through the hospital. We have not heard back from either yet, but we are hopeful.
Jessica is 25 years old and graduated from DePaul University in June of 2008. She is excited about her future and wants to live her life to the fullest. After she receives the kidney transplant, she plans on giving back to those who are in the same position she is in and volunteering at Northwestern Memorial Hospital. Jessica is an entrepreneur at heart and looks forward to helping people through her future business ventures.
My family and I would like to thank all of you for your support through this difficult time. We are hopeful that Jessica will get this life saving kidney transplant in the very near future.