For: Cindy Bertram , Robertsdale, AL Organizer: Tony Bertram
's Liver Fund
03/01/2018: Yesterday we were at the University of Alabama in Birmingham Alabama for Cindy's first leg of this journey with the Transplant Team at UAB. More Blood work was done, testing for this Liver Transplant. We had some classes with the Pharmacist on the medicines that could be used after the transplant to keep her body from rejecting the new liver. There are 7 different medicines used but she will be given a combination of 3 of them as a "Cocktail" to suppress her Immune System from rejecting the liver when this finally goes down. We also had meetings with a Social Worker to discuss our current medical insurance through Medicaid and possible out of pocket expenses that Medicaid does not cover. Once Cindy is placed on the Transplant List we have to be ready to go at any time day or night. When a matching liver becomes available, no matter the time of day, we will be getting a phone call to notify us and we will have 6 hours to get to the UAB Hospital. That is all the time a donors liver will be viable for transplant. We have a 4 1/2 hour drive to make when the time comes as that is how long it took to drive from our home to UAB yesterday. (Traffic was heavy) Once the call comes and we get to the UAB Hospital, the surgery will take about 6 to 8 hours and there will be a 15 to 16 day in the hospital to ensure Cindy's body accepts the new liver then an additional 2 to 3 weeks as an out/in Patient so the doctors can monitor her progress as she heals from the surgery. During this 4 to 5 weeks the Hospital Transplant Team requires that I be there for learning the "After Surgery Home Care" for all that will need to be done and to assist the recovery team in Cindy's care while she is still in the hospital and then ensuring that she is getting the prescribed medicines, exercise, nutrition and watching for signs of rejection. It will take Cindy a few weeks after surgery to get to the point where she can start assisting in her own aftercare. This 4 to 5 weeks will require additional funds as the insurance (Medicaid) does not cover the cost of the Hotel, transportation to and from the hospital or the additional cost of living away from home (food). The Social Worker has given us information on setting up a campaign through HelpHopeLive.org that helps us raise the additional funds needed and they also manage paying these cost directly to the hotels or housing provider and manages the other expenses that will be needed. We will recieve none the proceeds directly, every penny will be accounted for and used strictly for Cindy's Transplant cost, i.e Medicines, Temp Housing for 4 to 5 weeks in Birmingham, Al and any other medically needed expenses. We have applied for HelpHopeLive.org assistance and once approved and setup I will post on this site as well as Twitter, Facebook and any other social media site. Please help us, without your help and donations, we cannot meet the requirements of the Transplant Team. Help Cindy Live.
02/01/2018: On January 29, 2018 Cindy was put in the USA Medical Center in Mobile, Al for a procedure to insert a permanent Chest IV in the Main Blood Vein on the right side of the Chest. This for for the administration of a Medicine named Veletri. In December 2017 it was determined that Cindy had developed Pulmonary arterial hypertension or PAH for short. Her Doctors think this developed as a result of the Cirrhosis of the Liver that has destroyed a large part of the Liver. Pulmonary hypertension (PAH) is a condition of increased blood pressure within the arteries of the lungs and can be life threatening if not treated. The medicine has to be mixed up at home and self-administered daily. The procedure for doing the mixing and administration of this medicine is Lengthy and requires Training from a specialized Medical Person. So far we have had 2 training sessions on this and that is not nearly enough but now that Cindy is back at home it is something we must master and will master. With the pressures too high in the Blood vessels and arteries leading to and in the lungs she cannot undergo the needed Liver Transplant and this medicine should reduce those pressures in the coming months to allow for the Liver to be transplanted from a healthy Donor. That is what her Doctors have told us and we are praying that this will happen with-in the next 6 months. There are some really bad side effects of the Veletri but so far Cindy is dealing with them ok. Just hope she doesn't have a setback in coping with this medicine and relapse. As things change I will be posting more later.
12/12/2017: Been awhile since I last update the site. After Cindy's last Doctors Office visit in October, Doctor Woods had recommended that Cindy go see a Liver Transplant Specialist and scheduled her for an appointment with Doctor Philip Henderson at USA Medical Center in Mobile Al. On 11/14/2017 we went to the appointment and Dr Henderson had already received all of Cindy's Medical Records and reviewed everything before we arrived. To say he was prepared would not do him justice. This Doctor came to USA Medical Center from the UAB at Birmingham Liver Transplant Facility and knows his stuff. After doing an exam of Cindy he immediately scheduled her pre-Liver Transplant testing at the University of South Alabama Medical Center, Doctor Henderson had recently setup the Liver program at USA to provide the same services that use to require patients to travel to Birmingham Al to do. On 11/20/201 Full MRI done, on 12/7/2017 Arterial Blood work, Stress Test, pulmonary Testing, Chest XRay and EKG done. On 12/11/2017 the Doctors Nurse called and said that the Doctor wanted Cindy to go back in the Medical Center Heart Lab for a Heart Cath due to something seen in the MRI but would not specify want it was. Cindy is scheduled for the Heart Cath on 12/20/2017 and will post results as I can. All this has to be done prior to any Transplant in order to make sure Cindy is physically capable of undergoing the procedure.
10/24/2017: Took Cindy in to see her Doctor today to follow up on the Esophagogastroduodenoscopy that was previously done. The results are not good. Varices have formed in the Stomach at the end of the Esophagus in a position that requires the scope to be turned into a J shape to see them. This is not good as it makes doing a Banding procedure almost impossible if they every start bleeding. The Doctor has told Cindy that she wants to go ahead and arrange for Cindy to Visit the Liver Group at the University of Alabama Birmingham and with the Physicians at the University of South Alabama to prepare for and test to see if she is a Candidate for a Liver Transplant. If Cindy is determined by the Physicians at these two Facilities to be a Candidate (able to handle the operation) then the Doctor will get Cindy Scheduled for a Liver Transplant as soon as possible. This will require some time to do as they do extensive testing and evaluations before they will commit to such a serious Operation. Cindy’s G.I. Doctor has said by doing this now, before another bleed happens it may well save her life as another bleed from the new varices in the Stomach may not be able to get them stopped in time before she would bleed out. So this is where we stand as of today. Don't know what Life has in store for my Wife and if she will survive this much longer so asking for Prayers first and foremost. There is so much I want to say but finding words right now is rather difficult. For those who read this, hug your loved ones every day for you never know what tomorrow may bring. TonyB aka @tbonpc
09/07/2017 Cindy finally has a GI Doctor who says she will work with us and the Doctor ordered follow up procedures of a Esophagogastroduodenoscopy which has been done. The results show more varices have formed in the Stomach (not bleeding) and Biopsy were done on areas in the stomach that were of concern to the Doctor. Waiting the results of those. This procedure will need to be done every two years (or sooner if problems arise) for the rest of Cindy's life.
09/02/2016: Cindy had to have 16 units of blood and 6 units of platelets due to Bleeding Esophageal Varices and Duodenum Ulcers caused by Cirrhosis of the Liver. Cindy has never been a Drinker of alcohol or user of drugs but at some time in the past she had contracted Hepatitis C. Cindy regularly volunteers to sit with the elderly, at no charge, who have Alzheimer's disease and other diseases so this could be the source of coming in contact with an infected needle or some other source that infected her. The treatment for the Liver has cost us $89,000 paid out of our retirement savings and she has completed the treatment Plan in June 2017 and the first after treatment blood test taken. Cindy has the 90 day after treatment coming up on 09/15/2017 which should tell us if the treatment was successful or if further treatment will be necessary. Her medical bills are enormous. Along with the Cost of the Hospital and Doctor Bills, is the Drug EPCLUSA by Gilead biopharmaceutical, one of the newest medicines with a 95% cure rate but nothing known to date if it will take a second course of treatment. This is her medical cost so far not including the EPCLUSA which we paid out-of-pocket from retirement savings, $145,000 but not all the Bills have come in. We have paid out-of-pocket for all of her Doctors and Services not billed by the Hospital ($28,000). Those other services are the XRays, MRI's, Anesthesia and Hospitalist (Physicians Assistants). We are struggling to pay the $91,000 hospital Bill from September 2016. So this is why we are asking for Help. Don't want to lose our Home!
She is a mother of a Handicapped Son who has Fragile X Syndrome and has always been there to help others, especially the Elderly. Cindy regularly volunteers to sit with the elderly, at no charge, who have Alzheimer's disease and helps them with their daily life needs by using her own vehicle to take them shopping for food and supplies when the person is able to do so. Cindy is a caring, loving Mother who is devoted to ensuring that her Son has his needs meet before hers and is now in need of the same kind of love that she has given so freely to others. Cindy supported her husband and helped other military wives during those long deployments while her husband was in the Marines by setting up events for the wives and children at the bases they were stationed at. Cindy sacrificed so much to help the families of those who served our nation and now she needs that same kind of commitment from you, the American People.
Will you please show her that in America, People still care about those who have given much and asked for so. Contribute whatever your heart dictates so this Loving Mother and Volunteer so we can pay the Past Due Medical cost and so she can continue to help others. We had to stop accepting GoFundMe donations in July due to Cindy being approved for Medicaid so GoFundMe can no longer be used as Medicaid counts those as Resources which would put her over the Resources Limit placed by Medicaid, and a lot of the cost Medicaid will not go back to cover. We are at risk of losing our Home due to the Medical Bills we cannot afford to pay, so we are asking for anyone who is willing to help to please send a check. Donations by mail are appreciated:
Checks can be made payable to Tony Bertram or Cindy Bertram in the “for” section on the check write: Medical Fund
Mailing Address: 22761 Palmer St. Robertsdale, Alabama 36567
Thank you in Advance and may God Bless you.