February 16, 2015
Donnie has been home from his LONG hospital stay, October 21, 2014 until February 3, 2015 for a couple of weeks now and doing well. He is much further along in the "schedule" for follow up appointments than he was expected to be, only having to "check-in" at the Transplant Center every other week and blood work on the opposite weeks. His new liver and kidney are doing GREAT!!! and he is recovering from the strokes at a much faster pace than anticipated, in fact a much more complete recovery. We are still having to take each day hour by hour and even sometimes minute by minute, but we are just so thankful to be 2 & 1/2 months post-transplant. Thank you for your continued support and prayers! Gotta run, here comes occupational therapy then speech will be right behind her. Never a dull moment around here!
December 11, 2014
The Rest of the Story……..
For those that have not talked to us or been made aware, in December 1966, Donnie had open heart surgery as an 8 year old boy. At that time nobody had a clue the blood could be tainted with disease, so he was given blood transfusion that contained the Hepatitis C virus and it took it’s time working on his body and especially his liver. In 1998, Donnie started experiencing “flu like” symptoms and being sick a LOT, it took some time and a lot of testing but finally when the doctor (Dr. Gallego) ran the hepatitis panel the truth was discovered, for the last 34 years HCV had been destroying his liver and other organs.
Starting from the time he was diagnosed in July 2000, until October of this year, we have worked with Emory University Hospital where we tried every trial, procedure, and drug program offered to cure the HCV to no avail and then also had tests, reviews, interviews, therapies and submitted to every request made, had all his teeth pulled to prevent infection from gum disease or an abscess, lost 260 pounds and kept it off over 18 months, started fund-raising to pay for expected and unexpected transplant related expenses, again to no avail!
October 10, 2014, Dr. Craig Patterson of Piedmont Physicians Georgia Lung recommended that Donnie go for a second opinion at the Piedmont Transplant Center. The next morning, a Saturday, we received a phone call at 8:20 am, from Piedmont Transplant Center’s Surgical Director, Dr. Pelligrew, he personally interviewed myself and Donnie and said he felt Donnie would be an excellent transplant candidate and immediately got the ball rolling! October 21st, Donnie began experiencing severe complications from his liver disease and was admitted at our local hospital in Marietta (Kennestone Hospital) within 10 days he was started on dialysis and other life sustaining treatments. November 11th, a coordination of care was completed and Donnie was moved by ambulance from Kennestone Hospital to Atlanta’s Piedmont Hospital for assessment and treatment of his liver disease and co-morbidities. November 19th, Donnie was sent home and started on out-patient dialysis and Donnie was already listed as highest priority for a liver and kidney transplant by November 21st.
Each week, Donnie has had to go the Transplant Center for lab work and updates on his MELD Score (Model for End-Stage Liver Disease), so when he went for bloodwork on Wednesday, December 3rd, his MELD Score was 43, very dangerously high and beyond the point where most hospitals will consider doing a transplant since the patient is so ill at that point. His IRN/PTT or blood clotting factor was over four and should normally be lower than 2, which is an indicator that the patient could possibly bleed to death before their blood clots. Donnie was immediately admitted to the hospital with the plan to not release him until something happened, a transplant or death, there is no easy way to put it, he had no expectation than about 12 days. On Sunday, December 7th, we got the phone call at 12:50 pm that we had been waiting for at least 14 years, there were potential donor organs! We were told to wait to hear more details and if the organs were viable and good matches for him. Exactly, three hours later at 3:50, the second call came and it was time to gather and notify family and friends. We were instructed that the transplants could last from 5 hours to 12, due to his lack of clotting factors and problems getting the IV started, we expected a very long surgery, just a normal liver transplant requires 5 to 7 hours and we were waiting for both the liver and kidney. During the surgery we got two updates, once when the liver was in place and once when the kidney was added and the “fine tuning” process began. Twice Donnie experienced severe heart arrhythmia and almost died on the operating table, he will be undergoing some additional testing now to check for any issues with that problem for the future, but so far he has not experienced any additional changes or problems with the heart’s rhythms. The total surgical time was 6 hours and a half. Less than 56 hours later, here he is being assisted with his first physical therapy, sitting on the side of the bed and standing.
Wednesday, 12/10/2014
What a victory and miracle we have!
November 22, 2014
We are FINALLY LISTED FOR TRANSPLANT!!! It has been such a long, physically tiring and emotional road to this point. We have been aware and dealing with liver issues since July 2000 and have done all we could to comply with the requirements to be placed on the list for transplant, Donnie lost 250 pounds and has kept it off over 18 months, had all of his teeth pulled (to prevent infection) and was just in the hospital from October 21st to November 19th, for multiple reasons and is now on dialysis at least 3 times a week.
We had been dealing with Emory University Hospital and Transplant Clinic for 14 years and never was listed, one of Donnie's doctors recommended and referred us to Piedmont Hospital for a second opinion and evaluation. We received a phone call from the Surgical Director the next morning, October 11th (yes, on a Saturday) and in less than six weeks he is officially listed with UNOS (United Network for Organ Sharing) for a liver and kidney transplant. Donnie's MELD (Model for End-stage Liver Disease) is currently 35, which gives him approximately two months life span without an immediate transplant.
It has been a very long and tiring journey!! We are so excited to finally be listed and are hoping to be able to set up more fund raising activities soon. Please consider making a donation to help with the expenses we already have accumulated and those we face in the immediate future. Just the transplant surgery and hospital stay will cost at least $650,000 and then the medications he will be required to take the rest of his life are not completely covered by insurance, some cost as much as $600 and $1200 per month.
Thank you for your prayers, encouraging comments and support! We daily walk, step by step in faith and lots of prayer.
July 11, 2014
WooHOO! We have finally reached our first $1,000 mark and have gone over it, we know of at least $220 more that we are waiting on coming in. We are being so blessed my our family and friends. We have been a little slow lately getting new events and fundraisers scheduled, but are getting back into the swing of things now that my health has improved and we are getting our transportation situation worked out. There have been so many blessings and emotional support lately, I can't even share them all here. We appreciate everything that has been done for us and are looking ahead to a much healthier life to come for both of us.
Donnie's oral surgery has been rescheduled for August and will be the final step before placement on the transplant list. If things go as we have been lead to believe, we could be celebrating Thanksgiving with a LOT more to be thankful for and New Year's with a new outlook, instead of dreading doctor appointments and blood tests. Hopefully, by then I will also be finished with my Cardio Rehab, right now that is kicking my rear!
Thank you for all your financial, emotional and prayer support, our Faith, Family and Friends are keeping us encouraged and able to face each day. Please keep praying for us.
June 17, 2014
Donnie is still waiting on the Oral Surgery to be done. Having issues with insurance and the oral surgeon's office pre-certification. Still having transportation issues. Very frustrated! Asking for prayers.
May 19, 2014
Thank you to all that are making donations, checking on us and praying for us. The oral surgery is scheduled and when it is done, we move on to the transplant list. Daily, step by step!
May 7, 2014
Well, weekends are not agreeing with us lately! Sunday a week ago, our car died and this past Sunday, I had a heart attack and discovered I (Lori) had three blockages. We didn't get to attend the Johnny's Pizza event in Canton on Monday, anyone that missed us there, Thank You for your support. I am now back home and on the mend, waiting for the doctors decision on how to treat the remaining blockages (only one stent was put in) and waiting for Donnie's oral surgery. Please keep us in your thoughts and prayers, it has been a long journey and looks like we are getting ready for even more adventures while on this journey. Thank you for all you have been doing to support and encourage us!
April 30, 2014
Lots of things happening at the same time. Donnie has gained weight, from fluid build up, so today the Pulmonologist increased some of his medicines. Our car died over the weekend and will cost too much to repair considering the other issues it already had. The oral surgeon's office still has not set up the surgery date, that seems to be the last hold up for the liver transplant. We were at Emory this past Friday and the kidney transplant specialist has cleared Donnie and said NO KIDNEY TRANSPLANT REQUIRED, that is such GREAT news!
Right now we only have the two remaining Johnny's Pizza nights scheduled, we are looking for new fund raising ideas and dates. We are also praying about our transportation situation.
Thank you for all your prayers, support and encouragement!
April 21, 2014
We are excited as we are moving forward, Emory called us today and have approval and financial assistance available for the oral surgery that Donnie has to have before the liver transplant can be done. Lots of doctor appointments coming up and now the oral surgery will be scheduled soon. Anyone with ideas for fund raising events please let us know, we really have to get on the ball. At the last event Donnie prayed with a man that had Hepatitis C, when he went back to the doctor just a few days later, he was told there was NO MORE HCV (hepatitis c virus) found in his blood work. We keep believing and walking in FAITH, please keep the prayers, encouragement and support coming.
April 18, 2014
Donnie has had two trips to the hospital (spending a total of 14 days) within the last 8 weeks. The first being the acute kidney failure and the second being breathing and oxygen level issues, both directly related to the end stage liver disease he is experiencing. We are so thankful for the love, encouragement and prayers we know have been expressed for him during this time. We are a long way from meeting our needs and goals for the liver transplant and appreciate those that have assisted with, planned and organized and participated in our firsts fund raising events. We are looking forward to seeing those funds being posted toward our goal. Thank you for all the support and encouragement we have been receiving!
April 13, 2014
Thank you to all those that came out and enjoyed our time together at The Gate Cafe and Coffee Shop in Cartersville. We had a great time! Thank you for your support!
April 9, 2014
We enjoyed the Fund Raiser at Johnny's Pizza on Monday, the music group was very entertaining. We hope that we will have even better turn outs and more fun with the next two events there. Thank you to all who came out and supported the event.
Thank you to those that have been making donations to support us. The need is great but our friends, family and GOD are greater!
March 20, 2014
Many of you know that Donnie has just been approved by the Liver Transplant Team at Emory University Hospital, but before the transplant can be done, he must have several teeth extracted and have his kidneys re-evaluated. At the present time Donnie's kidneys are only functioning at 28%, even less than when he was released from Kennestone Hospital on 3/3/14 after 11 days for acute kidney failure. This recent decline in his health is directly related to the liver failure and the doctors are believing that the liver transplant will help strengthen his whole body and organ systems (lungs, kidneys and heart issues). We appreciate all the good thoughts, prayers and expressions of love and concern, thank you to each of you.
