September 28, 2023
9/26/2023 - I had an appointment at the transplant clinic. The labs came back and I am still improving according to the doctor. I had some more staples removed this week, but still have 23 staples towards the center of my stomach/chest. I have two less prescriptions to take. :)
9/27/2023 - I had a CT scan of my heart and will see a cardiologist in a month or so. This was a precautionary test, because of some issues they thought they saw during surgery.
The in-home nurse, PT, and OT are now completed. Now I just need to do the exercises on my own. My wife, the care-giver/drill sergeant, will make sure I do them.
September 13, 2023
9/11/2023 - Had a doctor appointment at the Transplant Clinic. It went well. They said I am doing well in my recovery process and more labs. The labs came back with more improvements, showing my progress. Surprising enough I haven't had much pain so far during recovery.
9/12/2023 - Had a cardiologist appointment today. Overall I am doing ok, but ordered a CT scan of the heart, just as a precaution. They believe my heart rate is high (between 83-93). I googled the normal heart rate and it is between 60-100. The cardiologist would like mine to be closer to 60.... sorry my athletic days are long gone.
I have a nurse coming once a week to check on me, PT 2 twice/three times a week, and OT once a week. Then have an appointment with Transplant clinic once a week, that takes over an hour to get to there and tolls that are unheard. All this and my wife and I have custody of two grandchildren, ages 11 and 8. My wife is a god-send for me and the grandchildren.
September 2, 2023
08/30/2023 - 7 days after surgery - the doctors are hoping to send me home today. Waiting on morning labs to decide. Labs came back, one was slightly elevated, so they decided to keep me another day or two.
08/31/2023 - I got to leave the hospital this evening - 8 days after surgery. Morning labs came back and all is well. The doctors are amazed how well I am doing and decided to send me home. I am still tired, sore, and swollen, but happy to be home. Btw, the normal hospital stay for liver transplant is 14 days.
09/2/2023 - My wife, Sherry is doing a wonderful job with my caregiving. LOTS of meds, several times a day. It has been nice having home cooking. Arms are still sore from shots in hospital and not moving much.
August 27, 2023
Update from Gary's Daughter Amy: On 8/23/23 my dad received the gift of life. He received his Liver Transplant!!! He went into his roughly 9 hour surgery. Doctors told us that he is such a strong fighter. He remained stable and vitals were great through the entire surgery. Surgery was a success. Our family is so thankful that he finally received his transplant.
As I write today (Sunday, 8/27) my dad is doing well. He is tired mostly due to not being able to sleep well at night. He says he is sore a little from the incision but otherwise feels good. He wanted me to look at it today - but I said I'd wait a few days to take a look. The transplant team is in checking on him several times through each day. He is still in ICU at the moment while they are waiting for a regular room on the transplant floor to open. He seems to be in good spirits. He was delighted to have a regular meal for the first time today - Salisbury steak and rice for the win. :)
I'll do my best to keep this site updated as he continues his journey to recovery.
August 19, 2023
On 8/18/2023, had more lab tests (only 3 vials) to help determine my MELD score. That, along with many other factors, will be evaluated next week and a new MELD score will be determined. Then at 5:30 PM I got a call to be the backup for a liver transplant. What that means for me is, I have to wait for a second call, and no eating until I am released. Well of course, I didn't eat lunch, and was ready for dinner, and now had to wait for a second call which is usually 6-12 hours later. Only good thing was that I didn't have to go to hospital and wait there. I got the release call at 2:30 AM. Oh well, maybe soon I will get a call as the primary, and it will happen. Until then I just wait it out, wondering when I will get the next call and if I will be the primary.
August 14, 2023
No new calls to be a backup or primary on the liver transplant list, since the first few weeks I was on the list.
On 8/7/2023, I met with my Hepatologist. He said things are looking good so far. I will get some added MELD points on August 22, 2023 and that will put me higher on the list, and make me eligible to be a primary candidate. He expects that I will have a liver transplant before the end of the year, and maybe before I see him again on November 27, 2023.
The one cancer spot is gone thanks to the TACE procedures. There is a very small second spot they will continue to watch, but as for now they are not concerned.
On 8/11/2023, I had another CT scan and MRI, which the transplant team will use to to help give me the additional MELD points, along with a list of things they use to calculate the MELD points.
My daughter showed me a picture of a friend of hers who recently had a partial liver transplant from a living donor. The scars are big, (as the surgeon told me it would be). It's about 12 inches long and goes from bottom of breast bone, and around the rib cage. I think I am ready for the transplant to happen, but still nervous.
May 18, 2023
I had lab work done on 4/28/2023, a MRI on 5/5/2023 and met with my Hepatologist on 5/8/2023. He informed me that it looks like the second TACE procedure did it's job, but they are still watching a second spot on the liver and the liver cirrhosis. It's been over 3 weeks now since I have received any calls about being a backup to the primary liver transplant patient. The hepatologist did say in August, I would be getting more points added to my MELD score, which would put me much higher on the transplant list and able to be a primary recipient. :)
April 10, 2023
On 4/4/2023, I had the second TACE procedure. The surgeon said this surgery went well again, and he hopes it will take care of what was left of the cancer. This procedure was a bit harder on me, by leaving me a bit more tired and a bit more sore. I didn't feel like eating much for a few days until my stomach was back to normal. I need to schedule an MRI, and labs for around 5/4/2023, and then a follow-up appointment to go over those results.
March 31, 2023
On 3/29/2023, I was notified by Medstar Georgetown Radiology department doctor that my last MRI showed that the TACE procedure did not get all of the cancer. They have now scheduled another TACE procedure for 4/4/2023 to hopefully take care of the remaining cancer. I will probably get another MRI about a month after the second TACE procedure to see if the cancer is still there. There is still no guarantee that another cancer mass won't show up.
March 28, 2023
On 3/27/2023 at 1:20 AM, I got a call from Medstar Georgetown University Hospital transplant coordinator. She told me I was a backup liver recipient and that the surgeon needed me to come into the hospital and wait to see if I would become the primary. I got dressed, while my wife called my daughter. She woke her up and asked if she would ride to the hospital and stay with me. Of course she said yes. I picked her up and headed to the hospital. We arrived at the ER about 2:30 AM. They got me a bed and a chair for my daughter. I had two chest x-rays, EKG, and 13 vials of blood drawn. The nurse came about every two hours to check my vital signs. I had lots going through my mind. This was the 4th time I was a backup since being put on the transplant list, but the 1st time I had to go into the hospital. Was this real? Was this the time I would get a new liver? I was both scared and excited. The longer we waited the more I thought I might be getting a new liver. I think even some of the nurses thought I might be called at any minute to head to the OR for the transplant. We waited about 12 hours (2:15 PM) in the ER before we got word that the primary was in surgery and we could go home. A long night/day to say the least. This just turned out to be a dress rehearsal for the real thing. I am happy for the primary, but sad I am still waiting. My turn is coming.
My next thought was how many times will I have to pay for the ER visits, each time I am a backup recipient? This could get expensive, especially when the surgeon told us some of his patients have been a backup 10-15 times. More costs we didn't think about and were not included when they told me about the $150,000 that I am responsible for.
March 21, 2023
I recently learned I have liver cancer at 64 years old. This began my 2nd life altering adventure. The first is when my wife and I received custody of my grandson (now 10) and his sister (now 7) about 5 or 6 years ago. Now the 2nd life altering adventure, I went for an annual physical back in October of 2022. At that time, lab work showed I had slightly elevated liver enzymes. The doctor recommended I get an ultrasound. The ultrasound showed I had a liver mass and liver cirrhosis. From there, I was referred to an Endocrinologist, who setup an MRI of the liver and a referral to Medstar Georgetown University Hospital. The MRI showed I have a 4cm mass and a smaller mass and that I do have cirrhosis. The 4cm mass they are sure is cancer.
Something you may not know, I am not nor have I ever been a heavy drinker or smoker. Actually, I haven’t ever smoked and was not considered a heavy drinker even in my 20’s. I pretty much stopped drinking sometime in my 30’s and 40’s, only having an occasional beer at the bowling alley once a week.
In January of 2023, things started to move at a much faster pace. I was referred to a Medstar Georgetown University Transplant Hepatology doctor. He sat me down and told me a bit about the cancer. There is a treatment for the cancer, but they are pretty sure it would come back at some point, so his recommendation was to get put on the transplant list because of the cancer and cirrhosis. He referred me to the Interventional Radiology group so they could treat the cancer immediately. The procedure was called Transarterial Chemoembolization (TACE). The surgery happened on Friday, 2/10/2023. The surgery went well and the doctor was very pleased after the procedure but would need to keep an eye on it by checking with continuing MRI/CT and labs that will be scheduled.
The following Wednesday, 2/15/2023, I went for the Transplant Evaluation. It took over 4 hours. I met with the Transplant Coordinator, Transplant Hepatologist, Transplant Surgeon, Transplant Anesthesiologist, Transplant Nurse, Social Services, Nutritionist, Physical Therapy, and of course the Lab. This group of specialists have a team review every Tuesday. I should learn more sometime between February 21 and February 22, 2023.
During the Transplant evaluation, I learned that my insurance would only cover 70% of the transplant cost and I am responsible for 30%. I was told the cost of just the liver transplant will be about $500,000, which means I am responsible for $150,000 for the remainder of the transplant. We all know there are additional costs prior and after surgery, and medications that need to be taken the rest of my life following the transplant. I am told those medications are expensive.
On 2/22/2023, I learned I was put on the the liver transplant list. I was both excited and nervous/scared. I didn't expect to get any calls from the transplant coordinator because I was low on the list. Within the next week and a half, I was called 3 times as a backup for the transplant and once more the following week. I remain hopeful that I will receive a call and be the person to receive a liver transplant.
