August 13, 2025
I just came back from UCLA for another clinic day. It was for a lab, X-ray, a lung function test, and a doctor's visit. This time, I had an appointment with a clinical nutritionist for a weight loss issue as well.
The transplant team changed my medication to combat CMV two weeks ago. High CMV and low white blood cell count have been problems for a while, and it seems to linger longer than we would hope. This new med is the last resort for CMV treatment. If it doesn't work, there is no other, so the immunologist wanted to see if the other med worked first, but it was time to move on. It finally paid off, and CMV was the lowest ever! The white blood cell count went up to the normal level as well. Three Neupogen shots also worked. I need to continue the weekly lab for a while to make sure this trend keeps its course, but it is the first time I feel good about the blood work results.
I will go back to UCLA next month for a 6-month bronchoscopy. So far, my lungs look good on X-ray, so I hope they keep this good condition as long as they can. My goal is to eventually gain 12 more pounds. I should start with one pound at a time..
July 18, 2025
I had a video visit with my pulmonologist at UCLA yesterday. The results of bronchoscopy showed no sign of rejection at this time. I am relieved to hear that! But CMV is still present, in fact, it has been increasing. I have to continue the current treatment for a while.
Ongoing GI issues are also bothersome. I try to eat as much as possible, but it is difficult and it doesn't show in my weight. I don't want to lose any more than this!
The next appointment is in three weeks and I have to go there in person. Another trip to UCLA!
June 20, 2025
I have finally arrived home in Las Vegas! It is very nice to be home, but I have a few worries. Before I left, I took a blood test called the AlloSure test. It analyzes dd-cfDNA, which is DNA released from donor cells into the bloodstream. Higher levels of dd-cfDNA can indicate graft injury or rejection. My score was higher than expected and the doctor is concerned. I had a bronchoscopy scheduled in July, but she wants me back earlier to anticipate and prevent a rejection if it is actually happening. So I need to go back to UCLA next week.
CMV virus is still detectable and I need to continue the current medication. That pushes down the white blood cell count. I need to have Neupogen shots. I am not afraid of a needle, but I don't like to poke myself! And I'm always scared of possible side effects..
The very last face-to-face doctor's visit before I left was with the endocrinologist. Since I have been on steroids, which work as anti-rejection, for so long, I am considered pre diabetic. It is still manageable and I want to keep it that way.
Having new organs is not easy, but this is a gift of life. I do everything that I can to make it work so that I can extend the life of these precious lungs.
May 30, 2025
My progress has been remarkable far as physical strength goes. Pulmonary rehab is wonderful and I can walk much faster without exhausting myself. This allows me to go to grocery stores and restaurants nearby on foot. I love taking a walk outside when it’s cloudy because I don’t have to worry too much about the sun which I need to avoid.
The CMV virus is very stubborn and difficult to get rid of. It was down to almost ‘not detected’ level, but it came right back on the next lab. There is nothing I can do to improve except taking the antiviral medication and being patient. Another stubborn situation is about esophagus ulcers. I had a visit with the GI doctor. This is also where I have to be patient. It’s becoming rarer that the pain wakes me up during a sleep, but it still happens once in a while.
Even with these ups and downs, the doctor thinks I can return home to Las Vegas as planned on June 14! I still have two more weeks of full schedule with doctors visits, rehab, blood work labs, and the three-month bronchoscopy. When I return, I probably have to keep doing the weekly blood work for a while to monitor the situation closely. I look forward to seeing everyone who supported me through this journey when I get back. But my journey is not over when I leave UCLA. In fact, it will be a start of the second chapter!
May 1, 2025
It is already May! I have made a lot of progress in one month. I am still on the neutropenic diet because white blood cells are low due to antiviral medication I'm taking to control the CMV virus. Luckily, it is trending down. Hopefully, it will be one more blood work to reach the normal level. Also, I am pre-diabetic due to steroids. I have to check my glucose level a few times a day and sometimes give myself an insulin shot. So, I try to stay away from a lot of carbohydrates.
On Mondays, I go to get blood drawn in the morning. It gets busy by 7 am, so we get up around 5:45 am and arrive there before 6:30 am. Pulmonary rehab started two weeks ago. It is a one-hour session twice a week on Tuesdays and Thursdays to walk and do some weight training. It was very hard at first, but it is becoming fun now. I even go to the gym at our apartment to get on the treadmill on days I don't have rehab. I managed to gain enough weight to be on the list before the surgery, but I lost it all and more during two hospitalizations. Now, I'm working very hard to regain what I have lost.
Another pulmonologist visit is scheduled for next Monday. I will ask her if I can drive soon. My sister has been a great caregiver since she arrived. I want to start giving her a break whenever I can.
Again, thank you very much for sending messages to check on me! I truly appreciate that!
April 2, 2025
After one week of antiviral treatment through IV, it worked and the number decreased. It didn't show a sign of resistance, so I got discharged with oral medication to take at home. I still have to be careful since my white blood cell counts are very low. I'm on a neutropenic diet which means no raw foods. Also, I continue a low-carb diet to control blood sugar. No raw food is new to me. I can't eat any fruits, salads, or even a BLT. But my sister is very good with her cooking and prepares what I can eat. It's great to have a nice sister!
March 25, 2025
I was discharged on Friday 3/21! It’s been busy with so many meds.. My sister cooks all the meals and I have been enjoying it. Yesterday was the first day to see my doctor after discharge. I did bloodwork and a chest X-ray beforehand. My lungs looked great on the X-ray, so I was very positive about the whole thing. Today, the doctor called to tell me that they found an extremely high level of CMV virus in the results of the bloodwork. A lot of people have this virus, and it’s usually OK for them, but I’m very vulnerable and they are worried that it will damage my new lungs. So I will be back in the hospital either tonight or tomorrow to get treated. The doctor says a week or more.. I’m very disappointed to go back to the hospital for that long, but I’ll accept and keep moving forward!
March 19, 2025
I was supposed to get discharged since everything was going well. They took me off from Epidural around 6 am and that was when I realized how well this medicine worked. I couldn’t even drink a sip of water because it hurt so much. To get prepped for discharge, they needed to remove a few more lines and to do that, I needed get platelets transfusion for my safety. All that while, the body was completely off Epidural and the I couldn’t endure the pain. 5 pain management team doctors came and assessed my situation. They gave me extra strength Tylenol, Oxycodone, and some others to manage the pain, but they decided to keep me at the hospital until I can do it myself at home. I’m still in pain and swallowing makes the worst of it, so I probably won’t be able to eat. I hope my body is getting used to this new organs soon so at least I can eat or drink without this excruciating pain.
March 15, 2025
It has been only a week since I got the call. A late last Saturday night to late Sunday morning, my double lung transplant surgery was performed. It seems like a 10-hour ordeal. I didn’t remember much of what happened on Monday. When I finally became coherent on Tuesday, I started to realize how remarkable it was. First, they took out a ventilator and put me on high-flow oxygen. It didn’t last long and I moved on to low-flow oxygen at 1L by Wednesday morning. By the time Thursday night came, I was on and off oxygen. On Friday, they moved me out of the ICU and I slept without oxygen! I still have several tubes attached and can’t move around on my own, but I have to do rehabilitation, which includes breathing and walking. I am so blessed to have all of you, especially Susan and William. Without you, I wouldn’t be here. Thank you very much for caring for me just like your own family! If I can’t pay it back, I will make sure to pay it forward in your kindness and generosity.
March 9, 2025
I was ready to wait for 8 months or so, but didn't have to. I got the call last night and left Las Vegas around 2:30 am to get to UCLA! Only 12 days on the waiting list and I got called. Right now, I'm in the waiting area and getting prepped for the surgery. There is a chance of a dry run which means the organ is not good enough and the surgery is canceled. I'm really hoping this is a real thing, not a dry run. To be continued...
February 26, 2025
As of yesterday, 2/25, I am on the United Network for Organ Sharing national waiting list!
February 21, 2025
With short notice, my caregiver friend and I took a two-day trip back to Los Angeles during the snowstorm at the end of January to have a bone marrow biopsy done.
After all this commotion, everything went well and my case was finally presented to the committee with a positive outcome. It is not official yet, but I will be placed on the United Network for Organ Sharing national waiting list! Currently, they are working on the insurance situation and the last few test results. I received a phone call from my insurance to confirm that as well.
Even though risks remain with short telomere syndrome and bone marrow failure, I consider myself lucky to have reached this point. Some people spend years just to get on the list or are not even considered due to their other health issues.
Meanwhile, I need to keep my routine to stay healthy and keep gaining a few more pounds. Thank you always for your support!
January 16, 2025
I had many wonderful visitors over Christmas, my birthday, and New Year's Day!
I participated in a lung transplant support group meeting via Zoom last week. There was a lady who was in her hospital bed, just had her transplant surgery ten days prior. It took only two days to get the call after getting listed, but to get on the list was a different story. I heard someone in the group say two years to get on it and the other four years. Because the transplant team needs to make sure a patient is in good health, it takes time to get all the tests done and analyze the results to make a final decision. If they find something wrong, you need to fix the problem before getting considered.
I thought I was pretty healthy since my heart and arteries were good up until the results of the telomere test came back. I had a meeting with the hematologist this week to review the results. It has turned out I have a bone marrow failure. The doctor wants me to get a bone marrow biopsy and another blood work done as soon as possible, so I need to go back to UCLA in 10 days. Hopefully, the fire and air quality situations will be better by then.
I hope this won't be in the way of getting on the lung transplant list, but there is a possibility of that situation... Please pray for me!
December 15, 2024
Hello!
I went to UCLA for more tests and consults from 12/10 to 12/12. My worry was, again, about oxygen supply during the travel, but this time, it went much better than the last time in October. We took a home concentrator for me to use in the hotel and tanks to get to and from the medical center. I had two friends as caregivers this time and it worked very well.
The most important test was catheterization on the heart to check arteries and pressure inside of the heart. In short, my arteries are beautiful and my heart is ready to take on a lung transplant. That is great news and I feel much better about myself!
I also had a consultation with the cardiac surgeon. It looks like my case will be presented to the committee soon since all the test results are coming back. I wouldn't be surprised if there are more to be tested to follow up, though. I am ready to do whatever they need me to.
If everything goes well, I may be able to get on the list when 2025 comes.
November 21, 2024
I have been busy with doctor’s appointments, testing and related paperwork. The second UCLA is going to be a three-day trip in December. I will have two tests and two consultations, maybe a bloodwork or two in between. Since the last trip, I have been using oxygen tanks instead of a portable concentrator to go out, so I need to bring many tanks to make the trip back and forth this time. This week, I participated in the lung transplant support group meeting on Zoom. It was very helpful for me to feel that I am one of many. There were about 50 pre and post-transplant patients and their caregivers on that day. A few are waiting to be on the list like I am, others on the list and some with new lungs. It was good to hear about the experience of those post-transplant patients. I want to get there and help others one day soon!I have been a little more active lately. I got to go out for lunch after 4 months of confinement. I still can’t go too long because of the limited oxygen supply, but it was great to be outside and eat at a restaurant! After I come back from the trip to UCLA, I hope I will have good news of getting on the list.
October 5, 2024
On 10/2, with the help of my dear friend, I finally got to UCLA for the first time to have a consultation! I was excited, but nervous at the same time. My doctor and nurse were very understanding and professional, I felt much better being there. After a 6-minute walk test, I got to see the doctor. Nothing is official yet, but she thinks I am a good candidate for a double lung transplant! I still need to attend several appointments, three being at UCLA. Instead of going back and forth three times, they will try to bunch together in three days in a row so that I go there once and stay for three days to take care of these tests. It will be done in December. After they gather all the data and results, my case is reviewed by the committee and decided if I can be on the list. It seems like a slow-moving process, but now I understand all these are necessary for a safe transplant. My hope is to get on the list when 2025 comes. Please pray for me!
Also, my continued thanks to everyone who has been coming to my house to help me out. I can’t thank you enough!
September 6, 2024
I finally got the first appointment at UCLA! This is a consultation for a lung transplant and it’s on October 2. The doctor will run some tests and determine if I can be a good candidate for a transplant. I need to keep up with all other health maintenance to show that I’m serious about being well. Yesterday, I went to an oral surgeon and had two teeth that were loose and fractured removed. Dental care is very important for whole body health. My condition has worsened since I got discharged. I want to live as normally as possible, but it is difficult at times. Those people who have been helping me, thank you very much!
August 20, 2024
Hello, everyone! I have been home since I got discharged from the hospital on July 21. It has been such a journey since then. I had never thought I would be in this situation, so I wasn’t prepared for anything. Everything took so long and I learned a few things along the way.
Currently, I'm waiting for my house to get sold so that I can show the proceeds as my income to UCLA where my transplant surgery is supposed to take place.
My journey to a lung transplant has just begun. I am trying to keep my routine and spirits up.
