Cuong Needs Your Help

September 12, 2017

Over the past month things have been positive and steady for Cuong. He continues to have doctor's visits each week with Dr. Potter. The incision site for his kidney transplant has healed completely. The incision site where his peritoneal dialysis catheter is still healing. We never found out a concrete answer on why Cuong has extra fluid in his abdominal cavity, but there are no signs at this point that the fluid is excessive. Having been on dialysis for so long it is possible he had the extra fluid before the transplant but it was undetectable. The nephrologists are pleased with Cuong's progress, so they have decreased appointments with the kidney doctor's to once per month. Cuong has two main issues at this point:

1) He needs to gain weight. Cuong was always a very slim person, so it was no surprise that post-transplant he returned to his pre-dialysis weight. However, he lost more weight that anticipated. Cuong is eating a high protein, high calorie diet to try to pack on additional pounds. Three weeks of this diet he has yet to gain any weight, but he has not lost any weight either.

2) Cuong will be eligible to go back to work in 2 weeks. Please pray with us that he will be physically and mentally strong enough to return to his normal duties.

Please continue to reach out and contact Cuong whenever you think of him. Support from friends and family has played an important role in his recovery.

August 14, 2017

We had a positive and encouraging doctor's appointment on Friday with Dr. Potter. Cuong has had additional fluid build-up in his abdominal cavity. The cause is unknown and after several tests specifically looking at the function of the liver, all test results came back negative and showing normal liver function. In another 3-4 weeks, a CT scan will be completed to see if there is still fluid in the abdominal cavity. Dr. Potter hopes the issue will resolve itself. As for right now, there is nothing else we can do.

Cuong's new kidney continues to function well. In another 3 weeks, Cuong will no longer have a weight restriction and can begin working towards returning to work perhaps at the end of September. A lot can happen in the next four weeks, so his return to work is not definite. However, we hope his body will continue to heal and strengthen.

On Saturday, I (Uyen) visited with Cuong's donor. He unfortunately is still in the hospital in specialty rehab. His health has significantly improved over the past 3 weeks. However, after dealing with pneumonia, he is not fully back to normal. He had been on a respirator for quite some time and completely unable to eat, so he is rather weak. Each day he completes some physical therapy and works with a speech pathologist to regain the ability to swallow. Once he passes a swallow test, he can move from a feeding tube, to soft foods, and eventually whole foods. Doctor's anticipate that once he is eating normally, he will regain physical strength and kidney function.

We ask that you pray for our donor as he has sacrificed so much for our family. We hope he will be able to eat again soon as well as go home because no one likes being in the hospital for an extended time.

August 9, 2017

On Friday, Cuong had his bulb drain removed. Dr. Potter stated that there is some fluid in the lymphocele. However, the size of the overall lymphocele has decreased significantly. At this point, it is riskier to keep the drain in than to try to extract the remaining fluid. He will continue to monitor the situation.

At Cuong's latest nephrology appointment, the doctor's noted that Cuong's red blood cell count has been low for several weeks. They are starting him on a shot called Aranesp that will encourage the body to produce more red blood cells. This will be administered every two weeks.

August 3, 2017

Dr. Potter removed Cuong's peritoneal dialysis catheter from his abdomen on Monday. It was a successful surgery. However, recovery has been quite painful. The procedure was laparoscopic, so the pain is not on the outside at the incision. It is instead inside which makes it more difficult to relay what exactly is hurting. Being in such pain makes it difficult to eat, drink, and sleep. I ask that you please pray with us for pain relief! Cuong was making great headway with physical therapy prior to the procedure, and I am hoping he can continue to do so in order to be back at work in September.

July 28, 2017

Post-op day 27 -

On Tuesday, the nephrologist discontinued 1 of the 3 high blood pressure medications Cuong has been taking. He has not had a significant blood pressure spike since Tuesday, so he is hopeful the change ca be permanent.

Dr. Potter completed Cuong's stent removal yesterday. The procedure was a bit uncomfortable but the discomfort did not last long. Cuong reports that he does not feel any different, but he was able to have longer uninterrupted sleep last night as he did not have to urinate as often.

On Monday, Dr. Potter will remove Cuong's peritoneal dialysis catheter from his abdomen. Although this is a one-day outpatient procedure, Cuong will have to be under anesthesia which makes us a little bit nervous. We ask that you pray with us for a successful procedure, steady hands and clear mind for Dr. Potter as he completes the procedure, and a pain free recovery. We will probably be at ETMC almost the entire day, but get to come home early evening if all goes well.

Lastly, next Friday Dr. Potter will remove the bulb drain from Cuong's abdomen. The procedure is completed in the doctor's office and should be relatively simple, especially in comparison to the other procedures that have occurred. All in all, three procedures in nine days. The good news is that this time next week, Cuong should no longer have any extra medical devices attached to his body! True freedom, and maybe a sense of normalcy.

July 26, 2017

Great news - our donor is officially out of ICU. He has moved to a rehabilitation center where he will receive physical therapy, occupational therapy, and speech therapy (for swallowing). We are SO grateful for his continued progress. Being in a rehabilitation center will no doubt be less stressful for him and his family. We hope the improved environment will allow him to make progress quickly.

July 26, 2017

Post op day 34 -

It has been one month since we Cuong left the hospital - God is good! Our donor is still in the hospital, but he is off the respirator and breathing on his own. We are all very relieved his health is making positive progress. Thank you to everyone who has been praying with us on this issue.

Cuong still has the bulb drain in his abdomen. It is unclear how long he will continue to have it. Dr. Potter said fluid collection does happen in many patients. After a transplant surgery, the lymphatic system being disrupted sometimes does not move and absorb lymphatic fluid appropriately. Unfortunately, fluid collection may happen again after the drain is removed - actually quite likely at an ~60% chance. If it does, then the surgeon will go in laparoscopically to deal with the issue. We'll cross that bridge when we get there.

The rescheduled stent removal is this Thursday. It is an in-office procedure, so we do not expect any complications. On Monday, Cuong will be admitted to ETMC for an outpatient surgery to remove his peritoneal dialysis catheter. This is a big deal as the new kidney is performing well enough that Cuong will not have to go back on dialysis (at least for now, and as long as the kidney keeps working). We'll arrive at the hospital Monday morning and be there most of the day.

Overall, Cuong is feeling better. He is eating well. Labs come back each week with mostly positive results, just a few tweaks in medicine here and there. He is still completing physical therapy and getting some of his strength back each week.

July 19, 2017

Post op day 28 -

Our donor is still in the ICU unit of the hospital. However, he is improving little by little each day. The doctors have decreased his use of the respirator to only evenings while he is sleeping. Sedation has decreased and he is much more alert. It is unclear how much longer he will need to be in the hospital. Doctor's are only taking it day by day at this point.

On Friday, Cuong did not have his stent removed. Unfortunately, CT scans showed significant fluid collection in his abdomen. He was admitted into the hospital for outpatient surgery where radiologists aspirated (removed) a fluid from his abdomen. Then, a bulb drain was inserted to continue pulling fluid over the next week. The bulb is shaped like the pump on a blood pressure pump. It is flattened, closed, and then the suction is what pulls the fluid out of the body. We are told that the fluid was sent for testing and it seems as though it was made up of old blood (from the surgery) and normal fluids that we have in our body moved around by the lymphatic system. This Friday, Cuong will go back to the hospital for another CT scan to see how much fluid is still in his abdomen. The drain has removed very little fluid over the last day, so we are hopeful this is a good sign and the drain can be removed soon. The stent removal has been rescheduled for next Friday (in another 8 days).

Lastly, I want to express my sincere appreciation for those who have called, emailed, sent cards, and contributed to his kidney fundraising campaign. Cuong is unable to have visitors or be out in public so your communications help connect him to the outside world. I'm sure you can imagine how slow the day can seem when housebound. Please continue to keep in touch!

July 13, 2017

Post op day 22 -

Although our donor made it through ileus complications, he is unfortunately still in the hospital having contracted pneumonia while in the hospital. He has been in critical condition for over a week. His chest x-rays yesterday showed some improvement, but he is having to go through dialysis to improve his blood chemistry. We are praying for healing and recovery from his complications. His family has gone through a lot and we hope they receive relief soon.

The results of Cuong's ultrasound came back clear with no indications of a blood clot. His swelling as gone down significantly over the past five days and seem to be just a side effect of the surgery. Cuong's labs have been pretty good during our last two doctor's visits. Unfortunately, his iron and phosphorous levels are low. Medications have been increased to deal with both issues. The reduction in high blood pressure medication was too much, so he is now taking 3 pills, 3 times per day (total of 9 pills per day) instead of 2 pills, 3 times a day. Physical therapy is going very well as Cuong is moving with less pain each day.

Tomorrow (Friday) is a big day for Cuong. Two weeks ago, through a cat scan, we learned that Cuong has some lymph fluid on his new kidney. This is normal and usually clears up on its own. However, if it hasn't cleared, then Cuong will need to go through a procedure that releases the fluid into the peritoneal cavity (abdomen area) where the fluid will then be absorbed into the body. Cuong is scheduled for a cat scan tomorrow to determine the next steps. Secondly, the stent that was placed into the new ureter will be removed through the bladder tomorrow. Inflammation and swelling should be reduced significantly by now and the new ureter should be functioning well on its own. It is my understanding that a cystoscope (a camera) is placed into the bladder. Graspers are used to grab the stent and pull it out through the bladder which can be seen through the camera. We are told there may be some discomfort, but because this is an outpatient procedure we are hopeful the pain will be minimal.

After Friday's appointment, we should be half way through the major challenges of post-surgical care. In 2-3 more weeks, Cuong should be able to drive again. Hopefully, he will also have his peritoneal dialysis port removed as well making dialysis a thing of the past!

July 7, 2017

Where did they put your new kidney?

This is a question we've been asked frequently. I am not a medical professional, so my explanation is somewhat simple. I encourage you to google "kidney transplant" for a more details.

In general, the existing kidneys are not removed and replaced with the new kidney. Both existing kidneys stay in place (on the back side of the body) and function as they did before - even if that means only functioning at 5% which is dad's case. A new cavity is created on the lower right side of the abdomen for the new kidney (only 1) to sit in the pelvic region of the body. It is rare to receive 2 new kidneys. The renal vein of the new kidney is connected to the inferior vena cava. The renal artery of the new kidney is connected to the aorta. A new ureter is connected from the kidney to carry urine to the bladder. The incision site is then closed up using surgical glue. From the outside, you can actually feel the outline of the new kidney sitting in the abdomen.

Because Cuong received a living donor kidney, the new organ began to work immediately but at a low percentage. With each day, the new kidney responds to the anti-rejection medications and "wakes up" more and more. Pretty amazing!

July 6, 2017

We heard from the donor's family and he is doing well after having surgery for ileus. He developed adhesions from a previous surgery which were caused his bowl to turn preventing him from digesting his food properly. Thank you for praying with us. He is going to be fine - answered prayer!

July 5, 2017

Post-op day 14 - Today we drove to Tyler to see the nephrologist. While there, we met our new nephrology nurse, Cindy, who has been helping transplant patients for over 14 years. She explained in detail the results of Cuong's lab work and was quite helpful in answering our questions. Cuong's phosphorous levels were slightly slow, so they increased his phosphorous medication. The nephrologist, Dr. Diaz, examined Cuong and was slightly concerned about the swelling he has been experiencing in his legs. She sent us for an ultrasound to look for possible blood clots. We should have the results of the ultrasound in 24-48 hours.

July 4, 2017

Post-op day 13 - Cuong has been to Tyler three times in the past 13 days to see the surgeon, Dr. Potter, since leaving the hospital. With each visit, lab work is completed first at East Texas Medical Center. The results are sent to Dr. Potter who then evaluates if any changes in medication need to be made. In the past week, Cuong has been able to reduce his nausea medicine down from 3 times per day to 2 times per day. Additionally, Dr. Potter has reduced Cuong's blood pressure medicine from 4 pills 3x per day (12 total) to 2 pills 3x per day (6 total). Other medicine changes have been made, but the physical impact of those changes are unclear to us at this time.

We received news on Sunday that our donor is in the hospital with ileus, an obstruction of the intestine that prevents food from moving through the intestinal track as needed. Please pray for his recovery.

June 29, 2017

Post-op day 7 - Cuong has been home for 2 days. He is happy to be out of the hospital, but the transition home has been challenging. Cuong is experiencing all of the normal post-surgery challenges - pain of the surgical area, lack of sleep, changes in the way food taste, and trouble staying hydrated. Thank you for all your cards, phone calls, and text messages. They have all been received and served as encouragement to us during this time. If we haven't been able to get back with you, just hold tight - I promise we'll get back to you eventually! It has been an intense flurry of activity for over a week. The home health nurse visits two times per week for about 1.5 hours. We travel to Tyler to have labs drawn and see the nephrologist on Tuesdays; labs drawn and seen the surgeon on Fridays. The Tyler appointments take about 8 hours round-trip. Physical therapy is on Thursday for about 1.5 hours and may increase as needed.

The surgeon is pleased with Cuong's progress. His creatinine level was down to 2.3 (from 14 the day of surgery). The lower the number, the better. We learned that a stint was placed in the ureter between the new kidney and the bladder. The stent holds open the ureter for fluids to flow properly and is needed due to a high level of inflammation inside the body. In 3-4 weeks, the inflammation will subside and the stint will be removed through the bladder. It is a non-surgical procedure and should only take 5 minutes or less.

Each morning and evening before meals, Cuong measures his blood pressure, heart rate, temperature, and blood sugar levels. These metrics help him determine if any adjustments need to be made to his prescribed daily medicines. His blood sugar has been normal, so he has not needed insulin since leaving the hospital. The nephrologist and surgeon additionally analyze Cuong's labs two times per week and make changes to his medications as needed. It is a constant balancing act to maintain healthy blood pressure and new kidney function.

Thank you for your continued prayers. Cuong hopes to have visitors in another 6 weeks once his immune system is a bit more improved.

June 27, 2017

Post-op day 5 - We are home! The day started on a positive note with Cuong getting a few hours of sleep and eating a good breakfast. The nurses removed his IV and transitioned him to oral pain medication. Unfortunately, he experienced severe nausea from the oxycodone and it took most of the day to get it under control. In order for Cuong to be discharged today, the nurses needed to scan his bladder several times to make sure it was functioning properly. A new ureter connects the new kidney to the patients bladder. There are several sutures connecting the ureter to the bladder. If the bladder does not empty properly, then the sutures could come apart causing leakage into the body cavity and more surgery to correct the problem. Cuong had to increase his water intake in order to complete the 3 required scans. For a regular healthy patient, drinking a few glasses of water is not difficult. However, as a peritoneal dialysis patient, Cuong had to restrict his water intake every day. The increased water consumption was really hard for him as his body is just not use to drinking more than 2 or 3 glasses a water per day. He ultimately was able to complete and pass the test.

Our new post-transplant coordinator, Aubrey, helped organize all of Cuong's new medications and spent about an hour with us explaining how each of them work. There is A LOT to learn. All of the different names and medical terms are sort of jumbled in our heads. Hopefully, it will get easier with time. Aubrey reiterated the importance of the immunosuppressant drugs that Cuong will have to take 2 times per day for the rest of his life. In total, he takes approximately 30 pills per day. For the first month, she will help setup his pillbox during our weekly visits to Dr. Potter's office. Then, she will transition that responsibility over to us. It is overwhelming to have to take so much medication. At the same time, it is amazing that there is even medicine to trick the body into accepting an organ made up of cells from another human being!

At about 6 pm, our day nurse removed Cuong's central line (a long tube inserted into a large vein in the neck to give medicine). It was painful to have it removed but very freeing to no longer have a port coming out of his neck. We took a brief walk around the hospital wing, signed all the discharge papers, and headed home.

Cuong is now settled into his own bed and sleeping peacefully. It is much quieter at home than in the hospital. We all hope to get at least a solid five hours of sleep.

June 26, 2017

Post-op day 4 was just as difficult as day 3. Cuong, unfortunately, was unable to get a good night's rest. He has an amazing day nurse who was kind enough to minimize his disturbances to allow him to get some sleep this morning. At around 3 pm, he woke up from his nap feeling a little bit better. The change in his sleep schedule did not allow enough time for him to get in the same number of walks as the days prior. However, he was able to get around without the walker today. Small blessings!

The high dosage of steroids prescribed has increased his blood sugar levels, so insulin was added to his list of medications. High blood sugar is very common in transplant patients. When he goes home the dosage of steroids will decrease significantly and *maybe* his blood sugar levels will return to normal. Here's hoping...

Our time in the hospital has been interesting as we have learned many things about ourselves as individuals. God has reminded us we need each other and should rely on each other. He has shown us how little we actually control and the beauty of letting go.

Thank you for keeping us in your thoughts and prayers.

June 25, 2017

Post-op day 3 was a difficult one. Cuong is no longer restricted to bed rest, but it is painful to move around. Today, the nurses reduced his dosage of pain medications which may have also played a part in his discomfort. The surgeon stopped by for a visit and has decided to keep Cuong in the hospital past the weekend.

An ETMC dietitian and diabetes specialist visited with us about post-transplant diets. The future includes a lot of counting and tracking. Cuong will have to hit a target number of carbohydrates consumed each day as well as track his blood sugar since some of the medications can unmask underlying diabetes that were not apparent pre-transplant.

We ask that you continue praying for us as each new day is a mystery. Our social worker told us last week that things were going to get worse before they get better. This has indeed been true. We hope and pray for less pain each day, departure from the hospital sooner than later, and a successful transition to all the new medications.

June 24, 2017

Cuong is recovering well. Today he was able to get out of bed and take a brief walk around the hospital wing. Being much more alert, he was also able to sit up for a while to read, watch TV, and eat dinner. The doctor anticipates he will be in the hospital for a few more days. We are grateful for all the wonderful nurses at East TX Medical Center who have helped with pain management, meals, and the general post-transplant transition.

June 23, 2017

Today Cuong was alert and able to talk with the nurses. Our surgeon, Dr. Steven Potter, visited with him this morning and was happy with the progress that he has made. It seems the new kidney is working (although not at 100% yet)!

Cuong is on strict bed rest for the next 48 hours. He is in quite a bit of pain and unable to eat solid foods. However, he was able to have liquids today so lots of broth, water, and jello for meals. Due to his suppressed immune system, he cannot have visitors at this time or gifts of flowers and plants.

My mom and I visited with the donor and their family today. The donor were able to eat and take a short jaunt around our wing of the hospital. Everything looked good, so Dr. Potter cleared them to go home.

We thank everyone for their prayers, phone calls, and text messages. I (Uyen) have passed on your messages to both my parents. We are so lucky to be part of an amazingly supportive community.

June 22, 2017

What a crazy 24 hours we have had in Tyler, TX. All I can say is God is GOOD. Surgery went well for both the donor and Cuong. Surgery began around 2 pm and was completed by 5 pm. Cuong spent the evening in recovery and was finally moved to a private room. He is awake and all vitals are strong at this point. We'll know more tomorrow on how the new kidney is responding. THANK YOU to all of you for your prayers. We are so overwhelmed by the love and support you guys have shown our family.

June 3, 2017

We have a living donor! Cuong is scheduled for surgery on June 21 at East Texas Medical Center in Tyler, TX. Out of respect for their privacy, we will not share the name of the donor. However, we ask that you join us in prayer for seamless transplant surgery between donor and recipient. More updates to come as we have more information.