Jaslynn Tay was 16 weeks pregnant when she found out she had kidney failure. All of a sudden, she and her husband Gordon Ling, were thrust into a dilemma no young couple wants to have—whether to take the life-threatening risk of continuing with the pregnancy, or ending it there and then.
“We were told to decide to either keep the baby or go through an abortion,” remembers Gordon who describes the situation as being “very stressful”, what with dealing with a complicated pregnancy and the sudden very dire diagnosis.
“This was not something that an expecting couple should be experiencing,” he remembers.
After much soul searching, many sleepless nights and countless discussions with doctors, family and friends, they decided to take the very dangerous risk.
“The nephrologist in Hospital Kuala Lumpur was the only one who suggested that we keep the pregnancy as it is difficult for kidney patients to get pregnant,” says Jaslynn. “If I abort this pregnancy, the chances of me getting pregnant again with kidney failure is very, very low. Her suggestion was to do an emergency dialysis to ensure the safety of both me and the baby.
Pregnant women with chronic kidney disease are known to adapt poorly to a gestational increase in kidney blood flow demanded by the growing baby, thereby putting themselves and the health of their unborn child at risk. The rate of complications to both mother and child during such a pregnancy is also very high.
“It was a risky decision,” says Gordon. “I felt helpless watching my wife prepare for hemodialysis while being pregnant.” But at the end of the long and perilous journey, baby Caitlyn Darianne Ling was born via Caesarean Section in 2016.
Yes, the story of Jaslynn’s precarious dice with kidney failure during pregnancy began in 2015 and ended happily, not just with the birth of their child but with Gordon becoming a kidney donor, giving his wife one of his kidneys in a seven-hour operation in 2019 so that she can henceforth, have a better quality of life. Indeed, this is also a story of love and sacrifice.
Today, both husband and wife look back with gratitude at the events that changed their lives forever.
The Reality of Chronic Kidney Disease (CKD) in Malaysia
Chronic Kidney Disease (CKD) is primarily caused by diabetes or high blood pressure. It is a serious disease and an escalating national health problem as there are more than 40,000 kidney failure patients undergoing dialysis treatment nationwide to date. There is no cure for CKD. Because the kidneys no longer function as they should, a patient has to depend on dialysis to artificially remove water, toxins and harmful waste from the body for the rest of his or her life.
The best treatment option for CKD patients is a kidney transplant where the transplanted organ can then perform the function of that person’s own kidneys and allow patients to live a more “normal” life than that experienced on dialysis. Unfortunately, kidney transplant options in Malaysia remain low.
That is why the National Kidney Foundation of Malaysia (NKF) initiated the Community Organ Donation Drive (CODE): Life programme to advocate kidney transplants so that patients receive the help they need and their family members and the general public get to understand the concept of organ transplant and the importance of organ donation.
A Story of a Sudden Life Threatening Pregnancy Crisis, Chronic Kidney Disease and an Extraordinary Kidney Transplant Surgery
Motherhood asks Jaslynn and Gordon to revisit their CKD, pregnancy and transplant journey and share how Gordon’s decision to give one of his kidneys to his wife changed the lives of everyone in the family.
1.Motherhood: So Jaslynn, you had your daughter in 2016 and the transplant in 2019. Before the transplant, how was life like living with CKD?
Jaslynn: Before the transplant, I was on dialysis. I did CAPD* (Continuous Ambulatory Peritoneal Dialysis) where a dialysis catheter was permanently placed in my peritoneal cavity and exits from my abdomen. I had to do three treatments a day, five times a week. When I am doing my treatments, I can’t have anyone in the room so it was a big hassle as I had to look after my daughter as well. My parents would come over to my house to help with taking care of her while I did my treatments.
With the catheter in my abdomen, I had to keep it dry and clean. I had to do dressing daily and the tape would cause an allergic reaction on my skin. This also meant that to avoid getting an infection, I could not go into swimming pools, saunas and jacuzzies.
Besides that, I had to be on a strict diet where I had to watch my sodium, potassium and phosphorus intake. This includes lots of food such as dairy products, and various fruits and vegetables such as potatoes and bananas.
I would also have to preplan my day if we were planning to go out even for a simple day out at the mall due to my treatment timing.
It was a hassle being tied down to the treatments and having to watch what I eat or drink.
*There are two kinds of Peritoneal Dialysis. 1) Continuous Ambulatory Peritoneal Dialysis (CAPD) – where no machine is used. 2) Automated Peritoneal Dialysis (APD) – where a machine is used. Peritoneal dialysis uses the peritoneal membrane in your abdomen as a filter for your blood. A soft tube, called a catheter, is surgically placed in your abdomen. You connect this catheter to a special tubing to allow 2 litres of cleansing fluid (called dialysate) to flow into your abdomen. The dialysate usually stays in your abdomen for a few hours (dwell time) to let waste and extra fluid to pass through the peritoneal membrane into the cleansing fluid. After your dwell time, you drain the cleansing fluid from your abdomen into an empty bag and discard it. This process is usually done three to five times a day in a 24 hour period.
2.Motherhood: Gordon, you are the kidney donor. What made you decide to donate your kidney to your wife?
Gordon: I wanted to give her a better life and a chance to care for our daughter, and for our daughter to have a healthy mother. I did my overall checkup for the renal transplant work in November 2018.The good news was that we matched for the transplant. It was already quite a miracle. My left kidney was a 98% match, and the right was 99%!
3.Motherhood: Did you have any second thoughts? Were there any objections from anyone?
Gordon: The biggest objection came from my wife, who was in fact worried about me sacrificing myself for her and giving a part of myself to her and especially how I would turn out after the transplant.
4. Motherhood: Why did you wait until your daughter was 4 years old before deciding on the transplant?
Gordon: I think one of the reasons was that I didn’t want to rush into things because our daughter was still very young and my work had a lot of things going on. But I did think that we shouldn’t delay too long as well because we’re not getting any younger. So, while we’re both still fit and young, and our daughter is quite independent being away from us, I thought it was the right time to do so.
5. Motherhood: I understand you had to take a lot of tests before you were given the green light. How long did all the tests take?
Gordon: The health check up, or transplant workout, started from October 2018 – with a DSA (donor specific antibody) matching test first. Then we proceeded with various tests along the way from heart, lungs, fitness, radiation, blood test, and so on. My wife also had various tests to undergo. We finished the tests around August 2019, then we were scheduled for the transplant surgery on 26th November 2019.
From what I heard from the World Kidney Day event recently, if the hospital, the recipient and the donor’s schedule allow, you can actually do it all within three months.
6.Motherhood: So Jaslynn, how has having your husband’s kidney changed your life?
Jaslynn: I feel much more energetic, because with kidney failure, the Haemoglobin count are always low making me feel tired and I also feel and am much healthier now. It has also improved me emotionally as I would often times have anxiety while on dialysis that would lead me to a panic attack. And with the transplant, being able to do things I couldn’t before has made me much happier. Besides that, it has changed the way I view life. It has made me appreciate life more as I see this as being given a second chance in life.
Having a Baby when the Kidneys Fail
7.Motherhood: Although it happened five years ago, can you take us through the ordeal of pregnancy with CKD? When did you notice something was wrong? How were you diagnosed? What were the symptoms?
Jaslynn: I had a fairly smooth pregnancy and everything was going as planned. I had my birthing plan and I was enjoying my pregnancy. Up until 16 weeks, I started bleeding while I was at work. I rushed to the emergency department fearing the worst. The gynae rushed from his clinic to the hospital to check on me and found that my bleeding was caused by having a low lying placenta and the baby was completely fine. I was asked to have a week of bedrest and the placenta would hopefully move up on its own.
It was a relief to hear that not knowing the worst was yet to come. The nurse took my blood pressure and she was concerned that the reading was very high (160/100)—telling me that she needs to inform the doctor. I remember thinking to myself: “It is normal that being scared would increase the blood pressure” but the doctor decided to run a blood test anyway.
After the grueling wait, they found that my creatinine was very high at 400+ (normal being in 40-70 range). At that time, I didn’t even know what creatinine was. They decided to admit me to the ward so that I can have more tests and have my bedrest.
That was when I found out about my kidneys being in failure. I had absolutely no symptoms of kidney failure at all. If it wasn’t for the bleed, I wouldn’t have found out about it and probably would have been in greater danger. This is why I am so grateful for this pregnancy, even though it was very complicated, it saved my life.
8.Motherhood: How often did you have to go for dialysis while pregnant? What was the duration of each session? How often in a week?
After finding out about my kidney failure, the nephrologist at the hospital said that I needed to abort my pregnancy as it puts my life in danger. We insisted on keeping the pregnancy so we went to a few other doctors that never gave us much hope for the pregnancy. Our gynae then suggested that we transfer to HKL (Hospital Kuala Lumpur) as they have a team of MFM (Maternal Fetal Medicine) there and the cost would be much lower.
The nephrologist in HKL was the only one that suggested that we keep the pregnancy as it is difficult for kidney patients to get pregnant and if I abort this pregnancy, the chances of me getting pregnant again with kidney failure is very, very low. Her suggestion was to do an emergency dialysis to ensure the safety of me and the baby.
A catheter was placed in my neck to access the jugular vein where the end of the catheter ends near the heart. I was put on hemodialysis** three times a week, four hours per treatment throughout my pregnancy. With dialysis, my blood pressure went back to normal. I was travelling to the hospital a lot during my pregnancy, for dialysis, for kidney follow ups and prenatal checkups.
**Hemodialysis is a procedure where a dialysis machine and a special filter called an artificial kidney, or a dialyser, are used to clean all of your blood. The blood is pumped out of your body via tubes to the dialysis machine then returned to your body via a different set of tubes.
9.Motherhood: How was your baby’s progress monitored during the pregnancy? How often were these prenatal checkups?
The MFM team worked with the nephrologist to monitor me and the baby. I had to go for scans every two weeks during my 5th and 6th months. I had to do blood tests, detailed ultrasounds, and monitor my blood pressure as I was considered having a high-risk pregnancy. Towards the 7th month of pregnancy, I was monitored weekly by the MFM.
10.Motherhood: Were there complications during the pregnancy?
Jaslynn: My pregnancy complication was my low placenta which later on moved up on its own. Towards the 7th month of my pregnancy, my blood pressure went back up again. I was given blood pressure medication that started from one pill and progressed up to six pills.
11.Motherhood: So baby Caitlyn was delivered at 34 weeks. How was the delivery? How did you manage to take care of her in the early days?
Jaslynn: My blood pressure was very high. When it couldn’t be controlled by medication anymore, the MFM gynae suggested that I was to be admitted and get an emergency Caesarean Section that day itself. After admission, I went through a round of dialysis treatment and got infused with two pints of blood as my haemoglobin was low. Around 7pm, I was wheeled into the operating theatre and my baby was delivered via emergency C-sec. I didn’t get to see my baby after she was delivered as she was a preemie and only weighed 1.75kg so they had to rush her off to the nursery to be assessed and monitored. Miraculously, my baby managed to breathe and drink on her own so she did not have any tubes. She was kept in the neonatal intensive care unit (NICU) to be monitored and to gain weight.
In the early days, I extended my confinement lady another month to look after my baby as I still had to go for dialysis three times a week. On days when I didn’t have dialysis, I could take care of my baby myself. My mum also stayed over to help with my baby.
Two months after my baby was born, I went through another surgery to place a permanent dialysis catheter in my abdomen to do CAPD.
12.Motherhood: How was your food and liquid intake monitored? I understand there is a special diet for CKD pregnancy?
I was asked to take a high protein diet during my pregnancy. I never actually had to limit my liquid intake as I still produced urine. I only had to cut out food that has high potassium and phosphorus and take food that has no salt.
Kidney Transplant – from Husband to Wife
The kidney transplant surgery took place on 26 November 2019. Gordon says he felt more excited than nervous because all he could think about was his wife being able to lead a better life after the procedure.
During a kidney transplant surgery, both the donor and the recipient will be put under general anesthesia. The donor’s kidney is accessed via incisions, removed and placed in the recipient’s lower abdomen. The old kidneys in the recipient are usually not removed (unless there is a medical reason to remove them). Blood vessels of the new kidney are then attached to blood vessels in the lower part of the abdomen, just above one of the legs, where it is easiest to connect and where it will be easier to take care of problems should they arise. The new kidney’s urine tube (ureter) is connected to the bladder. If the new kidney comes from a living donor, such as in the case of Gordon and Jaslynn, it will start working almost immediately.
Donors living with one kidney usually live healthy, normal lives with few problems because one healthy kidney can work as well as two. The recipient should also expect to live a normal, healthy life, with an increased life expectancy as compared to being on dialysis, if no complications arise from the transplanted kidney.
13.Motherhood: Gordon, what kind of tests did they do on you to prepare you for the transplant?
Gordon: There were so many tests that I cannot even remember all of them. They did tests from my head to toe and I remember the doctor even injected some form of radiation into me just to see how my body would react. There were a lot of medications and supplements to take as well.
14. Motherhood: Jaslynn, what were the tests like for you as the recipient of the kidney? What did they test?
Jaslynn: For my transplant work up, I had to go through a lot of tests. One of the most important ones being the DSA (donor specific Antibody test)—this test is to check if I carry any antibody towards my donor.
Other tests that I had to go through includes stress test, heart test, dental, pap smear, breast ultrasound, psychologist meet up, kidney scans, abdominal ultrasound and countless numbers of blood tests.
15. Motherhood: Gordon, can you take us through as much as you can remember? You were discharged after five days and was up and about within a week with no complications and Jaslynn did her first biopsy after a few months and the result showed no objection at all! All in all, this was a very successful kidney transplant.
Gordon: I know our story may sound like a Korean drama love story. The nurses even made sure we were placed together side by side whenever possible, which was really sweet. I remember after the procedure was done, they moved me to the recovery room to rest for 30 minutes before transferring me back to the ward. But, because Jaslynn was still in surgery, they left me there to wait for her. When she was finally done, they pushed her bed right up beside me and unconsciously when my hands reached out to hold on to hers, I could hear the nurses going ‘Awww’…
16. Motherhood: Jaslynn, what medications did you have to take after the transplant?
Jaslynn: After the transplant, I was placed on three types of immune suppressants to stop my body from rejecting the kidney. These medications caused a lot of side effects from hair loss to other more complicated issues such as diabetes and toxicity. For me, one of the medications which is a corticosteroid gave me mid cycle spotting. After scans came back normal, my gynae said it could be due to the side effect of the corticosteroid.
17. Motherhood: Are there special things you must do every day to take care of your new kidney? How regularly do you have to keep going for tests?
Jaslynn: Initially right after getting discharged, I had to go back for follow up three times a week, it was then lowered to two times a week, then once a week and then twice a month. I am now on a once a month follow up but this also differs for different patients as well depending on how comfortable the patients and doctors are with the gap of the follow up.
One of the most important ways to take care of the kidney is to take the medications on time every day. This is to stop the body from rejecting the kidney. Besides this, I cannot eat raw food such as sashimi and eggs. And I cannot eat grapefruits as it interferes with the medication. I also have to keep clean by washing or sanitizing my hands as I am immunosuppressed and more prone to infections and diseases.
18.Motherhood: What about you Gordon? What must you do to take care of your remaining kidney? How regularly do you have to keep going for tests?
Gordon: Drink lots of water, and exercise as regularly as possible. I’ve been drinking a lot more, more than I did before the transplant. But not so much on exercise due to my condo’s restriction and the high COVID cases out there.
Right after the transplant, I went for checkups once every week, then it was down to twice every month, then once a month, and now once every three months. They are just blood tests to see my kidney’s performance every now and then. I think my creatinine level was 97 recently, it was a good thing.
19.Motherhood: With both you and Jaslynn doing so well now, are you planning to have another child?
Gordon: To be very honest, we’re not planning for another child yet. The pandemic situation is not very favourable right now, and the risk for a transplant patient is higher. But our doctor did say that we can have another child, we just need to plan ahead to change her medication to one that is safe for pregnancy.
***All Images Courtesy of Jaslynn and Gordon Ling.
A transplant is not a cure for kidney failure, but transplant recipients will have a better quality of life such as having a greater sense of well-being and being able to enjoy a lifestyle free of dependence on dialysis treatments.
For more information about kidney disease or kidney donation, please go to the National Kidney Foundation Malaysia’s website at http://www.nkf.org.my or call 03-7954 9048.
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