My Family’s Journey Through Kidney Disease

Publishing this post marks the sixth month since my wife’s kidney transplant. From the feast of St John the Baptist and Solemnity of the Sacred Heart of Jesus to Christmas Eve, the critical post-surgery window was bookended by key dates in the Christian calendar.

Having said that, it’s been a blessing to be at this stage of my wife’s medical journey. So allow me to go through a brief timeline of events.

  • April 2014 – I told my wife to take a routine lab test as she was feeling lethargic. The laboratory package at Human Health in Po Lam, Hong Kong involved urine and blood samples. Results yielded a high level of protein leak (proteinuria) so she was advised to repeat the urine test, which the result confirmed the initial readings. By then she was referred to a nephrologist in Mong Kok. We paid the specialist a visit once every six weeks. Prior to every visit, my wife submits blood and urine samples.
  • October 2014 – After months of consultation with Dr. Leung, we were advised to take a kidney biopsy at St Teresa Hospital in Kowloon Tong to determine the cause of the protein leak through tissue samples from the right kidney. The result revealed IgA nephropathy (Berger’s disease), a condition that occurs when an antibody called immunoglobulin A (IgA) builds up in the kidneys. This produces local inflammation that hampers the kidney’s ability to filter waste from the blood.

During this time, we were told that the kidney function will eventually fail, and the only way to go is to prolong its deterioration through aggressive dosage of steroids. At this stage the medication made my wife hyperactive and increased her appetite.

  • June 2018 – While preparing for an overseas trip, we were startled to receive a call from the nephrologist’s clinic to see him at once. We found that my wife’s creatinine level has spiked. From a normal range of 50 to 100, her level reached 200, thus alarming the doctor. Soon, we also observed her elevated blood pressure. I researched for kidney transplant process but was told it was too early to adopt this option; it can only be done when the kidney fails, and the patient undergoes dialysis.

By this time, going to the nephrologists every six weeks was a mental torture: in every visit we can only expect a worse diagnosis than the previous one.

  • October 2018 – I was offered a job in Australia. Despite my wife’s medical condition, we decided to accept the offer and relocate to Sydney. Conscious of potential challenges like expensive medical coverage and lack of support due to my visa conditions, it was a risk we agreed to take.
  • July 2019 – My wife followed me to Sydney after finishing her preschool employment obligation. I arrived in March and she paid a brief visit in April. She left for Davao in August to look for a local nephrologist.
  • October 2019 – My wife returned to Sydney to celebrate her birthday. We met a nephrologist in Sydney who was alarmed to see my wife’s creatinine high level and advised her she should be on dialysis as soon as possible. She left for Davao in December, and I followed her later that month. I returned to Sydney in early January and she followed later in the month.
  • February 2020 – Just as COVID-19 became a global pandemic, my wife’s creatinine level reach 3000. Face dire situation, and fear of lockdown, I immediately booked a one-way ticket for her to Davao. Just as she arrived there, Australia was closed to international travel. Once she arrived in Davao, President Duterte ordered a flight lockdown over the country.

By this time, she was closely monitored by the Department of Social Welfare staff for any COVID symptoms.

  • April 2020 – She began her dialysis session at Southern Philippines Medical Center as she was a recent traveler with detected traces of pneumonia. She experienced chills, vomiting, diarrhea, fever, and loss of appetite. As a result, her weight plummeted.
  • May 2020 – She began her dialysis session at Davao Doctors Hospital twice a week. During a pandemic, dialysis patients have to undergo swab tests before admission, which adds to the level of stress and financial burden.
  • October 2020 – She tested positive for COVID-19 and was moved again to Southern Philippines Medical Center the sole COVID isolation center in Davao. COVID-positive dialysis patients were also isolated from other patients and had fewer dialysis machines. Due to the lack of facilities, she’ll be lucky to have one dialysis session. I feel helpless and sought the help of whoever could assist her while in isolation. Thankfully, a childhood friend’s sister works in the hospital and offered help.
  • May 2021 – My wife found a matching kidney donor from a friend.
  • June 2021 – Series of tests to confirm compatibility between donor and recipient. Among the submissions to the National Kidney Transplant Institute were several vials of blood from both of them for tests such as HLA tissue typing, cross-matching, and PRA screening. After a week of laboratory reviews, results showed a high level of compatibility. However, these results would be rendered irrelevant and need a repetition after a scheduled kidney transplant did not take place.

Additional tests include ethics panel interviews to verify that the donor-recipient arrangement is legitimate. After success in these tests, she was scheduled for a kidney transplant on December 8, an auspicious date. We were also required to submit a huge list of documents such as donor’s care and post-surgery treatment, consent for kidney donation, police clearance, transplant orientation attendance, and so on.

  • December 2021 – The scheduled kidney transplant hit a snag as pulmonary clearance could not be issued due to discovered presence of fluid in her lungs. It was a big setback as medication for this condition required six months to complete. Therefore the earliest transplant schedule can only be done in June 2022, barring any medical anomalies on follow-up tests.
  • April 2022 – A repeat of the same tests done in June 2021 commenced. This meant additional blood samples were sent to NKTI again, and a repeat of lapsed laboratory tests. Needless to say, this also incurred additional financial costs for us.
  • June 2022 – A successful kidney transplant took place in Davao Doctors Hospital.

It was a long journey and is still continuing. So far, here are the main takeaways we’ve both encountered:

Kidney disease is a long marathon, not a sprint

When I learned that my wife had chronic kidney disease, I was quick to find remedies like locating possible transplant donors. However, I realized that it was not an immediate option, and cannot be performed until the kidney failed and the patient underwent dialysis. Prepare to wage a long battle that takes years.

Quick thinking is key to a looming lockdown decision

No thanks to the inauspicious timing of the coronavirus pandemic, we had to deal with two layers of medical condition: manage chronic kidney disease, and protect against a rapidly spreading virus. So when the creatinine level rose to a critical level, we immediately agreed for her to travel back to the Philippines just before lockdowns commenced.

COVID adds to the struggle as dialysis, hospitals unprepared for a pandemic

If dealing with renal failure is a daunting task in itself, brace yourself for a world of hurt if it happens during a coronavirus pandemic. A negative swab result is required before each dialysis session. And oh, by the way, it costs P6,000 per swab. She may be a PhilHealth member but anything related to COVID wasn’t covered yet at the time.

Look after yourself as a carer

As a carer, your focus and concern often fall on a sick loved one. But it won’t be fair if you take yourself for granted.

It’s easy to fall into a mental breakdown and go crazy during the pandemic. So it was important to keep myself engaged with things that divert my attention from things beyond my control. So despite restrictions in place — the 5km bubble and working from home — look after yourself and reach out to others. A friend invited me to go for a run. Choirmates invited me to join a step challenge. I explored places alone.

Jason and Hazel invited me to their home and we dine and watched movies together with their kids. I uncovered my passion to go solo hikes. These activities kept me going and nourished my impoverished mind.

Befriending nurses helps ease the burden and boredom

When my wife was on dialysis, she befriended most of her duty nurses. She can easily remember Alvin, Sydney, Paul, Ashley, and Cheryl who filled her dreary 4-hour sessions with color. They share their life stories, crack jokes, and complain about wage conditions and the risk of COVID infection.

Their presence provided a source of entertainment with their idiosyncracies with work and personal life, and inspiration that as front-line workers during times of a pandemic, they risk their lives to care for others.

The importance of longstanding friendships and community involvement can’t be overstated

During the entire journey of my wife’s battle with kidney disease, friends in both Hong Kong and Sydney were always there for us. Not only did they offer their daily prayers for my wife’s condition, but they also made significant moves to raise funds for her upcoming surgery. Friends in Hong Kong did a bake sale (thanks Roma and Charm and Jared and Julio), collected cash donations, sold custom key chains (thanks Julia and Mark), and came up with a GoFundMe campaign (thanks Jason and Joseph).

This was a time when I realized we were not alone in this journey. My wife and I have been away from each other for 27 months, but we were surrounded by true friends who offered help and assistance even

Sustaining a consistent spiritual life eases the pain and builds strength to face adversities

Since the start of the pandemic, the stay-at-home orders help built time for our community in Sydney to bond together in prayer. A community rosary started in March 2020 and remains ongoing. The daily rosary is led by various members of the community who gather via Zoom call at 8:00 pm Sydney time. Depending on daylight savings time, my wife also joins whether she is on a dialysis session or commuting between home and the hospital.

Being active in her spiritual life was a source of strength for my wife. Her daily routine includes attending online mass at Manila Cathedral at 12:10pm just before her lunch at 12:45pm. She joins the daily Sydney community rosary at 5/6pm, and at 11, she may join the Hong Kong singles rosary.

Limits on food and drinks can contribute to severe weight loss

Being on dialysis is not only a routine 4-hour session. Diet is also heavily constrained. Her intake of phosphorus, potassium, and sodium is heavily monitored. Her kidney disease was due to an autoimmune anomaly and not an outcome of a poor lifestyle. Since she is also lactose intolerant, she can only consume yogurt but no dairy products which could have helped maintain her weight level. As a result, her weight went down from 45kg to 29kg.

It’s a terrifying experience being a kidney patient during COVID

My wife shared with me horrible tales as a dialysis patient in 2020.

  • At the time, COVID-19 tests were relatively rudimentary, and results are released after 2-3 days. When she tested positive, she was isolated in a COVID ward for dialysis patients at SPMC, a public hospital, where the frequency of dialysis sessions was very infrequent.
  • When my wife was finally cleared of COVID and was bound to return to her original hospital, she could not simply get admitted. The hospital’s protocol required incoming patients to get swabbed for a non-discounted fee of P6,000. Alas, the test yielded a positive result, so my wife has to return to the public hospital and anticipates getting free but irregular dialysis sessions. Thankfully she spent only seven days in her second stint there.
  • Some patients she came to know in the ward hadn’t received dialysis for more than a week, resulting in difficulty in breathing and odd behavior such as borderline mental illness. Another patient had experienced extreme edema (excessive water retained in the body) that enlarged his foot significantly. Many others complained of breathing difficulties. After an extended period of no dialysis, patients will suffer chest pain, muscle cramps, irritation, and the risk of death become significantly higher.
  • My wife seemed to get “special treatment” after someone apparently recommended to hospital staff that she be attended to as a priority patient. While it was a blessing for her, it also came at the expense of others who felt they were overlooked. One of the patients even commented, “Ihatag nalang na imong slot kang Nanay nga nabuang” (You should give up your slot to Nanay who has become mentally retarded). She recalled she would have wanted to spare her slot but was also uncertain if she’ll get that slot anytime soon. Sadly, the old lady died after my wife was brought back to Davao Doctors Hospital.
  • In the middle of the night, one of the ward patients had difficulty in breathing. Doctors were called in alongside a respiratory monitoring machine. Amid her labored breathing, graph readings indicated a pessimistic outlook. Doctors then called for her husband to come over and deliver the inevitable news. My wife heard a dying person’s last words in the silent ward. After she breathed her last, her husband sighed a deep breath as he was overcome with grief.

Being a kidney dialysis patient can develop odd habits

You have to understand that due to certain restrictions such as limits in liquid intake and foods that are rich in potassium, sodium and, maybe the way dialysis patients think might change. For example, my wife has a habit of watching Youtube videos that feature people eating ice. That’s perfectly understandable given that she is only allowed 500 ml of water each day.

We are reminded that life is so fragile

While my wife was confined in an isolation ward at Southern Philippines Medical Center due to COVID infection, she was with other dialysis patients who seemed to suffer worse than her condition. One patient who had failed to get a dialysis slot suffered hallucinations. Another patient had little to no control over liquid consumption. In the middle of the night, they would wail and get little to no help because nurses also need to distance themselves from COVID patients or wear elaborate protective clothing.

During her one-month confinement along with four other patients, she witnessed three of them struggle and eventually expire. Once a patient passes on, he or she is replaced with another patient. By then, the realization was that we are all mortals, though we don’t know when will our earthly journey end.

The family will never leave you alone

Family relationships are far from perfect, but in times of difficulties, they rally behind you and offer unwavering support. One shining example is my wife’s third sister Rudith who has seen every struggle her eldest sister endured and matched it with selfless dedication.

From locating the nearest drugstore with available medicine stocks to submitting paperwork and from applying for financial assistance from government agencies on her motorbike, rain or shine, that’s how you describe dedicated service.

My wife was on her last dialysis session before her kidney transplant.

Importance of health insurance and medical benefits, PWD discount

Needless to say the cost of blood and urine tests, dialysis sessions, doctor’s professional fees, and other hospital services easily rack up to hundreds of thousands to even millions of pesos.

But whether you have a debilitating disease or not, securing health insurance as a voluntary effort or as part of an employment perk is a wise decision. In the future, you will thank yourself for making such an investment.

So the next time someone offers you a health insurance policy with appropriate benefits to your anticipated needs in the future, consider signing up for one.

Importance of doctors’ network

We are fortunate that my brother’s wife Dr. Gaea Porquis-Cagape is an anesthesiologist who happens to connect with a network of physicians whose expertise and availability aligned with the needs for a kidney failure procedure. Most notable is my wife’s nephrologist Dr. Aileen Herceda who knows infectious disease, pulmonary, cardiovascular, and other specialists, medical fields whose demand spiked during the pandemic.

Although it is a general practice for GPs to recommend specialists whom they work with regularly way back from their residency years, the help transcends from just mere professional to a personal level.

Being a blood and organ donor is our gift to humanity

When my wife’s hemoglobin levels plummeted, it was recommended to have a blood transfusion. But with limited stocks at the blood bank, her friends and relatives who shared her blood type chipped in. Once we found out it was not enough, we had to “borrow” from the blood bank. Prior to her kidney transplant, we were also asked to prepare two bags of blood. Without their contribution, the surgery won’t proceed.

My wife’s actual kidney transplant happened in June 2022.

As I learned from such an experience, I plan to donate blood and sign up as an organ donor.

Foodpanda is your friend

Hospital food may be healthy but it can also be bland, as patients can attest. As an alternative, outside food is a legit alternative that’s made more convenient through food delivery apps. My wife hasn’t been restricted in her diet and is free to choose whatever meal she wants, so she chose Foodpanda as her delivery agent. Although there are numerous options to consider from French fries to fish filet to fried chicken, she chose pastries as comfort food.

It became a go-to option as patient watchers like me are also not technically allowed to leave the hospital to buy food outside of the hospital cafeteria and the daily food ration.

Other patients would have loved a home-cooked vegetable soup but they are not sold via the food delivery app.

Expanding your circle of friends does wonder

Moving to Hong Kong a long time ago, and to Sydney recently, has expanded our circle of friends, most notably from the Missionary Family of Christ catholic community we’ve been part of for many years. Immediate family members are the obvious providers of help, but the extended circle of friends also offers a significant amount of help.

They are a constant source of inspiration, as they are living proof that God works through His people who surround us. From my wife’s college buddies at Ateneo to our Himig Sandiwa family and from our Sydney MFC nightly rosary activity to ex-colleagues, it’s a long chain of helpline ready and willing to help us.

They don’t have to pledge or donate anything. Simply asking how she’s going on Facebook is a sign of concern.

Determining organ compatibility is a challenging exercise

Sharing the same blood type is a path to the right decision in finding an organ match. But it will only get more complicated from there on. Multiple tests will be conducted to determine if both organ donor and recipient have high compatibilities.

But both the donor and recipient also need to be ready for the rigors of surgery. They need to pass dental clearance, pulmonary and cardiology clearances, psychiatry clearances, and infectious disease clearances. Thankfully Ma’am Connie Charmine Ambulo, DDH’s kidney coordinator was kind enough to go through our submissions for pre-transplant requirements and laboratory tests.

Once both donor and recipient pass those hurdles, there’s also an ethics clearance to certify that the imminent surgery is legitimate: there is no involvement of coercion, commercial transaction, and black market kidney trading.

Overall, it can take up to six months. This is mainly based on the results of either or both recipient or donor; a repeat test is required if results are inconclusive.

Expect a heavy financial burden

It’s a no-brainer that if you have a patient undergoing a major medical procedure such as a kidney transplant, you need to pay a lot of money. The age of the pandemic further added to the burden. In the early days of my wife’s dialysis, she has to undergo a routine swab test before each session. Each swab test costs P6,000. Each dialysis session costs P3,500 and she undergoes sessions.

Lab tests to measure levels of cardiovascular and pulmonary health are in the thousands. For instance, she has a low level of hemoglobin so she needs a P1,200 epoetin injection every dialysis session to boost her blood level. These expenses easily add up during dialysis sessions and are required until the patient finds a suitable donor.

Thanks to the Philippine Health Insurance system, part of her expenses are reduced. As of writing, expenses remain high for medical maintenance and I don’t expect it to go down any time soon.

Organ donors are God’s instruments to extend a patient’s life

Meeting a willing donor is a privilege, not every dialysis patient will encounter in their lifetime. I think in the Philippines there’s that lack of education regarding being an organ donor. There’s fear that once you donate your kidney, you’ll health will be compromised and you won’t live a normal life. This is quite contrary as living kidney donors can continue to live normal lives on top of playing a hero to someone in need.

According to Kidney Fund, 87% of those on the transplant waiting list don’t have kidney donors. The demand for kidney donors will continue to grow as there is an increase in the number of patients with kidney failure.

Potential challenges in the post-transplant scenario

As mentioned earlier, life is fragile and this is especially true for organ recipients.

It’s hard to figure out when to tell it’s a successful kidney transplant. Once the pair of donor-recipient has been identified and tests indicate high organ compatibility, there are further hurdles to overcome. First, the recipient must be physically able to withstand the surgery, while the donor has no underlying conditions that could compromise the transplant.

After the procedure, diet and lifestyle must be properly monitored. Within the time of my wife’s transplant, I learned another patient who underwent the same procedure suffered bloating and had to return back to the hospital for a few days due to elevated creatinine levels.

The first three months after surgery are the most critical. We had to go to the lab for a follow-up test twice a week, and medications are adjusted based on the results. It was akin to a control center pressing different buttons and pulling levers based on what you see on the screen.

Kidney patient or not, personal hygiene is essential

Many people have learned to practice better care for themselves and others as the pandemic raged on. They wore masks, used wipes or alcohol sprays more frequently, and practiced social distancing.

After the kidney transplant, we had to treat the home as a sterile environment. We wear hair bonnets, facemasks, and hand gloves. I washed her kitchen utensils and cutlery, separate from the rest of the others. On the way to the hospital, she has to wear a special wardrobe. Disinfect her with any taxicab we board or the wheelchair she’s going to sit on.

We should not let our guard down when it comes to hygiene because we are dealing with an invisible enemy.

Befriending drugstore staff can help get a steady medication supply

My wife has a maintenance medication and gets discounted prescription drugs through her “Persons with Disability” card. Her sister goes to the drugstore every week but on occasion she couldn’t make it, going to the drugstore without the card and prescription can be a losing situation. But the weekly trip to the drugstore developed familiarity with the pharmacy staff and helped her get the discounted medicine.

Just like befriending the nurses during dialysis sessions, it pays to establish rapport with drugstore staff especially when stocks of anti-rejection drugs can run out, and pharmacists can advise which branch of the drugstore it is available.

During the pandemic, SPMC and drugstores elsewhere ran out of medicines due to the logistics impact of the restricted movement of goods from factories to end users. Everyone paid a premium to get these essential items.

The number of medications can be mindblowing

The day we left the hospital after the surgery, we also brought along a few bags of medicines. Once we sorted them out according to the amount and precise time of dosage, I was amazed to see at least 20 different varieties of medicines that cater to various purposes such as immunity suppression, strengthening bones, medication against ulcers and cramps, relief of pain, and so on.

Going back home after post-transplant hospital discharge.

It was overwhelming at the start as we had to deal with tablets whose labels are difficult to read and matching them with pages of the discharge medication list. It became more manageable from then on, but it was an unforgettable sight the first time I saw that huge pile of medicines!

Being resourceful helps ease the financial burden

Thankfully, Rudith knows well the intricacies of seeking help from government agencies to defray hospital expenses. There are welfare agencies that help indigent patients and those who are burdened with huge medical expenses through the Department of Social Welfare and Development’s Lingap sa Masa program.

Partly list political groups also extend their help to a smaller degree.

Rudith admits to getting frustrated by the back-and-forth follow-ups but concedes that it is standard practice so patience is paramount. After all, beggars can’t be choosers.

Work for companies that look after their employees

The coronavirus pandemic has basically frozen the plans of people. Vacations, reunions, weddings, and other social functions have been put on hold as everyone was advised to stay home and implement social distancing to stem the tide of the virus. As a result, flights were halted, borders closed, and even elective surgeries were suspended.

Now that we are in the post-COVID era, otherwise known as living with the virus, stalled plans have begun to take shape and got us excited again. Of course, I am excited too because I’d be able to see my wife after separating for 27 months. I am grateful to avail of  Resolution Digital’s Reso Reunite program which sends its employees to their home countries to work remotely while reuniting with their families.

Just after my wife’s surgery in June, I resumed my work with shifts from 7 am to 330pm to align with Sydney’s two-hour time difference.

Moving Forward

Needless to say, the journey was far from easy and is still in progress. She still has to take several medicines, including a few that will be lifetime maintenance dosages. But my wife and I are thankful for the support we received. Thank you, for being with us on this journey!

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