If you’ve been seeing my posts in your feed for some time now, you’ve probably seen that most of them are food and health-related.
I’ve had some people wonder what those posts are all about and why. I also share this so other friends and family could get updated one time lol because my patient is not very comfortable when other people talk about him and especially when there are such heavy emotions involved. Haha! 🙂
The past month, we’ve been on one hell of a roller coaster ride which ended up in one helluva diagnosis.
Basically what happened was that around late February / early March, Dada has been getting crazy headaches that we thought were just because he missed eating his meals on time or because he was on the laptop too much (on average, he sleeps around 1 am and then wakes up around 8 am).
He’s actually been having this for several months now that we look back – and at times it would go so bad he would vomit – but we still dismissed it because right after he takes paracetamol (we thought he was feverish) or after he’s slept, he’d get better the next day.
The first week of March his feet started to swell (he’d also had this before and then it would return to normal) and his face started to get puffy so we decided to go see a doctor finally.
And so we went to see an Internal Medicine doc, we told him his symptoms and he ordered some lab work. He had suspected something and true enough, he had guessed right.
Once the blood work and the urinalysis and the ultrasound came out, he immediately told us to go visit a nephrologist as soon as possible.
Turns out, Dada’s creatinine level was already at 8. (As a reference, normal levels should be around 0.7 to 1.3; 2 is the max reference range but this is already at dangerous levels.)
We went to see the same nephrologist who had seen my father. We were scared to ask my mother for info, mostly because we didn’t want them to worry. I told them it was a serious matter but we were hoping for the most positive result from it.
While we were waiting for the ultrasound results before seeing the IM doc again, I had seen his other lab results. (Plus his secretary saw the numbers and made a huge gasp – we laughed it back then because we didn’t have a clear idea what was going on yet.) I knew we were in trouble. I had started welling up, and I nearly could not hold back my tears when we went back to see the IM doc and then later on when we were in the car after seeing him.
When we went to the nephrologist, she ordered more labs to rule out the cause. She needed to know when it had started to occur and what might have caused it.
Unfortunately, after the second set of labs, Dada’s creatinine level went up to 9.
Then the nephrologist confirmed: Chronic Kidney Disease.
Worse: Stage 5. The remaining function of his kidneys was only around 6-7% now.
I knew what was coming. I had searched and Googled (not recommended) and I prepared myself for the worst but you never really get prepared for these kinds of things… I’m not even the patient and yet I cried more than he did.
The doctor did comfort me lol and told me that it wasn’t the end of the world. For one, she had patients who continued to live normal lives even when they had to insert dialysis sessions in between. And there’s always a kidney transplant as an option, too.
Right now, we’ve reached a point of no return. Dada’s kidney condition is no longer reversible so all we could do is manage his symptoms and have a major lifestyle change so we could slow down further damage and postpone dialysis for as long as we can…
She would have wanted to do a biopsy the first time she saw us but it was costly, around 40k, so she wanted to start with labs first. She checked if Dada’s CKD was a complication of other diseases such as autoimmune diseases like lupus (like Selena Gomez has) or diabetes (which Dada’s family has a history of). Thankfully, the first was negative and his blood sugar was normal.
A few weeks later, we went to see another doctor for a second opinion and honestly, I wanted to just back out. It felt like going through the same set of rollercoaster emotions when you’ve just recovered from it the first time. I wasn’t even the patient. Proud to say, I didn’t cry this time around. I had to be strong for Dada.
The second nephro pretty much confirmed the same things our first nephro told us. And she explained that while dialysis might be in the near future, it could only do so much. Our kidneys have many different functions aside from filtering blood and having dialysis could only address that one part. If we wanted to improve his quality of life, lessen food restrictions, and, ultimately, lessen spending, our end goal should be a kidney transplant especially since he’s still pretty young (36) and healthy (cross finger) in other areas.. like his heart.
I knew of course that this would be our next best option. I’d done a lot of Googling lol (again, not recommended) but I’m pretty positive in this area. I even told Dada to give me around 3-4 years to figure out the transplant aspect even before we went to see the second nephro.
So what’s next for us?
The nephro advised us to have an Arteriovenous Fistula created. Basically, it combines the artery and vein in the arm to make the blood vessel large enough and strong enough to withstand the pressure from the dialysis.
Does this mean dialysis is next in line?
Not exactly. Currently, we’re doing a combination of meds and food.
The fistula was recommended because people with compromised kidneys can get more sick than normal, even with something as simple as coughs and colds. If that happens, they could be hospitalized and emergency dialysis might be needed, which would be done through the neck if a fistula does not exist. Doing it through the neck is more complicated, and requires more equipment, so it’s more expensive. Plus it’s also more prone to infections. They also wait around six weeks for the fistula to form properly so the sooner we get it done, the better.
Although Dada’s diagnosis is already at stage 5, we’re trying to postpone dialysis for as long as we can.
UPDATE (14/4): Now that I’ve read more (urgh) and heard from other people… I wonder if conservative care is our best option. Then again, I trust the nephro who is taking care of him. We’ll have his fistula created next week and follow-up labs and meds next week as well so we’ll see where we go from there.
What meds is Dada taking?
Most of his meds are for managing symptoms like high blood pressure, anemia, high potassium, and protein deficiency (because of his current diet) and for addressing other imbalances like high acidity in the blood/urine, high cholesterol, and high uric acid levels.
What about food? Are you open to alternative medicine?
Yes and no. If you are talking about herbal supplements, we are currently not interested, so please don’t offer us. We are, however, being very proactive about the food we eat right now. We’ve already seen a registered dietitian/nutritionist who told us what to do and gave us a meal plan. I’ve also joined a lot of groups and visited a lot of websites (legit ones!) that talk about kidney-friendly recipes.
Basically, this means checking the SPPP (sodium, protein, phosphorus, potassium) content of each recipe we follow AND each ingredient that we use.
We’ve already discarded MSG (sorry Uncle Roger) and pre-packed seasonings, canned goods, processed frozen goods, and other processed food like noodles. Anything high in sodium, basically.
What about flavor? What food can Dada eat?
There’s actually not a lot of restriction in his diet – just PORTION CONTROL. If you checked his sample meal plan, you’ll see that it’s actually a BALANCED DIET that we should all religiously follow, CKD patient or not. There’s a huge emphasis in moderation because even if something has low in (insert whatever), it will become high if you take too much of it.
We have to lessen his intake of pork and beef but white meat is fine – IN MODERATION. We don’t fully eliminate salt but we do replace them with other flavors through herbs and spices (recommended by the nutritionist). We were pretty amazed to explore other tastes beyond the salty we’re used to as Filipinos.
We’re limiting his intake of fruits (high potassium) and even green leafy vegetables (high oxalates which the kidneys would then have to filter). We were actually surprised that these types of foods weren’t high on the list considering that we label them as nutritious food.
What about physical activity?
If you go and search what creatinine is, Google results would tell you that it’s actually a waste product when we supply energy to our muscles. There might be several body builder and gym buffs who suffer from acute kidney infection because of too much exercise and/or the body-building supplements they take.
That said, there hasn’t been any restriction to his physical activities. I told his nephro that our two younger kids are rambunctious boys whom he would play with and bathe twice a day.
I got ourselves a stepper so we could be a bit more active when the heat or rain outside would not allow. Right now, we’re just closely monitoring his blood pressure (he feels nauseous and gets a splitting headache when it goes high), daily steps, and both our weight (he’s reached his ideal weight and will work on staying there).
The nephro also emphasized that other forms of physical activity are not restricted. Wink, wink. Sorry, just keeping the mood light.
What else have we done?
I think that one of the biggest reasons why I cried is because of the uncertainty of it all. How will it affect our family and our finances? I wasn’t too scared about the today and the later (new kidney yay!) but I was more scared of the in-between… because so many things can happen during that time. It’s especially scary being the breadwinner and only income earner in our family of five.
We’ve had family and friends ask and advise us about our next steps, especially in practical terms.
For starters, our nephro was pretty friendly and gave us a lot of info. After Dada’s second set of labs, she gave us additional prescription, which had a special code to receive 27% discount if we bought a certain number of pieces. Kidney patients have quite a special dietary requirement so she also gave us two bottles of a specially formulated milk + contact details to a supplier.
When she advised us to have a fistula created, she told us to apply for a charity case with the hospital’s social services and thankfully, we’ve already complied all requirements (including a donation to their blood bank which had people worried when I posted it), and just waiting for our schedule.
Secondly, Dada is now qualified to get a PWD ID and we are just now waiting to hear back from Social Welfare Services for his ID. We may be able to get discounts for labs and other prescriptions not discounted through the pharmacy’s special program. When I availed the discount, the pharmacist also helped us enroll for the same amount of discount for another prescription from our list. That’s a 500 discount from two week’s worth of meds – not bad! 🙂
Unfortunately, Dada’s insurance policy only covered death but none for sickness and/or hospitalization. Its current fund value doesn’t really amount much (maybe six months worth of labs and meds) so we’ve decided not to touch it and just keep the policy active.
We’re just really grateful that despite the additional expenses this health hurdle has brought us, we are still able to pay them off and fulfill our other monthly obligations. Of course, it’s not without the help of my parents, my friends, and a few outside sources.
Dada and I agreed that we’d just keep further help from the government, for example, would be our last card to pull… such as for really huge expenses.
As for HMO, we are currently working on that… and hope we could get that sorted out soon.
What else can you help us with?
Well.. if you have an extra kidney lying around, type O, maybe you can spare us one and donate? 🙂
Our best bet is from family and relatives but I’m not quite sure how easy it is to find someone who would be willing to make such a huge and noble sacrifice… Even harder to ask that from strangers.
But seriously, I would also highly suggest that you create last wills to allow yourself to donate one or more of your organs. If you have a driver’s license, check the back and see if you’ve allowed yourself to donate. If you haven’t and you are willing to give away your organs, please change that option when you renew your license.
Donating saves lives. You get to be a hero and live on through other people.
Another way you could help us (for now), would be to share places where we can buy or eat kidney-friendly food. I think that vegan or vegetarian places are really good options but they can be anywhere that has chicken/fish and veggies options and less salt and no MSG.
I’ve recently made some serious shopping on low-sodium food alternatives such as soy sauce as well as meat alternatives. We also have to keep our potassium, phosphorus and protein consumption. These things naturally occur in food so we just have to make sure we’re not going beyond our maximum allowed levels.
I also don’t mind being gifted herbs and spices (live plants or bottled) if you have extra. 🙂
How is Dada doing?
Well, at the risk of toxic positivity, I would say that he’s doing a lot better than he did the time we first visited his nephro.
His ankles are no longer swelling and his face is no longer puffy. He still pees at least 1 liter everyday.
We constantly monitor his blood pressure to make sure they’re in the 120s – 130s range. If he reaches 160s, he’ll have to pop in another pill on top of the 10 tablets he already takes each day.
He’s lost 5kg in the last month but I think it’s also been because he was adjusting to his new diet. He is at his ideal weight now though (the 5kg he gained during the pandemic haha) so we’re just working on maintaining that.
It’s mostly Dada’s mental health and disposition that can be a struggle… understandably so because everything happened within such a short span of time and to be told that you’re at stage 5 CKD a week or so after you first visited the doctor is… I don’t even know how to describe it.
As the carer, it’s really being the cheerleader on top of working and cooking and taking care of the kids and the house… is what makes it exhausting… most especially when the person you are cheering on doesn’t always get cheerful. LOL. We try our best not to stress him out but it’s tough with small kids around; I just mostly let him play online games with friends although my biggest peeve is him sleeping at 1am-2am still. He says he finds it hard to sleep and he gets disturbed too (wakes up 3 times the entire night to make trips to the bathroom); he barely takes a bath now unless we go out LOL and this really irks me but I just keep these things to myself and keep my sanity intact. HAHAHA.
But I think that we’ve adjusted little by little. Our youngest is 2 and doesn’t have a clue. Our 5yo middle child just knows Dada is sick and needs to eat healthy food. Our 10yo is pretty mature and does a really great job assisting me, including going to our neighbor to buy fruits and veggies. She’s also learning to cook and prepare food along with me.
Will we still be traveling?
Honestly, we haven’t quite figured this out yet. We don’t know what is in store for us in the next few weeks or months so we’re taking it one challenge at a time for now.
I’m stacking up on food and kitchen items to help with the new diet and lifestyle, for example, and we’re just listening to his body and make sure he’s not overly exhausted.
And then, of course, our finances will have to be diverted in other areas because we still have other obligations to take care of aside from the food and the meds and the labs. We want to make sure we’re still keeping things as normal as possible for the kids… maybe we can take shorter trips for now as I can’t drive yet. LOL.
An advice to anyone who’s reading
I really wanted to write out this post as a way to update family and friends because we’ve been repeating the same thing over and over to different groups – it’s exhausting because it’s such a heavy emotional burden to unpack. But the more I wrote, the more I realized that I wanted to make this informative as well… in the hopes that it helps someone not have to go through the same thing we are going through.
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Dada’s first symptom actually happened way back in 2020. So around October that year, I got him a Maxicare card for unlimited labs and checkup. He had been complaining about his foamy urine and worried that there was something wrong with his prostate (his late uncle recently died from prostate cancer early that year). Thankfully though, his ultrasound turned out normal that time.
I could not remember what happened that time and could not remember seeing his results but when I emailed Maxicare to resend me those lab results, that made me feel even bad about the situation.
I’ve been feeling guilty because we knew we had symptoms going on but just ignored it pretty much. I think I remember Dada telling me that he was asked to have another lab procedure that was not available at the Maxicare clinic. When we looked at his lab results last month, we saw that his creatinine was already borderline high and his uric acid was also pretty high. That had already been the first signs that something was wrong but we ignored it.
A few weeks after the diagnosis, I had learned to move on and accept the situation but there are just bad days when I would recall over and over the what ifs: What if we had gone for a follow up checkup immediately? What if we had Dada checked and tested every year even for the most routine bloodwork? *sigh*
I admitted to delaying it for so long because I wanted to save up to get both of us an executive checkup… now that we’ve gone through the whole process, the labs and consultations we’ve spent on costed so much more than a basic executive checkup package… and that breaks my heart even more.
A routine checkup would just have cost around 1000 for two doctor visits and maybe around 2000 for basic CBC and urinalysis tests. You can even get a 1100 prepaid card from MediCard and it already includes an Annual Physical Exam and unli consults.
Last year we went on a major splurge spending a looooot of money on a kitchen and bathroom renovation plus travels. I’ve always felt like over the years, when I did something extremely fun and happy, life would always balance out and immediately came back with something bad for me…
… I went to a birthday party extremely drunk and the next day I got fired from my first every full-time online work
… I attended a friend’s wedding and the next day, I lost a client and had to refund her payment… even before the project started
… Last year we had a grand time spending a month each in Boracay and Camiguin and had a kitchen and bathroom makeover, and now we are facing a health crisis… and we’re pretty much at the point of no return unless we get a new kidney
So basically what I’m saying is that, if you have extra money now, have yourself checked. Saving at least 200/mo should give you enough funds to get the APE + unli consults package I mentioned earlier.
If you’re employed, go crazy and max out your HMO’s coverage.
If you’re a freelancer, protect yourself: get prepaid health cards for doctor consults and labs. If you can afford to get an HMO plan, it’s a better option – you can get an individual or family plan or team up with other individuals to avail the SME group plans.
Most importantly: make sure that you lead healthy lifestyles.
In 2021, my father was diagnosed with a huge tumor that covered his kidney, it had to be taken out. He currently has one kidney now but doing well with exercise and a balanced diet. Mind you though, my father has been very conscious with his food and lifestyle for the past 10 years or so and yet he wasn’t spared.
We tried to figure out where Dada got his CKD and couldn’t quite pinpoint it. At first I thought that it might have been a result of diabetes (his late mother and aunt died due to kidney failure as a complication from their diabetes) but it turned out that his blood sugar was normal. In his 2020 labs, he had really high uric acid but now that I think about it, I’m not sure which one caused the other… they’re pretty much interconnected.
He didn’t really abuse on food, he eats veggies, our drinking spree for the past ten years only happens maybe once a quarter, he doesn’t even eat as much sweets as I do. Maybe he loves salt? soy sauce? oyster sauce? He eats street food and animal guts but only does it maybe 2-3 times a month. We pretty much eat the same stuff at home so if his condition accelerated because of his food, it should have done the same for us. But then again, maybe genetics also played a huge factor there.
Apparently, high uric acid is pretty common among males this age. If you have foamy urine or your ankles swell, have yourself checked.
If you have constant headache/migraine to the point where you’re throwing up, there could be something seriously wrong. It could be your eyesight but, in Dada’s case, it could be CKD and the toxins have been building up in your bloodstream and causing you to throw up.
I guess ultimately, the best way to prevent these conditions from worsening would be to have yourself checked regularly.
Whew. That was a lot to unpack. Sorry.