Cassandra’s Appointment With Urologist – 4 Sept 2020

So the urologist’s nurse finally gave me a date to bring Cass to see Dr Susan. We waited for more than 3 months since the MRU procedure on 18 May 2020 to get this appointment with me calling the nurse every week. And if it wasn’t because Cass got a UTI attack two weeks ago, the nurse wouldn’t have given me a date so soon.   I don’t blame her as this is a government hospital with a long list of patients waiting to see Dr Susan, the head of Urology Dept of HKL.  She could get me an appointment to see just any junior urologist but I only want Dr Susan to manage Cass’ complicated issue.   I can see that priority is given to dire needs patients, i.e. those with cancer or other pressing issues.

As usual, we had to ‘camp’ at HKL for almost the entire day just waiting, from 10 a.m. through 3-ish p.m..  Cass is now scheduled to undergo two diagnostic tests before Dr Susan can decide on the next course of action: a cystoscopy (bladder scope) scheduled in November 2020 and a MAG3 scan in December 2020.  Cass will have to be sedated under GA for the cystoscopy.

A renal MAG3 (Mercaptuacetyltriglycine) scan is a diagnostic nuclear medicine test that allows the doctor to see Cass’ kidneys and learn more about how they are functioning.  A radiopharmaceutical called Technetium-99m MAG3 will be injected into one of Cass’ veins. Technetium-99m MAG3 has a tiny amount of radioactive molecules in it. A special camera, called a gamma camera, is used to take pictures of the kidneys once the radiopharmaceutical has been injected.  During the briefing by the radiologist, I was told that after the MAG3 procedure, it’s best to avoid touching Cass as the radioactive materials can be transferred to anyone touching her. She will need to drink loads of water to flush out the radioactive materials.

This is the creepy old building that houses the radiotherapy and oncology unit at HKL.  We had to wait for almost an hour to get a date for the MAG3 scan and for a briefing by the radiologist.

From the specialist clinics building, Cass and I had to walk for about 10 minutes under the drizzle to this building and stopped twice to ask the patrolling police officers for directions. HKL is a very huge place with many buildings for different units. Patients and staff often have to walk from one building to another.  We walked past the A&E of HKL, the creepy place that still gives me nightmares 😱.   If only this congenital issue is covered by our insurer, I’ll choose a private hospital, any time.



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Update On Cassandra’s Appointment at HKL – 5 March 2020

I finally got an appointment to go to HKL today, but not to see the Urologist. I went there to sign a Consent Letter and to get a date for Cass to do an MRU (Magnetic Resonance Urography).  The parent needs to sign a Consent Letter as the procedure has some risks tied to it. However, not all patients will experience these side effects. In the past, Cass had gone through MCUG and MAG3 scans that required contrast injected via IV and thank God, she didn’t suffer from any side effects. Hopefully her body will have no issues dealing with the contrast again this time. Fasting is required and besides having contrast injected via IV, Cass MUST NOT move throughout the 1.5 hours inside the MRI tunnel, which emits deafening sounds. Any movement will render the images unclear.  Cass had done an MRI before 6 years ago but that was without any contrast injected. The images were not 100% clear.  I think the hardest thing about this procedure is not being able to move for 1.5 hours and being strapped and wrapped up like a mummy;  not fasting for 8 hours or more.

The Consent Letter:

I was late for almost an hour for my appointment with the Urology Dept nurse as I couldn’t get a Grab driver. None of the Grab drivers wanted to accept a passenger who’s going to HKL, thinking that I must be sick with some suspicious virus.  HKL is one of the government hospitals to handle Covid-19 cases besides Hospital Sg Buloh.

I then downloaded the My Car app and finally managed to get a kind driver who came to pick me up. We chatted throughout the ride to the hospital. He went to the wrong building (HKL is really HUGE!) and had to make a detour; I had to pay extra and was terribly late. He told me that he’s now very careful with accepting orders to and fro hospitals; orders to and fro the Sg Buloh Hospital will never be accepted as it’s the centralized hospital for all Covid-19 cases in the Klang Valley. Thank God I managed to get a Grab driver after the appointment some 4 hours later, as the driver had to drop off a doctor at HKL. On both trips, the drivers wore face mask. The My Car driver told me that he has to sanitize his car every 4 hourly and fumigate his car with potent disinfectant once a week.

I wore a mask 😷 throughout my time at HKL; also washed and sanitized my hands umpteen times till my hands now feel like a 100-year old woman’s wrinkled hands.

Hand sanitizer located on every floor and at the lift areas:

From the Specialist Centre at HKL, I had to walk under the sizzling hot sun to the Women & Children Hospital, some 10 minutes walk away.  This is housed in a new building, which is so huge that I kept getting lost inside.  Each floor looks like a maze inside, with many doors unlabelled.  From the 9th floor, I had to go the 2nd floor, then back to 9th floor and finally 1st floor.  Even finding my way out of the maze was mind boggling and I had to stop several times to ask the guards and doctors for directions back to the main lobby for me to order Grab.🤪  The only upside is my Fitbit buzzed and vibrated to inform me that I had hit 10,000 steps! Yay!

This is the Imaging Dept and there is no signal and no mobile network here, thus couldn’t do anything but people watch for more than an hour in freezing temp.

At the ward, I saw small kids undergoing dialysis and it’s really heartbreaking.

At the Registration Counter, I saw this little boy of about 5 years old hooked to a machine with tubes. It must be an oxygen tank or something.

At the Imaging Department, I saw a Malay man with 2 boys – one is about 12 and the other about 14 and both of them, though mentally normal, were on a wheelchair each. One of the boys has dwarfism and digestion issues and the other boy couldn’t walk and has a slightly enlarged head.  And I thought how unfair can life be for this man as both his sons are wheelchair bound and sick but he looks like one very loving and patient dad.

Another Chinese lady walked out of the Imaging room with her maid carrying her daughter (about 8 years old) and this girl’s body is floppy and looked ‘twisted’. I could only guess that she has severe Cerebral Palsy and some other issues.  At the lobby several Down Syndrome and cancer kids walked past me.

Like I’d mentioned before, whenever you feel like life’s unfair to you and you feel dissatisfied with your current life, just take half a day off and make a trip to HKL. You’ll instantly feel that your life ain’t that bad after all when you compare your life with what you’re bound to see at the hospital.

Cass and I now have a little over 2 months to prepare ourselves mentally for her procedure. Wish us luck. We really need loads of it.

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Update On Cassandra’s Appointment With The Urologist at HKL On 4 July 2019

It took me almost half a year to finally secure an appointment for Cass to see Dr Susan, one of the top urologists at HKL. She has a wealth of experience dealing with a myriad of urological disorders from patients young and old. She treats patients not only at HKL but travels all over Malaysia to treat patients.  Dr Susan used to see Cass but I have not brought her back to see Dr Susan for almost 5 years.

Firstly, it was not easy to get through to Dr Susan’s nurse. When I finally got through, the nurse wasn’t around. Next came Hari Raya and the nurse went on leave. When I finally got hold of her on the phone, she informed me that she lost Cass’ file and she needed a referral letter again!!  W.T.Fun!

One day, the hubs needed to go to HKL to visit his staff who was warded for amputation of leg resulting from diabetes complications. What good opportunity for me to get him to hand over the referral letter to Dr Susan’s nurse.  That was the first step to getting the appointment. Yet, it wasn’t easy and I had to waste another month calling almost everyday to finally secure an appointment!

When the nurse gave me an appointment that was one month away, I flipped and pestered her for a closer date.  Thank God the nurse is pretty easy going and helpful and she told me to come next week, on 4 July 2019.

Yay, first mission of 100 accomplished!

On the day of the appointment, we waited for 3 hours before it was our turn. And the appointment with Dr Susan and the nephrologist lasted for almost an hour. Dr Susan was very thorough as usual. She re-studied the previous MRI  report done on 30 December 2014 and based on the remarks written by the radiologist, she ordered a repeat MRI. This time, furosemide (Lasix) will be given along with IV drips to yield clearer images.

Based on the previous MRI report, the radiologist’s conclusion is – there is a high possibility of an external insertion of an additional ureter. But the MRI quality was poor as Cass moved during the procedure. She kept commenting that her body was itchy!

If the repeat MRI shows an ectopic ureter, Cass would have to undergo another surgery. This time, surgery will not be on the abdomen as the doctor said that operating from the old wound would be extremely messy due to adhesions. Cass has had two surgeries on her abdomen.  Surgery will be from her back, where the kidney is 😭

Our next appointment to see Dr Susan is end September 2019. Hopefully we’ll get a date to do the repeat MRI by this year. And hopefully Cass’ lifelong bladder issues will be resolved once and for all by year end. 🙏

I was surprised when on the day of our appointment with Dr Susan, I saw Cass’ file on the table. The nurse managed to locate the file. Good job to her!!

RM10 for this plate of Malay mixed rice.  There’s only 1 cafeteria at the Complex selling Malay food. I didn’t enjoy the food at all and I totally hate eating with plastic cutlery, especially when I have to use it on chicken with bones!

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Update On Cassandra’s Road To Recovery From Incontinence

It’s been 2 1/2 months since Cass started consuming Izumio hydrogen water to treat her incontinence and I am still very pleased with the results.

Cass has reduced the usage of diapers by more than half since she consumed Izumio. She only wears them when she is in school, when we are out for long outings and when she sleeps at night. During the day at home, she is completely off diapers.  Before she started consuming Izumio, she had to be diapered 24 hours a day. She had severe involuntary urine dribbling. According to her doctor, this is one of the symptoms of a patient with high grade kidney reflux. The kidney reflux problem has since been fixed with a surgery at 13 months old. This could also be that the nerves and muscles of her urinary tract are weakened as a result of 2 major surgeries when she was still a baby with delicate organs, nerves and muscles still growing.  The surgeons whom she is seeing cannot pinpoint what exactly is wrong internally that’s causing the incontinence though Cass had gone through a battery of invasive tests.

Today, she accomplished yet another milestone in her journey to recovery!

We had wanted to go to Mid Valley Megamall for shopping but the traffic into Mid Valley was horrendous! We spent over an hour stuck in the traffic and had to detour as all the entrance points into Mid Valley Megamall and Gardens were FULL. So I drove to Bangsar and went to BSC instead. All the while in the car, I kept asking Cass if she had leaked and if she felt like peeing and she said NO.

Cass was off diapers and only wore a regular pad today. I normally get her to put on a diaper when we are out. Today, I wanted her to break the norm and move on to be diaper-free when we go out.  She has to start somewhere and I chose today.

When we finally reached BSC, I quickly brought her to the washroom to ease herself. I was delighted when I saw that the pad was dry though she had held on for over an hour!  Then we went to have lunch and 1.5 hours later, I brought her to the washroom again. What a joy when I saw that the pad was still dry!  If you have a child who has battled with bladder problems all her life, seeing a dry pad would mean A LOT to you! The joy is immeasurable!

In the past before Cass started to consume Izumio, she would soak through a 42cm long pad and the pee would seep onto the underwear in just 20 minutes. What she has accomplished today is indeed a very big mile stone.  Previously, the urine leakage would be even worse whenever we were out shopping and had to walk a fair bit. Any rapid movement of her legs would exacerbate the leakage. I wouldn’t say that there is a 100% healing yet as I know that Cass’ bladder muscles and nerves are still weak but they are definitely on the road to recovery.  Based on my own observation, there is a 60-70% recovery now.  We still have a lot to work on together to strengthen her muscles, nerves and sphincters.

I believe that her muscles, nerves and sphincters were in a ‘comatose’ state but were revived when she started to drink Izumio hydrogen water.

Hydrogen is the smallest atom in the world that can penetrate your cells at a mitochondrial level and has strong anti-oxidant properties, eliminating free radicals within your body at enormous rates.

HOW HYDROGEN WORKS WITHIN THE BODY
1. Hydrogen is the smallest atom in the chemical chart making it perfect for accessing the deepest darkest parts of the body (mitochondrial cells) where others cannot reach. Every chromosome, amino acid and protein block in our bodies need Hydrogen to build good quality cells.

2. Hydrogen is required by our bodies for organ function. We get it from the air, from water, from food. But less from food because when cooked, there is hardly any hydrogen left. Hydrogen from the air we breathe dissipates quickly. The body needs Hydrogen in ion form. Water is our best source of it.

3. But now there is Hydrogen water – and Izumio has the HIGHEST Hydrogen levels in the world compared to any other Hydrogen product and the Miracle water from Lourdes, France, etc. It is proven that Hydrogen rich water is essential to building good, healthy cells and is also capable of balancing the pH within the body.

As I believe that Cass has weak muscles and sphincters, I am trying my best to get her to do exercises everyday.

I get her to do brisk walking everyday, indoors.  On days when I have the time, I jump with her on the trampoline.  When she jumps, she has a strong urge to pee. Heck, I feel the same too! In fact, after 3 C-section births and a short period of incontinence after the birth of Cass, I have a rather weak bladder too.  So we jump together on the trampoline and encourage each other to work out our muscles and bladders too.

… and watch the TV while we jump to beat boredom.

You can email shireenyong@gmail.com to find out more about the products that Cass is consuming.

 

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Cass’ Ultrasound Scan at HKL – 7 August 2014

Cass and I were at HKL from 8:30am through 4ish pm yesterday.

Upon arrival at 8:30am, we had to go to the specialists clinic building to register and to get a referral form.  Then, hubs drove us  to the pediatric building for the ultrasound scan to be done.   After the scan was done, we had to wait over an hour for the hospital shuttle van to bring us back to the specialists clinic building as hubs had something to do at his office.  Then we waited for another 3 hours for the urology surgeon to arrive and finally we got to see her.

Cass, having her lunch of corn flakes at the hospital…

 

And finally, had her blood retrieved… which was as usual fuss-free and drama-free from this brave little girl.  And for that, she got a cute Princess band-aid from the nurse as reward! 🙂

 

We are now awaiting the hospital to call to give us a date for Cass to do a URI (something like Magnetic Resonance Imaging).  For this procedure, Cass would have to be sedated via IV.  And if URI does not have any conclusive findings yet again, then she will have no choice but to do undergo more invasive diagnostic tests 🙁   But I know my tough little cookie will breeze through them again 🙂

 

 

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Manic Month Of May

My bad guts feelings are right. I could feel creepily that the month of May is a jinx month for Cass and me.

Yesterday I went back to my dentist as my gums and adjacent teeth still hurt 8 days after my premolar tooth extraction. No doubt, it was a very difficult extraction as the tooth was in-grown. And I found out just yesterday that the dentist trimmed my adjacent teeth so that the plier could reach the ‘cacat’ tooth. No wonder there is this nagging sensitive feeling and pain in the neighbor teeth and gums! And upon checking my gums, the dentist found out that there is a slight infection of the gums. So the only easy way to go to treat the pain is oral antibiotics 🙁

Dang the antibiotics as it is now causing me tummy discomfort and diarrhea. Actually I welcome the diarrhea to purge my guts of toxins but not the nagging tummy discomfort and drowsiness.

You see, I told you this month is doomed for me!

Never mind, only 3 more days to go before June rolls in.

After the emergency dental appointment in the morning, I rushed home to get some online work done as I had to bring Cass to see the Urologist in the afternoon. After a 1.5 hour wait, we were finally called to see the doctor.

After a long chat with the doctor (never knew HKL has such dedicated and hardworking doctors!!), the doctor has agreed to accede to my request of not letting Cass go through the CT Scan with IV contrast yet. And she has acceded to my request of not starting Cass on the oral meds for her bladder until her constipation issue is sorted out. This is because one of the side effects of the oral meds is constipation. Now I am waiting for a date from the hospital for Cass to do an ultrasound scan.

If something abnormal is picked up during the detailed ultrasound scan, Cass would have to do a CT Scan with IV contrast. And if indeed the CT Scan shows a hidden duplex or triplex kidney, my baby would require another surgery to correct the problem, so that her incontinence issue is solved. If that happens, it will be the third time Cass’ abdomen gets cut up *SOBS* 🙁

Sigh…

I need loads of prayers for Cass now. And I pray that there is no structural abnormality in her urinary tract. Only a miracle can resolve Cass’ issues now.

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Waited In Vain

See this fearless rascal?

Monkeying away with zilch fear within her today. I so LOVE her confidence and bravery!!

She knew just what she had to go through in the hospital today. She kept thinking that she had to go for an operation today, though I kept reassuring her that it was only a procedure with ‘a little’ pain. And she was the least disturbed or worried.  She knew that there would be 2 catheters to be inserted into her down under.

In the hospital while waiting for her turn, she kept bugging me to give her some subtraction sums to do (with 3 figures). She’s a Math wiz this girl and I am so proud of my 6-year old.

Outside the Urodynamics Suite, she kept hopping and prancing away, with NO FEAR of what was going to await her inside the suite. Wah, SUITE sounds so glam but inside is a tension room.

It was freezing cold outside the Urodynamics Suite and Cystoscope Suite. I was quivering in the biting chilly room and in nervousness too. While the rascal pranced away and kept irritating me (tugging my dress, flipping my hair, sitting on my lap), I was worried sick.  Perhaps, it was through monkeying away that she kept her nervousness away, if indeed there was any.

Then came the bad news! The dang X-ray machine konked out! Why la must it konk out after we had waited for 2.5 hours??? Shiats, so we were given another date to come again…  WTF!! And I now have 2 more weeks of anxiety. And the anxiety and worry that I had for the past 2 months were in vain.  And my migraine today was in vain too. Nothing was achieved today and I wasted my precious time in the hospital.  The only thing I got was the quick peek inside the Urodynamics Suite. At least now I know what Cass would have to go through in 2 weeks and how long the catheters would be inside her  *faint*

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Cassandra’s 1st Appointment With Nephrologist & Urologist at HKL

Yesterday was the first time I stepped foot into the grounds of HKL (Hospital KL), the place that has always given me the creeps each time I pass by this building.  When I was working in the HR Dept of a bank yonks ago, our HR Manager and Assistant Managers would visit staff who were hospitalized at HKL.  They would then relate back to us gory scenes in the hospital – like criminals chained up to hospital beds, accident victims screaming in pain and much more.

The purpose of our visit at HKL was to bring Cass for a third opinion on her bladder issue.

True to what has always been in my head, the images became a reality yesterday.  It happened as the hubster dropped me at the wrong place – which was at the Critical Section and A&E section of the hospital!  The moment I alighted from the car, I saw a man, half dead being carried out from a taxi.  Then I saw a couple (Mynamar or Indonesian). The woman was sobbing away like she lost a dear one. She was in pain and had to be assisted by foot to the Ob & Gyn Building.  She was wearing a ‘sarong’ and her tummy looked bloated.  I think she lost her baby or something.  And there were many patients in wheel chair and in crutches at the A& E and Critical Section, seemingly from accidents.  Many policemen were stationed there.  I felt like I was in a nightmare and wanted to leave right away!  I was shit scared but did not want to show Cass my fear. I asked her if she was scared and she said “NO, not at all”  *brave girl*

After about half an hour asking and looking around, with bad traffic in the hospital compound, we finally found the right place.  Thank God the specialists building is a new building and does not have that creepy haunted look like the old building and had no gory scenes.   When I entered the Nephrology and Urology Floor, the place looks very new and very clean.   Queue was not as long as I had imagined.  After a 1.5 hour wait, it was Cass’ turn to do her urine and blood test.  Once again, my little tough cookie trained from her baby days, did not shed a single tear.  As usual, I hugged her tightly and consoled her as she winced in pain when the nurse drew out blood from her hand.  But no drama.

At about 1pm, we went out for lunch at a nearby Teochew restaurant.  Then we came back at 2pm to see the doctors.  After a 2- hour wait, it was our turn.   Our consultation with the urology surgeon and nephrologist took about 45 minutes.

In summary, Cass would have to go through a Urodynamics test  in April to see her bladder activities.  A catheter would have to be inserted into her urethra and rectum, with water pumped into the catheter.  She will be asked to pee.  Scary?  No.  I have confidence my baby girl will breeze through this again. She had gone through even much worse procedures in the past.

Cass was such a darling yesterday.  Someone in the house with itchy fingers disabled the iPad and I had no time to enable it.  So I told Cass that she could not bring the iPad along with her to the hospital, to which she replied “mummy, never mind.  I will bring  my school Math books and reading books.  It’s better right?”   When I re-tried to enable the iPad again, Cass said “it’s OK mummy, my Math books are enough. I don’t mind doing Math the whole day in the hospital. I don’t want the iPad!”  Isn’t she such a darling?   She drives me up the wall every single day but things like these that she says can really melt away all my anger instantly 🙂

So here she is, my Math lover, crunching numbers away to kill time while waiting for her turn at the hospital. She brought along a small note pad to do the workings, an eraser and a red pen for me to mark her sums!  At the shop while waiting for our food to arrive, she whipped out her Math books to do more number crunching LOL!  She now tells me that her ambition is to be an accountant.  I’ll see…

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When she started to get bored with Math, she took out her English  and BM books and read to me…. so loudly that all eyes were on us muahaha!

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My baby girl was very well-behaved yesterday. I don’t think I will meet another 5YO who can spend 4-5 hours solving Math sums and reading school books. On our way back home after the dr’s appointment, Cass said this to me “mummy, I did it without the iPad!!”

Oh yes, I think Cass thinks maturely too, way too matured for her age. God bless this baby girl and heal her real soon.

 

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