Yvonne Foong: Fighting NF

Pei Lee’s dad dropped her off at my place this morning before visiting her brother somewhere else. She came so that I could teach her how to blog. Her new but still-empty blog is here peileelim.blogspot.com. She will be writing in Chinese but I don’t read Chinese so do read at your own discretion.

After thinking hard and discussing her case with John, I decided that the best I could do is by teaching her self-advocacy skills. That is, to let her voice up for herself, because I have my own fundraising in the midst while my bachelor’s degree is only half finished. Hence, she could possibly do much more on her own.

Just a little update on her behalf. Pei Lee showed her brain MRI to the neurosurgeon who operated on her in 1995. His name is Prof. Vickey, now working at UMMC. After reviewing her scans, the doctor noted that she did not scan her spine when she did so for the brain. Since it would be precarious to conclude anything without a complete review of all her tumors in the central nervous system, the doctor scheduled a spine MRI for her which will be done in October.

From my experience, MRIs at UMMC costs RM800.00 if not more. Pei Lee might well have difficulties paying it because she already spent RM1000 on her brain MRI at Tung Shin Hospital.

She needs immediate financial assistance, but I felt that we should take this opportunity to encourage her on doing something for herself.

Hence, besides explaining to Pei Lee how to use blogspot, I also told her about my two recent fundraisers at Taylor’s College which included selling t-shirts. Then, Pei lee asked if I would help arrange for her to sell t-shirts too. In response, I gave her the contact number of my t-shirt supplier and suggested to let her dad call them up. Then, I went on to explain the financial aspects of selling t-shirts.

My t-shirt supplier and it’s factory is located at Jalan 222 in Petaling Jaya, which might be a bit far for Pei Lee and her dad who live in Kampung Bukit Kemuning.

So if you happen to know a trustworthy supplier around there, please forward the details to me. Thank you.

As with blogging, my intention is to let Pei Lee spearhead her own t-shirt campaign when she does proceed.

If all goes smoothly, this could even restore her self-esteem.

Pei Lee and her dad dropped by again two days ago after she had an MRI of the brain done at a private hospital. This doctor she found herself ordered an MRI. When she came to my house this time, Pei Lee was confident that she needed surgery. She said the private doctor told her to go back to the surgeon who operated on her in 1995, who is now working at University Malaya Medical Center. She also told me he said she needed surgery that supposedly costs RM50,000.00. She mentioned that tumors at the back of her brain and at the top portion of her spine had grown.

But when I saw the letter of referral this private doctor wrote, I noted that he merely mentioned Pei Lee’s history of Neurofibromatosis, her Acoustic Neuroma surgeries and named a few of her tumors seen in the MRI. That was all. He did not say which tumor he felt needed attention and what surgery must be done. He did not offer his opinion either. He merely requested the UMMC surgeon to see her.

But Pei Lee sounded more serious that that. She so believed in the need for surgery that she said if she waited longer, she would be unable to walk. She came to me dejected and helpless.

Seeing how her legs bend lower when she walks now, weaker than last week, I mailed off her MRIs in a CD by Fedex to Neurosurgeon Dr. Gregory P. Lekovic at House Clinic for his opinion. Pei Lee had also asked me to do this.

My question is:

1.Without comparing the new MRIs with Pei Lee’s old MRIs, how did the private doctor come to the conclusion that her tumors have grown?
2.Without knowing if there are size differences, the doctor could only gauge by the tumors’ location and whether the affected tissues are capable of making her legs weak. In order to do this, he would have to pinpoint the tumor in concern but he could not even be clear about it. Even when one has identified the tumor that needs attention, one SHOULDN’T assume this to mean that the tumors had grown just because there are symptoms. It’s misleading and misinforming the patient.
3.Without knowing for sure what surgery Pei Lee needed, how did the doctor come to the conclusion that it would cost RM50,000.00?
4.He even said the price is not inclusive of I.C.U. charges.

I hope we will be able to do what’s right for her. If she becomes paralyzed, her family will need much more assistance in the long-run. That is definitely a much higher price to pay than what a good surgery can cost.

After an appointment with the Neurosurgeon, Pei Lee and her father visited this afternoon and shared their concerns with me.

Pei Lee lost a lot of weight. The tumor in her left check has grown and distorted her face further. Her upper body lurch further forward. As Pei Lee walks, her wading hands seem like they are struggling to propel her body ahead. Generally, Pei Lee looks like she is having more difficulty keeping upright.

I also noticed how she needs to get up more slowly from the sitting position. And when she is on her feet, Pei Lee needs to pause about two seconds presumably to regain focus.

Pei Lee said her hands feel like there are electric currents in them. She also said all four limbs of hers started getting weaker two months ago.

The doctor she saw this morning scheduled an MRI of the brain to be done next Wednesday.

Pei Lee asks if I could help highlight her plight and raise funds when they decide to have surgery. I need to think of the best way for doing this. Last time, we set up a new personal savings account under her name and blog readers donated directly to the account. It was just a few thousands that she withdrew and used to pay for some minor medical needs at that time. But she will need to collect a lot more for surgery if it is warranted. Possibly between RM50,000 to RM100,000 if surgery is done at local hospitals. I shouldn’t help keep tab of such a huge sum for someone else.

Maybe we could get the press involved and ask the newspaper to set up a fund for her using their own account.

I also have another dilemma. If I want to advocate for Pei Lee and generate publicity for her, I must also understand her situation very well and even find her the best possible course of treatment. Otherwise, I will be asking people to donate for a cause that I, myself, am not confident with. However, I might even have to speak with her doctors because Pei Lee and her dad have difficulty understanding what’s going on. But then, I am also afraid of crossing the boundary and doing too much.

Still, to advocate for someone, I feel I must understand the cause very well before I can speak confidently.

For instance, if you look at my own fundraising campaign info, I have established very strong basis for having surgery at House Clinic – because Dr. Lekovic is one of the few surgeons in the world who learned the Contralateral Transcallosal approach from it’s inventor. When using this technique to remove my Trigone Meningioma, there is far lesser risk of damaging my right field of vision.

There is, of course, a high cost involved, but I am basically vouching for myself.

Should I do all I can to find Pei Lee the best course of treatment? Or should I let her decide for herself and choose the option that is within her means of obtaining? But if it is left up to her choice, will I sill be able to advocate for her? What can I possibly say to convince? Emphasize on the fact that she’s marginalized? That would be unkind.

I hope MMA will not eventually campaign against me for violating their professional relationship with the patient if I have to understand the need for her to have surgery here.

To save us the hassle of getting referred from one doctor to another, we could also send her MRIs to doctors at House Clinic for their evaluation. But if they find that she needs surgery then where should she go?

So many questions!

Pei Lee and Fiona visited me at home on the fifth day of Chinese New Year. Fiona was the only one with a job and paid for lunch.

As mentioned in an earlier post, Fiona and I tried contacting Center for Independent Living in Kuala Lumpur, to provide Pei Lee with vocational training. I read about their work in the Reader’s Digest and thought they might benefit Pei Lee.

Sadly, they were too busy to even entertain us. Elsewhere refused to take up the Deaf.

I took candid shots of Pei Lee while having tea. Sorting through them, I see a lot of bitterness in her, etched by discrimination and fear for a world that sidelined this helpless woman. The last employer insulted Pei Lee so bad, she quit the job although she needed the salary so much.

When we first met, I thought encouraging Pei Lee to live like me would help. I thought she just needs to be industrious, motivated, and get a good push. But learning is really a talent or an ability provided by supportive upbringing. Pei Lee has long passed that stage, We need to help her differently.

I really do not like showing her to people like this to give her the needed assistance but it seems we have no choice. She’s so beaten up after trying and getting rejected. I can talk about quality of healthcare, but Pei Lee finds it hard to survive, let alone choosing good doctors.

I’ve just written to NTV7’s Finding Angels telling them about Pei Lee. Let’s see if they would help. If not, then I’ll write to other shows.

Do you think Pei Lee looks very real wearing my tee in these photographs? This is the kind of image I want Heaty4Hope to project. Genuine people, simple lives. Plain and ordinary.

Invited Pei Lee to my house this afternoon. Returned her ATM card and bankbook. Told her the pin number as well, so she may withdraw money to pay for her healthcare whenever necessary.

Pei Lee said she is looking for some simple work to do at home for money. Let me know if you have anything in mind. I’ll put you in touch with her. Remember Pei Lee’s highest education is standard six, she doesn’t speak English and she knows little Bahasa Melayu. She has NF2 and she is deaf, so don’t give her heavy work.

Pei Lee also hopes to sell her desktop PC. I’ve never seen it before, but according to my friend who saw it once, it might be a low specs computer. So let me know if you are interested.

Remember Pei Lee said she was seeing a “tabib cina”, chinese doctor? Found out today her tabib cina did not prescribe her ubat cina, “chinese medicine”. The tabib cina guna ubat orang putih. Namely, Terraquant. My bad for assuming. Terraquant is some new invention to relieve pain. It also claims to promote cell activity.

In the afternoon, I took Pei Lee to Segi College. Introduced her to Shaun, Roshan, and Reuben.
Reubs communicated with Pei Lee in written Chinese.

Now Yvonne needs to set an MRI and visual field test appointment. Jangan lupa!

Here goes something to consider. Pei Lee’s Maybank a/c currently has RM6,394.00. When we took Pei Lee to Sunway medical, she had about RM3,000. I guess people kept donating.

Pei Lee had been going to a Chinese Herbalist for two months who prescribed her some medicine daily. She claimed to have been healed because her pain ceased. (My doctors said pain is not associated with nerve damages so maybe it was something else). I haven’t seen her lately, so I don’t know how her walking looks like now.

Since Pei Lee does not need surgery soon, I wonder what am I going to do with the money meant for her.

1. Should I hand it to her? Treat it as a gift. Tell her it is for her medical treatment, but it is up to her how she wants to manage it.

2. Keep it in the bank, so when Pei Lee does need anything, we would have money ready for her. Something is not right with this choice, which I can’t pinpoint. Is it a legal issue? I feel odd having control over the money. There are others who may need help, which often makes me think I could be helping them.

3. Take the money and donate it to a good cause. Ah, I think this would go against the law as the account belongs to Pei Lee and besides, people donated to her, not anyone else.

4. Manage Pei Lee’s healthcare. ie. Pay for her periodic MRI scans. This is least viable as my ability and resources are lesser now. Mom started working again which means I can’t travel much. I also want Pei lee to be independent. When I pay for the MRIs, I would have to advise her which hospital to go to, and follow up with her doctor at that hospital, which is taxing.

Oh, yes, notably, the difference between private and government hospitals in Malaysia is the amount of effort a patient needs to put into managing their own health-care.

5. Squander the money!

SJMC sent me a letter saying they investigated my complain and “explained” to me what had happened between that doctor, Pei Lee, and I.

I don’t know where their conscience are. But, hello, I did not write in to receive the doctor’s opinion on why he refused to see Pei Lee. It was his manners. And if truth is so simple, do you think I would take the trouble of writing in?

I am complaining about the doctor’s manners! And frankly, his opinion was not conveyed to us because his rude behavior overshadowed all else. His written words to us on that day consisted of one liners and brief remarks. Can that explain much in 10 minutes? You be the judge. (Note that one liners weren’t all to his rudeness)

Ok, let me give you an example. Supposed this was the case. “During the Dr’s consultation, he discovered that she had previous surgeries done in GHKL and she has now presented a new problem at a Cervical Neurofibroma causing Neurological problems. As there was no letter of referral and MRI reports, Dr. could not make an accurate diagnosis of her present condition.”

That is the hospital’s explanation. Now Supposed the Dr. actually said to us…

Yvonne: She was previously treated at GHKL.
Dr: *makes a face* Go to GHKL. See Dr. Ng.
Yvonne: But that’s where we came from. We want you to see her because she said she feared GH doctors might not be able to treat her.
Dr. *Makes a face again* Go back to GH. Here very expensive.
Yvonne: Doctor. The fact that we decided to come here says a lot about our intentions. No?

Do you think that explains what the letter explained? Also, please note that Dr. did not suggest an MRI until I ASKED FOR IT. THAT IS AFTER THE DOCTOR TOLD US TO GO BACK TO GH! But the letter says otherwise. Ok, maybe the doctor has poor memory. But if he is unsure, then don’t try to cover up, just say he wasn’t sure what happened.

Another point, those in bold were the exact words in the letter. Now, note that at the end the hospital said the doctor could not make an accurate diagnosis. Then, why did he assume it was a cervical lesion based on our minimal explanations? We weren’t even given the chance to explain much and he did not even test out Pei lee’s legs by running a physical examination.

If he could not make a proper diagnosis, why did he formulate any opinion without further investigation? So is that letter inconsistent?

You know, in the U.S. I have done several one-off medical consultations like this. And the doctors there never made sweeping remarks like he did.

So did we give tje doctor a reason to be rude? I don’t think so. Even I, when seeking medical treatment for myself, have met with doctors who could not help me, who had to suggest alternatives, but none of them EVER spoke to me the way that SJMC doctor did.

Actually, this doctor seems questionable based on another friend’s experience being treated by him. If I knew it was HIM who RECKLESSLY managed my friend’s surgery, I would not see him at all!

I really hope my friend would go ahead and take legal action against him, because she suffered actual damages due to his negligence, That ought to teach him a lesson.

So what am I going to do now? Sabrina suggested I pursue further. Should I? Where do I go? But we haven’t got any evidence.

Oh, I wonder why the nurse who stood behind the doctor kept grimacing, as if she, too, was embarassed with the doctor.