19F Urinary Bladder Exstrophy Ascites Telangana PaJR

 24-01-2025

This is an Online E Log Book to discuss our patient's de-identified health data shared after taking her signed informed consent form. Here we discuss our patient's problems through series of inputs from available global online community experts with an aim to solve those patient's clinical problems with collective current best evidence based inputs.

OPD right now:

19F with urinary bladder extrophy since birth. She was operated and her bladder open abdomen was closed with a small opening preserved through which she became accustomed to draining her own urine using a small infant feeding tube after washing the tube in water and washing her hands. Recently she has had some stones coming out through that orifice which made the urologists perform another procedure following which she developed mild ascites which they tapped for tests and then sent to us.

She's already given her inter in science and we are looking for medical students @PPM3 who can help her to get into MBBS. Her father died when she was 1 year old and her mother has managed to bring up her and her elder sister against all odds working as a farm laborer. Recently her elder sister died in a car accident although her sister's daughters are also studying inter and nearly her age!

While all medical students read about this disease in anatomy, I was struck by the actual  rarity of her disease.

To quote:

"Extreme rarity of the disease limits the surgical opportunities to practice the complex closure required in these patients. For this reason, patients have the best outcomes when the bladder closures are performed at high volume centers where surgical and nursing teams have extensive experience in caring for the disease.[6] The highest volume center in the United States, and the world, is the Johns Hopkins Hospital in Baltimore, Maryland; they have seen over 1300 exstrophy patients in the past 50 years"!

https://en.m.wikipedia.org/wiki/Bladder_exstrophy 

@PPM4 if you saw the Wiki image above and could read the article then you may by now have realised why they were instructed that she would never become pregnant. Ambiguous genitalia is a frequent clinical problem also dealt with by endocrinologists like @PPM2 where their focus could be on ruling out CAH while we would unfocus in trying to answer her multi modal requirements @PPM5

@PPM3 has done a fabulous job since yesterday, in looking after her career path toward becoming a doctor and @PPM7 you may remember him as that first year MBBS UG who presented a case in the CME you chaired in 2023!

@PPM6 hope we shall be able to get a pelvic ultrasound today along with an OBG consult for her fertility issues and get a radiology USG guided ascitic tap. I tried to tap the fluid yesterday and couldn't get it and wish I could blame the diameter of the iv needle we were provided.

PPM 7 - Yes, I do remember. 

Very heartening to see this breed of doctors. 

Where is he working now?

PPM 1 - Telangana.

PPM 1 - Reviewed her again today in the OPD with @PPM8 and @PPM6 

Whatever ambiguity we may have been knowledge biased to have harbored around a possibility of ambiguous genitalia was removed by the subsequent MRI that was again done by our hardworking intern who managed to convince the MS why she needs an academic free MRI 👏👏

Uterus and ovaries are clearly seen and her bladder that is also seen is partly fashioned from her ileum

PPM 1 - Left ovary 👆

PPM 1 - Right ovary and adnexal mass. 👆

PPM 1 - Current problems to be further explored are:

1) Ascites

2) Bladder outflow

3) potential fertility issues as told to her earlier need to be clarified from OBG

4) Her career pathway toward becoming a doctor starting from cracking NEET under the PWD quota @PPM3.

PPM 3 - 👍

PPM 1 - @PA please share your patient's documents showing the details of her surgery done here as well as previously.

Please be careful to remove the patient's name or any other identifiers from those documents.

PPM 3 - Please feel free to share your patient's thoughts about becoming doctor and giving NEET. 

Is she planning to give exam this year?

PA - Yes. She wants to write the NEET exam.

PPM 3 - 👍

That's great. How is the preparation going on. Is she giving any practice exams for NEET?

PA - Not yet.

PPM 3 - Neet will probably be conducted in May 2025.

we have 4 more months to prepare for the exam.

PA - Now what can the patient do?

PPM 3 - Try to write 1 grand test of full syllabus.

The patient will get to know her weak chapters, try to make a schedule to read those chapters in first 2 months. 

Then revise remaining chapters in next 1 month. I would recommend to write atleast 1 grand test each week in last month (April).

PPM 1 - 👍

PPM 3 - https://drive.google.com/drive/folders/1DKB7O8yytBSCTvQ1468gRMzajoUEGuY6

These are some pdf I have related to neet.

Can you tell us what resources the patient use to study.

like books or pdfs, youtube classes etc.

PA - Books only.

PPM 1 - Where can she appear for that test? Here in this PaJR group?

PPM 3 - There are some apps like Physics Wallah sir. She can attempt a test for free.

If she is preparing at home, I would recommend to take only test series subscription online and give test every week.

PPM 1 - 👍

PPM 3 - Is she preparing at home?

PA - Yes.

PPM 3 - Okay.

When can she write a mock exam. Decide according to her convenience. Take time if she want to prepare. But tell us the date so we can follow up.

PPM 1 - 👍

PPM 3 - Will the patient take the test on Monday 27th January?

PA - She should go to the urologist on Monday.

PPM 1 - 👍

Let's hope next Monday.

PPM 3 - 3rd February?

PA - Okay sir.

PPM 3 - Does the patient have a computer at home?

PA - No sir.

PPM 3 - Online tests can be difficult on phone. But she can do it.

PA - Thanks for your support sir.

PPM 3 - Let the patient take this exam, prepare well. Update us with marks.

I recommend physics wallah.

Download this app, and take mock test under dropper batch section.

PPM 3 - 👍

PA - Okay.

PPM 3 - This one.. first test is free. so, no need to pay for anything.

PA - Okay sir.

But small problem sir. The patient is telugu medium.

PPM 3 - Okay. Don't use app.

Will share a pdf. This is NEET question paper. Set time for 3 hrs and attempt this paper. I will send answer key later. She can download these pdfs online.

27-01-2025

PPM 3 - @PA how is the preparation going? If any doubts share in the group. We will help you.

PPM 1 - @PA please update.

We got the MRI done on Saturday which is showing a good report

Did the patient meet the urology team today?

Can meet me in the ICU today afternoon at 2:30PM to finalize.

@PPM9 added here to witness how @PPM3 and team will be able to help her crack the NEET and become a doctor.

PPM 9 - 🙏

PA - Report has not come yet.

PPM 1 - No problem

We'll get that by afternoon today hopefully

Are you all in the hospital now?

PA - Yes.

PPM 1 - Was an ultrasound guided ascitic tap done today for her @PPM8?

PPM 8 - Not yet sir, they said that they’ll do it after 2pm.

PPM 1 - 👍

Well @PPM3  we would need hopefully this week before she can actually start working on her preparation as by this week we hope to resolve the diagnostic and therapeutic uncertainty surrounding her ascites.

@PPM8 any idea why the urologists replaced her tube insertion and urine collection (intermittent self urinary catheterization through the permanent suprapubic cystostomy) routine of 18 years with an indwelling foleys catheter since last few weeks? Can you talk to the urologists and find out?

PPM 3 - 👍

PPM 8 - Okay sir i’ll talk to them.

28-01-2025

PPM 1 - Was the ascitic tap done yesterday @PPM8?

PPM 8 - Sir, yesterday they have tried but it failed.

They asked the patient to come again today.

PPM 1 - Oh!

PPM 8 - @PPM1 Sir should we send ascitic fluid for any cultures?

PPM 1 - Alright that too and more importantly: 

Ascitic fluid for SAAG with serum albumin

Ascitic fluid for TLC DLC

Ascitic fluid for CBNAAT done free of cost here from our rntep center near pulmonology OPD.

Was it sent today at @PPM8?

PPM 8 - Yes sir sent

PPM 1 - I guess the reports would be ready by now?

PPM 8 - 

CBNAAT report will be given after 3 days sir.

PPM 1 - Oh low SAAG

Now more important report is the ascitic fluid TLC DLC which should have been available even before the biochemistry as the cells can get degenerated if not seen ASAP.

PPM 8 - Yes sir, the report has been given, will collect it from lab and share it asap.

PPM 1 - 👍

PPM 8 - Sir, the printed report will be given tomorrow morning.

PPM 1 - Thanks.

30-01-2025

PPM 1 - 

In view of the ascitic fluid reports that are suggesting inflammatory peritoneum, we may need to explore the peritoneal cavity laparoscopically and yesterday I talked to Professor regarding further plan and we agreed that it could be done in the same setting under one time anesthesia where the urosurgeons could go through her umbilical tube (fashioned through the mitrafan off procedure) to take out her stones from the urinary bladder while the general surgeons led by Professsor could do a laparoscopic exploration with peritoneal biopsy.

@PPM8 would you like to discuss this with the professor today and if necessary you can call me and I can talk to him to add more clarification if necessary at the same time?

@PPM8 can you share the CT and MRI abdomen images of her urinary bladder?

PPM 9 - @PPM3 did you talk to the 19f or her family?

PPM 3 - Not yet... will do next week, as she is still undergoing treatment.

PPM 8 - Sir, I have spoken to Dr. Urologist sir regarding this, he seemed to be agreeing to do the procedure and he shall speak to you about it.

PPM 1 - Thanks. He'll need to coordinate with the urosurgeons too.

31-01-2025

PPM 10 - 

PPM 1 - Thanks @PPM10 both Prof Gen Surgery and Prof Urology have agreed to do both procedures (stone removal and laparoscopic peritoneal exploration biopsy) at a single OT sitting.

PPM 10 - Ok sir 

They will come on Monday itseems sir.

PPM 1 - Ask the PGs of Urology and Prof,  General Surgery as to when would they plan to admit her for the OT.

PPM 10 - Ok sir.

PPM 3 - @PA regarding your PwD certificate

please apply for fresh certificate again. the percentage should be between 40 to 80% to qualify for NEET.

You have to go to nearest government hospital to get the certificate.  

ask them to mention: you have no mental illnesses in the certificate.

try to get the certificate before NEET counselling.

I speak telugu. if you have any doubts, you can call me. I will clarify.

PPM 1 - 👍

05-02-2025

PPM 3 - @PA any update on preparation?

PPM 1 - They did not come this Monday or today?

I guess she may have to hold that till her OT is decided

PPM 3 - Okay sir.

10-02-2025

PPM 1 - @PPM10 is she still in urology ward? When was her OT for stone removal exactly?

PPM 8 - Sir her surgery for stone removal was done on 5th.

PPM 1 - Can you check her in the ward and share how she's now and also share the OT and post operative recovered as well as daily notes since then?

PPM 8 - The patient is doing fine sir, she lost her mobile phone recently hence is not able to stay in contact with us.

PPM 8 - Surgery was done on 07-02-2025

PPM 1 - Thanks @PPM8

[11-03-2025 16:10] PPM 1: Urology Prof Murthy said she was discharged long back. Any update on the

 patient @PA?

[11-03-2025 16:15] PA: Hii sir

[11-03-2025 16:25] PPM 1: Hello! How is your patient?

[11-03-2025 16:26] PA: She is fine sir

[11-03-2025 16:27] PPM 1: Preparing for neet?

[11-03-2025 16:27] PPM 1: Have all your patient's stones been removed?

[11-03-2025 16:28] PA: Haa

[11-03-2025 16:29] PA: Only bladder stones are removed.

[11-03-2025 16:33] PPM 1: Kidney has stone's

[26-03-2025 14:17] PPM 3: @~PA@PPM1 Is the treatment regimen done? shall we discuss about

 NEET prep?

[26-03-2025 14:25] PPM 1: Yes. Her bladder stones were removed. No OT dates given yet for the renal stones

[26-03-2025 14:36] PPM 3: This year NEET UG is scheduled on 4th May (only a month till exam date)

key changes in exam patter this year

- previously the paper had 2 parts "A and B". Part B had 5 extra questions as choice for each subject.

 from this year they are removing these extra questions from exam.

- Previously exam time was 3 hours 20 minutes. now its only 3 hours. (as exam will have 20 less

 questions)

So, the probability of scoring high marks is less this year.. and some are predicting cutoff will also be

 less this year.

[26-03-2025 14:37] PPM 3: @~PA

please give an update regarding your preparation. 

if you have any doubts you can call after 6 pm

[26-03-2025 15.14] PPM 9: She can get it..

Once followup her PwD status certificate.

And just speak to their parents and guide her for 1 que paper each of last 10years per each day..

Dont stress her about exams.

Not at all necessary.

She has already demonstrated amazing nursing and doctoral skills in her family as its evident above in

 the blogspot.

@PPM 1 sir.

[02-04-2025 08:40] PA: Sir patient wants to start her neet preparation can you please help her?

[02-04-2025 09:33] PPM 1: 👆@~PPM3

[02-04-2025 09.40] PPM 3: 👍

[02-04-2025 18:00] PPM 3: @PPM1 @~PPM9, unfortunately this year NEET Registration last date was 7th March. As our @~PA was busy with the procedures and to-and-fro trips to the hospital she missed the registration for this year NEET UG. She decided to take a drop year and prepare well for next year's NEET. Current plan is to secure a PwD Certificate from nearby government hospital and join in a long term NEET course nearby her hometown

[02-04-2025 18:01] PPM 3: I request everyone to share inputs for a better plan of action ✨

[02-04-2025 18:29] PPM 9: Its on your shoulders.

Show us what you can best do, while @PPM1, me or any will be supportive and mentors.

[02-04-2025 18:53] PPM 1: Agree with your current plan. Meanwhile as @~PPM11 suggested earlier should we reapply for her PwD certificate through the web link he had shared? Also @PPM11 perhaps this patient will be the best flag bearer for introducing PMR to MBBS?

[02-04-2025 18:54] PPM 1: Also @~PPM11 you can interact with our MBBS students here @~PPM3 from KMC @~PPM12 from Indore and @~PPM13 @~PPM14 for more ideas on introducing PMR in MBBS

[02-04-2025 18:55] PPM 12: Sir PMR??

[02-04-2025 18:55] PPM 11: Physical Medicine and Rehabilitation

[02-04-2025 18:55] PPM 11: iapmr.in

[02-04-2025 18:55] PPM 12: Oh okay sir 👍

[02-04-2025 18:55] PPM 12: Got it

[07-04-2025 12.36] PPM 1: Reviewed her in OPD.

[07-04-2025 14:02] PPM 1: Prof @~PPM11 had shared this for disability certificate registration earlier 👇

https://swavlambancard.gov.in/Applyforudid

Also let's begin the neet preparation here or open a separate group with her and her friends where she will be a student rather than a patient @~PPM3

[07-04-2025 16:17] PPM 1: @~PPM3 also add us to that group. @~PPM11 I'm sure can add some good pointers for neet UG there and we need to sensitize UGs to PMR even before they get into MBBS

[07-04-2025 16:23] PPM 1: @~PA please check how the other patient student got his certificate done online👇

[17/03, 12:44] PPM 11: For all in this group. It is easy to get certified. Fill details and approach the hospital👇🏻

[17/03, 12:45] PPM 11: https://swavlambancard.gov.in/Applyforudid

[17/03, 12:49] pm: 👆@⁨Patient Advocate 52M Hypertension WB⁩ please check this

[07/04, 13:59] cm: @⁨Patient Advocate 52M Hypertension WB⁩ was this checked and done?

[07/04, 15:04] Patient Advocate 52M Hypertension WB: Yes Sir

[07/04, 16:13]cm: Oh that's very good news. Did they provide a certificate?

[07/04, 16:14] Patient Advocate 52M Hypertension WB: Yes sir one certificate provided by them

[07/04, 16:15]pm: Online?

[07/04, 16:19] Patient Advocate 52M Hypertension WB: Yes Sir online certificate along with ID card

[07-04-2025 17:52] PPM 3: @~PPM11 please help with the category for pwd to be selected for this patient. there is no clear suitable category in the options given on website.

[07-04-2025 17:56] PPM 11: Locomotor Disability

[07-04-2025 17:59] PPM 11: Career shall be directed by passion and passion only. Don't blindly follow NEET. That is my advice

[07-04-2025 18:59] PPM 3: true

[07-04-2025 20:00] PPM 1: She doesn't have any problem in locomotion though. Her disability is due to her congenital bladder exstrophy that needs her to have been doing intermittent self-catheterization through the artificial umbilical orifice connected to her surgically reconstructed urinary bladder ever since she was a child to be able to remove her urine everyday.

@~PPM 3 what are the available choices of disability?

[07-04-2025 20:06] PPM 11: Take the Domicile or Voter ID to Certifying Authority

[07-04-2025 20:06] PPM 1: Here it's mentioned as a "psychological, social, and professional disability."

https://www.sciencedirect.com/science/article/pii/S2214442022000134#:~:text=1.,genital%20organs%2C%20and%20the%20perineum.&text=While%20efforts%20are%20focused%20on,%2C%20social%2C%20and%20professional%20disability.&text=There%20are%20also%20surgical%20challenges,preserving%20the%20upper%20urinary%20tract.

[07-04-2025 20:08] PPM 11: I recollect comparative talk given by me in Bhopal regarding Indian and American Acts😌

[07-04-2025 20:08] PPM 11: We have to follow Indian Act for now

[07-04-2025 22:22] PPM 3: They do have a section for congenital disabilities but exstrophy was not mentioned. I think she should visit a nearby government hospital to get her certificate offline sir

[08-04-2025 03:13] PPM 11: Congenital limb deficiency and deafness don't fot. No offline allowed now

[08-04-2025 06:40] PPM 1: She doesn't have deafness. I feel we could try congenital disability. What are the specific congenital disabilities mentioned there @~PPM 3?

[08-04-2025 07:37] PPM 11: No

[08-04-2025 07:37] PPM 11: Only this

[08-04-2025 08:17] PPM 1: Okay I just saw this 👇

https://www.swavlambancard.gov.in/about-persons-with-disability

There appears to be only two categories:

1) Physical disability. —

2) Locomotor disability (a person's inability to execute distinctive activities associated with movement of self and objects resulting from affliction of musculoskeletal or nervous system or both), including—

It includes everything! I wonder what does physical disability include? It appears that the numbering is confusing the subsets and locomotor disability should be a subset of physical disability under which every disability is included so we need to look at which subset of locomotor disability fits her?

That would be the last category number 6 here:

6) Any other category as may be notified by the Central Government

[08-04-2025 08:20] PPM 11: But extrophy is not "notified" in 6 yet.