Profuse Nose Bleeding...For four years now!

Posted by Ron and Cilvia @renaldo, May 18, 2023

For four year now my wife has been experiencing bleeding from her nose.

She has been diagnosed with hemolytic anemia. Her doctors say the bleeding is not related to her anemia as she coagulates correctly.

The bleeding comes and goes. She will have to expel plugs of hard dried blood either through her nostrils or by swallowing and then spitting out by mouth. When she bleeds it will last from 24-48 hours causing a significant loss of blood that requires blood transfusions, of which she has had close to 300. She requires hospitalization twice monthly.

They have tried packing, embolism, even radiation. We believe these procedures may have ruptured membranes and that they will never heal.

We live in Indonesia. A country very limited in available high technology care and specialists of stature.

As an option we are looking into care in another more developed SE Asian country like Malaysia.

Can anyone please give us some advice as to options we may have?

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covidstinks2023 | @covidstinks2023 | May 18, 2023

Wow! Bless her sweet heart. Has an ENT ever cauterized her nose? Praying much for you both to get answers.

Becky, Volunteer Mentor | @becsbuddy | May 18, 2023

@renaldo What a horrible situation to be in. I’m so sorry, it must be so difficult. The Mayo Clinic has a network of hospitals and there is one in Indonesia. I added the link but it’s not in English. I hope that you can read it.
https://www.rspp.co.id/
Please give the hospital a call and see if they can help. And can you get back to me and tell me what the outcome is?

grammy82 | @grammy82 | May 18, 2023

My heart goes out to both of you! It is my hope that you are able to get help through the link that @becsbuddy provided you. It must be so difficult for both of you...hope..💞

Ron and Cilvia | @renaldo | May 19, 2023

In reply to @becsbuddy "@renaldo What a horrible situation to be in. I’m so sorry, it must be so difficult...." + (show)

Thank you Becky and Grammy,

I looked at the site for IHC and wonder if this hospital is accredited by WHO.

I was told there is not one single hospital in Indonesia with this accredidation. Some loosely use the word "international" in their name.

Mayo is currently consulting on what I have read is the first hospital to be accredited. The hospital is scheduled to open early 2024. We once had her airlifted at great personal cost to what we were told is one of Jakarta's best hospitals, Medistra, and were not at all impressed with the facility or services rendered. We could have gotten same care here in Yogyakarta. A waste of $30,000.

I tried to contact IHC using email but it seems no longer in use. I will try calling. I have called numerous hospitals throughout SE Asia for help the past couple years. They all told me I must bring her in for diagnosis before they can render any response. Her bleeding condition makes air travel dangerous as cabin pressure is sure to cause bleeding that may result in an emergency landing. So we work as best we can here with what we currently have.

The new hospital in Bali may be a viable place to get help if it is of high standards. Our hopes are high.

The past four years have been a rollercoaster ride. We have no idea as to how it will end.

I am attaching an article about the new Bali International Hospital and its connection with Mayo.
https://thebalisun.com/balis-new-international-hospital-in-sanur-on-track-for-completion-by-end-of-2023/
Warm regards,
Ron

Ron and Cilvia | @renaldo | May 19, 2023

In reply to @covidstinks2023 "Wow! Bless her sweet heart. Has an ENT ever cauterized her nose? Praying much for you..." + (show)

Yes, but some areas were impossible to cauterize.

We live in a part of the world where doctors are not the best and can do pretty much as they see fit. A radiologist was to use radiation in an extremely low dosage. Well, he went ahead without our consent or knowledge increased the treatment 500%. We are told this has done damage that can never be corrected.

There is no recourse. No law suits. Complaints go nowhere.

covidstinks2023 | @covidstinks2023 | May 19, 2023

I am so sorry. I am still very hopeful for you to get the right help and answers.
Bless You & You Wife!

gina5009 | @gina5009 | May 19, 2023

As a child I had frequent nose bleeds, some requiring me to go to the Emergency Hospital. It was found later that I had a broken blood vessel in my nose. It was cauterzied, and I do not have this problem any longer. This may not be the answer for your wife, but it is worth asking.
Gina 5009

grammy82 | @grammy82 | May 19, 2023

In reply to @renaldo "Thank you Becky and Grammy, I looked at the site for IHC and wonder if this..." + (show)

The two of you have been through so much. I hope you get some helpful responses for all your efforts. Even though I could not understand the language, I watched the video regarding Bali International, and it looks promising—prayers for you both.💞

Becky, Volunteer Mentor | @becsbuddy | May 19, 2023

In reply to @renaldo "Thank you Becky and Grammy, I looked at the site for IHC and wonder if this..." + (show)

@renaldo. What a great article! I’ll be anxious to see the finished hospital! Ron, I don’t know if the Mayo care network hospital is accredited by WHO. I wonder how someone should find out?