TO WHOM IT MAY CONCERN AT RPAH EMERGENCY
To Triage Nurse - RPAH
To Emergency Registrar - RPAH
To RPAH ER Haematologist Dr. Liane Khoo
Dear Sir / Madam,
I have cheated death Eight Times in my lIfe so far and am clinging on to life like a Drowning man
My Biggest Nightmare is Intubation for surgery or Endoscopy
1-1982 - Dr Bridger at POW had to abort a septum deviation surgery as I gagged choked and stopped breathing in the theatre
2 -1985 - Dr Trevor Williams Fully understood my condition and had three expert anaesthetist assisting him at St George Hospital and still had major problems was just barely able to complete the surgery
3 -1996 - Dr Christopher Low wanted to perform an Endoscopy. I put up a huge struggle and kicked my GP friend badly as he was trying to hold me down
4 - 2010 - I was suffering from severe Gastro Intestinal Problems and Dr Vander Porten a Gastroenterologist insisted on and endoscopy. Same story I could not be intubated. Anaesthetist came and told me Sir I thought I lost you. You just choked and stopped Breathing. His advice to me was never to accept intubation and INSIST on AWAKE Anaesthesia.
I have an extremely small jaw opening and very very narrow airway and I often Choke swallowing tablets even Panadol that send me into an Asthmatic Spasm and I cannot breathe
So PLEASE Doctors No Endoscopy for me ever.
5 - 13th April 2000. I woke up at 4.30am to realise my left side was entirely Paralysed and the Right side of My Face too. It was my Good Fortune and paramedics took me to RPAH. I hear neurologists whispering This is a Typical Text book case no survivors and seen only in Autopsies
My Right Vertebral Artery if Fully occluded
and my Right IICA and RIGHT PICA receive Retrograde from from the Dominant Left Vertebral. Last 22 years I have Maintained a slight Raised BP of 140/90 to ensure blood flow to my right AICA and PICA. Right mow my BP is Plummeting to 90/55 sending me reeling and dizzy, so I lie down Most of The time to ensure Blood Supply. Last thing I want is another Brain stem stroke
Prof Harry Iland At Rpah saved my life Three Times and was my God send
6 - I consulted Prof Harry Iland who was shocked and angry that neurology did not inform Haematology. First time I heard my Platelet Count was 890. A bone Marrow Biopsy was Performed instantly and he said "I have essential Thrombocytosis" Prescribed Hydroxy Urea max dose of 3.0 grams a day.
Three years Later I developed an Ulcer that would not heal. Was treated as white tail Spider bite or may be bone cancer. I belonged to a stroke forum and my good Friend Neoma from USA did some searches and sent me a publication that said this was the side effect of Hydroxy urea. So I was taken off Hydroxy urea
7 - I was suffering from severe TIA's and I vascular Neuro Surgeon at POW wanted me to have a PICA By Pass surgery and was pressurising me. Dr Gilles Stroke specialist checked me out and said Ram Thank your stars for in the last 16 years as Stroke specialist I have not see a case like yours. He added Plavix to my Warfarin and believe it or Not TIA's disappeared. I phoned Prof Iland and explained my Situation and He told me "Get out of the Hospital Now Ram don't let any one open your brain stem as You may not come out alive" I packed my Bags and discharged my self after being retained in the hospital for 2 weeks to say yes to the surgery that was banned in USA in 1985.
I continued Consulting Prof Harry Iland and in 2016 he told me Ram I am retiring soon so You must see another Haematologist. My GP referred me to Dr Judith Trotman at Concord Hospital and I realised she was no Prof Illand and I was just a number. It was my neurologist who looked at my Blood test results and said you may have Myelo Fibrosis. I immediately Rushed back to Prof Illand who confirmed the Diagnosis and wrote a letter to Dr Trotman
Just like My Body Rejected Hydroxy Urea I think it has rejected Jakavi too. I have been taking Jakavi since May 18 15mg Twice Daily. May be I would have been better off without Jakavi.
A FRESH RAY OF HOPE FOR ME:
Recently I joined a Myelo Fibrosis Forum and received the following responses from Members:
Julie61123d ( UK)
Can you ask about Pactricinib my husband couldn’t tolerate a Jakavi because of his platelet count but he’s doing well on this. We are in the uk so I hope this might be an option for you in Australia.
Stuart6593d ( Western Australia)
Pactricinib not available in Aus, not TGA approved. Danazol can be used to treat low platelets, but they didn’t prescribe that for me until platelet got to 10 from 950. It’s not on PBS but it’s only $200 for 100 tablets. Can source from India at USD at 75 for 100 tablets. 8 - My eight escape from Death. From the Time I had my stroke in 2000 I have been consulting Cardiologist Dr Tommy Chung. He saw me at least three times a year Did and ECG and an echo and told me heart was fine and that I had exercise induced asthma and I should stop imagining things. Dec 2017 I was feeling extremely ill and having panic attacks in my sleep. But Dr Chung was not back until 8th Jan 2008. I forced my way in and was given the same verdict. I insisted on a Holter Monitor. He would not give me one and asked me to Come Back on 15th Jan 2018. At 4.00pm he tells me wife Take him straight to Concord Hospital. He needs a Pace Maker immediately. The surgeon is waiting and ready. So Got admitted at Concord Hospital. The Registrar informed me the Implant will be done at 9.00am. At 9.00am The Registrar tells me the Surgeon is ready and waiting but the theatre staff are on holidays and she was trying other hospitals. At Mid Day she gave to good news that Martyr Hosp in North Sydney would do it by 3.00pm. Ambulance too me there and Dr Raymond Sye was an absolute gentleman and I insisted on Awake anaesthesia and he obliged What he told my son and wife was most shocking. He Told them I was extremely Lucky as I would not have lasted even two more Days, I has stage Three BradiCardia. I had never heard of Bradicardia and Thanked my Luck Stars.
DIABETES Post Stroke by 2003 Was Told I had Borderline Diabetes and prescribed Metformin. The dosage went to max 3000mg a day. I was prescribed Fast acting insulin and the dosage went up to 30 Units Fast acting three times a Day Yet my fasting BSL was always 10 to 12. I was prescribed Long acting Insulin Lantus 50 units in the morning and 50 Units at night. It did noit make any sense. members of the diabetes forum were perplexed and one member suggested I did not have TYPE 2 Diabetes but Type 1.5 Diabetes also known as LADA or Latent Autoimmune Diabetes in Adults also knows as Metabolic Syndrome. I asked my Respiratory specialist who said let us Rule this Out and gave me a Referral to the Metabolic Clinic at Concord Hospital. The Nurse rejected me saying you weight only 110Kilos One needs to be 350 Kilos to join the Program I had to lean on my Fav Neurologiost who referred m to Endo Crinologist Dr. Bronwyn Crawford Who told me to stop all insulin and Prescribed Forxiga Plus Galvumet. My Hba1c dropped from 9.5 to 7.2 and my weight dropped from 110Kilos too 80 Kilos
Sleep Apnoea: I am Dr Sulivans Patient at RPAH and have used CPAP from 1989 But am unable to tolerate CPap since I got my Pace maker and have stopped using it. In 2002 my snoring was so bad I had a Laser Uvulo Plasty done in UK. Was Ok for a few years but scar tissues have grown with a vengeance
Myelo Fibrosis: As if I have not been through enough I now have MF.
I place my Life and Trust in your able Hands
Ram Krsihnaswamy
