We decided to write about this matter, as our Dad’s initial diagnosis upon his admission to the hospital in September 2016 was Infective Endocarditis. (We also have a topic about Infective Endocarditis). Unfortunately, the infection went into our Dad’s eyes causing him to lose his sight….
Please see Infective Endocarditis and Blindness which covers:
- Introduction/Our Story
- Illustrative Examples: Infective Endocarditis and Blindness
- YouTube Video: Infective Endocarditis
- Infective Endocarditis, symptoms, Causes and Treatments
- Complications of Infective Endocarditis
- Endophthalmitis and Blindness
- Useful links
- Our Final Thoughts
© Copyright 2019 Grief Probate Journey Blog *PLEASE NOTE THIS INFORMATION IS SOURCED FROM UK and AMERICAN WEBSITES* It is also based on our own experience. *We are not experts in this field, we are speaking purely on our own experience with information sought from the internet to give further examples.*
1. Introduction/Our Story
We decided to write about this matter, as our Dad’s initial diagnosis upon his admission to the hospital in September 2016 was Infective Endocarditis. (We also have a topic about Infective Endocarditis).
Unfortunately, the infection went into our Dad’s eyes causing him to lose his sight. This happened despite my sister and I continuously raising concerns about the change in our Dad’s eye’s, and also about the fact his eyes were not being cleaned, and eye drops were not being administered as they should have been. (We raised these concerns from his first day on a ward in the hospital up until the day it was finally confirmed our Dad had gone blind).
It was extremely stressful and trying times for us all. We got so frustrated with doctors commenting on the condition of our Dad’s eye’s, yet nothing was being done about it. It got to the point that I had heard the comment being made about our Dad’s eyes for the final time. The last doctor who examined our Dad and said that to him, when they left our Dad’s cubicle I demanded that his eyes be checked to see if he still had his sight. The doctor did an assessment which proved our Dad couldn’t see, and only then at this point was the opthalmology department contacted so that further tests could be done.
This is the reason why we are writing about this subject in the hope to create awareness of this rare condition.
We are not sure of the specific medical term that caused our Dad’s blindness as we were never given sufficient information. At the time he was an inpatient in the hospital, the cause of his eyes was unfortunately misdiagnosed several times. He was thought to have viral conjunctivitis, iritis. There was toxicity in his eyes due to being given treatment for a condition that he did not have. (viral conjunctivitis). However, it was eventually confirmed by the ophthalmology team that the blindness occurred due to our Dad having contracted Infective Endocarditis. The bacteria went into his eyes and caused this.
At the point this was finally diagnosed, there were only two options for our Dad aggressive treatment directly into his eyes or oral antibiotics, either way, he would not regain full sight again.
Here we have given information on the confirmed diagnosis regarding our Dad’s eyes and loss of sight due to Infective Endocarditis.
We started writing this topic in 2019, but it is quite a tricky one. We are taking our time with it as we are realising more and more how much each symptom, condition, infection our Dad had whilst an inpatient in the hospital was so much interlinked. Nothing was straightforward, it’s no wonder we were so confused at the time as there were always multiple things for us to be taking in, understanding, trying to deal with. Therefore, this topic has multiple conditions mentioned as they are all related. We hope we have managed to share this topic without causing confusion.
At the time our Dad was an inpatient, we managed to find a rare few articles directly linking the blindness to endocarditis. For some reason now we are struggling to find information that directly links it, although it is a proven fact. We know this as it happened to our Dad.
All the conditions mentioned are a result of our Dad being diagnosed with them whilst he was an inpatient in the hospital.
We decided the time was right to publish this topic in March 2020. It was at this point in time that a National Lockdown was annouced due to the Coronavirus Pandemic, because of this the nature of our topics changed. Again, we now feel that the time is right to finally publish this topic. We feel very passionate and strongly about spreading awareness of this condition as it is so rare. If by sharing this it could possibly prevent someone else from being misdiagnosed it is more than worthwhile for us.
We have given a brief explanation of what Infective Endocarditis is to try and give a better understanding of how this can lead to blindness. We will also on occasion be interlinking/comparing our experience with our Dad to the information from the internet examples.
As previously mentioned above, we have a topic just about Infective Endocarditis which could give additional useful information. In the meantime please see: Infective Endocarditis and Blindness
2. Illustrative Examples
3. YouTube Video: Infective Endocarditis
“Endocarditis is a rare condition that involves inflammation of the heart lining, heart muscles, and heart valves.
It is also known as infective endocarditis (IE), bacterial endocarditis (BE), infectious endocarditis, and fungal endocarditis.
An infection of the endocardium causes endocarditis. The infection is normally caused by streptococcal or staphylococcal bacteria. Rarely, it can be caused by fungi or other infectious micro-organisms”
“Knowledge about the origins of endocarditis stems from the work of Fernel in the early 1500s, and yet this infection still presents physicians with major diagnostic and management dilemmas”…
Unfortunately our Dad was victim to this. The infection went into his eyes which caused him to go blind. Had our daily concerns raised to the hospital staff been listened to and taken seriously, this could have been diagnosed or been investigated at the stage the Infectious Endocarditis diagnosis was confirmed. We noticed the change in our Dad’s eyes immediately and made sure we made it known to the hospital staff. Our Dad could have stood a chance of regaining his sight, or maybe he might not have even lost his sight at all. These is a small portion of the great upset we have about our Dads time in the hospital.
“Endocarditis is a potentially serious infection and inflammation of the heart. Vegetation that finds its way to the brain and gets stuck there can cause stroke or blindness. A large fragment of vegetation can get stuck in an artery and block blood flow”.’
“The right eye is generally more affected than the left eye. The onset of the signs and symptoms depends on the pathogenic virulence. Typically, patient presents pain, chemosis, proptosis, hypopyon, and corneal melting. Blood culture findings are positive in more than 90% of infective endocarditis cases.” (9 Nov 2016).
When our Dad was in the hospital, the pain in his eyes it was always his right eye that had the most pain, and it was his right eye that was the worst affected. I would often notice his right eye becoming puffy and swollen. These concerns were consistently raised to staff in the hospital.
Unfortunately since we were ready to publish this last year (March 2020) this link is no longer available.
“PRIOR to the availability of antimicrobial therapy, infective endo-carditis (IE) was invariably fatal. Although approximately 80% of patients with endocarditis now survive their infection, one of every six patients with IE does not survive the initial hospitalisation, and up to one-third of patients infected with highly-virulent organisms such as Staphylococcus aureus may die as a direct or indirect result of their valvular infection.
A myriad complications can result from this infection and occur in the majority of patients with IE. In a review of 223 patients with IE: 57% had one complication; 26% had three complications; 8%had three or more; and 6% six or more.1ComplicationsComplications such as heart failure and stroke are relatively common and feared outcomes of IE, while other complications such as blindness and septic arthritis are thankfully rare in mod-ern practice”.
This sounds like our entire hospital experience. We felt confused beyond belief with the many different infections that lead from the initial diagnosis. How our Dad managed and coped with this is just unimaginable. He had strength, will, determination and faith beyond belief.
“Systemic embolism is a frequent complication of IE and can occur even after appropriate therapy is well underway. Emboli consisting of vegetation fragments can occlude or damage virtually any blood vessel, large or small, in the systemic or pulmonary artery circulation. As a result, emboli can produce”:
- “Painful or ischaemic extremities”
- “Splenic or renal infarcts”
- “Pulmonary emboli”
- “Paralysis, embolic infarcts of either the brain or spinal cord”.
6. Endophthalmitis and Blindness
“Endophthalmitis is the term used to describe severe inflammation of the tissues inside the eye. The inflammation is typically due to infection by bacteria (eg. Staphylococcus species, Streptococcus species, Gram-negative bacteria) or fungi (eg. Candida, Aspergillus)”.
When our Dad was admitted to the hospital, he had to have various tests done, many of the terms mentioned above are infections our Dad was diagnosed with.
“In most cases of endophthalmitis, useful vision can be retained if proper treatment is instituted. However, in severe cases of bacterial endophthalmitis, blindness often occurs despite treatment”.
Symptoms of endophthalmitis
- “Eye pain that becomes worse after surgery or injury to the eye”.
- “Decreased or loss of vision”.
- “Red eyes”.
- “Pus from the eye”.
- “Swollen eyelids”. (22 Sep 2017).
From our Dad’s first full day of being an inpatient at the hospital, the first thing we noticed is that he kept closing his eyes. We knew this was not normal. When he eventually would open his eyes they were very red. He was continuously mentioning that his eyes felt sore. We consistently raised our concerns about this daily.
“Endogenous endophthalmitis (EE) is an uncommon intraocular infection with potentially devastating visual consequences. An endogenous source is responsible for roughly 2% to 8% of all endophthalmitis.1 Prompt diagnosis and treatment are essential to obtain the best visual outcomes. The underlying infection should also be investigated and managed, although it remains unidentified in many cases”.
In our Dad’s case things happened in reverse order, the underlying infection Infective Endocarditis was diagnosed before.
Is a potentially blinding ocular infection resulting from hematogenous spread from a remote primary source. The condition is relatively rare but may become more common as the number of chronically debilitated patients and the use of invasive procedures increase.(1 Aug 1999).
7. Useful links:
- Endocarditis and Monocular Blindness
- Endogenous Endophthalmitis As The Leading Sign Of Endocarditis
- (PDF) Endocarditis and Monocular Blindness – ResearchGate
- Bilateral Cortical Blindness: an unusual presentation of Bacterial Endocarditis – NCBI
- Reversible Cortical Blindness as a Prominent Manifestation of Cerebral Embolism due to Infective Endocarditis
- [Arterial occulusion of the eye in Infectious Endocarditis]. – NCBI
8. Our Final Thoughts
It took us a very long time to put this topic together. It feels like it’s been one of the most complex topics we’ve covered so far. And for that reason we couldn’t rush it, we had to take our time. Now we feel that we are in a better understanding of how to present it in a way that will be informative, helpful and useful. We hope we have been able to achieve this.
We are nothing without our health, there are so many unknown conditions out there that have life-changing or fatal complications. Having the right information can be the difference between being treated in enough time to symptoms possibly being misdiagnosed. This is why we will continue to share everything we are learning. Knowledge and awareness are powerful.