Regular readers: I’m sorry this one has taken so long to appear. The website was broken and I was having trouble fixing it. I’m not sure why it is working now, but, on with the story…
It was maybe 8pm by the time we got word that Andrew Hodge was on his way. The team of doctors and nurses that were now constantly surrounding Trenna started moving her bed to the lifts to take her to … Read the rest ... “Trenna’s Heart Valve Replacement – Part 2”
By Greg
I thought some readers of this site may find this story interesting. In it I tell you about Trenna’s surgery to have her aortic heart valve and ascending aorta replaced. I intended it to be a stand alone story, but it turns out the memories of those times are still pretty clear in my mind, and a lot happened, so, here is Part 1 of what has turned out to be a two part story of medical success … Read the rest ... “Trenna’s Heart Valve Replacement – Part 1”
By Greg
Being a carer can be like being on a roller coaster, it can be fun, and thrilling, and downright scary. Sometimes it’s all those things at once. And once you are on it it can be very hard to get off. But then again, sometimes you don’t want to get off, you just want it to go on and on as long as possible.
In this Post I will try to pass on some of my experience gained … Read the rest ... “Carer things that worked for Greg – the good, the bad and the ugly”
The name on the file was “Bronchitis” but it was so much more than that.
Trenna died nearly three years ago and, maybe as a coping mechanism, I have been enjoying telling people of her achievements and of events in her life. She did a lot.
But occasionally I remember something, or I see something that reminds me of what she went through, and how at times it was so, so hard for her.
I recently saw a file on … Read the rest ... “Chronic Illness – The Straws Accumulate”
By Greg
If this post interests you there have been three others on this topic. All with things that Trenna tried to help her or my life as we coped with her multiple medical conditions.
I don’t think for a moment that every tip or anecdote will be useful, but I certainly am hoping that people living with chronic illness or … Read the rest ... “Marfan and Other Chronic Conditions – Things That Worked for Trenna – Part 4”
Regular readers will know this, but…. although I mention several specific brands in this post I do NOT get any financial or other benefit from them. I name them just to help you understand what I’m talking about.
If you find this post useful or interesting you might want to check out three other posts: Marfan and Other Chronic Conditions – Things That Worked for Trenna; Things That Worked for … Read the rest ... “Marfan Weight Gain”
By Greg
If you find this post useful or interesting you might want to check out two other posts: Marfan and Other Chronic Conditions – Things That Worked for Trenna; and Things That Worked for Trenna -Part 2.
As the name suggests yet another instalment in a series of posts that tell the things Trenna tried in an effort to make … Read the rest ... “Marfan and Other Chronic Conditions – Things That Worked for Trenna – Part 3”
PLEASE READ THIS FIRST – THIS POST IS NOT MEDICAL ADVICE
The following historical information is for interest only. It should in no way be thought of as medical advice applicable to any other individual. Medical science has moved on, and no two people have the exact same medical circumstances. I hope you find the information interesting, To see the “Introduction” to this series of posts, please click here.
Common abbreviations used by Trenna in this … Read the rest ... “Medical Records – Cardiology No. 6”
Pain relief and the hope of maintaining some sort of body condition were the two main motives for Trenna doing exercises.
When she was able she would walk and exercise daily, and she was very disciplined at it. In the last two years of her life it was very hard to do much physical exercise at all, and I think she quietly grieved … Read the rest ... “Trenna’s Marfan Exercises”
PLEASE READ THIS FIRST – THIS POST IS NOT MEDICAL ADVICE
The following historical information is for interest only. It should in no way be thought of as medical advice applicable to any other individual. Medical science has moved on, and no two people have the exact same medical circumstances. I hope you find the information interesting, To see the “Introduction” to this series of posts, please click here.
Common abbreviations used by … Read the rest ... “Medical Records – Cardiology No. 5”
By Greg then Trenna
This post comes from another document on Trenna’s well organised (of course) iPad.
All I’ve done is cut and paste the original document into the main body of this post. I’ve also inserted a PDF of the original document as it appears on the iPad.
I hope you find it either useful or interesting – or both.
Greg
Consider Heat or Ice.
Heat helps … Read the rest ... “First Aid & Home Remedies”
By Greg
Recently I was reading a Marfan Syndrome Facebook Group post. The person was asking about people’s different experiences with pain killers. A really important issue for Marfans.
I gave a reply which, among other things mentioned medicinal cannabis (MC). I then got some other questions about our Australian experience.
This post is based on my reply to them.
If you aren’t in the market for MC there is … Read the rest ... “Medicinal Cannabis”
PLEASE READ THIS FIRST – THIS POST IS NOT MEDICAL ADVICE
The following historical information is for interest only. It should in no way be thought of as medical advice applicable to any other individual. Medical science has moved on, and no two people have the exact same medical circumstances. I hope you find the information interesting, To see the “Introduction” to this series of posts, please click here.
Common abbreviations used by Trenna … Read the rest ... “Medical Records – Cardiology No. 4”
Introduction by Greg and then Trenna’s words, with only a little editing
The inverted commas in the title were in the original document. A “Body Migraine” is a Trennaism. In this case the term she used to describe this set of symptoms.
This is another post that I am including mainly for the benefit of those with musculoskeletal issues. That of course incudes those, like Trenna, with Marfan Syndrome.
Trenna’s words below were on her iPad. It looks like … Read the rest ... ““SCOLIOSIS BODY MIGRAINES” ”
Here is a page Trenna made about two eye problems she encountered.
Everyone is welcome to read the post, but it doesn’t contain any funny or poignant stories. I’m just trying to pass on some information Trenna accumulated in case it is of use to anyone else.
Maybe in the future it has historical benefit as well. Who knows!
In case you are wondering, according to the Mayo Clinic (who Trenna trusted for this sort … Read the rest ... “Blepharitis & Conjunctivitis”
PLEASE READ THIS FIRST – THIS POST IS NOT MEDICAL ADVICE
The following historical information is for interest only. It should in no way be thought of as medical advice applicable to any other individual. Medical science has moved on, and no two people have the exact same medical circumstances. I hope you find the information interesting, To see the “Introduction” to this series of posts, please click here.
Common abbreviations used by Trenna in this series:
AF – Atrial … Read the rest ... “Medical Records – Cardiology No. 3”
Among the documents on Trenna’s iPad there are two called “Weekly Routine”. One is labelled “2016” and the other “2017”.
It is actually not quite as pernickety as it seems.
In this post I will reproduce both of them. In them Trenna goes into immense detail about times she intends doing things and what looks like a very strict routine.
It is actually not quite as pernickety as it … Read the rest ... “To Feel Able”
PLEASE READ THIS FIRST – THIS POST IS NOT MEDICAL ADVICE
The following historical information is for interest only. It should in no way be thought of as medical advice applicable to any other individual. Medical science has moved on, and no two people have the exact same medical circumstances. I hope you find the information interesting, To see the “Introduction” to this series of posts, please click here.
Common abbreviations used by Trenna in this series:
AF – Atrial … Read the rest ... “Medical Records – Cardiology No. 2”
PLEASE READ THIS FIRST – THIS POST IS NOT MEDICAL ADVICE
The following historical information is for interest only. It should in no way be thought of as medical advice applicable to any other individual. Medical science has moved on, and no two people have the exact same medical circumstances. I hope you find the information interesting, To see the “Introduction” to this series of posts, please click here.
Common abbreviations used by Trenna in this series:
AF … Read the rest ... “Medical Records – Cardiology No. 1”
I’ve tossed around in my head what to do with Trenna’s extensive medical records.
They mainly comprise the detailed notes she would make at the end of almost all consultations with medical professionals. At first she hand wrote them on A5 pieces of paper (actually hand written on the back of bits of paper that otherwise would have ended in the recycling bin).
Later she recorded them on her … Read the rest ... “Introduction to The Medical Records”