Marfan and Other Chronic Conditions – Things That Worked for Trenna

by Greg

A Need to Cope with Life

This is a list of some of the strategies Trenna adopted to try to cope with life and her many medical issues. She didn’t have a specific list of these items. This is just the things I remember us trying.

I’m expecting (hoping?) that this post might be helpful to people living with chronic disease, and their carers. But of course everyone’s situation is different.

For most of her life she was able to reduce the impacts of many of her medical issues by managing them carefully, following medical advice, and quite a few pharmaceuticals.

In her last several years she was coping with 

• deteriorating eyesight – she was legally blind 
• chronic pain and the effects of medication to treat it
• atrial fibrillation
• arthritis
• muscle weakness
• heart failure
• lung failure (COPD)
• skeletal problems, including scoliosis
• esophageal dysmotility
• primary Sjogren syndrome 
• dural ectasia

There were many other things, but these were the most debilitating.

She had adopted coping mechanisms throughout her life. For example she explained that her photophobia at school was so painful that she routinely chewed on Asprin.  She said she treated them like lollies. I’m NOT suggesting you try that.

More to Come

I’m pretty sure I will think of some more coping strategies Trenna and I tried. As I do I will do another post and link it in here.

It is also my intention to write specific posts to expand on and explain some of the strategies.  When I do I will link those to the list.

I hope you will find the list useful in some way. If you have tried some of these strategies in the past, or as a result of reading them here, please provide some feedback below.

Things Trenna and I Tried, That Worked

– in no particular order

Green pen sheets

These were A4 sized white paper on which I wrote step by step instructions on how to do various tasks on Trenna’s laptop, or our scanner/printer. I used an Artline 210 Medium 0.6 marker. Steps were numbered and usually spanned several numbered pages, stapled together.

Craft group

Trenna was delighted when she was asked to join a group of women from the neighbourhood for a weekly craft group. (One of the husbands called it “Stich and Bitch” which Trenna thought was pretty funny). Participating in a group like that gave Trenna something to look forward to, a sense of achievement (she knitted and crocheted several things) and it made her feel a bit more normal.

Pacing

Just being conscious of what she was doing, including its likely effect on her body, including the cumulative effect of doing stuff.

Doctors notes

Before every visit to a doctor or specialist Trenna would write down anything she had to report and any questions she had. After every visit she would write notes about what was said.

Hand written notes about a cardiologist appointment. This one from 2006. Once Trenna got an iPad all the doctors notes were done on that.

A doctor visit companion

Except for a brief, experimental period Trenna always took someone (almost always me) with her to doctor appointments. One of the benefits were that it helped with the notes afterwards, reducing the chance of missing something, and it ensured I was up to speed with her care needs.

Sheepskin on the seat and seatbelt

Marfans can have boney bottoms! On cars that didn’t have sheepskin seat covers she placed a piece of natural, thick, sheepskin under her bottom. It was comfortable (I know, I’ve inherited the sheepskin), cool in summer and warm in winter. She also had a rectangle of sheepskin, the two long edges joined by Velcro that she put on the sash part of the seatbelt to protect her boney chest.

Some sheepskin on the car seat and some on the seatbelt for added protection.

Inflatable cushion

This was great for sitting on any unpadded seat – inside or outside. We always carried it with us – weighed nothing and was ready in seconds.

Singing

Trenna, by her own (correct!) admission was a terrible singer. BUT, she enjoyed it. In her last year she was able to persuade her visiting speech therapist – Callum, who is a musician – to try singing as a therapy. We never got around to measuring it, but my assessment is that her voice projection improved considerably and she was much happier, frequently practicing between therapy sessions. As an added bonus Trenna actually got quite good at singing! Thanks Callum.

Speech therapist, occupational therapist, physiotherapist

Getting supports through the Australian National Disability Insurance Scheme (NDIS) was really problematic and stressful to organise, but for the last couple of years of her life Trenna was able to access a range of therapists who came to our house. At times it was exhausting, but they all brought some real benefits to Trenna. There were a number of them, but thank you in particular to Callum, Ruth, Kathryn and Brendan.

Munro shoes

Like many Marfans Trenna had long thin feet, with no real height to them. One foot was a quadruple A fitting and the other a triple A. It was a nightmare trying to find shoes that fitted – she very rarely did. One of the better brands for fit was Munro America. The down side was that we had to order them from the USA and they cost hundreds of dollars more than a “normal” shoe in Australia. We also had to wait for weeks to receive them, and more than half the purchases had to be returned because they weren’t a good enough fit. That leads me to …..

PayPal Refunded Returns

What a great scheme that is. If you are registered for this and pay with PayPal they will refund the cost of returning goods (like shoes) up to $45-00 eight times a year. Mind you, it costs MORE than $45 to send a pair of shoes from Australia to the US.

Search and destroy

I have a tendency to accumulate junk mail, newspapers, pamphlets – all manner of ephemeral reading matter. Trenna designated that I should do 10 minutes every day of “search and destroy”. Basically look at the stuff I’ve picked up, read it, and if I don’t need it, throw it in the recycling. It worked well, and I’ve recently reintroduced it into my life.

Training doctors

Almost every time Trenna went to hospital she would be asked if a student or trainee doctor could take her history, or ask her questions, or examine her, all as part of their training. Trenna always agreed and was extremely thorough and honest with them.  It took quite a bit out of her at times when she was at her weakest. She knew she could refuse, but she felt she was helping others, the doctors and their future patients.  And she felt that a lot of the medical profession had an inadequate understanding of Marfan Syndrome, and she wanted to correct that – and she felt better for doing it.

Volunteer work where they don’t know you

There was a period of several years when Trenna volunteered once a week helping migrants and refugees to Australia to learn English. She loved the work and she loved helping others develop a really important skill. But she also liked mixing with the other volunteers, and with them she only shared a little of her past and her disabilities. Although the half day of activities did wear her out she would be delighted that for a while, to those around her she had seemed quite “normal”.

A thank you card from the students of one of the classes. Most had a very limited ability with English.

Record keeping, diaries etc to keep distracted

There are many reasons why Trenna kept diaries and meticulous records of all sorts.  Just one of those, and it probably wasn’t the main one, was that it kept her distracted. When she was concentrating on what she was writing she wasn’t thinking (as much) of her pain or the fairly crumby set of cards she had been dealt in life.

Horse riding

In February 2020 Trenna did one session of horse riding. By this stage she was on oxygen full time and to leave the home she was pushed in a wheelchair. Despite this, Ruth the OT and the woman from the Claremont Therapeutic Riding Centre got Trenna onto a horse, with the instructor sitting behind her. Trenna thought it was fabulous, she absolutely loved it. Almost immediately COVID came and she never had another opportunity to do it. She loved the experience, she loved meeting the horses, and she loved that it demonstrated that things that seem almost impossible to do were possible when people worked together. Thanks Ruth.

Trenna on the horse. The instructor is wearing a back pack containing Trenna’s oxygen supply, because by 2020 Trenna was on oxygen full time.

Water physiotherapy

In her last two summers a physiotherapist had sessions with Trenna in our home swimming pool. They were a good, relatively low impact way for her to exercise. Thanks Brendan.

Home INR machine

For anyone who is taking warfarin and needs to monitor their INR these machines are well worth the money. It would be nicer if the test strips were a bit cheaper though, Mr Hoffmann-La Roche.

Custom made wheelchair

The NDIS paid for a wheelchair customised to suit Trenna’s size, shape and needs. Even taking into account how it would fit in our car.  Trenna hated that her heart and lung failure had got to the point where she needed a wheelchair, but she also told me she loved her wheelchair, and it did make some outings possible that otherwise wouldn’t have been.

Home modifications

We started the process to get the NDIS to pay for some home modifications. They certainly had potential to assist us, but as it turned out, the very long winded process to get the approval wasn’t completed before Trenna died. I guess the lesson is if it is something you might need, start as soon as possible.

iPads

Trenna got her first iPad in 2011. It was not without its frustrations, and there were many apps that were too hard to use, but overall she found it an invaluable tool, especially for writing.

Still participating in decision making and where possible physical things

Throughout our life together Trenna and I strived for equal decision making and shared physical activities in line with our abilities.

Cannabis and diazepam to help sleeping

Trenna tried various doses of prescribed cannabis oil to try to get pain relief.  It just didn’t work for her. However, 0.5 ml of cannabis oil and a 5 mg diazepam tablet about 45 minutes before bed definitely helped her to sleep.

Having an exit plan made her feel a lot better

Trenna had a plan to end her life if she felt it was necessary.  Once she had that plan in place it reduced a lot of uncertainty and she described being calmer and at peace. (I may write more on this at a later point, but not now.) As it turned out, she didn’t need to use that plan.

Telling people NO

She wasn’t particularly good at this but she knew the power of sometimes saying “NO” to invitations, visits, or other things that just felt like an impost.

Coloured pipe cleaners

It only worked when her eyesight was bad, and not when it was really, really bad. But bright, fluorescent coloured pipe cleaners wrapped around things helped her to see them. Our office chair had them on the protruding legs, to help see them (so as not to kick them) and cords for the camera and iPad were stored using colour coded pipe cleaners. Pipe cleaners ended up on lots of different things.

Bright pipe cleaners were used a lot. In this case, orange meant accessories for her camera. The orange on the bag made it easier to find it in a dark drawer, and the orange on the cord, held it together plus made it easier to find inside the bag.

POTENTIALY having clothes made for her

Trenna had a LOT of trouble finding clothes – I think I’ll do a separate post on the issue – but she was hopeful that getting clothes made for her, although very expensive, would work for her.  As it turned out, it never did, but she and I thought it had potential.

Only use natural fabrics – but that did limit choice

She was a huge believer that everyone would feel better in garments made with natural fibre, such as cotton, as compared to human made fabrics.  I agree with her. However, this made it even harder to find suitable clothes.

Take photos

Often if we were out Trenna would get me to take a photo of something we were looking at. Once we were home she would get me to put it on the iPad or TV , and blow it up so she could see all the detail that she would otherwise miss.

And organise photos carefully so you can find them

Trenna used her laptop computer, and later her iPads to organise her photos by year and in some cases topics.  She spent many hours on this, which she found absorbing.  Trenna had a fabulous memory for dates so it also meant that she could find almost any photo extremely quickly. Her favourite app for photos was the My Pics app on iPad.

Home hairdresser to wash hair

As her heart and lung failure got worse it became increasingly difficult, indeed dangerous, for Trenna to wash her hair. For the last few months Dwyane the mobile hairdresser visited and washed her hair once a week.  The NDIS covered this expense.

Hot and cold fan

Our house has ducted heating and cooling throughout. However using our fan on heating mode in the bathroom really helped the comfort level after a shower. Importantly, when having trouble breathing, cool air blown into your face can provide a lot of relief.

When young, she lay on her stomach

If you have a scoliosis (as Trenna did) or other skeletal issues do this at your own risk! Up to when Trenna was about 40 years old, when her back was giving her a lot of trouble she would lie on the bed, with no pillow, on her stomach and not move for about an hour. She told me that it was initially very painful, but did help. She didn’t do it in later years. Everyone’s body is different so be cautious if you want to try this.

Recce-vite

I have written a brief separate post on this topic. If you tend to stay home a lot because of ill health or disability the recce-vite is designed to give you a bit of a lift without being too taxing on the body. A short, 2 hour maximum trip to a specific location to do a specific thing. It would work for busy able bodied people too, including couples who don’t find the time to go out together much.

Blanket raiser

These are relatively inexpensive (you could even make one yourself) but keep the blankets off your feet. Good if you need to sleep on your back or have foot injuries or pressure wounds.

Apple Watch

It took a lot of persuading but the NDIS did fund Trenna to get an Apple Watch. Mind you her iPhone 6+ was incompatible, so we had to buy a new iPhone which wasn’t funded. It meant that she could ring me by asking Siri, she could get the watch to “ping” her iPhone when she couldn’t see it, and it had “falls detection” which would have called me and emergency services if she fell and didn’t get up. It could also speak the time.

Trip to Japan to try a mid length trip

We were invited to our niece’s wedding in The Netherlands. That’s about 24 hours of flying from Perth. Trenna thought that because of her health she probably couldn’t do that distance anymore. We decided to go on a holiday to Japan, about a 9 hour flight. Great holiday, but it was clear that a trip to Europe was no longer a possibility.

Exercises to reduce pain – until she couldn’t

When I first got together with Trenna in 1988 she was very skeptical that exercise could be used to reduce pain – it seems a bit counter intuitive. A few years later she started doing a regular, moderate exercise session, each morning. Mainly floor exercises and some very light hand weights, I think they were about 0.5kg each. She is certain it helped a great deal. For the last several years of her life she couldn’t maintain that, but she did whatever exercise she could. In due course I will publish some of the exercises Trenna did.

Not lifting anything weighing more than 2 kg (about 4.4 pounds)

That was the advice from one medical professional and Trenna followed it (usually). She had real trouble lifting anything that heavy anyway.

Pain killers (though it isn’t all good news)

Anyone who uses a lot of pain killers knows what a two-edged sword they are. They have a big effect on your metabolism and they can cloud your thinking (but pain does that too). Obviously this is something you need to sort out with your doctor or pain specialist but for those interested, for a good part of her later life Trenna did the following. I would wake her in the morning and she would take 2 Panadeine Forte and a 5 mg Diazepam (as a muscle relaxant) she would then sit on the side of the bed and we would talk or I would read her news stories (which usually put her back to sleep!) until she was ready to get up – typically 30 or 40 minutes. At 2pm she would take more 2 Panadeine Forte. Then about 45 minutes before bed she would take 2 Panadeine Fort and 1 Diazepam. For the last couple of years she took a Lyrica as well. Also 0.5ml of cannabis oil to help her sleep. Very occasionally if she had excess pain during the day she would take 2 more Panadeine Forte. Most of the time she just grinned and beared it, not wanting her thinking to get any fuzzier than it already was. Also, Trenna had a Norspan 10 patch which she changed once a week.

Experiment, but keep good notes

Trenna and I found many coping strategies by just trying stuff out. For that to be effective though you need to make a record of what your doing and what the effect is. And of course, ONLY CHANGE ONE THING AT A TIME!

Write down your pills as you take them

If you are taking lots of medication you are probably using a Webster-Pak, a plastic container with compartments marketed with the day and time, or some other similar method that allows you to look back to confirm you have taken your morning pills, or whatever. But we found that if there was ad hoc medication taken, it was a good idea to write it down STRAIGHT AWAY.

Desk rider

Another piece of equipment funded by the NDIS. They allowed it because it was during COVID lockdown and all gyms were closed. There was no way Trenna could sit on a stationary or real bike’s saddle, or support her upper body on the handle bars. The desk rider, recommended by Trenna’s physiotherapist, Brendan, allowed her to sit in a lounge chair and pedal. This was another thing that came very late in Trenna’s life so she could only ride for a couple of minutes before taking a break and repeating the exercise.

Don’t forget your friends, and don’t forget it can be hard for them

When you are battling chronic illness, and even life itself, it is easy to deprioritise friends and family. But they can be really useful as a distraction, or hopefully, as a real help. It is important to note though, depending on circumstances, a very sick person can be a stark reminder of the frailty of us all. I haven’t got any particular advice on cultivating your friends when everything is so hard, but, I do think it is worth trying.

And Some That Didn’t

Touch screen buttons and audiobooks

I talk a bit about touch screens in my post about our ill fated trip to Wellington. You can’t feel the buttons so it’s hard to find them if you can’t see well. Lots of audiobook readers are MUCH easier to use if you can see! Tren got through at least one audio book – she was very motivated to “read” Life, by Keith Richards.

Badly designed remote controls

Tiny buttons, with tiny writing on them, and little colour differentiation really were murder. Having said that, Trenna’s main evening activity was to “slouch on the couch” as she called it, and watch TV through our PVR. She was REALLY expert at using those two remotes.

Too many doctors when she was chronically ill

There gets a point when you are chronically ill, with lots of comorbidities, when lots of medical assistance is frankly, too much. Trenna had lots and lots of specialists, and I thank them all because they all tried to do the right thing. But when you are already weak, and their interventions may only make small improvements (at best), it makes sense to reduce the number of medical interventions.

A snippet from Trenna’s comprehensive medical notes. This one is recording the outcome from a specialist visit. He had been trying hard to find things to assist Trenna, but wasn’t having a lot of success as she was so ill.

Business class to NZ

Once we chose to fly business class hoping it was better for Trenna. The extra room probably did help but she couldn’t get the full benefit of the seat and the entertainment facilities. Read the full story here.

Find the start button on this when you are blind.

Pain killers

My main points about pain killers are in the “things that worked” section but I did want to note here that all drugs have side effects, and that was certainly true with pain killers.

Custom made chairs

We spent a small fortune on either custom made or custom modified chairs in an effort to come up with something that Trenna would find comfortable. We did this with our lounge chairs and with dining chairs, and we bought 2 very expensive office chairs all in the hope they would work. None of them did – I’m not really sure why, but it might be a bit like trying to test mattresses in a showroom, fully clothed in the middle of the day. One chair that was quite comfortable was Trenna’s wheelchair. Again, credit to Brendan. The wheelchair was highly adjustable with foam wedges that could be inserted into pockets in the seat and the seat back. Trenna found that very comfortable once Brendan had worked his magic (or more likely science and artistry).

Custom made clothes

Trenna never cracked this one. It seems obvious that you should be able to find someone to make clothing for you, even if your body is a bit odd shaped. She and I expect that is true – we just never found the right person. Trenna could usually put on a confident persona, but I think her bad eyesight, and her being unjustifiably kicked out of sewing class at school meant she had trouble confidently conveying what she wanted. It was a huge shame for someone who loved fashion so much.

A Final Point

I have just reread this post, and want to say something in case I have given the wrong impression.

Careing for someone who is very ill, really careing, is hard work and takes a large toll. But it is immensely rewarding. I would have loved it if Trenna had had great health right to the end. She would have loved it too. But that just wasn’t going to happen.

I love that I had that opportunity to help her, which in turn allowed her to help me.

I don’t regret a moment of it.

I’ve now completed Part 2, and I’m working on a Part 3. To see Part 2, please click here.

Are you someone with a chronic illness or disability, or the carer for someone in that situation? If so I’d love you to add your own tips and tricks via the comments section below.