Coping with Marfan Syndrome, Heart & Lung Failure, AF, Visual Impairment, Chronic Pain and a Few Other Problems

By Greg

Introduction

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 disability will be able to pick up a tip or two, or perhaps be inspired to think of alternative solutions, or at least be diverted for a few minutes as they step into someone else’s shoes.

The three previous posts are here, here and here!

As always, I welcome feedback at the bottom of the page.

Half Speed Infusions

If you see doctors a lot they will eventually tell you that you need an infusion of something or other. Trenna never did well with infusions, often feeling quite nauseous, or in some other way sick.

This was happening one time when she was having an iron infusion. The nurse suggested it might be better to run the infusion at half the normal speed. They did that and Trenna felt a lot better.

From then on she always insisted that infusions be done at half the speed (but taking twice as long). It seemed to work really well. Trenna’s theory was that her thin Marfan blood vessels could handle it a lot better. I have no idea if that is the case, but it seemed to solve the infusion problem.

Coloured Drinking Glasses

Pretty simple, but if you have trouble seeing you are less likely to knock over a coloured glass full of water than a clear one.

Restricting Your Appointment Availability

For many years we would just accept the times suggested by others for appointments, whether they be doctors, tradespeople, or friends wanting to meet up.

After decades we eventually got smart and restricted our availability. Rarely would we make an appointment for before 10am or after 3pm and almost always we would try to just have one thing on per day, and much later, not even have things on consecutive days.

Almost always people were more than happy to fit in with our limited schedule.

(Warm) Disposable Wash Cloths When on Antibiotics

This one is a bit more delicate, but oh so real if you are in this situation. I even considered not talking about it out of consideration for Trenna. But I am sure she would want me to pass on what we learnt.

It took us a long time to learn this and if I can help just one person, it is worth it.

If Trenna got a lung infection she would be put on powerful antibiotics. This played havoc with her gut biome and resulted in terrible diarrhoea.

That in turn resulted in a very sensitive and painful bottom and the necessity to wipe clean an area that was red raw.

During one hospital visit, when I’m sure they must have totally nuked her gut biome, a nurse helpfully handed us a warmed up packet of body wipes/disposable wash cloths. Bliss! Or at least as close as she could get under the circumstances.

Boy, did we go through some packets of those things on that and subsequent hospital visits.

Some brands allow you to warm the whole packet in a microwave oven. You then have warm, moist and very soft wipes to clean up the mess. Way, WAY better than harsh, dry, cold toilet paper on already sensitive skin.

There are lots of different body wipes on the market. If you have got this particular problem it is the ONLY way to go. Though, see the next item too.

Bidet Seat/Japanese Toilet Seat

These help in the above circumstances as well. I will be talking a bit more about the bidet seat I bought Trenna for her 60th birthday, but which she insisted we send back.

For those who are not sure of what I’m talking about, or who haven’t been to Japan, it’s possible to buy a bidet seat that fits on your existing toilet bowl. It needs to be plumbed into the the toilet cistern and needs electricity.

Some also have a pulse feature which sends pulses of warm water towards your backside and are meant to help with constipation.

Once it is all fitted and hooked up you have a toilet seat that is warm and warm water can do the work of toilet paper. Much easier on the skin. You can then blow warm air to dry things out. All from the comfort of the seat.

If you are still wondering about what I am talking about, here is a link to a shop in Australia that sells them. I am in no way connected to them and do NOT get any commission if you go there.

If you can afford one of these, or a toilet suite that already has one built in I’d highly recommend it.

I do regret sending the one I had, back.

Hard Contact Lenses for Scarred Eyes

I’ve never worn contact lenses, but they did totally transform Trenna’s life. They improved her sight and as a teenager gave her much more confidence and self esteem.

She told me that soft, and also disposable contact lenses didn’t work for her because her eyes had been so badly scarred by operations done on them in the 1960s.

However, hard contact lenses worked wonderfully for her until quite late in her life when her eyes became very dry – probably from Sjögren’s syndrome.

If you’ve tried soft lenses and they don’t work for you, perhaps consider talking to your optician about hard lenses.

Putting on a Bath Robe After Showering/Bathing

An occupational therapist once suggested putting on a towelling bathrobe immediately after getting out of the shower. Not only do you feel warmer but it absorbs a lot of the water which means there is less energy needed to towel yourself dry.

It works well, but in our case we bought two really good quality bath robes. The problem was the thing was so heavy that Trenna found it too hard to wear. Be conscious of that if you are particularly weak.

Recording Bowel Movements

Again, a bit of a delicate one, but living with a chonic condition does focus your mind to the realities of life.

Trenna recorded all bowel movements in her diary – she used a code. These days there are “poop tracker” apps! We never tried them.

It is remarkably insightful to realise 1. how it does effect how you feel, and 2. how bad your memory is about remembering motions.

Upstand/Writing Slope

This probably should have been at the start of the first list as it was the most used of ANY of the tips and tricks in this (so far) four-part series. It is also possibly the reason this website is even possible.

Quite a few year ago, I think it was at the suggestion of an occupational therapist, Trenna bought an acrylic upstand – a sort of big writing slope.

Every morning we would have breakfast at the island bench in our kitchen, then straight after breakfast we would clear up the dishes and set up the upstand where Trenna had just had breakfast. For a number of years her laptop computer would sit on it, and then in later years her iPad.

Any spare time, or if she wanted a break from something physical, she would spend at the upstand writing and documenting things.

If we were sitting inside for lunch we would move the upstand, have lunch and bring it straight back until the evening when Trenna would go into the lounge room to watch TV.

The spot was a good one as it wasn’t too bright but had a great view over our swimming pool and back garden. When at the bench she sat at a stool that had a back to it.

Moving the Furniture Around

Trenna started this even before I knew her. After we met it meant she had someone to move the furniture around for her!

From time to time Trenna would select a room and come up with a new configuration for the furniture. The adage “a change is as good as a holiday” comes to mind. It does give a temporary lift to your spirits as you walk into the room and get a small surprise.

If you have a number of works or art, prints or posters on your walls a similar boost can be gained by moving them around. Try it, especially if you are house bound.

Saturday Night is Movie Night

Not all that much to do with disability or illness other than it is easy for most people to do.

Particularly when I was working full time I often wouldn’t watch TV with Trenna. I’d be doing housework, or surfing the internet or sometimes tinkering in the garage.

But, every Saturday night we would try hard to sit together and watch TV. We didn’t always watch movies, in fact it was much more likely that we would watch a few episodes of a TV series. I look back on those times with fond memories.

A Can of Tomatoes to Stop Oxygen Hose getting Caught on Corners

A bit specialised, and needs a photo to explain, but this related to Trenna being on oxygen full time for her last couple of years.

For those who aren’t aware, oxygen therapy works like this. You set up an oxygen concentrator in a room in your house. It’s a suitcase size electric machine that sucks air from the atmosphere, retains the oxygen and spits out the nitrogen and any other unwanted gases. It then pumps the oygen into a tube at a rate determined by a small tap on the machine.

The oxygen then travels along a very long thin plastic tube that lies on the floor (and presents a huge tripping hazard, especially if you are blind). At the end of the tube is your wife, Trenna in this case, who receives the oxygen through nose prongs.

We were able to set the concentrator in our spare room which allowed Trenna to walk to any other room on the ground floor, dragging the tube behind her. When she did water physiotherapy we could plug it in outside and the oxygen tube would reach into the swimming pool.

I will just note here that this, the machine and all the tubing, was a service provided free by the Australian government, and that the Western Australian government provided an electricity subsidy to help allay the cost of running the machine 24/7. There are some good, government funded services around.

So Where Does the Tomato Can Come Into It?

The problem we encountered with dragging an oxygen tube around the house was that occassionaly it would snag on something, catching Trenna unaware and jerking her around by the nose!

In our case this usually happened on one particular piece of furniture – an antique sideboard we bought at auction many years ago (there will be a future post on Trenna attending auctions!).

After a lot of thinking, and a bit of experimenting I realised that if I put a tin of tomatoes in a particular spot the hose would use that as a guide/roller and would no longer get snagged. I worked a treat.

Touch Lamps Are Quiet

Not long after we started living together the topic came up of being read to in bed by a parent. Trenna had absolutely no recollection of anyone reading to her as a child (she was an orphan).

So, every night, for more than 30 years I read to Trenna for 10 minutes before we turned off the light. It worked a treat in helping her to go to sleep.

BUT, then I would try to Q-U-I-E-T-L-Y turn off the beside light and, CLICK! would go the switch, and Trenna would wake up!!

However, a touch lamp that you just touch and it goes out would work wonders. There are phone apps for that too.

In the end it wasn’t too big a problem, we never got a touch lamp, but Trenna did go onto Cannabis – wonderful for promoting sleep. See my article on medicinal cannabis, here.

Electrical Adjustable Bed

With more than 30 years of marriage, as you would expect we went through quite a few different bed and mattress combinations.

However in the last couple of years we realised that we needed something like a hospital bed. We were able to get some assistance for this from the NDIS (see note below) and it really was good.

In case you aren’t aware of what I’m talking about …..

Basically it is a bed that is as electrically adjustable in the same way as a hospital bed, but just fits into the décor of your bedroom a bit better.

We certainly used it to raise Trenna’s head when she was having reflux issues, or if she needed to take pills after going to bed. Sometimes we used it to raise her feet when they were swollen due to heart failure.

The bed could be raised or lowered to get it to a height that was easier to get in and out of, but we usually had it at a good height to sit on, as Trenna would get up every morning, sit on the side of the bed and take some pills, and then usually sit for another half hour or more waiting for the pain killers to start working, and her heart and body to get used to being vertical.

Carers were assisted in that you can raise the whole bed quite high so you can change the sheets without bending too much.

It was even adjustable enough to move into a shape a bit like an armchair if you wanted to watch TV whilst in bed (Trenna never did). On that setting, with a further adjustment it could tip her out of bed, onto her feet (albeit with all the bed clothes following her).

The final feature I will mention is that it had optional cloth-covered bed ends. We had them covered with a cloth that fitted in with the décor and made it appear on first inspection just like any other bed.

NDIS Note. The National Disability Insurance Scheme was prepared to pay for a bed for Trenna that was fully adjustable.

At first they were prepared to pay for just the one bed, but we made the case that we would have to get rid of our King Size inanimate bed and therefore I would need to have a bed too to be close to Trenna.

In the end they funded an adjustable bed for me of the same size but with fewer functions. I paid the difference and had one the same as Trenna’s.

Palliative Care

A few years before Trenna passed away our GP suggested it might be time for us to consider palliative care. This would have been a very confronting idea had we not already done a little research on it. Well, to be honest, despite that it was still confronting.

In essence palliative care seeks to manage and alleviate symptoms, rather than treat and “cure” the ailment(s).

It DIDN’T mean that Trenna’s death was imminent, OR that we or her doctors should just give up, OR that Trenna shouldn’t seek help that might make her better (than she was).

What it did do was put us in touch with, and allow us to get ongoing help from a palliative care service – in our case, Silver Chain. Like so much in the Australian medical scene, this was a totally free service (that is, it was funded by the government).

Around the same time Trenna’s respiratory specialist referred Trenna to a palliative care specialist in private practice. For overseas readers, this meant we did have to pay a fee for service, but got a good rebate through the government Medicare system.

Both services were useful. Here’s why.

The private specialist worked closely with a private hospital, in this case St John of God Hospital in Subiaco. This meant that if Trenna felt she needed to be admitted to hospital she just had to ring up the specialist’s office and it would be arranged. Admitted straight into an area that the specialist visited daily.

Trenna and I never wanted her to go to hospital but we both recognised that at times it was essential. This made it so much easier.

The palliative care specialist was also the person who could authorise ongoing 24 hour a day oxygen for Trenna, again at the tax payers’ expense (thankfully). It turns out that the government agrees that access to oxygen is a basic human right.

The Silver Chain Palliative Care Service played a different role. Once Trenna had been assessed by one of their specialist palliative care doctors we were able to book a regular weekly (or more often if needed) visit from a Registered Nurse.

They would come every week have a chat and thereby glean information about how the two of us were going. They could also answer questions and of course if there were dressings to change or other nursey things to do they would gladly do them. If necessary they could arrange a visit from their palliative care specialist doctor.

A really important part of the service for us was that they were on call 24 hours a day to either help over the phone or to come out and visit, even in the wee hours of the morning. That is a really comforting service, and one we used a few times.

I would like to give a shout out to Howard in particular who was probably our most regular Silver Chain Nurse. He always brightened up our day. Thanks Howard, and your colleagues too.

Wheat (or lupin, or some other grain) Bag When an Electric Blanket is an Issue (also good for sore joints)

These sorts of bags, that you heat in the microwave oven are great for sore joints, aches and strains. We had several.

They also can be used as an imperfect substitute for an electric blanket, especially when travelling when you don’t know what you will have in your room.

Other times I would heat one up for Trenna when she was watching TV on a cool night – nice.

Another use we found was when we had to take a curry to our friends Lyle and Milka’s curry night. I would heat our contribution at home, put it in an insulated bag with one of these heat packs and it would keep the meal warm until we ate it.

It worked just as well if we took a curry or fish and chips to the outdoor cinema.

If Legit – Use Your Disability to Get What You Need

In my view, if you do have a disability it is perfectly OK to use that as a reason to get some sort of relevant dispensation or assistance from traders, government or others. Your disability takes so much from you and often gives so little back it is fine to use it to make your life a little easier.

Holiday at Home

We never fully realised this but were working towards it. Holidays are great but if you have disabilities or chronic illness they can be hard work.

We therefore were improving our home and back yard to give it more of a resort sort of feel. The idea was that from time to time we would break with routine and do things differently. Lying around relaxing, reading (if you are able) or watching TV whenever you damn well want, and eating different (and probably less good for you) food. And don’t forget cocktail hour/beer o’clock!

We came up with this notion before COVID but in preparing this article I see there is now lots of advice available on this topic.

This article takes a slightly different approach, but I thought it was good. It contains this interesting snippet:

"One study, for example, showed that when men at risk for heart disease didn’t take annual vacations, they had a 32 percent higher risk of having a fatal heart attack than those who did. Likewise, a study of women showed that those who took vacation rarely — i.e., once every six years or less often — were eight times more likely to develop heart disease." 

A Staycation in the City for Shopping

We only tried this once but I am mentioning it here in case a reader might think it worth a try.

We lived (I still do) only about 10 minutes drive from the Perth city, but like all cities you have to drive around looking to park and then usually have a good walk from wherever you park to the shops you want to go to.

These days ride share services provide an alternative to that, but what we did was book a hotel for a couple of nights in the city, near clothing shops.

What we were trying to achieve was get Trenna to clothes shops to look at items before she had lost too much of her energy. We still didn’t use the change rooms but bought the items back to the room to try on (and then return if necessary).

Feasibly we also could have done two or three assaults on the shops, returning to the room in between for a rest and a cup of tea.

Global Knives

As I explain in a forthcoming post the Global brand knives worked really well for Trenna. Firstly they are a very good quality knife at a reasonable (but not cheap) price. However the real benefit is that they are much lighter than other good quality knives which makes them easier to use and more controllable.

Rock Chopper

Not for chopping rocks! This and the Global Knives get a mention in an article I am writing about Trenna’s kitchen.

It is a useful tool for chopping herbs as it requires minimal effort and has the advantage that both your hands are kept clear of the cutting edge – very handy if you have poor eyesight.

Night Visiting Doctor (and now TeleHealth)

On the few occasions we used it we were very impressed with night visiting General Practitioner doctors. I don’t know if there are similar services to this in other countries, but I am pretty sure access to to this would be limited in regional and country Australia.

There are a few different organisations that provide this sort of service in Perth and I think we used two different ones. They only provide services after hours (after about 6pm) but are available all through the night.

If you have a medical issue that is worrying you and you don’t want to wait for your regular GP (and it isn’t life threatening) you give them a ring. A short while later a qualified doctor rings you, asks about the problem and your medical history. They use this to triage your call and give you an idea about when they will arrive at your house.

On the occasions we used them they arrived about when they they said they would, were clearly competent and helped with the medical issues. They are also able to give you prescriptions and even a small quantity of drugs to get you through the night.

The ones we used operated as a two person team, the doctor and another person who seemed to medically assist them, plus do the driving and provide a bit of extra security.

Really importantly they reported to our GP what they had done, and the visit was bulk billed to Medicare, so it cost us nothing – how good is that?!

Since COVID TeleHealth has also become a bit of a thing, but that usually isn’t available at 2 or 3am.

Key Ring (small) Pill Holder

There are all sorts of small containers for carrying the pills you might need if you are going out to dinner or to a party. Trenna used a Tupperware one and always kept it in the same place in her purse.

The 2 or 3 Flannel Wash

People who are very sick and have no energy can have a lot of trouble showering or taking a bath.

The whole time I knew her Trenna was insistant that she had to have a shower every single day so it was emotionally difficult when this was physically impossible.

For such times we developed a pretty effective body washing method using 2 or 3 dedicated flannels/face washers. We had a colour coded system to ensure that certain flannels were only used in certain regions of the body.

We would do the job together with me rising out the cloths, doing areas Trenna couldn’t reach, and following instructions. If the weather was even remotely cool we would turn on the fan heater that we kept in the bathroom.

Smaller Containers Easier to Lift and Control

Trenna was given a guideline many years ago by a medical professional that she shouldn’t try to lift anything weighing more than 2kg. Regardlass of what damage it might do to her body, she had trouble controlling heavy things she was lifting.

Often the answer was for her to ask me or someone else to help. But there were other solutions.

One was to make sure that we bought smaller containers of products if Trenna was going to be lifting them.

For example we always bought milk in a 1 litre carton rather than a 2 or 3 litre plastic bottle. Another was liquid clothes washing detergent. We got the 1 litre bottle rather than the cheaper 2 or 3 litre versions. We did similar things with all sorts of other products.

Often the smaller versions cost more, but sometimes it is practical to buy the larger version and then decant it into a container of a more manageable size.

Audio Descriptions

Many visually impaired people know all about Audio Descriptions, often available on TV, at the movies, on streaming services, and for those who still use them, DVDs and Blueray discs.

Audio descriptions are a seperate audio track where a voice actor describes what is happening on screen. It is impressive how they can provide such useful descriptions without wrecking the dialogue by the characters.

I still use it almost all the time even though my eyesight is pretty good. You would be surprised how often you visually miss a detail that the audio describer mentions.

I recommend audio descriptions to everyone.

The Guardian Episode by Episode Recaps

These are worth reading whether you are visually impaired or not. But, if you can’t see too well, these sort of recaps help you understand some of the nuances of your favourite, quality TV dramas.

So what am I talking about? The Guardian from time to time selects a television series to follow, and each week, as it is released (usually in the UK) they will recap what happened in the episode that just screened, and often speculate with you about what might happen as the plot develops.

The beauty of The Guardian’s recaps are they are always well written by professional journalists, not just enthusiastic fans. The other advantage is The Guardian’s huge readership don’t hesitate to comment on the weekly posts adding their own, sometimes insightful, and often hilarious takes on the shows.

They don’t (couldn’t) do all shows, but they cover quite a few. For several series Trenna and I would watch episodes and then read the episode by episode recaps, often getting insights or popular culture references we had missed. This was often something we did over breakfast, me reading to Tren.

Stories on The Guardian are free and not behind a pay wall. To find them Google something like “The Guardian episode by episode recap <insert name of TV show>”. If you do this and enjoy them please consider donating to The Guardian. They do some outstanding journalism. Their podcasts are good too.

The Guardian aren’t the only online source of what I’m talking about but their quality is consistently high and the reading always entertaining.

15 Minutes of Gardening is Better Than None

Trenna and I both loved gardening and when we were newly married we would often spend huge chunks of the weekend in our back yard. As time marched on and as Trenna’s health deteriorated it became much harder for Trenna to do physical work in the garden.

However, she found that even if she spent just 15 minutes in the garden she could get some satisfaction and enjoyment from it. The same would apply to other pursuits that couldn’t be done as vigourlessly as before.

Mind you, if it was a nice day she would often set her alarm for 15 minutes, and then just ignore it when it went off!

Australia’s Medicare

What a fabulous, life changing and life saving Government programme Medicare is. It was established in an earlier form by the Whitlam, Labor government and provides either free or heavily subsidised health care to all Australians.

Having Medicare in place meant that there was no hesitation on our part when we thought Trenna needed some medical assistance. It gave us huge peace of mind.

That’s All From This Series For Now

My list of adaptations, hacks and ideas has run out for now. As I go through my day to day activities I sometimes find I’m doing a task in a particular way, then realise that that is because it worked better for Trenna that way.

No doubt I’ll come up with a few more, and if I think they will be useful to someone they will appear in these pages.

In the mean time please leave a comment if you have your own ideas or innovations, or if you think some of mine (and Trenna’s) are good, or whether you have improvements to suggest.

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