Our Chronic Kidney Disease Journey: a Carer’s perspective

Loraine and Martin

 

My wife Loraine was advised that she had a kidney problem thirty years ago but no definitive cause was ever diagnosed. After about ten years being relatively dormant, tests in December 2002 indicated that dialysis would be required within a few years. We moved to “a retirement coastal town” in central Queensland from Brisbane in late 2003 after both of us had completed successful independent business careers. We were looking forward to retirement. We planned to travel around Australia, spend time with family and support Loraine’s father Noel in his later years. In August 2004 Loraine was referred to the Renal Clinic and monitoring of her condition indicated that dialysis would be required shortly. Our plans and dreams for the future came to a sudden halt as we assimilated how dialysis requirements would control our lives.

The transition from “You’re OK” to “You need dialysis” took place very quickly (two months). Loraine elected to use the Peritoneal Dialysis (PD) method of dialysis because of the extra flexibility it offers. PD cleans your blood, helps to control the water and replaces the work of the failed kidneys. PD is done every day with bag changes four times a day, using your peritoneal cavity, located in your tummy. Our first hurdle was gaining access to surgery to have a Tenkoff catheter inserted to ensure PD treatment could commence. Our Regional Queensland Public Health system is not geared to provide Tenkoff catheter surgery, and a wait list of several months applied for the bigger Metro Hospital. Fortunately with private health cover, surgery was arranged at Bundaberg within a two-week period. Having maintained our private health insurance, it meant my wife could proceed with the lifesaving dialysis treatment much sooner, closer to home and without incurring the difficulties of home displacement and finding accommodation in Brisbane whilst the surgery took place. This relatively sudden transition from being OK to hospitalisation for surgery and commencement of the dialysis treatment was quite overwhelming for Loraine. She was very grateful when a relative turned up to visit her in hospital, as I was unable to be in attendance 24/7.

At this stage I started the transition from husband to carer by sitting in on the PD training, taking responsibility for stock orders and providing my wife with the love and support she needed. During the following 18 months Loraine dialysed at home using PD. She then “upgraded” to using the overnight Automated Peritoneal Dialysis (APD) system, which was quite an improvement due to the absence of “4 bag changes” during the day.

In April 2006 Loraine’s medical condition radically changed when, due to an undiagnosed epileptic condition, she had a head on crash with a substantially larger vehicle. I remember the day well. Loraine had not arrived home after a small shopping trip and worry set in. Then the phone rang… that daunting phone call from the police, stating that my wife of 40 years had been in a serious car crash and was in a critical condition. The resulting injuries were quite extreme and Loraine spent 6 weeks in Royal Brisbane Intensive care and a further 2 weeks in high care nursing.

One of the consequences of the accident was damage to her peritoneal diaphragm. Not only was my wife critically ill in a short-term sense, the non-availability of PD created a long term change to our lives. This necessitated urgent changeover to haemodialysis (another form of dialysis, which involved strict three times weekly appointments in Hospital for five hours each). Initially a temporary catheter was inserted into Loraine’s major artery and eventually fistula surgery was necessary. This long-term hospitalisation period underscored how hospital departments tend to be compartmentalised with little or no co-ordination of the booking times for services. Loraine’s condition required dialysis three times per week, medical treatments for rib and chest injuries, throat specialists due to need for a Tracheotomy to relieve breathing problems plus initial treatments for epilepsy. I was fortunate that Loraine’s sister came and shared the role of being bedside for these weeks as we to tried to support Loraine through all of her health problems. My role of carer drastically changed.

Upon discharge from hospital Loraine attended the local Renal unit for haemodialysis three times a week. Unfortunately, due to Loraine’s epileptic condition, she became dependent on others to obtain transport. This was a real loss to Loraine’s independence, as she no longer had the freedom to get herself to shopping or dialysis.

After two years of Renal Clinic treatment Loraine and I jointly underwent the training to operate and self-manage haemodialysis treatment at home. This commenced in April 2008 and has continued without any infections for the past 6 years. This period of joint treatment has bonded us as a team, and it has allowed us to travel to see our family and visit parts of Queensland. We would have found this hard to do when we were reliant on the hospital haemodialysis service.

Additional traumas for Loraine occurred when she left the renal unit one evening December 2006 after dialysis. Her low blood pressure led to her fainting and falling. (Haemodialysis is a heavy going treatment on your body and patients can sometimes feel sick, dizzy and experience muscle cramping after a session). Loraine’s fall resulted in a broken hip and hip replacement surgery. After several years we learnt that the replacement hip was of the DuPay type (metal on metal) and blood testing confirmed high levels of cobalt. This necessitated a further hip replacement operation July 2011 and involvement in a compensation claim. Using past business experience I was able to undertake the research and preparation of claim documentation required to lodge an application for compensation. However, this placed us again under some emotional stress as we had to review the incident over and over to support our case and we are glad that is behind us now.

Due to severe arthritis, Loraine’s mobility has progressively deteriorated so I have taken on responsibilities concerning all household shopping, most of the meal preparation and with assistance from Blue Care the household washing and cleaning. Over the years of Loraine’s chronic Illnesses, I have watched her physical capabilities decline, however recently her mental strength is returning and new ways of enabling her to enjoy cooking are bearing fruit.

Renal patient care and advocacy.

One of the things that has really assisted our lives journey together is how we have both undertaken voluntary work and throughout our life been able to share common interests. Examples have included partnering together in car rallies when Loraine drove and I navigated, and at other times common theme activities such as Scouts & Guides and officiating at motor sports.

One of the special interest groups we have both been passionately involved in was the local renal patients support group, as this was a valuable source of advice and information for new patients. In 2004 Loraine took on the role of President and I became Secretary/Treasurer. This continued for over 6 years. As active consumers we were able to identify what patients really needed in the local community. Through local fundraising, networking and local planning over the years we have seen adequate car parking be allocated for Dialysis patients; provided a voice to patients on advocacy issues they may not have been able to solve themselves; bought television units for Renal Units so patients can watch during their 5 hourly dialysis sessions; profiled kidney awareness activity in the local community; assisted in the development of Home Therapies patient packages; and inspired other patients/consumers to drive innovative ideas and processes to make life better for Kidney patients.

I have been able to utilise my past work experience to commence advocacy regarding perceived planning shortfalls in health and community. The local renal unit was critically overloaded with patients, to the extent that eventually patients were being transported by mini bus from Maryborough to Gympie for treatment while the renal unit was working up to three shifts of patients per day. This situation progressively attracted other advocacy groups and some local political interest and resulted in a new satellite renal unit being built at Maryborough and substantial expansion and refurbishment of the Hervey Bay unit. This situation emphasised the lead-time to develop the planning submission for extra capacity (even after Government announcement of new capital works it still requires up to 2 years for design and construction).

From 2009 I started contributing to the Kidney Health Australia (KHA) Queensland Consumer Participation Committee and was able to contribute to several national activities. These activities are very beneficial to me as an individual as they provide scope to keep mentally active.

In 2012 with the new Board structure for the Hospital and Health Services established by the Queensland Government, I successfully responded to advertisements for membership of the Consumer Advisory Network and was elected Chair for Fraser Coast.

I believe the recent changes handed down in the Blueprint for Better Healthcare in Queensland now allows local support groups to be able to act independently from State and National bodies and develop a grass roots approach to issues that face patients daily. A cooperative approach between HHS Health Professionals and patients at a local level goes a long way to shaping the healthcare of the future.

Maintain an Active Lifestyle.

On a last note, a particular risk when engaged in a carers role is that the person withdraws and becomes isolated with a focus just on immediate household issues. This can be so easy to do, as there is always so much to be done. I have ensured this is not the case with myself as I have been fortunate enough to maintain an active involvement in motor sport officiating at National and International levels. Both Loraine and myself have been determined to retain a part of ‘who we are’ and ‘what counts for us’, and entwine our health journey into these plans. At times, this is no easy task, additional planning is required to ensure that dialysis treatment will be available for Loraine whenever the time away from home exceeds three days. This approach has enabled us to participate as officials in World Rally Championship (Northern NSW); V8 Supercars on the Gold Coast and Asia Pacific Rally championship held on the Sunshine coast.

This level of activity and travel would not have been possible without the tremendous co-operation and assistance provided by renal units in making dialysis facilities available. Some locations only have a single chair/fully self-help system, while at some Home Therapies locations Loraine becomes a travelling ambassador showing that life can continue on, even after starting haemodialysis.

For 2014 we will be planning longer trips and more activities to see other parts of Australia and through planning we know we will get there.

Martin.

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Thanks to Martin, Loraine and Health Consumers QLD for this story.

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