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A Wife’s Perspective

Back in 2011, Hannah was caring for her husband Tim who was waiting for a double lung transplant which he received in received in October 2012. Tim and Hannah also have two lovely daughters Rachelle and Amy.

Can you tell me a little bit about what it was like from when you first met Tim? Did you discuss what the implications of him having CF might mean to you both?

I first met Tim when I was 13, Tim was 15, I had come from Adelaide for a holiday and we met at Bible school. I had no idea that he had CF. He had a couple of rough patches when he was 15 or 16, but as I was living in Adelaide and we had no email then so I really didn’t know what was going on. We did keep in touch and we caught up with each other when I came to visit my family once a year.

When I was 18, I came over for a holiday and we started dating. When things were getting serious Tim’s Mum spoke at length to me about what a relationship with Tim could look like. Tim was very open about his disease, and when discussing our future plans, we discussed the fact the it would almost certainly not be possible to have children because first and foremost CF can cause sterility in the majority of CF men, and also because of colds and infections and if we did really want to go down that track then it would probably only be possible if we had IVF treatment. The CF doctors had advised against having children as well because of the risk of infections. Although I always really wanted children, I still wanted a relationship with Tim. As soon as we started dating I had a blood test to see if I was a carrier, so I would know what to expect if we ever did decide to have children.

We have now been married 13 years. We dated in 1999, I moved to Perth in 2000 and we married in 2001. Six years ago we spoke to the doctor about what the prognosis was for Tim, he advised us that there was no clinical reason not to have children, so we went ahead with IVF. We were lucky as in 2007 we got pregnant with Amy on the second IVF attempt and in 2011 we got pregnant with Rachelle, again on the second IVF attempt.

Do you feel that your relationship changed much when Tim has been unwell; particularly when he was waiting for his lung transplant?

Tim got really sick in June 2012. It was a routine check-up, he stayed in hospital for two weeks and just before he was due to come home he caught influenza A and became extremely sick again. He had a really high temperature. The ICU team introduced themselves, advising that he could turn either way. I prayed that I would have a husband in the morning. Fortunately they got his temperature and the infection under control and he became better. Unfortunately, this did a lot of damage to Tim’s lungs and it wasn’t long before they listed him for lung transplant.

Whilst waiting for transplant, Tim came home for a week. During that time our daughter had a cold which Tim caught and he went straight back to hospital where he basically stayed until the transplant. We went into lock down. We had very little contact with anyone, only on-line shopping and we took Amy out of school and avoided public places for fear of catching an infection, because we wanted to keep seeing Tim in hospital and were very careful not to bring any bugs with us; there was a lot of disinfectant hand gel used during this time.

Before that time we always had regular hospital trips and occasional scares, but it was just part of the journey. In fact, Tim was hospitalised two weeks after our honeymoon. The hospital were really supportive and set up an extra bed in his room so that I could stay over on weekends, and hospital trips soon became a normal part of life. I soon had to learn to be flexible and accepting. The first few times were the hardest because I didn’t know what to expect. I would start to know when he was becoming unwell because he would become more tired. Tim probably worried more than I did except for when he got really sick. Overall I am not a worrier, I just went with the flow; however nothing was a foregone conclusion that we would get through. I did at one point think of planning a funeral in case his lungs didn’t come in time.

Was it difficult taking on a role of both carer and wife, then letting go of the role of carer when he got better?

I did physio and when Tim was on Hospital in the Home (HiTH) I would get his drugs ready and put them through his line. I didn’t have to go to his appointments; he was able to manage these.  Overall CF has not affected our relationship. During the six months that he was waiting for transplant I had to work a lot harder, Tim was unable to move; even to make a cup of tea was difficult, so sometimes it was frustrating. The experience has made us stronger and more appreciative of what we have. When he was in hospital I couldn’t always be there with him because of the children which made it hard for all of us.

After the transplant Tim was out of hospital after three weeks and as the girls were sick, Tim returned home to his parent’s house for the first two weeks. We would often drive by and wave to him.  It was easy to transition back to a normal relationship. We both felt safer having Tim in hospital when he was really sick. At one stage when he was home he was on oxygen 24/7 and he woke up coughing, I would have to get up and reconnect all the oxygen tubes from his CPAP machine to the oxygen machine, as the CPAP machine didn’t allow him to cough effectively, and so had to take it off. Therefore if I didn’t swap him over to the oxygen, he wouldn’t have had any. My Mum in South Australia had a lot of late night calls during this time, and thankfully she’s a good listener.

When we were married I knew it was highly possible that Tim would have a transplant, but I didn’t think it would come so soon. It’s very hard to know when things will happen. If it wasn’t for the particular bug that he caught, maybe he would still be OK without transplant. When he was in hospital waiting for the transplant, we would often meet at Kings Park for a picnic. Tim loves the wildflowers and would show the girls the different types of plants; it’s something that our daughter Amy still remembers fondly of that time.

The Tim I have now is like the Tim I first met and fell in love with – full of energy and lots of plans.

What things helped you at this time?

Faith in God, family, friends and the support of CFWA. The home care workers would assist with physio which really helped because my wrists were weak and I couldn’t do physio for very long, and when Tim was in hospital we had home help as well; assistance with the ironing really helped as this felt overwhelming.

It’s been really wonderful to see you and your family able to do normal things again now that Tim has had his transplant. Is there anything that you would like to share with our readers that might help if they need to take on the role of carer?

It’s been an interesting journey. Take all the help you can get and concentrate on your relationship. I was lucky I had a good support network that helped bring meals etc. It’s also really important to have some ‘me time’; go for a walk, and do something just for you.

We have lots of plans to travel around Australia, renovate the house, enjoy life and do all the things we couldn’t do before. Tim’s lungs are now at his personnel best, life is good and the girls can enjoy having their “daddy” back.

 

Article from RED Magazine, Edition 1, 2014.


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