Heather’s Story – a caregiver’s perspective

In January 2009, Robert got a cold. He seemed to shake it off fairly well. However, this seemed to accelerate the disease. Robert went traveling later that year, to China and to Scotland. He felt he must get in some travel this year, in case it was not possible later. He spent a week refereeing “the little ones’ at the USA Cup in Minnesota. He has done this week refereeing annually since 1995, refereeing the oldest teams. This latest trip will be his last.

The summer of 2009 saw Robert’s health deteriorate somewhat. He gave up referring as it became impossible. He developed a painful dry cough. He began to have problems climbing stairs and soon it was a great effort to shower and dress. This took quite some time as he had to lie on the bed in between to get the strength to carry on. He also has lost about over 60 lbs in the last 18 months.

In July an assessment was done for potential lung transplant. This was a week long series of test- very tiring. However, Robert was not put on the list as ” he is not bad enough yet for that”. At least the tests are done just in case the disease accelerates. The tests will have to be completed annually in case a transplant becomes necessary.

Robert is quite frustrated now and feels guilty because he can’t do anything around the house and the garden. Perfumes and cooking fumes start him coughing uncontrollably. I have to be careful when preparing meals. It also makes things difficult to go out to dinner. Not only do the fumes bother him, but he gets nasty, hurtful comments from people in the restaurants. A couple of comments I heard are:

“Lets get out of here before we catch something nasty” and even “ Your cough is bothering me because I am eating”

Note Robert is likely to die from catching a cold or flu from a contagious person in the street. PF is not contagious at all! This disease has made me see one should not judge others before one knows the facts.
Work has become an issue. He has gone from full 7 hour days to about 3 hours a day, some days he is too exhausted to go to work. Robert is working on acquiring an associate now to help with his work, with a view to retiring in a couple of years.

An X-Ray in September caused some concern for the doctor. A CT Scan was completed in October and Robert will be seeing the specialist on November 12th for the results. Meanwhile the doctor has prescribed oxygen in the house. Robert is coming to terms with the fact that he needs oxygen to get him through the day.

Throughout all this Robert continues to be very positive, trying to keep life as normal as possible. He is a real inspiration to his family and friends.

Robert’s friends are wonderful. He has a really great group of “buddies” who keep an eye on him whenever he is out with them.

I feel very helpless not being able to help Robert and watching him suffer through all this. It is terrible to watch him trying to catch his breath. Then there is the cough. It is so bad sometimes, he actually vomits. His whole body is wracked with it.

January 2010

Since October last year Robert’s health has deteriorated quite a bit. His lung X- ray at the beginning of December showed the fibrosis was more advanced in one lung than the other. This is unusual apparently. The usual thing is for the lungs to deteriorate equally. Dr Singer decided he should think about going on the transplant list. First she wanted Robert to undergo a couple of tests to make sure his heart can stand the surgery. He had an esophageal ultrasound which showed no problems. Then in December he had an angiogram. His cardiologist said this looked OK – nothing had worsened since last January.

Now we wait for the transplant team to decide if Robert is a candidate.

Meanwhile, Robert had a cold in December, which slowed him down quite a bit. He ended up in ER for a lung X-ray as his breathlessness was worrying him quite a bit. However, this showed no worsening since the beginning of December. Perhaps the cold was affecting how he felt. He is now on Prednisone. This has calmed the cough down quite a lot, which is good. I am now helping him shower and dress and get ready for bed. Life is pretty busy! Robert uses the oxygen most of the day now, but manages without it at night.

He has some bad and some good days. The last couple of days have been good.

Robert now has an associate help with his business. Hopefully, he will be able to do minimal work from home now.

January 12 2010 – Good News!

At last we have the answer we have been waiting for!! Robert got a call from TGH today, telling him he has been accepted for the Lung Transplant program!!! What a relief! Now we have some hope! We will head down to the hospital on Tuesday to get set up.

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1 Comment on "Heather’s Story – a caregiver’s perspective"

  • Your stories from John, Rina, Robert and Heather have really moved me. I was diagnosed with IPF just over a year ago and am now hoping to get onto a transplant list in Edmonton. It has been very helpful hearing there feelings,hopes and thoughts as I have felt I was the only one feeling this way. It was like they had been reading my mind. Thank Canada AM for me as this both made me cry but also lifted my spirits. Please let the families know it has been a great help.

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