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Our Journey With MDS: Watch And Wait Is Not So Bad

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Published: Apr 28, 2014 3:44 pm
Our Journey With MDS: Watch And Wait Is Not So Bad

As Michael’s caregiver, I have become the person who watches and manages everything from doctor’s appointments to diet, medication and test results. I also spend a lot of time these days worrying about all sorts of things. I find myself watching him trying to gauge if his energy levels are up or down. When I ask, he invariably says he is feeling okay; a little tired, but okay.

Sometimes I find myself looking at his skin color to try and determine if he is paler than he was the day before. Michael would probably say that I am ob­ses­sive, but I just want to care for him. So most of my observing is done without drawing attention to what I am doing. I know that if I am too overt about my watching, it will only make him feel worse, and part of my role as his caregiver is to be positive and supportive.

The recent Australia summer has been one of extreme heat, with what seemed to be weeks and weeks of temperatures in the high 90 degrees Fahrenheit (high 30 to 40 degrees Celsius). I noticed very early in the summer season that Michael did not have the energy he usually has for outdoor activity. In fact, for the first time since I have known him, he declined the opportunity to water ski with the rest of the family, who came to spend the Christmas holidays with us.

During the long weeks of summer, we had our usual encounters with snakes. Because of Michael’s com­pro­mised immune system, I felt particularly anxious about him coming into contact with a snake. But, luckily for both of us, snakes really are less interested in us humans than we are in them.

Living on the edge of a beautiful lake, we have both always been keen bush­walkers, kayak­ers, and camp­ers. In the past, both of us were members of the local Alpine Search and Rescue unit, which meant that we had to be super fit — able to carry a 45-pound (20-kilo) back packs into snow covered terrain and camp out in snow caves.

But these days, mainly due to Michael’s energy levels, we don’t do anything more energetic than slowly me­an­der­ing along the edge of the lake with our ever hopeful dog, who doesn’t let us forget that it’s walk time.

Having had record high temperatures during the summer, we are now heading towards another winter and have already had the first frosts of the season. Glorious autumn colors can be seen all around us, and they remind me how much I enjoy the change of seasons.

Michael’s lack of energy during the summer has now been replaced with him trying to endure the cold, which for the first time he feels much more than I do. Usually reluctant to light the first fire of the season, Michael had wood delivered much earlier than usual, and to my surprise, the fire was lit much earlier than in any pre­vious year.

Earlier this month, we were given a clear indication of why he is feeling the cold, why his energy levels are so low, and why the couch has become his new best friend.  Michael’s monthly blood test results showed a sudden change in his hemoglobin levels, which have dropped from 8.7 g/dL (87 g/L) to 7.4 g/dL (74 g/L) in the last four weeks.

Michael’s hematologist decided that it was time for Michael to receive his first blood transfusion. This will be his first treatment for his myelodysplastic syndrome (MDS). Up until now, we were watching and waiting.

For many people who have been newly diagnosed or who have a loved one who has been diagnosed with MDS, being told that you need to just watch and wait is very frustrating.

However, it occurred to me when we received Michael’s latest results that “watch and wait” is not so bad after all, because it indicates that the disease is stable and that he is not progressing. I am no longer sure why it frustrated me so much in the early days.

This week, just two years after Michael’s MDS diagnosis, we are getting ready to travel to Canberra for Michael’s first blood transfusion. His disease seems to be pro­gressing, and I have to say we are not ready for this to be happening. We are too young to be going through this; we are only in our fifties, after all.

I fear that Michael is moving into another phase of this disease, and I envy those who spend many years watching and waiting.

We want to watch and wait for longer.

Dinah writes a column for The MDS Beacon that describes the perspective of the family and loved ones of those who have been diagnosed with MDS. Her husband Michael was diagnosed with MDS in 2012 at the age of 55.

If you are interested in writing a regular column for The MDS Beacon, please contact the Beacon team at .

Photo of Dinah Fischer (right) and her husband Michael (left).
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8 Comments »

  • Allison said:

    Hello Dinah,

    Thank you very much for sharing your thoughts about the watch and wait approach. I always find your perspectives as a caregiver interesting, and this column is no exception. I never thought about the fact that watch and wait can have its merits but I see it now. I completely understand that you wish to watch and wait for longer.

  • Terry said:

    What a wonderful snapshot of what has been going on with you and Michael lately, Dinah. I have been looking forward to your latest update, and it did not disappoint.

    I am sorry to hear that Michael has started to need transfusions due to his MDS. I hope, however, that this is the only change in his disease that he will experience for a long time to come, and that it does not create too many inconveniences for him or for you.

    I can understand the frustration many people feel with “just” watching and waiting. Particularly for people accustomed to being in tight control of their lives, the strategy can seem far too passive — almost negligent.

    The key is exactly what you have highlighted, which is to realize that, when you’re dealing with MDS, being able to “watch and wait” is much better than just about any of the alternatives. You simply have to get past the resentment and dissatisfaction of not having as much control of the situation as you might otherwise prefer.

  • Dinah (author) said:

    Hi Alison, thank you for your lovely comments. Whilst being a caregiver can be difficult at times, I would not have it any other way. I hope Michael gets through this disease ok. Only time will tell. Dinah

  • Dinah (author) said:

    Hi Terry, thank you for your feedback regarding my latest column. I totally agree with you. I sometimes worry that I can’t always be in control of how things in my life pan out. But of course it is not often possible to be in total control of our lives. I think now that Micheal’s MDS is progressing, I am trying to be calm and supportive for his sake as well as mine. We both continue to be positive about our future and hope that Michael will get through this disease. Dinah

  • Ric said:

    Hi Dinah & Michael: I’ve just turned 71 and was diagnosed with low-risk MDS in 2008 (it took over 4 months to diagnose!) Sorry for you having to deal with transfusions now, but I understand that at your age a stem cell transplant may be a good option.

    In the last six years, I’ve had 264 units transfused and am on Exjade chelation to keep my serum ferritin under control. However, I also have to watch my creatinine levels, which tend to increase with Exjade’s side-effect. Since you are starting down this road to raise Michael’s Hgb level, I suggest you keep a handy record of the transfused unit donor date / expire date and volume. Where I live in Canada, there is quite a variation regarding dates and volumes which both make a difference in effectiveness of raised Hgb level.

    A few comments regarding PRBC [packed red blood cell] transfusions. I’ve had a few bad reactions with units that are called “least incompatible.” While the Blood Bank takes care in cross-type & matching, with extra time they can provide a unit that will be an excellent match. With the number of increasing transfusions and antibodies that incur, at least for me, an extra day is needed for the donated unit to be tested as compatible.

    Thanks for your W&W update and best wishes, Ric

  • Bergit Kuhle said:

    Hi Dinah,

    Michael surely is one of the luckiest and happiest man in the world to have you on his side as a caregiver . You are a caregiver in the best sense of the word. But never forget to look after yourself. Both of you will need that to be able to go through all the challenge. On transfusions Michael will feel better, the disadvantage is that once you have started with transfusion therapy, you will become dependent on it.

    Transfusion therapy is still considered as w&w-approach, a supportive measure without drugs. Good luck!

  • Dinah (author) said:

    Hi Bergit,

    Thank you for reading my column and for your supportive words. Michael did feel a little better after his transfusions, so now we are waiting to see how long this will last. More waiting! But it’s ok. Dinah

  • Dinah (author) said:

    Dear Ric, thank you for your interesting comments regarding transfusions. We had not thought about your suggestions to keep our own record of donor units, but will look into doing this in the future. I’m not sure how much information is available here in Australia but will start recording whatever information I can. Regards, Dinah.

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