Ann - Interview 35
Age at interview: 69
Age at diagnosis: 62
Brief Outline: Diagnosed in 2001. Ann has had side effects from several of the osteoporosis treatments; problems with swallowing, heartburn and pain. She is currently on Bonviva (ibandronate) once monthly orally, but she is changing to the intravenous injection form administered every three months. She was also diagnosed with coeliac disease.
Background: Retired nurse, married with two adult children. She is an active member of both the osteoporosis and coeliac disease support groups and says that she is having a 'very busy retirement'.
More about me...
The first thing Ann became aware of was that she was losing height. She noticed this because her summer skirts were longer than the previous year. At the time, she worked as a nurse in a busy practice and used to have backaches that she put on to too much work. She told her GP about her symptoms and asked to be investigated for osteoporosis.
The results of her first DXA scan ‘horrified’ her because it showed that she had a very high bone deficit. Ann says that it was something like seventy per cent of what it ought to be. Her GP started her on Fosamax once weekly but after about six months on it she started experiencing worrying side effects. Her biggest problem was swallowing and to a lesser degree heartburn. Fosamax was discontinued for about three months and the endoscopy exam revealed that there was no oesophageal harm done. Her treatment was changed to Actonel daily but within days she was experiencing very bad pain in her hips and couldn’t walk. Her GP took her off bisphosphonates and she waited until Actonel monthly became available. She felt really well on this treatment and for about two years experienced no side effects but then she started having heartburn and swallowing problems again. Her GP referred her to the consultant who changed her medication to oral Bonviva. She stayed on that for over a year but against the side effects recurred. The specialist then suggested she try the infusion form once every three months. At the time of the interview Ann was waiting to go to her first infusion session. She says she has been given all the information she needs about it.
Since in the care of the consultant she has had yearly DXA scans and her last one revealed that her bone mass density has gone up significantly.
Following her diagnosis Ann join the local support group and became an active member. Apart from giving talks about her experience she has also being involved in fund raising activities and is the contact person in her area for newly diagnosed people.
Ann has lost four and a half inches in height due to four vertebrae discs which have crushed. Losing height, she says ‘really bugs me’ in particular how it has altered her body shape. Finding clothes that fit comfortable and look nice requires more effort and creativity. Losing height has changed her spatial attitude as well and when she walks, rather than looking ahead she tends to look down at the ground because she is afraid of falling. Ann says that these are the kind of issues that can be discussed with other ladies at her support group.
Ann has also being diagnosed with coeliac disease and had to learn to cook and eat without gluten. She says that Coeliac UK provides comprehensive advice and information. Ann is a member of the local support group. In fact, she says that her retirement years have been ‘very busy’. Her attitude is to get on with things and to try to help others.
Possible risks factors. Her mother had a dowager hump and was in significant amount of pain but she was never diagnosed with osteoporosis and Ann wonders whether or not she had it. Ann had an early menopause at the age of forty-two or forty-five. Coeliac disease can be another risk factor but it was diagnosed after her diagnosis of osteoporosis.
Ann keeps herself very active and on a nice day she would go for a three miles walk and on a rainy day she goes up and down the stairs in her home and garden and makes sure she does about two miles of walking without leaving her house! She also swims once a week. She makes sure she and her husband have a healthy diet with plenty of calcium in it.
Anns local support group raised money to donate a DXA scanner and computer to their hospital, so...
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I’ve had quite a few. The initial one was at [hospital] then it turned it transpired that the machine they use at [hospital] as far as the results were concerned, wasn’t compatible with the machine they use at [hospital] and [hospital] so there was nothing to compare.
So the comparison didn’t really begin properly until I had scans at [hospital]. But now I have regular ones at [hospital] and I can keep a proper record, you know, I keep it in my diary, the results of each DXA scan.
Because when I said initially there was a three year waiting list. The waiting list now is non-existent because the [city] and District Support Group with fund raising events paid for the DXA scan that’s currently in use at [hospital]. And the computer which prints out the results in a format that GPs can understand so you know, but yes as a nurse, yes I have a personal interest.
What do you mean in a form the GP can understand?
Well, when the results were available initially. The GPs didn’t realise that the plus or minus of the As, the Zs the T scores and the Z scores they couldn’t interpret it and the patient was told, “Yes, you have osteoporosis.” Or, “No, you don’t have osteoporosis.” With no idea of the levels, you know, the spine and the hips. No idea whatsoever of how severe this osteoporosis had become. Well, now there is absolutely no excuse for GP’s not knowing how to interpret the results, you know. There’s no excuse now because, as I said, we bought the computer for these results to be made available.
When taking Fosamax, Ann had severe heartburn and problems swallowing so she changed to Bonviva....
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I was started straight away on Fosamax. Accepted that because I had since read up and found out that Fosamax was the treatment of choice. And after about six months the problems really started causing me a lot of worry. This is pre-coeliac, okay. Breakfast toast, I couldn’t swallow the crusts. I was having to crusts off my lunchtime sandwiches. I couldn’t swallow a slice of crispy apple. I always keep my apples in the fridge. I like them nice and crispy, you know, and I couldn’t swallow. I heartburn to a lesser degree but the biggest problem was swallowing. So I trotted back off to my GP.
So my GP sort of took over my osteroporotic care if you like. So we discontinued the Fosamax. I think I was off it for about three months at his request and then I had an endoscopy to make sure there was no oesophageal harm had been done, you know. That was okay.
There was nothing abnormal discovered NAD as they say. I was then, I was still cautious for a little while with what I was eating still cutting up apple into slices and I still do. But yes it I was relieved to find there was no oesophageal damage. And as I said, I’m convinced now there is no oesophageal damage because I have had two endoscopies. And nothing has been found and I am very pleased about that as you can imagine. Because I’m well aware of consequences of oesophageal damage being not being, you know, being unaware of oesophageal damage. The things that can occur, you know.
Did you have any problems before you started this medication? Swallowing did you?
I was on oral Bonviva once a month for a year, yeah just over a year where again February this year I commented that I was again starting heartburn and difficulty in swallowing. So my DXA scan had gone up beautifully on Bonviva for one year. My spine had gone up point six [ringing sound] and my hips had gone up point two. I was so joyous I practically skipped out of the clinic.
But then Doctor [name] suggested that because because Bonviva had been so successful that we ought to pursue the infusion because of the heartburn. Now Thursday of this week I start the first Bonviva infusion.
Ibandronate, yeah ibandronate.
Anns doctor advised her that going up and down her stairs at home several times a day was good...
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We had four very steep steps to the kitchen door, a turn and four again, steep steps narrow steep steps. So bearing in mind my husband and I are getting older we decided to remove those steps completely. We now have a wider landing outside the kitchen door and we have four shallow, four wider steps but shallower, a bigger turn and eight, sorry we have six, a turn and eight wider this way but shallower steps. That has proved it’s worth. It’s worth every penny we paid for that. I’m now going down the steps and coming back up the steps in confidence, you know. And I can run up and down those steps like nobody’s business now and it’s doing my hips the power of good because I’m several times a day I’m doing fourteen steps umpteen times a day which is good for my hips, my bone density on my hip joints, you know. Because Doctor [name] says that like in inclement weather, and I always advise this when I do talks on osteoporosis, that rather than going out in very slushy rainy weather if you have a normal set of thirteen stairs, an ordinary staircase, if you do that twelve times in a period of twenty four hours you’ve walked two and a half miles. And I keep this in mind when I’m doing the back steps and the normal staircase, you know. I’m doing my hip joints the power of good every single day. And I enjoy doing that. I look upon that as not a chore that I have to do but something that I enjoy doing and it’s working well. It’s doing my hip joints the power of good. You know.
Ann believes her local group can do a lot for women who havent yet been diagnosed.
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Does it help talking to other ladies who has who have osteoporosis?
Oh yes. I mean our the support group that we have for the last two years we’ve held five meetings in and around [city]. This year we haven’t because we’ve had problems with the various venues. Next year we will be holding again five meetings, please God.
But yes, talking to the, the ladies and the gentlemen who attend the meetings, the ladies who attend chat to other ladies and discover that they’re not alone with their problems, you know. Other, other patients other ladies have the same problems and together they can work out a solution and are happy to speak to somebody else because they realise they’re not alone. And the, the group itself its worth it’s worth it’s worth all the effort we put into organising the meetings for that reason alone.
I was first diagnosed in the July. Yeah, I knew there was I knew about the osteoporosis society because I used to have the journals as a practice nurse. Then when I had this diagnosis I rang Camerton the Osteoporosis Society headquarters, and asked was there a support group in or around [city]. And I was told, yes there was one in [city] which was going through the doldrums but was hoping to regenerate itself and there was one in the [district] area. Well, I latched onto the [city] one because I knew exactly where it was meeting. That was the only thing I knew about it at that time. An introduction was made, I presented myself at the door of this delightful lady who hosts the committee meetings and they haven’t let me go since [laughs]. You know, and I’m a contact person, it’s taken over my retirement almost and it’s worth it because so many people are being helped.
So you’re an active member?
Yes, too active according to my husband but then I quote him his work with the model engineering club in [city] you know, touché. Yes, I am an active member and I would like to continue being an active member because I feel that there’s there are a lot of ladies out there who haven’t yet been diagnosed. And I would like to think, this is not meant to sound big headed, oh God please don’t let this sound conceited or anything, but the [city] group we can do a lot more for a lot of ladies who haven’t yet been diagnosed. You know, and I think we need to keep ourselves active for that reason.
But had I realised how involved I was going to become [laughs] maybe I, [laughs] maybe I wouldn’t have put my foot over the committee room door. But things have certainly taken off in my retirement.
Ann is much more aware of the ground she is walking on because she is frightened of falling.
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It’s just be aware of my spacial attitude, you know. I used to walk with my head up. Now I have to keep an eye on uneven ground in case I trip. In fact I fell in [supermarket’s] a month ago up in [city]. I was up with my son and there was some what looked like crushed apricot on the floor and I went down and I’ve still got bruised knees and we are complaining about it to [supermarket] because the treatment I received was minus abysmal, you know. And there are on-going letters about that because I don’t want other people to be treated in that cavalier fashion that I was treated, you know.
But no I’m very, very conscious as I said of I won’t go out in I won’t walk on frosted ground because I am afraid of falling. I will tramp across a field, in fact, up on the canal if the tow path is frosted I, I don’t gamble along like I used to because the surface underneath the frost is uneven, you know. So hard surface walking I’m fine but I am more conscious now than ever of the ground that I am walking on, you know. My eyes are down to the ground rather than my head up in the air because I yes, I am afraid of falling. Which I shouldn’t be really, you know.
Anns feels irritated that her body shape has changed because she had always looked after her...
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Well, as a result of the four discs slowly collapsing I haven’t had a waist line for about two and a half years so all my skirts, with the exception of two tailored skirts, all my casual skirts now are elasticated waists. And I’ve always enjoyed using a needle so as I said, apart from two expensive tailored skirts, all my skirts are elasticated waists. I’ve altered all of them. This pair of trousers I bought these with a zip and a waist band and I wear these to death but all, all my garments with waist are now elasicated.
I do it because I think, “Right. I’m not going to going round looking like a sack of spuds.” But that I find extremely irritating that it’s had so much effect not my body weight, but my body shape, you know. I’ve never had a pot at all. I had a very strict gym mistress in my secondary school and had a very strict anatomy teacher through my orthopaedic nursing and I was always proud of the fact that I never had a pot. But since my waist line has gone I have to be I have to remind myself, you know, to sit up straight and relax while I am sitting up straight with my back well supported. This chair is extremely comfortable. It’s supporting me right where I need it, you know. But that I find very, very irritating, the fact that my body shape has altered.
So you are conscious of your body shape?
I am conscious of my body shape, yes. From the front it doesn’t look any different, you know, but from the back, yes. Apart from the fact that I have one leg longer than the other because of the Scoliosis now I am conscious of my body shape. I’m not looking for an hour glass figure, please, you know, I’m seventy next birthday for God’s sake [laughs]. You know, but I am conscious of the fact that I don’t want to be seen as to be stooping and things, you know. I just don’t want to end up like that.
Have you talked to your doctor about it to the consultant?
I haven’t, no. I haven’t but I have spoken to nursing colleagues and girls on the support committee. I’ve spoken to other osteoporotic ladies about it but I haven’t spoken to anybody in the medical profession.
Carry out good back care and invest in comfortable footwear.
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Well, based on my own experience no two patients are alike and no two patients have the same problems. And I’ve got four discs crushed, lack of loss of height. Somebody may only have one disc but they need to be aware that the disc below and disc above could become crushed and they need to carry out good back care, you know, and that is important. Bending, stretching is important. The other thing that is so important is if you need to turn you don’t twist your spine, you turn your body. You stand and you turn your feet, you turn your body not turn your spine to look at Mrs Jones behind you. Had some funny looks when I’ve done that but that’s what’s right for me and individuals will learn. Sometimes they learn to their cost but they certainly learn what is right for them and they must be aware of their limitations.
On a personal level all your stiletto heels need to go to the charity shop [laughs]. Comfortable footwear a good pair of shoes when you’re walking, you know. That is important. Supportive lace up shoes or even Velcro shoes but I understand they’re not as supportive as lace ups. I’ve not worn any Velcro shoes yet I my leather lace ups both pairs are still in good condition. I’d like them to stay a little bit longer like that because they’re good shoes. But no seriously it’s, it’s all the it’s mundane things like that. It’s no good trying to totter around on stilettos heels. You will do far, far more damage. You know, my evening shoes have a sensible heel but they’re still very smart sandals and patent shoes. Smart shoes with a heel that I feel comfortable in and confident in wearing. Things like that. Mundane things. Ordinary everyday things that previously you would have taken for granted you, you have to think about. And yeah, it becomes a habit. You do think about it, you know.