The latest news (part 2)

[Angelicspirit]

Dear Friends,

I cannot believe that I’m writing this but after so many setbacks we have shared with you, Margaret’s lack of treatment is continuing and as each day passes we have no alternative other than to believe her care for severe osteoporosis has also stopped.

Firstly however, an apology from me because having revisited our last post which was 3 months ago, I have found replies from at least 4 of you, which we haven’t acknowledged. Strangely at about that time, we had a couple of replies to very historic posts. Margaret and I were oblivious of your very kind and supportive posts. My sincere apologies to Fruitandnutcase, wellness1, 56jennywren and MayGodBlessYou.

When we share with you our latest news you will see that your loving posts are even more relevant today.

You may recall that Margaret was waiting to have two molars extracted. These teeth were considered to be a complication to having Zoledronic Acid and in fact we’re not causing her any pain or problems. The consultant who had been assisting Margaret and emphasising the importance of having the acid, arranged for her to have a test dose of one eighth of the normal dose followed by a gap of a few days before having the full dose.

We went to the infusion clinic on June 6th. Clearly the consultant had fully briefed and prepared the staff for the possibility of Margaret having a severe allergic reaction to the acid. We were both very impressed and reassured by the preparations made and the care and attention to detail that the senior nurse was showing. When Margaret showed the senior nurse her ‘passport’ issued by The Steven’s Johnson Syndrome charity, she delayed the infusion a little longer until she had read her history of drug reactions. Margaret was given one eighth of the normal dose of ZA over 30 minutes. Twenty minutes into the infusion, Margaret found it necessary to use her GTN spray because of multiple arrhythmias which were stronger than usual. The staff went to her consultant for advice and he came into the unit to meet us for the first time. By this time the arrhythmias had settled. The consultant checked with the unit’s pharmacist and arrangements were made for Margaret to have the full dose of ZA on the 11th June over the course of 2 hours.

After checking Margaret’s observations we went home with an epipen in the glove box just in case of a delayed reaction. That night Margaret woke up fighting for air as her throat was closing ( she has a history of Laryngospasm) She also had very strong chest pain, severe neck pain with difficulty in turning her head that gave her electric shock like burning, Her knees, especially the left one, were swelling. All this was accompanied with a bad headache. Having been told that some people experience strong side effects, Margaret also felt that she was experiencing a flare up of her autoimmune conditions.

We returned to the infusion unit on Tuesday 11th and again we were met with kindness and professionalism. Margaret described what she had experienced over the weekend and reported that the side effects were improving. The senior nurse took notes and went and spoke to the pharmacist and a doctor in Rheumatology. When she returned, Margaret was told that the pharmacist and the doctor would not prescribe any more ZA and that we were to go home and await a ‘phone call from Margaret’s consultant. That will be 3 weeks ago on Tuesday. We have heard nothing.

Again. after politely waiting a few days, we started leaving messages on the hospital portal. One message has been acknowledged ( by a nurse receiving it) and we’ve had no reply to the second. It’s starting to repeat itself. Margaret has gone from ‘This is urgent ! to zero’

What is particularly upsetting, is that Margaret has had no opportunity to ask questions. We were told that ZA was the only medicine left available to her, so we can only conclude that her treatment is over. The test dose was clearly worth its weight in gold. We can only guess at what a dose of 8 times bigger would have done to her but to not have a discussion about her future with anyone is very upsetting and we are left yet again, feeling confused and as if nobody cares if you can’t comply with the usual conveyor belt of medicine.'

I find it very upsetting to witness Margaret yet again being ignored. Clearly if by the end of this week there has been no communication we will start shouting. We are not by nature shouters but there is a limit and to not just receive a short phone call even to make a future appointment, is inexcusable.

Thank you dear friends for reading this.

Steve & Margaret

[Sunseaandsand]

Good morning Steve & Margaret,

You have my full sympathy of the situation Margaret and yourself have found yourselves to be in ( once again)

Unfortunately for people like ourselves who do not fit into the normal way of things we are left between a rock and a hard place.

Since my last posts I have now gone on to having many more fractures in the spine and also the rib.

Four of the fractures have been re fractures one of which has fractured 3 times.

I will not go into the pain and distress these have brought with them but what I will say is that after being discharged from the clinic ( because I was unwilling to have treatments that had already caused severe side effects some of which had resulted in many other departments being involved in my care to say the least.)

My go referred me back in January as an urgent referral.I had to wait until March for a telephone appointment which was very short and the consultation felt very sorry after seeing how much my spine had deteriorated under their care so requested a face to face appointment, we expected this to be urgent but had to wait a further 2 months to be seen.

At the consultation we discussed the possibility of trying a lower dose of ZA infusion and he would get the specialist nurse to contact me.

I had to chase up to find out when I would get the call from the specialist nurse and was told it was down for September but the appointments could not be made that far in advance.

I said this could not be right and while on the phone she made lots of Oh’s and Ah’s and told me she needed to speak to the consultant.

A week later I was given an appointment to have a call with the nurse at the end of July!!!

( This is just to have a Chat) 😫

This as you will both well understand is STRESS we can do without.

I have tried to think what I would do in your situation and the first thing I would do is contact the consultants secretary asking for an e mail address which you can send your concerns to be forwarded to the consultant to read.

The following things I am going to say please understand I don’t say lightly.

Myself I have to feel I am going to keep trying everything I can despite the stress and anxiety and unknown. I do this because I have to have hope that something no matter how small will help me.

From what you say although Margaret only had a very small dose of ZA she did not react well to it but on the positive side she has not had any long lasting effects from it.

She will no matter how small the dose reap some benefits from the dose she has had.

Perhaps you and Margaret could have your own heart to ❤️ and discuss the possibility of asking for the ZA to be given in those small doses.

Maybe something worth thinking about and certainly a way around it.

Take care both of you and I sincerely hope you can find a good way forward. Xx

[Angelicspirit in reply to Sunseaandsand]

Dear Sunseaandsand,

Thank you so much for your message, which I can assure you, has lifted Margaret’s spirits, particularly as you speak the same language. It’s incredibly helpful when someone such as yourself is using the same vocabulary because of a common bond.

Your suggestion about future dosage of ZA, is just as you kindly pointed out is one we should be having. When we returned home from the infusion unit we were naturally searching for answers and future possibilities and had that exact conversation particularly as Margaret wasn’t given any opportunity to give her unique account of what had happened and the relevance to her other conditions. For example, she has experienced her throat closing and strong angina type chest pain on several occasions before. She knows through her experiences what to do and when to call for help. Chest pain and arrhythmia are now an everyday occurrence due to INOCA, but we need to discuss this with her consultant so that we can explore the possibilities for her future care. There may not be anything left in the medicine box but all we have to go on is three weeks of silence.

We are so sad to hear of your ongoing fractures and I know that Margaret has a very good idea at least, of what you are dealing with daily. We send our warmest wishes to you and pray that when you do eventually get to speak to and hopefully see someone soon that there can be something to lighten your load.

Thank you for taking the time and trouble to help us.

Steve & Margaret xx🙏🏻👼🏻

[Sunseaandsand in reply to Angelicspirit]

Dear Steve&Margaret,

Thank you for your reply and the warm wishes and kindness you have sent with it🙏

I do hope Margaret is able to have an appointment of some kind quickly to be able to put over her needs and have answers to the questions I know you will both want to ask.

It really is a strain on tired minds and bodies to have to make so many phone calls and in doing so having to keep repeating ourselves to everyone we get passed around to.

You have full sympathy of myself and my husband who like yourselves feel drained and worn down by it all.

It seems never ending😒

Our thoughts are with you both and hope you can share some good news in your next post.🌹x

[Fruitandnutcase]

Dear Steve and Margaret, I am so sorry to hear the predicament that you are in. If it turns out they are scratching their heads and haven’t got a clue of what they can do next to help Margaret then they at least ought to have the decency to tell you that face to face.

It is hard to believe that they feel it is in order just to more or less ignore you.

I think Sunseaandsand has a point when she says to contact your consultants secretary for an email address where you will be able to get a response. You could copy in PALS for your hospital at the same time, the people involved may be more like.y to respond if they realise other people are monitoring your correspondence.

If it wasn’t for the fact I don’t see why you should pay to see the consultant I would book an appointment with him at one of his private clinics where he would not be able to avoid you and turn up with your list of questions which hopefully he would have to answer.

Thinking of you both, I often wonder how you are both getting on, I do wish you could get some relief soon. Not to mention answers and a bit of compassion shown by your medical team.

Very best wishes, to you both 💐

[wellness1]

Dear Margaret and Steve,

I'm very sorry to hear all you've been through. I'm glad you've had some empathy and advice from @Sunseandsand. None of you should have to jump through all these hoops. It's enough to manage illness/injury and treatment, without having to chase answers and information. How frustrating it must be.

One bright spot is hearing about the kindness and professionalism of the staff at the infusion centre and the wisdom of trying the 1/8 dose. I'm sorry it didn't go better and you are now left hanging. I hope you are contacted soon and get answers to your questions.