[gina45Participant]

Not a good day today,mum isnt well and is so breathless its frightening. The consultant she now has is lovely , he said that her bloods have dropped a little again.he said that on monday if she goes and her bloods have dropped again she will either have to take a break from velcade or have a lower dosage. Mums blood pressure is low 86 over 54 and the consultant has asked us to speak to our gp and ask why she is on blood pressure tablets,her blood pressure has been low both times she has been.
She is on anti sickness drugs and water tablets? also anti inflammitories and reflux tablets, thats besides all the drugs she is taking already. Mum said she will be rattling soon(that little bit of humour still there). We are just worried about her heart and hoping it isnt failing. But i will be on the phone to my gp tomorrow to see what they say.
Well im finishing having a whinge again sorry just concerned, hopefully things will get better
Gina xx

[MinParticipant]

Dear Gina,
I am sorry I am not familiar with you Mums problems and hope she can begin to feel well soon. She obviously has many health concerns and it goes without saying that you must be worried about her.
This weather hot and humid is not good for anyone with a heart problem, and the sooner it cools down a little the better for those who are struggling for breath.
Has the Dr ruled out DVTs as a cause of her breathlessness? MOre importantly does the Dr Know she is breathless ? Does she take a blood thinner or asprin?
Does she have a temperature?
Anti inflamitories are an absolute no no for my husband due to his poor kidney function. and the information that she is on water tablets lets me [u]imagine[/u] she has some kind of kidney disfunction. Speak to your mums Doctor and find out what she is on all her medication for so you can let the consultant know.
Only a Dr can understand what is causing her breathlessnes and people like me cannot offer advise other than to get expert help for it.
If you are afraid call out her Dr or the emergency Dr or call the hospital helpline she must have for emergencies from the clinic she attends. One or all of them can give you the advice you need. Please dont delay until the morning its only a phone call for advise and they will put your mind at rest. She may have developed a chest infection that was previously undetected.
Regards
Min

[gina45Participant]

Hi min, the consultant knows about it but im not sure where it all stands with the gp. I will speak to the doctor tomorrow and on monday let the consultant know. Hopefully we will have more answers then.
Thank you again for your advice it is most appreciated x

[eveParticipant]

Hi Gina
Your mum has been here before,something is not right!!! anti inflamitories i always thought was a no no,don,t quote me ask the nurse.I think you remember what Slim went through,and it started with blood pressure going low,Please get in touch with the hospital.If her gp prescribed blood pressure tablets the hospital do not like to undermind gp.
Wish I could be more help,remember a few months back,your mum ended up in hospital,Gina if only for your peace of mind ring the hospital,it does not matter if it,s a false alarm,get advice.
best Wishers Eve

[gina45Participant]

Hi eve, yes my mum spent a week in hospital and she had a water infection which turned into a blood infection, she had her bloods checked today and they are a bit lower. she is breathless(her words that walking up the stairs feels like she has walked mt everest) she has lost lots of weight. the consultant said that the antin inflammitories and reflux tablets were something to do with the velcade,im not sure. I will have to ask. The consultant did say any problems take her to gp or hospital But our main concern is the blood pressure tablets.our gps was shut today so i cant speak to them till morning. But will be doing that as soon as they open. Thank you for your advice it is most appreciated. I hope we can get it sorted x

[GillParticipant]

Hi Gina

My mm husband (Stephen) had terrible breathlessness for a while. They did check it out but were not unduly worried as it seemed to be par for the course. It has now passed and he is not gasping for breath at all. I wonder (no medical knowledge what so ever) if it is the cocktail of drugs that spark it off.

Stephen's drugs have been altered frequently since his second SCT

Hope all goes well for your mum Gillxx

[gina45Participant]

Hi Gill, hopefully mum will start to feel better soon, it is only her 2nd day of velcade so early days. She has that many drugs that she is rattling. The gp said to half her blood pressure tablet and if blood pressure stays low then to ring him back. He said that the reason he is keeping her on them is it protects her against heart disease and stroke etc. So we will see.
On the positive side mum says she feels a little better today so fingers crossed.
Thank you for your reply it is much appreciated.
Gina xx

[jillsParticipant]

Hi Gina,

Not sure what you have discovered on the blood pressure tablets but just to say that my Mum had been on blood pressure tablets for years when she was first diagnosed with MM. She stopped them when she first started CTD and hasn't taken them since (four years now) and everytime I ask them to check her blood pressure it is completely normal. So I wonder whether she really needed them at all!
Having said all that I do think there are problems with liaison between the specialists and the GPs – Mum was on a range of tablets before MM, she stopped them when having CTD and no one has ever reviewed that original list and said she should restart them but she doesn't seem to miss them healthwise…
Like Eve I thought people with MM should avoid anti inflammatories so probably worth double checking that – there are lots of other painkillers.
Let us know how she is getting on,

Jillxx

[gina45Participant]

Hi Jill,
We spoke to the gp about them and he asked us to half the dose,when mum went to hospital on monday her blood pressure was ok so you may be right. The good news as they told is her protiens have gone down from 107 to 97 so the velcade is working.
The bad news is that mum only had 2 days treatment but when we went on monday they said she would have to take a break as her kidney function had risen from 150 to 157(not to sure how all that works) they said they cant let it go higher, they are also worried that her heart isnt as strong as they thought she was borderline on the ecg and echo(again not sure ) So we are to go back on monday and they will do bloods again to see if she can have more treatment.If not im not sure either lower dose or other options,so we will have to see.
Had a cry on monday as mum looks frail and ill but back to being positive now and keeping our fingers crossed everything goes well.
Thank you all again for your advice and support it is most appreciated at this very trying time
Gina xx

[brochoParticipant]

Hi Gina sorry to hear your mum is still poorly but its amazing sometimes the difference a few days can make Paraproteins are coming down nicely and this should continue even if they halve the Velcade. I too thought anti-inflammatories were not good for us. Good luck and hope your mum feels better this week love Bridget x

[gina45Participant]

We now know what the breathlessness is,mum has fluid on one of her lungs.she is in hospital on the mau, they are doing an injection to get a sample of the fluid to see what it is and also an ultrasound of her chest. So its now a waiting game again.
Thank you for your support it is most appreciated
Gina xx

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