HI to Theresa,Piglet and Billiegirl,and anyone else looking in.
I have been on treatment for over a month now and things are not looking good so far,at the weekend I collapsed and had to be taken by ambulance to hospital,they think it was a combination of low blood pressure with a severe migraine,and electrolyte imbalance.it really scared me because I couldn’t focus my eyes,walk,balance,my speech was slurred and I was vomiting.In fact I couldn’t even hold my head off the couch to vomit,let alone sit up .
in A and E they couldn’t hear my blood pressure because my pulse was so faint.
I hope no one minds I am writing this like my personal blog.I had some good days when I had been taking the medication for about a week but then my condition worsened again even though I am on medication.my next appointment is next week ,hoping they can find some new medication that might help
Hi,
I’m sorry to hear that you are still struggling - I hope your recent migraine and low blood pressure and electrolyte imbalance were an unfortunate one off, and in future they will not all occur together to cause you such problems. The chemo has obviously affected us differently. I had a heart attack (but I must have felt so rough during the chemo, that I didn’t know), and this has damaged my heart. Now I am on beta blockers and ACE inhibitors etc. I only get slightly breathless - and I do not have much fluid retention. I only take one furosemide a day and this seems to keep me OK - feet and legs have gone down, although I do wonder if there is some in my body as my stomach seems to gurgle a lot (LOL). I presume that you feel sick etc., as you have so much fluid - does it press on your stomach etc. and cause the nausea etc?
Good luck with your appointment next week - I’ll be thinking of you and hoping that they can sort out your meds so that you feel better.
Kind regards,
Piglet X
Just sending you both lots of love and hugs.
Clare X
thanks Clare for your support .I have started digoxin today,seems to reduce the breathlessness and no bad side effects so far .catching up on my sleep
I hope the new meds really help - you had such an awful time last week…
{{{hugs}}}
Theresa x
thanks theresa,I was prescribed only one digoxin a day so now I take it at night and can sleep well ,feel so much better
Hi,
I’m pleased to hear that you have been prescribed something to help with your problems - if your sleep is very disturbed then everything else is so much harder to cope with. Although I am not on digoxin, so I can’t directly compare (I have beta blockers and ace inhibitors), please keep in touch with your progress.
Hope you are having a good day - it is beautiful sunshine here which always makes me feel better.
Kind regards,
Piglet
I’m managing to sleep most nights now which is wonderful,I feel totally different when rested
next hurdle is mon app for echo results,and how much treatment I can persuade them to give me.as long as I don’t have to walk or talk I look quite healthy so I don’t want them to fob me off with
oh you look fine,just continue the meds
I feel quite young to have such serious heart problems and think I am worth keeping alive even if it takes a lot to manage that .I’m praying I will be able to at least make an appointment to see a consultant ,it might take a miracle
looking lovely, you’re certainly worth keeping alive! so sending you hugs & good luck wishes jkx
Hi looking lovely,
I’m glad to hear that you are now managing to sleep better. As well as having a heart echo (which showed that the left pumping chamber was struggling), I also had myoview scans - one normal, and then one after I had been on a treadmill to show how my heart was after exercise (that was really hard!!).
I am sure they will try to get you moving again, so keep positive and hopefully the echo will show exactly how your heart is pumping so they can adjust (or add to) your meds to get a better result.
I will keep my fingers crossed for you on Monday - please let us know how you get on.
Kind regards,
Piglet
Hi there I am so happy my appointment went well ,I saw a cardiologist who spent a lot of time with me,explaining about possible treatments
He said we need to stabilize my condition before doing an MRI as I can’t lie flat now.He also insisted I use a wheelchair to go around the hospital which I am glad I did because I had to go all over the place,my eldest son(20yrs) came along to push my wheelchair.
the echo showed I think the same result as before,Ejection fraction less than 25%.if anything I think it may be worse,but below 25% they don’t measure any more.the chest x ray gave me a shock,the left side of the heart is taking up almost all of the left lung base,no wonder I am breathless.
one thing I am very grateful for is a friend who is a doctor suggested an oxygen concentrator machine for home.it takes air in ,gets rid of the other gases and gives you the oxygen through a nose tube.
I have used it for two nights now and slept the whole night,what a relief.the cardiologist started me on new meds,I am going to look them up now
Hi Looking lovely,
i’m pleased you’re beginning to make some progress in terms of treatment options. i want you to know i follow your small thread and continue to wish the very best outcome for you. Good you’re getting a sleep now too.
Lynn x.
Hi Looking lovely,
I’m glad your appointment went well, and that your cardiologist has put you on more meds (which ones has he prescribed?). Hopefully these will help you feel better. Very handy to have a doctor friend - the oxygen sounds a good idea whilst you are struggling to get comfortable while you sleep. I haven’t had an MRI, but when you are well enough it does sound like a good idea - isn’t it strange how treatments and tests are different at every hospital?
Kind regards,
Piglet
Hi Looking lovley
I was diagnosed with severe heart faliure 5 years ago, approx 1 year after finishing chemo, it took several weeks of feeling breathless, being tired all the time, and having no energy before I was correctly diagnosed with chemo induced dialated cardiomyopathy. I was very frightened about the outcome,after all I had been through! they were now telling me that I had another life threatening illness. With treatment my condition has improved and I can do most things, but I have to take my time, with frequent rests. It took about 6 months to get my medication levels correct I take Ramipril, cavidelol, frusimide,aldactone and warfarin some once a day some twice, I also have 6 monthly checks with my cardiologist. I thought the outlook was very bleak but in fact I was totally wrong, I’m still here and enjoying life and hope to be around for a lot longer. Good luck with your treatment and bon courage
Lizziegomme now living in France
HI Lizzigomme,and Piglet,
I too thought the prognosis was bound to be poor,because of what I had heard about drug induced cardiomyopathy,and partly because the symptoms were so severe,I couldn’t imagine surviving long in this condition.
I am now on frusemide,spironolactone,vasteral,
isosorbide dinitrate,digoxin and valsartan
they are starting to help,as well as the oxygen concentrator I use,and I can start to do some housework and cooking now for the first time in weeks.
I don’t drive any more because I think it is too risky,so I am just resting most of the time at home.
thanks for your encouragement i am starting to feel hopeful again .I am thankful that my two eldest sons haven’t left home yet and are able to help with driving etc so the household can keep going with less input from me .
about the mri,I don’t feel enthusiastic as I think I would feel claustrophobic,anyway will deal with that later,maybe my treatment and tests are different because i am living in Malaysia,and I don’t think my local hospital has treated many people with this particular type of heart damage.