Between the Devil ( the red one) and the deep blue sea
Comments
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OMG, Chrissy. You better have them with your coffee or for sure you would break off a tooth on them after all this time. So how long did they take? A month or was it more?
I am up because it is very difficult for me to sleep....I cough, cough, cough or it just feels downright uncomfortable if I am not sitting straight up. Today I see the onco and I am hoping hoping that he will try to get me in to see a heart failure physician before a week from Thurs as I really don't think I could stand going on like this for more than another entire week. I am supposed to also call that cardio nurse PA I saw and tell her how much weight I lost taking the other water pill she put me on.....Ha, that's a joke. I think I was up 3 lbs when I went to bed last night and for sure I am not peeing. I had an entire pot of tea at dinner, a big glass of water and didn't even have to go. Where is it going? is my question.
I just feel miserable in general and cannot stand this wheezy breathing and feeling of pressure in my chest. But then again, we all know that I have had it very lucky so far so am just not really used to feeling bad so this is sort of new experience for me.....one I hope can be corrected soon.
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Oh my lord Marybe! Girl I'd be pushing real hard to get to see that doc sooner rather than later. I'm so sorry that you are feeling so bad. May be its time to seriously think about stopping work. I really don't know how you have done it for so long. At least if you stopped you would have a chance to rest more.
Love you girl you know that and if possible I just want to see you around for a whole lot longer yet. Please take care.
Love n hugs. Chrissy0 -
Maybe I am sorry you are coughing so much. if we understood how water retention worked it might help us all deal with It better. Hugs ginger
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Thinking of you, Marybe.
Tell the onco that you HAVE TO see the cardio dr. this week. Tell him you aren't leaving until it is set up!
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Marybe - if you are drinking that much fluid and gaining weight then the diruetic is NOT WORKING - it is why you are feeling so miserable - please call your onc or PCP and get in to see that cardio ASAP (NOT next week) - as for working - really girl it is time to take a little leave and get some rest your body is working too hard right now - remember the plan is to get you to Europe! Honestly Marybe I think you might want to go to emerg if you can't get any other action today.
Love, S.
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Oh Marybe you've had a rough go of things lately. I think of you often and hope that you can get feeling better before too long. REST REST REST. We are all looking forward to you going on your trip in October.
Hugs and best wishes for you.
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I hope the diuretic started working, but if not, if you're not urinating, please listen to the ladies and call your cardiologist ASAP. That's what happens in CHF - lungs, kidneys and heart all work together - hopefully going back on the lasix will take care of it, but you should be seen - by a doctor, not some PA. And, it must be today - they need to adjust your medications.
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Marybe, Congestive Heart Failure took my Grandma. I can't help but think that if she had better coordinated care and medication adjustments I would have had her in my life longer. It just isn't something to mess around with. Not that you are messing around with it, but the Docs are being a bit casual about getting you in to see them. I don't expect that I will ever go to Europe and I am counting on living vicariously through your travelogue.
Hugs Ginger
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OK, Marybe, here's another vote - bug the docs and get in immediately!
Hope you're feeling better soon.
(and peeing...)
Leah
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Marybe if your Dr's won't see you today go to the ER, please.
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Marybe... You need to be monitored very closely by the cardiologist until the dust settles. Keeping you close in my thoughts and prayers....
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Saw my onco and also talked the to Cardic PA I saw Friday....I really need a secretary I was supposed to be taking the lasix WITH this new water pill....The spirolactone or whatever it is called. I thought I was off the lasix. So this AM I did that and she said to take it and just stay put, be in on the couch , in bed or in a chair with my feet elevated, but not to be getting up to get my glasses or a book or to answer the phone, just get up to pee. Something about the blood flow to your feet. Well, I only had to pee once. So I then went to see my onco and they were a little concerned that my BP is so low 80/60 and I said oh that is normal on the coreg. Both Dr.Cody and his PA there listened to my chest and the PA felt it sounded better than last week, BUT this afternoon I am to take 2 lasix again and to check in tomorrow. Oh and this week my INR is up to 6.1....last week it was 5.6 and we cut the warfarin dose, but now I just have to hold it til I go back Thurs to get the other blood work done. I am coughing less and they got me an appt for this Friday instead of next Thurs. so that is good. I am coughing less often so that is a good thing also. Dr. Cody stopped for a min when he was talking and said Let me see your eyes and I thought Oh God, what is wrong with my eyes and he was checking to see if they were yellow. I will say, my legs look like they have a new suntan for some reason, but maybe that was cuz they were hanging down when I sat up on the table. My white count is going up....5.7 today...higher than it's been for a long time so that means my body likes being off chemo even if it is messed up in so many other ways.
Thanks for all your thoughts and concerns....Oh, you will be happy to hear this. I am off the rest of the week....not my idea of a vacation, but I need it.
My heart is only slightly enlarged and I have some pleural effusions, small, med and large on the lung, but not a lot of them. So I think I am moving in the right direction.
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Oh dear God Marybe - you need to take a small recorder to your appointments or a friend or someone - I knew something was wrong when you weren't urinating - glad you got to see everyone today and very happy that YOU'RE NOT WORKING THIS WEEK!!!!!! Rest is a GOOD thing - sounds like things are turning around for you. Sending hugs, S.
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Did you read all about that new medication? Please check all the warnings ...
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Shame on your doctor for not writing down your meds instructions! But glad everything is straightened out and you are feeling better. I can't tell you how annoyed I am with the DH's doctors. The DH has to discontinue one of his cardiac meds and add another drug perscribed by the neurologist. Because it was confusing, I asked my Ph.D. Pharmacist friend, on Saturday,to give us a plan. To our utter surprise, she told us one of his meds should be taken at night...NOT IN THE MORNING! Oy! The takeaway message is that the doctor should give you a list of your meds before you leave with whatever instructions and then you need to go over the meds with the pharmacist and find out the best time of day to take the meds.
Hope you get some much needed rest and start feeling better soon! Thanks for giving all of us a teaching moment! Time to teach our doctors to write everything down for us!!! Thoughts and prayers and hugs too!0 -
Have somebody bring you over some bon bons, and then sit there with your feet up and eat them!
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Hi Marybe, I like the sound of things beginning to turn around. Keeping you in my prayers. I need to get over to your t.v. thread, I'm worried I'll read a spoiler about BB since I don't watch the latest episode until later in the week.
Relax the rest of the week.
Hugs ♥
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Marybe, I am glad you got to see your doc's today and got the meds straightened out.
Where I go SCCA I have to fillin everyting I am taking at every visit. It is a form. The ODCS need a form to give us!! Quick someone write the AP for that and get rich selling it!
Ginger
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((Marybe)) glad you got in to see the doc and that you're coughing less.
It may be hard for you to rest this week but think of Europe! ((hugs))
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Well, they really do not have my meds worked out. Last night the phone rang and it was an Indian name that showed up on the tv screen....everything we have is bundled, TV, phone, computer. The only reason I picked up since I did not recognize the name was I thought it might have something to do with my one employer since the lst name was the same. It was another onco from the group I go to and he told me if I had any potassium at home to take a double dose and do it again this AM and then go in to be tested again. I told him the cardio PA was the one who told me to stop taking it and he said that she should pull it on on her computer to see the BMP results that they ran since all the practices that are part of the hospital are linked now.
My cough is better and I did sleep more last night, but I have nausea big time and have never had this before when I was on treatments. I do not like the feeling at all. There is really nothing I have any desire to eat....was trying to find something last night to eat before taking some pills since most of them say Take With Food and ended up with a piece of bread. I think of things I want to eat, but don't really want them if that makes any sense. Just do not have an appetite and this is totally not normal for me.
Still not really peeing in spite of the new med and taking double lasix as they told me to do.....do have diarrhea so maybe that is where my water is going. I did look at the possible SEs from the spironolactone, but know that any drug has them....no one would have ever taken tamoxifen if they believed everything they read. However, thank you for the link. The fact I am not going, does worrry me so I am asking about this when I go in today to have my potassium levels checked again. This is going to be another do nothing day.
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I hope you're feeling better soon.
The SE's I was was worried about were under the "call your doctor if this happens" part, not the "normal" ones... when you said your skin looked "tan", it sounds more like some sort of jaundice, and the warnings specifically say to tell your doctor if you've ever had liver disease. And since I read your treatments were for mets to the liver, I started worrying for you.
It also says call immediately for nausea. and loss of appetite, And it specifically contra-indicates potassium - even though yours is dangerously low. So, what do you do? Obviously you need to take the potassium, but this is it safe to take the drug?
Is there any way you can speak to the cardiologist who told the PA to order this drug for you? The PA did not go to medical school, and I have no idea whether she took your other conditions into account when deciding what drug to give you, but something is telling me you should call and speak to the doctor. THere are so many water pills out there, and the lasix was working fine, and starting to help you, so why give you something so hard on your liver?
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It's me again Marybe - please if you can't see the cardiologist today - at least get him/her on the phone - this PA business has to stop - she isn't a doctor and I don't like the sounds of "too many cooks in this kitchen" - none of this dosing is making any sense and because your liver is involved and the se's from the new drug sound alarming....
Can you get in to see your PCP today at least and get this all straightened out - you need a "sit down" and questions answered.
At least glad you are resting - made me laugh when I read "do nothing day" YIKES!!!!!
Love, S.
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Marybe, I agree.
Love Ginger
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Marybe... Please get the cardiologist in on the merry-go-round! Hope today is a better day!
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Potassium levels can be very dangerous if they're too low! I'm concerned why another onc was checking your files? Are they all working for you or is someone else assuming that another person is checking things out?? Fluid build-up is also serious shit. How are your ankles today??? I think a pow-wow at the cardio's office would be a good thing. With an onc consult to make sure everyone is on the same page!! This is getting out of hand!
(Sorry, I've run out of exclamation marks for today!!!!)
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!!!!!!!!!!!!! I'll add my exclamation marks to the above.... !!!!!!!!!!!!
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yes, I think the three of you need to get together, cardio, onc and you.
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The whole potassium thing is worrisome. It controls so many vital functions. Sounds like you must have been at heart attack levels if he wanted you to double up. Damn these people for not coordinating this whole thing better. Sounds like you need an advocate to keep all this stuff straight. I am glad you will be off the rest of the week-try not worry about that-the rest WILL do you some good.
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Marybe, are you really taking it easy this week?
Yep, don't take those feet down, 'cept to walk to the bathroom. No sneaky baking.
The Lasix is the only thing that whould be working. Not you. Enjoy a well earned rest.
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marybe: make sure they understand about the tumors on the liver,call them tommorrow. spirolactone has a liver warning.. thats' why dr cody was looking to see if you've jaundiced!!!
and do record the drs appts. mur AND i didn't catch them all in the beg, so i recorded every time i talked to any dr... its REALLY imp with CHF!!!I really hated hearing you so bad on the phone the other night, but sooo glad you did cal!!!love you, gal.. i want you here for a lot longer, and feeling better!!!
3jays
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