anyone familiar with reactions when changing meds??? help!

[sylviayasgur]

hi all out there!
my father, as you all know, has had a st. jude's mech. av for almost 3 yrs and has been doing great_ thank God!
he is in fla. with my mom for several months (each winter) and was doing fine....
he was taking procardia xl and although his ankles were swollen, he was feeling great and his cardio left him on it.
it is one of the side effects of this med.
his cardio retired and he is now seeing a new one who took him off the procardia xl and doubled his dose of diovan.
over the last few days he has become progressively more tired and short of breath. his ankles are no longer swollen, but he can barely make it up a flight of stairs, let alone hit more than 4 or 5 golf balls without getting winded.
i told my mom to take him to the emergency room there and am soooo nervous.
i know shortness of breath is not a good sign, right? i'm assuming it's the change in meds, but am very worried.
any suggestions? when they called his doc in n.y. the dr. on call said that he didn't have my dad's chart and that my father should just lower his salt intake and call in the morning. i told them not to wait and to be sure that it's nothing.
if anyone has any knowledge or experience like this, please help!!
in the meantime, happy superbowl all and be well.
thanks for all you do, sylvia

 

[Ross]

By doubling the dose of Diovan, what is he taking now?

I was on Procardia XL and I had the swollen ankles too. After surgery, they dropped the Procardia and started Atenolol 50mg x2 daily and Diovan HCT 160/12.5 once a day. I'm breathless as all get out, so perhaps he may be overloaded on Diovan? I'm just guessing here.

 

[hensylee]

I can't imagine - but hope your mom gets him to the hospital pronto. Anything like this should not be put on a shelf...........My prayers are with you all.

My ex always used to say if it works, don't mess it up (medically speaking, that is) God bless

 

[sylviayasgur]

thanks ross and ann,
i forced my mom to take him to the er. she called from there and said that his pressure was really high. they were going to run all sorts of tests before releasing him. that was 3 hours ago!!!
i'm still waiting, anxiously, for another call.
ross,
i'm not sure about what else he takes. i know his cholesterol is high and i know he takes something for that, but forgot the name (on the tip of my tongue, but can't get it). he takes coumadin, naturally, since he has the st. jude's but also he's in chronic afib. i don't know how much diovan he takes, but i do know that they doubled his dose.
being the worry-wart i am, i am a wreck until i get the next call.
thank you both for your speedy replies. i knew i could count on someone from this site to give me some feedback.
you have no idea how much i appreciate it.
will keep you posted.
thanks again my friends, sylvia

 

[EVELYN]

HI SYLVIA...I'M SO SORRY TO HEAR ABOUT YOUR DAD. HE IS IN OUR PRAYERS...PLEASE KEEP US POSTED. I'M HOPING TODAY BRINGS MUCH BETTER NEWS.

EVELYN

 

[hensylee]

Hope his dr gets some smarts and puts him back the way things were. I always fear that something will happen to my primary dr and the next one might want to do something different and it would make me very unhappy since everything works the way it is now. Medicine is an inexact science and seems many drs have ideas of their own, and they don't always work, do they?

 

[sylviayasgur]

hi all!
thank you so much for your prayers and concerns and help.
it seems that my dad was short of breath and tired because he has chf.
can you imagine that the dr on call told him he didn't have his chart and couldn't help him out, so please lower your salt intake and call us at 9 am the next morning???????? i think someone needs to set that guy straight!!!
in any case, 8 1/2 hours later in the er, he was admitted and put on lasix.
my mom is a wreck since they are in boca and don't know any cardios there, etc.
they are calling their good friends who have had ohs today to get some referrals on cardios in the area.
meanwhile, he is feeling much better and breathing well now.

evelyn,
my parents live in great neck. i think my father may be looking for a new cardiologist when he gets back. does tyce's cardio work out of st. francis? do you like him/her? if you don't mind, would you please forward his/her name so that i can pass it on to my parents?

also, richie rich,
did i hear you mention that your cardio works out of lij? i think my dad's cardio group does too.
do you like your dr? if you don't mind, would you also please pass his/her name on to me so i can give it to them?

i can't thank you all enough for all you do to support me/us.
ross, ann, evelyn, thank you sooooo very much for your prompt replies.
you are all lifesavers.
i'll keep you posted.
be well, sylvia

 

[Mb]

Hi!

Looked for an updated post on your Dad. Hope he made it out of the ER, with a med change if that's what he needed.

My husband also has chronic a-fib. He has two St. Jude's, and a severely leaking tricuspid valve. Fluid retention is a huge NO NO for him, so he watches his weight carefully. The extra fluid gives him volume overload, and taxes the tricuspid valve that already has a problem. So his DR. has told him to keep the fluid OFF. He is ALWAYS short of breath. (he is 56 years old).

The a-fib is debilitating in and of itself. Causes CHF, fluid retention, SOB, etc. etc. - I will watch this thread with great interest. Best wises. - Marybeth

 

[Mb]

Ooops, just saw the update! God bless the lasix! It does do the trick, and, just ask Nancy, if that doesn't work those cardio's have even more tricks up their sleeves!

Do not get overly worried about the CHF. My husband has been in CHF for two years now, and it is medically controlled......for the most part. Your Dad will get the right mixture of meds, and have most, if not all, of his old life style back. Best wishes, and I am SO glad is is feeling better! - Marybeth

 

[sylviayasgur]

thanks marybeth!
i know you have been through so much with your husband. i so appreciate the inspirational words.
thanks again, sylvia

 

[Nancy]

Hi Sylvia-

I'm glad to hear that your dad has some improvement. Going to the ER with CHF symptoms is the best thing to do. They can give IV Lasix and get the fluid off FAST. We've had many, many trips to the ER. Joe has had CHF for many years. He battles fluid constantly in spite of being on a no salt added diet (limit 2 grams per day).

As you probably know, he's in the hospital to treat his CHF, pulmonary hypertension and anemia, and has been there for 28 days. The doctors are trying all kinds of different drug combinations to see what works best for him, and he has had reactions to some of them which made him retain a lot of fluid. But he's in a highly controlled environment and it can be reversed fast. So it is possible for some drugs to make fluid retention worse.

Hoping your dad is feeling much better soon. CHF does ebb and flow. It's a chronic condition which can be managed with vigilance. But you have to have a GOOD doctor.

 

[sylviayasgur]

nancy,
thanks for your kind and helpful words. i think i'll do some reading on chf, as that has not been_thank God_ an issue up until now.
when do they think your joe will be going home? i had hoped that he would be home by the weekend.
please let us know how he does and wish him well for us.

thanks again and stay well, sylvia

 

[Mb]

Sylvia:

It may just be that his Dr. never told him he had CHF. It sure sounds like he has had it awhile to me. A-fib causes CHF, and the fluid rentention is a classic sign. He may not have noticed that he was SOB upon exertion....like walking up a flight of stairs. The SOB comes up on you over a period of time. Just a thought. - Marybeth

 

[EVELYN]

Hi Sylvia

Tyce's cardio is out in Riverhead---wwwwaaaaayyy too far from Great Neck. We absolutely love him. Tyce did have a cardio at St. Francis, but he just did the cath and saw him after. His name was Andrew Berke and he seemed very competent. I don't think he couldn't be competent and have a practice there. I don't know whether he does new patients or only hospital tests and follow ups, so I really can't help you there. If you want, call Dr. James Taylor's office and they should be able to give you a cardio from St. Francis. His number is 516-627-2173.

Hope it helps---good luck, Sylvia.

Evelyn

 

[sylviayasgur]

hi all!
thank you so much for all your help. my father is in the hospital and is being given lasix and they have him on a nitro drip as well.
what i can't seem to understand is that he used to play golf, go for a short run, and sometimes hit some more golf balls all in one day without even getting tired. i can't understand how this came upon him this rapidly. i know chf is not something that just develops overnight and exhibits symptoms so quickly and suddenly, right?
could the change in meds have spurred this on? they are keeping him in the hospital for a few days jsut so they can regulate this and control it with the proper meds. i think my brothers, my mom, and i are really happy that my father went to the er and that he is there under close watch.
they have a cardio coming in to see him this afternoon (someone the hospital has assigned to his case).
i told my parents that they should also call their own cardio (a doctor they got from their friends who are patients of his) who is also affiliated with this hospital. don't you agree?
i can't thak you enough for all the support you give.
hope you are all well, sylvia

 

[FredH]

Hi, sylvia
I had an AVR Nov 2000 and had a lot of problems with a-fib and a-flutter. Got settled on a med that worked until last Saturday and then I went into a-flutter. I called my doc and he was not available so they referred me to one at the hospital and he said to come in to have it checked. After 4hrs at the emergency the emergency room doctor and cardio doc both told me I did not have a-flutter. On Tuesday I went to my regular cardio doc and he found that I did have a flutter. Both he and I were very upset. Because of them not listening to me and misdiagnosing me it has caused me all kinds of problems I won't go into. The moral of the story is don't depend on ER or strange cardio doctor. Call your regular doc. I agree with you the problem looks like a change in meds.
Good luck

Fred

 

[hensylee]

I agree with you, Fred (btw, nice to see you again - it's been awhile). The ER missed my heart attack altogether. Good thing I already had an exam scheduled w/a cardio - who then did surgery (bypass)!!!!

So, if you have to go to ER, check as soon as you can, with your very own dr.

 

[sylviayasgur]

hi fred and ann!
my father is doing better (after all the lasix) and is scheduled to have an echo and a stress test tomorrow morning.
i hope it's nothing but the med change.
the hospital has assigned a cardiologist and an internist to him. he really liked both.
what i did not like at all was that the cardiologist suggested that "salt in the chinese food he ate this week may have caused this".
joey even said that we were just all together on vacation where he ate much saltier food and was fine.
i adore my parents and they are young and very capable, but i just don't think they advocate well for themselves and each other. i, on the other hand, am very vocal and assertive if i feel something is amiss.
i think that if my father needs to stay hospitalized for much longer, i may fly down there to be with them and help
advocate and figure things out.
would you believe that i have a childhood friend who used to be a pathologist, her husband is an internist, and she knows another cardiologist who was referred to my father (by one of his good friends).
she thinks the world of him and says he's very smart. i urged my parents to call him. my parents, however, won't even consider seeing him for a second opinion!!!! how stubborn!!!!drives me nuts! they liked the hospital's guy because he's young and is a harvard grad, and his father is a harvard grad_ go figure....
i think we'll know much more after tomorrow's tests. the hardest part is being so far.
i will keep you all posted.
thank you, thank you , thank you , from the bottom of my heart.
you are all so special to me.
stay well, sylvia

 

[alicia]

Sylvia, My prayers are with your Dad and your family. When I had CHF in Oct 2001 it came on suddenly and they admitted me and gave me Lassix,etc. At the time my mitral valve was again leaking (6 months after repairing it) and I had a sudden onset of SOB and extreme fatigue. I was at work that day feeling SOB after walking up the stairs and I went home and cooked dinner and later felt really bad and my husband insisted I go to ER. They immediately put me on Lassix and after 2 days in the hospital, I lost 15 pounds of fluid!! Knock on wood Ive not had that happen again. Today is 3 weeks since my mitral valve replacement and Im doing great. Hopefuly all will go well with your father. I will include him and you in my prayers tonight. try to get some rest.

 

[srwieland]

Hi Sylvia,

so sorry to hear about your Dad.

My problems last spring were probably much exascerbated by the meds. I had taken Procardia for years before my surgery in 5/01, but when they put me back on it about a year ago, I immediately started having problems (espeically with near fainting, but also swollen ankles, which I had never had before).

After adjusting the dose for a while, they then switched me to an Ace Inhibitor (Accupril), on which I did much better but greatly suffered from a nasty throat tickle and cough. Because of that, they switched me to Diovan on which I've been doing just great, even though it's a pretty high dose (160 mg am and pm, 320 mg total). The thing is, if I hadn't insisted on getting attention and adjusting the meds, they probably would have just left me on autopilot to suffer needlessly.

I would highly suspect the problem is medication related, or at least exascerbated by the meds like mine. I second what someone said earlier about it not being an exact science. Seems like it often takes quite a bit of trial and error to get the meds right, especially because they seem to effect everyone very differently, particularly in combination.

One thing we've learned from our experience and from this wonderful website; we all have to look out for ourselves and each other. We can't just go to whomever and accept whatever.

So, don't despair, Sylvia, even if your parents may resist your advocacy. Hang in there and be as assertive as needed. PHysicians, especially those in the ER, tend to help you only as much as you insist on it.

So, squeack those wheels baby as loud as you can and we'll all cheer you on!

Best wishes.