Does anyone take this med?

[Toogoofy317]

I saw my local cerdiologist today and he started me on a long acting nitrate for my chest pains. The name of it is Isosorbide Mononitrate. Anyone been prescribed this for HCM?


He also got a baseline test back and it showed my enzymes to be chronically elevated. Anyone else have chronically elevated enzymes :?:

Any help would greatly be appreciated.

Mary S.

[hismom]

I don't personally take it but my husbands grandfather is on it. He had a quadruple bypass in '96 and now has a pacemaker. He was having periodic chest pains after the procedure so that is what he has been on ever since. I know it works well for him!!!As far as side affects or what to expect I do not know. He is on several differant meds. for his heart and blood pressure so I'm sure it will work differently for you.

[rebeccaann50]

Hi Mary, I take imdur which is the same thing for HCM. The first few days I experienced headaches and lightheadedness. Since then i've tolerated it well without side effects and my chest pains are gone. Good luck! Becky

[Pat]

Good evening, Mary!

I think you should call your Boston team about this as soon as you can. As far as I know, nitrates are contraindicated for people with HCM. A quick check of my resources at-hand does not tell me why. I simply remember learning that we should not take nitrates for angina.

And, please let us know what the Boston team tells you about this. Maybe a repeat of the information will clarify it in my own head!

Pat

[Lisa Salberg]

OK funny thing about the Nitrate issure.. there are a small percentage of people with HCM and very small vessels...in these people some nitrates may...repeat MAY be OK in small doses and if monitored very well. This may be Marys case.
Call Boston and check with them and let them guide you. This is not a common drug for HCM but for you it may well be the best one for you.
Best wishes,
Lisa

[Toogoofy317]

I did talk with Dr. Maron yesterday. He was in concurrence with my local cardiologist. The only thing he changed was the type he changed it to Idodril 10 mg three times a day. The Imdur was 30mg once daily. He said I had to watch my bp regularly and that I would get a headache and possibly light headedness. I am definatley experiencing the headaches and cold not sleep because of it. Oh well if it keeps me out of the hospital.

Lisa you were right I have the small arteries.

Thanks for all the help!

Mary S.

[Toogoofy317]

Okay. I know very few of you take a long acting nitro here for HCM. But as usual I am as Lisa said "not normal" . But for those of you who do how did you get through the first couple of weeks. These headaches are horrendous :( ! Yesterday I got really light headed and had to lay down for ten minutes. My PCP prescribed me a powerful drug for the headaches but I can't use them at work which is when I really need them. Any help would be sooooo appreciated! I am getting desperate here!

Mary S.

[Linda]

Mary, the headache is a well documented side effect, but quite often will be covered with plain tylenol. The lightheadedness is something to call your doctor about, as it may be dropping your blood pressure too much. This also is technically a side effect, but one that could pose serious problems for you. So, call your doctor about the lightheadedness before you have to deal with it again, and at the same time, let him know how severe the headaches are. Good luck. Linda

[Toogoofy317]

Well, looks like I am going to give a call in tomorrow to Dr. Maron. Something just is not right. I am finally tollerating the headaches but am still getting blurred vision. One particular thing that really scared me today though was when I needed to catch my boss who was about 150 ahead of me. To catch him I had to sprint a little. Well I did and I got almost to him and almost passed out he literally caught me. I felt like my heart was going a million miles a minute and I was very light headed. my skin was very pale and clamy. I am not sure what to make of this. If it is just the medicine or something to do with this great condition.! Any suggestions?

Mary S.

[Reenie]

Ah, Mary. I'm sorry. I have no idea why it's that way for you, but I sure hope you get it figured out soon.

Reenie

[Linda]

Mary, It could well be a combination of both. Start dialing Dr. Maron's #. Let us know what you work out, and catch the boss by phone next time. I know, it looked easy at the time :wink: . Linda

[Lisa Salberg]

Hey...what are you doing running like that to begin with ... WELL???
Now let yourself have some time to adjust to all this medication..and remember to be careful.
You have to be careful and give yourself time ...PROMISE US your will not do that again....PLEASE
Lisa

[Toogoofy317]

Okay, I promise I won't do anything like that again. I think it scared me just as much as my boss John (who is my biggest supporter through this). Trust me after I laid down rested for a bit boy did he let me have it. And yes I deserved it. :oops:

I guess I am still having a struggle trying to adjust to this. It has just been a year since the diagnosis and to those who know has been a hard year with a lot of trials and stresses. I'm 22 and have had my world turned upside down. I have no family other than the one at work, so alot has been done alone. But in my real time of need there was always an angel there wether it was my boss John or Lisa calling me at the exact moment I needed to talk about this problem. If only I could stop being so competitive though. I think it runs in my blood and EMT school just fueled the fire. I am so desperate at this point to find a job in my expertise now that I just can't stand it anymore.

Oh well thanks for letting me get it out!

Mary S.

P.S I will never do that again :!: :!: :!: :!:

[Lisa Salberg]

I am glad to hear that you are not going to try that again :D
Now RE: your 1st year of living with HCM - the first one is often the worst one. So much to adjust to, go many doctors, so much information...anyone can hit overload!
You do need to take a step back and just have fun from time to time and put HCM in the back of your mind,,while still remembering to be careful.
Take a deep breath... put the pieces together one by one and you will be much happier!
All the Best!!!
Lisa

[Toogoofy317]

I took your advice Lisa! I am going to take a complete vacation from school and work. I have not had a real vacation in such a long time. Seems strange to say that living in the vacation capital of the world. In a couple of weeks some friends and I are going up to blue springs state park to unwind and have some fun. it is long overdue. Thanks for the idea.

Mary S.

[Lisa Salberg]

send me pictures... I want PROOF of vacation...smiles and FUN!
:D
Lisa

[Toogoofy317]

You're just like everyone else. Don't think I'm capapble of taking a vacation. I have too many people that have me pinned against the wall on this one. No way out. So yes I will send pictures just so you know. I also have 3 tickets to Walt Disney world and a ticket to a water park. Do I send these to the regular HCMA address? Can't afford the $50 for membership but I do want to do my part for this fabulous association!

Mary S.

[Lisa Salberg]

Yes you can send the tickets to the regular address..and your contributions have more the made up for the membership fees this year. We will be able to raise a good amount of $$ selling/raffleing off these tickets!
THANK YOU!
Hey everyone - if money is tight and you can not afford a monitary donation - sending items for the golf outing would be great - Within your local communities you can get business to donate items to us. EVERYTHING HELPS.
Oh and telephone cards are always welcome!
Lisa

[SheliRenee]

Now I think that getting businesses to make donations is an awesome idea. Is there an "official" way to go about this?

SheliRenee

[Toogoofy317]

What a very long and awful week! :( I went to a friends house last Sunday night wasn't feeling to good chest pain, sob, neasea, you know the usual symptoms for this disease. so I went to the Er to make sure everything was ok. My enzymes were elevated so I was admitted. My chest pain and sob went away but I had stopped eating. Everytime I ate I got very sick to my stomach. So since I was at a different hospital than I normaly go to they did more test. Found out I have gall stones with gastritis and duodenitis Lovely. So two days ago I had the gall bladder removed and am more confused than ever. They practically stopped all of my heart meds because my HR was very low (in the 50's) I also had an allergic reaction to the IV fenegain they gave me so alot of my veins are shot because it only took them five times to figure it out. So I get out today and am totally clueless on what to do because none of my local docs saw me since the hospital wasn't in their area. What do I do with my meds now? I know need to call my docs etc, etc. I just had to vent a little well alot because they sent me home after surgery with no pain medication. Why does this always seem to happen to me.
:?
Mary S.

[Sarah]

Dear Mary,

I'm soooo sorry you had to have surgery. YUCKY!! :cry:

You've been seeing the T-NEMC team, right? Give them a call and let them know what happened and find out what they want you to do about your meds now. Have the numbers for the doctors you did see when you call in case they want to chat.

hang in there (at least it was good that they found it and fixed it!!!)

big HUG

S

[Toogoofy317]

Well, I talked to Dr. maron today and found out some interesting news. The cardiologist that was there told me he had talked to Dr. Maron before the surgery and that everything was ok with what they were doing. When I discussed this with him I got a totally different story. he said he got my call to call this cardiologist . Dr. Maron did not get a hold of the Dr. so he left numbers to contact him. this guy never called him back. So in essence he lied to me. Upon my discharge they gave me no papers on when to return to work and no medication for the pain. I went to my primary and she was very infuriated she said she needed to look into their neglect and see just what is happening there. Let's just say I am never going back to that hospital. :evil:

mary S.

[Reenie]

Gosh, Mary. You sure do get the bad luck don't you? Are you feeling a little better now? I sure hope so. Remember to rest a lot and take care of yourself.

Reenie

[Sarah]

Dear Mary,

Please report that joker to the state medical board!

I'm glad you are ok.

Hang in there,

S

[Toogoofy317]

Yeah, I'm gonna do some more looking into this. My doctor is making me take two weeks off of work so I'll have some time on my hands.

I do have some of the worst luck in the world and you guys haven't even heard half of it. My life would be a great story for Oprah or a soap opea! :wink:

On the flip side I am very lucky to walk away from my instances of bad luck. Gotta look at the cup as being half full! Life has bumps in the road I slow down and take them as I can. With good friends to help me along the way when I get stuck in a rut.

Thanks for your care and concern!

Mary S.

[Lisa Salberg]

WOW... UM... I am almost afraid to ask..but how are things today?
OK let me first address a larger issue... You all have heard about the problems with maltpractice insurance and you have all seen eveyone involved pointing fingers at each other saying it is not "my fault..its the, patient, hospital, docort, tech, nurse, insurance co, lawyer....."
When it all gets to the bottom it is normally a lack of communication at some point that brings the house of cards down.
So how do "WE" fix this mess...
When we encouter situations like Mary has explained we must document it, and let the hospital, doctor and the state lic. board know of the problem. Thankfully Mary is OK...but if this problem is not brought to the attention of those that can help stop it from happening again someone may get hurt. This is what I suggest: document the entire issue give FACTS not emotion. Make it clear where the problems happened and that you know the problems are there. Ask for follow up as to what steps were taken to ensure the problem can not happen again.
It is only when we all participate in corrective action that it means anything. Mary..you can help others by documenting everything and filing it with the hospital and state Lic. board.

Malpractice will end when all parties work together rather that point fingers. Wishful thinking ..I know but it can not hurt.

Mary..feel well... and do something nice for yourself!


Lisa

[Toogoofy317]

Lisa,

Thanks so very much for that posting. I do believe this is something that should be documented. I am not sure who I go to? Do I write a letter stating all that happened or do I need to pull a copy of my medical records for some extra proof?

I may call you in the next few days to get more in depth with the questions. We talked a while back about different sources that I could get for my research paper. Unfortuantely, with my wonderful luck my palm pilot decided it wanted to act up in the hospital so it died and I lost my info you gave me. It was on Echos for atheletes I need the pros and the cons for my paper.

One more thing have you gotten my letter with the tickets to Disney in them yet? I sent them over a week ago.

Sorry for all of the questions.

Mary s.

P.S. as far as I'm feeling. Ok I guess. Feels like someone kicked me in the stomach several times. Can't lay in a postion of comfort. Laying on my side kills my tummy and laying on my back I can't breath. At this point I don't know what is worse! :cry:

[Reenie]

Mary, get a good stiff pillow and hold it against your tummy while on your side, or better yet, sleep in a recliner with your pillow. I sure hope you're feeling better soon.

Reenie

[Pat]

Dear Mary,

I'm SO glad you got through all that and seem to be recovering--at least enough to post here. I'd recommend you keep Dr. Maron's phone number with you at all times and double-check yourself (if you can) if any future doctor tells you Dr. Maron has authorized a change in your meds.

And, Lisa, I appreciate your comment about reporting the events. I agree that we have to help create an environment in which errors are recognized & corrected. I have found that a clearly thought-out letter gets the attention of those to whom it is addressed. What I do, Mary, is sit down at my computer with a calendar or my date book. I enter dates and write what I remember from that day. How I felt (emotions, symptoms), what I did, who I talked to, how they responded, and so forth. I go to the next day and the next and next. Often times I'll remember something else, so I go back and enter it where it belongs in the consecutive presentation of events. I usually read it over and quit for a day or so. Then I go back and edit--clarifying, condensing, adding connections. I may do the edit four or five times until I'm sure I've presented the facts in a way which makes sense to someone who knows nothing first-hand about the situation I'm presenting. That means I've left nothing out which is essential to understanding.

I send my letter to the doctors or administrators who are involved first. If the response I get from them seems satisfactory to me, then I don't escalate by contacting licensing authorities or accrediting bodies. But if they ignore it, are defensive, or seem to believe I've no right to question their actions, I don't hesitate to go to the appropriate regulatory body.

I hope this helps. Hugs to you, Mary,
Pat

[Toogoofy317]

Hey All! My stomach is doing much better. I do have a need for more advice though. My right arm is still very much sore from the medication that they inadvertantly injected about a weekago. I have a strong sensitivity to phenergin and it only took them about four times to figure out. After my surgery the nurse thought she would put some of this medication in my pain meds to help with nausea. As soon as she did I knew because my arm welted and started to swell.

Here's the question. My arm is still quite red and I have bruising down the entire length of the vein. Even sticking my hand in my pocket causes excruciating pain. Does anyone know of any home remedies for this? I'm getting desperate and about to call my doc about it.

Mary S.

[Linda]

Mary, call your doc! Could be something time will take care of, but not worth taking a chance with. Linda

[Lisa Salberg]

DITTO to what Linda said!
Lisa