Doesnt everyone have days where they want to scream??? Warning (VENT!)

[disfan07]

There are somedays that I just put my face in my pillow and scream. Today was one of those days.

I have severe asthma. In the past 3 months ive been hospitalized for a total of 14 days becasue of astham attacks. They have all happened after being sick (sinus infections, the flu, etc). I am on the highest dose of maintenance meds fro my asthma and I can go weeks even months with no problems at all...until I get some sinus or respiratory infection adn than I end up in the hospital. This whole thing is complicated by the fact that i cannot take any decongestant meds for my sinuse because....

I have a heart arrythmia. i have Inappropriate Sinus tachycardia. which they did and EP study and found out that they could not fix it with ablation. The normal treatment would be beta blockers which I cant take because of my asthma. We have also tried all of teh calcium channel blockers. they havent worked. We have on med. left which i am starting in a week. If this doesnt work we have no idea whats next. I just had a 10 day event monitor adn my cardiologist is worried that my heart rate does not seem to be dropping below 100 and is going as high as 180 at times.

This is all complicated also by teh fact that i am on Methotrexate which is an immunosuppresent. My body cant fight infections well because of the meds so even a cold can knock me out for at least a week which doesnt help with my asthma or my heart.

And to add on top of that, my internist did a head CT 2 weeks ago and got the results last week and he said, over the phone, that there was somethign abnormal on teh scan and they think it is just a cyst but they recommend that I get a neurologist to look at it. Okay..great..wonderful. So I called his office last MONDAY to get a neurologist referral and never got a call back. So on FRIDAY my cardiologist gave me a recommendation for a neurologist AND a new internist at teh hospital we go to for her adn I am seeing both of them in 2 weeks for a second opinion and an MRI.

On top of all of this, I had labs drawn last week and my WBC is high...still. It was high 4 weeks ago when I was admitted which they though was form an infection they couldnt find. 2 weeks later, it was even higher because of the steroids. On friday it was still too high even after being off steroids for 2 weeks...so they want to redraw this week adn if its still high they want to send me to a hematologist.

And I will toot my own horn here and say...All of my nurses and doctors always tell me how great a patient I am (I think they have inflated my ego...lol). I am a very laid back patient. I am very assertive in my care becaus eI know so much but I am also laid back. I joke around with my doctors adn teh nurses. I dont complain about being woken up at 2 and 3 adn 4 AM for breathing treatments, blood draws, vitals, etc. But you know what...Im tired of being sick an tired. And with everythign else that is wrong, I've never really been truly scared befor ebut you know what...these two new things scrae the s*it out of me. I have a lot of things wrong but nothign that I consider to be really serious but these two new things are possibly really serious adn I'm scared.

I also came to the conclusion that I need a trip to WDW....that makes everything seem better...right?

If you made it through all of that...I applaud you for reading it.
I just needed to vent....Sometimes its easier to vent on here than to someone else in person.

 

[Christine]

Hey, vent away! You are under some serious strain. That old saying "If you have your health, you have everything" are the truest words ever spoken. Believe me, I have days where I just want to give back the body God gave me and get a new model. Each "little" thing I have wrong with me doesn't seem like a major deal, but added all together, I feel like I"m driving a lemon!! I have pity parties over it too since most people are know are humming along nicely.

I have had thyroid cancer and three separate sugeries to remove pesky, but benign, breast nodules. I have stomach issues and am also developing allergies to lots of things in the meds I need to take.

I was slightly bummed this week because I was thinking that since January 6th, I have visited five doctors. Goodness, it is only January 23rd!!

Anyway, you have my sympathies on the asthma and everything else. It truly sounds like a nightmare and you do seem to handle it really well. I really hope it all works out for you an you can find someone to work on your issues. I have been diagnosed with inappropriate sinus tachycardia before but mine is episodic and most likely due to iron deficiency. I find it to be a VERY uncomfortable problem. Does the high heart rate bother you?

 

[disfan07]

The high heart rate only bothers me when it goes above 120. I can sit an entire day between 100 and 120BPM and I dont notice it (I have to take my pulse 3 times a day for teh cardiologist). between 120 and 150 I can feel it adn its slightly uncomfortable but above 150, all bets are off. i cant do much of anything at that point.

Whenever I watch ER, greys anatomy, etc I always laugh when they are freking out over a patient being tachy at 120 because that is nothing for me..lol

 

[lovemygoofy]

I'm sorry you are having such asthma problems. My mom gets a cold and also ends up in the hospital due to asthma problems. Do you have a good pulmonolgist that is working with your cardiologist?

Can you take nebulizer medicine or asthma maintenance medicine? One thing that honestly helped my asthma and sinus issues was having my tonsils out. They were always infected which can cause sinus infections. I'm not sure how, I guess its all connected but having them out has really helped.

I know for my mom even when she is feeling good she has taken her nebulizer treatments everyday but only once or twice a day instead of the 4 or more times a day.

I hope you find relief. I understand how frustrating it can be trying to breathe and not wanting your heart to explode.

 

[disfan07]

unless I'm sick, I odnt need an inhaler or my neb. As long as I take my symbicort 2x day I'm fine.

My pulmonologist adn my cardiologist are friends...lol. It works out great. And at cedars-sinai all hospital records are scanned into the computer so tehy all have acces to these.

 

[lovemygoofy]

unless I'm sick, I odnt need an inhaler or my neb. As long as I take my symbicort 2x day I'm fine.

My pulmonologist adn my cardiologist are friends...lol. It works out great. And at cedars-sinai all hospital records are scanned into the computer so tehy all have acces to these.

Maybe you need to discuss that option because it keeps your bronchial tubes strong especially when gettinga cold can bring you down so quickly. I also have to take maintenance meds for my asthma so I understand why you wouldnt want to take them all the time.

 

[disfan07]

Maybe you need to discuss that option because it keeps your bronchial tubes strong especially when gettinga cold can bring you down so quickly. I also have to take maintenance meds for my asthma so I understand why you wouldnt want to take them all the time.

I take them at teh first sign of a cold/sinus infection etc. because I know that its the only thing that helps since i cant take decongestants. Unfortunately, I had been taking my neb. once a day to counteract anythign especialy in teh winter but then my heart rate would sit around 140BPM all day.

Its one of those between a rock and a hard place situations.
The thing that can help my asthma damages my heart and what can help my heart will send me into respiratory failure.

 

[lovemygoofy]

I take them at teh first sign of a cold/sinus infection etc. because I know that its the only thing that helps since i cant take decongestants. Unfortunately, I had been taking my neb. once a day to counteract anythign especialy in teh winter but then my heart rate would sit around 140BPM all day.

Its one of those between a rock and a hard place situations.
The thing that can help my asthma damages my heart and what can help my heart will send me into respiratory failure.

I'm sorry. I hope you can find something to help you. I know it can be frustrating.

 

[Christine]

Prior to my son getting an official diagnosis of asthma, he wasn't treated very well. His pediatrician gave him Flovent but wasn't really good about telling us to do with it and never had us in for follow ups. With every cold or illness, he just went downhill so badly. Then, when he was 6, he ended up in the ER and had a one week hospitalization. The pediatrician felt that he couldn't handle it (I don't think he ever was handling it) and sent us to a pulmonologist. Since that time, my son has NEVER had to even do a nebulizor even when sick. He is on Advair daily as well as Singulair and Zyrtec. He can get a little wheezy with a cold or the flu, but an inhaler seems to do the trick. I am so thankful that we finally got it under control. He has been labeled with moderate to severe asthma.

OP, do you think your Symbicort may not be enough. I just ask because it seems like my son takes a lot more maintenance meds than you and it seems to work for him.

 

[Soldier's*Sweeties]

To answer the original question...Yes...I have 2 year old twins...everyday I want to scream!

But I'm sorry for all of your health concerns and doesn't humidity help asthma? Florida would be perfect right?

 

[Disney Ella]

That is a lot to deal with. Just one of those problems would be bad enough, but you certainly don't need multiple health problems. I hope the doctors are able to come up with good solutions soon to keep your conditions under control.

 

[disfan07]

OP, do you think your Symbicort may not be enough. I just ask because it seems like my son takes a lot more maintenance meds than you and it seems to work for him.

I also take singulair 1x daya dn xyzal 2x day.

I was on advair originally. I was up to 500/50 i think 2x day with no relief.

We know i got a diagnosis of severe steroid dependent asthma. I had a methacholine challenge which confirmed teh diagnosis and it is one of teh worst cases of adult onset asthma my pulmonologist has seen.

To answer the original question...Yes...I have 2 year old twins...everyday I want to scream!

But I'm sorry for all of your health concerns and doesn't humidity help asthma? Florida would be perfect right?

Hahaha....that made me laugh. I babysat twin 1 year olds twice a week for 8 months and there were days I wanted to scream. I think I would have screamed if it was everyday. I love kids...but man...twins are tough.

Yeah I tried to convince my parents to move to florida....moving near WDW always sounded good.....we ended up in california instead...wrong coast.

 

[Mouse House Mama]

I am sorry that you are going through all this. It must be terribly frustrating. Have you thought of seeing an immunologist?

 

[disfan07]

Have you thought of seeing an immunologist?

Yeah, I saw one a few years ago when this all started adn they didnt find anything.

I have a new immunologist who is also an allergist and an infectious disease doctor (we moved 7 months ago to california....all new doctors)
Im seeing her in 2 weeks and she is doing repeat allergy testing adn repeat immunological testing.

 

[SundaeAfternoon]

Hugs to you. I'm sorry you're going through all of this. Hang in there.

 

[Normangirls]

OP -- I am so sorry for all you are going through. Vent away, scream, whatever you need to do. We're all friends here!

But most importantly, yes, a trip to WDW seems absolutely necessary!

 

[disfan07]

Thanks everyone.

It's really funny....as crazy/nasty as some of the threads on here can get sometimes, when it comes to things like this, its the perfect place to find comfort and to be able to vent.

I think what stresses me out the most about this is that I am in teh process of waiting for acceptance letters to transfer to a 4 year college. I hav ethis semester left at community college and I have 2 big fears about this:

1) Only 2 schools that I applied to are within an hour of the hospital where my doctors are. I go there usually 3 times a month....havign to find new doctors to see while I'm at school woudl not be fun

2)If they find something more serious I'm worried about this coming semester. I HAVE to keep 9 credits at school to keep my health insurance. I HAVE to finish the semster to be able to transfer.

The biggest thing is the unknown....there are so many what ifs

 

[Christine]

Thanks everyone.

It's really funny....as crazy/nasty as some of the threads on here can get sometimes, when it comes to things like this, its the perfect place to find comfort and to be able to vent.

I think what stresses me out the most about this is that I am in teh process of waiting for acceptance letters to transfer to a 4 year college. I hav ethis semester left at community college and I have 2 big fears about this:

1) Only 2 schools that I applied to are within an hour of the hospital where my doctors are. I go there usually 3 times a month....havign to find new doctors to see while I'm at school woudl not be fun

2)If they find something more serious I'm worried about this coming semester. I HAVE to keep 9 credits at school to keep my health insurance. I HAVE to finish the semster to be able to transfer.

The biggest thing is the unknown....there are so many what ifs

That's rough. It certainly sounds like you are doing everything right. I do wish, however, that they could do something about health insurance for young adults. My 18 (soon-to-be 19) y/o daughter is on my plan. I think it's going to be a VERY long time before she gets with an employer who offers health care coverage. Our insurance only takes her until she is 21. I worry.

 

[disfan07]

That's rough. It certainly sounds like you are doing everything right. I do wish, however, that they could do something about health insurance for young adults. My 18 (soon-to-be 19) y/o daughter is on my plan. I think it's going to be a VERY long time before she gets with an employer who offers health care coverage. Our insurance only takes her until she is 21. I worry.

Same worries here.
Luckily, my dads insurance takes me until 24 (as long as I'm a full time student) so I have 3 1/2 more years to worry.
I have written a lot of things to congress about the lack of health insurance for young adults being one of teh biggest issues and that teh worries of not having health insurance should NOT be the concern of any 20 year old. I strongly believe that needs to be a big focus of theirs. (Not trying to start a debate...JMO)

Luckily, because of my health issues, My grandparetns set up a health insurance fund for me 3 years ago. It is supposed ot help me pay for health insurance begining when I'm 24 if i do not get it through my job.
I'm one of teh lucky ones.....so many people are not so lucky