Home from the hospital...
 

Hello Everyone,

I'll try to make this short. I wasn't feeling too good the past few weeks. Just weaker and more tired than usual. Last Wednesday after dinner I started to have a pain in my back and a heaviness in my chest making it difficult to breathe. My husband took me to the ER and they started working on me right away. One of the blood tests called a dime/dyme? was elevated which can indicate a possible blockage or blood clot in the lung. I had a special ct scan, but it was inconclusive. My cardiologist felt there was a blockage and my pcp and radiologist were not sure. At any rate I was adimtted to the progressive care unit and put on enough meds for two people and given tests over the next 3 days. The only new med I was sent home with is Lopressor a beta blocker. My pulse and blood pressure were high. Probably because I was in the hospital! The cardio wanted me to stay on the ace inhibitor, but my ef is 55-60% and that's usually started when it's 40%. He wanted it as a preventitive, but my pcp didn't agree. Stopped the Plava=something, because I already take Lipitor. I still have to go as an out patient for a stress test in a month. I had so many tests that required nuclear injections that I'm maxed out so I'll have it done later. Thankfully my MG faired pretty well. They allowed me to take Mestinon when I felt I needed it and how much. I don't know how much of the weakness was do to the MG, the new meds, tests etc. My eyes started crossing the day before I was discharged and went away one day after being home. I still feel a little tired, but I think I just need to get my strenghth back. Should know more on my follow up visits.

I sure missed all of you. I hope you are doing well and feeling strong. I have a lot of posts to get caught up on. Welcome to any newbies! Take care and thanks for listening!;)

Big Hugs,
Pat

hi Pat
 

Glad you are out of the hospital. I hope that you are starting to feel better and that the MG gives you a bit of time off (for good behaviour LOL)

Love
Rach

Thanks Rach and for the laugh too! I sure don't miss having the shots of blood thinners injected in my stomach and abdomen. I have 4 bruises the size of grapefruits.:eek: I hope you are feeling better. I still have so many posts to read yet, but I'm getting there. Take care.;)

Hugs,
Pat

Wow Pat, you sure have been through it. I am glad you are home and it wasn't a heart attack or colapsed lung. {thats what I was thinking as I started reading your post} Now that you are home I am sure your strength will start returning.

Big :hug:

Thanks Joanmarie, It sure feels good to be home. I have to admit I was scared when it happened. First time in my life I actually asked to be taken to the ER! With all the tests I had, you would think they would know for certain if I had a heart attack or 'threw a clot' as they call it. But, the cardiologist is just not convienced. Maybe after I have the nuclear stress test in a month, he'll be convienced. I'm glad he's covering all the bases. I'm 57 with a strong family history of heart disease. My Dad had heart surgery in his 40's and died at 59 and my Mom had TIA's in her early 50's and a heart attach & stroke at 59, but lived to be 77. Well, didn't mean to ramble. See what happens when I'm not on the forum for a while. lol Take care.;)

Hugs,
Pat

Hey Pat,

I'm so sorry for your ordeal- that must have been very scary! I know exactly what you mean about the blood thinners...I had to take those too and it took forever for the hideous bruises to go away!

I'm glad that you're feeling a bit better now that you're out of the hospital- the hospital sucks!

By the way, how long have you been taking lipitor? Statins can be bad for people with neuromuscular diseases...They deplete the body of co Q10...Co Q10 normalizes BP and promotes healthy heart function...Maybe you can ask your doc. if you can take this as a supplement...A supplement that's good for cholesterol is indole 3-carbinol...It's made from cruciferous veggies (brocolli, cabbage, etc.). It has anti-cancer properties (by ridding the body of excess 'bad' estrogen), is good for the immune system and it lowers cholesterol. They've done studies on it and it really works.

Anyway, sorry for all the info.. I just hope that you feel better very soon!:hug:

Nicky:)

Thanks Nicky! I've been taking 10mg of Lipitor for about 7 years now. I didn't know it depletes the body of co Q10. I'll have to talk with my Dr. about that. Thanks for all the good info. Weren't the bruises from those shots huge & ugly!:eek: lol Take care.;)

Hugs,
Pat

So glad that you are home Pat. Scary stuff!! Hope that you are getting stonger and no more overnight visits to the hospital. Nobody likes being in the hospital right? Take care ~ Melanie

Hey Pat,

7-years is a very long time! Oh boy!

Enough people have developed Lou Gehrig's disease, MG and Parkingson's disease after taking statins that those medications are contraindicated for people with these problems. I'm not sure if they cause these problems because they prevent the body from making coq10 (which is important for proper muscle function, so that would make sense) or if it's related to the rapid decrease in cholesterol (which is important for proper nerve function).

If a person is low on coq10, there is an increased risk of heart attack. So the very thing that the statins are supposed to prevent would end up increasing the risk for.

I'd definately ask the doc. if you can add coq10 as a supplement for now, then maybe see if you can stop taking the lipitor. Plant fats are very good for balancing out cholesterol. They also have plenty of other good side-effects like good immune function and a decreased risk of hormonal cancers.:)

Nicky

Hey Pat!

Sorry to hear about your troubles - but glad the ER took it so seriously! Must have been scary. Even tho it's another test, try not to put off the stress test longer than they want. Your cardio can get a lot of info from it.

Take care - - happy you are feeling better and your MG has calmed down a bit at home.
Sue

Thank you Melanie...some of it was pretty scary!:eek: Take care.

Hugs,
Pat

Nicky I will definitly run that by both my pcp, cardio & neuro when I see them. Very good info, thank you.;)

Hugs,
Pat

Thanks Sue! Yeah, the funny thing is back in early May I think, my cardio did a combination echo, stress (no injection) echo. He said my heart was fine. He wanted the new stress with contrast done in the hospital, but I was maxed out on the nuclear from other tests they did. So I'll have it in a month. I'm hoping it will shed some new light everything. I'll keep you all posted. Take care.;)

Hugs,
Pat

Hi Pat
I'm a newbie and I don't think I've posted to you before. I'm glad that you are doing better. You definitely did the right thing by going to the ER. Especially with your family history.

Thanks and look forward to getting to know you!

Jujuan

Hi Jujuan,

Welcome to the group! Thank you for your encouraging words. I agree I did the right thing, but I didn't expect to be there for 4 days and countless tests! lol All went well and I must say the Dr.'s and nurses were wonderful which made all the difference. I hope you are feeling well and I look forward to getting to know you better too! Take care.;)

Hugs,
Pat

I am glad you are feeling better. Take care.

Hi Pat: Wow, that is so scary! I can relate to what you've been through. I was in the hospital for a week with a similar situation a few years ago. They thought I was having a heart attack. Plus, I have the same kind of family history as you. They did a cardiac catherization and a lot of tests, but never found anything. I've since thought it was all related to the MG. This was before I was diagnosed. I don't take statins, but do take meds for blood pressure.

Please take care of yourself! With this kind of stuff, it's very important to get right to the hospital or your doctor and not take a "wait and see" approach. I hope you feel better soon.

Take care,

Thank you Susan, I think I'm well on my way! Take care.;)

Hugs,
Pat

Thank you Sharman, It was scary at times. They were considering doing a cardiac cath., but deicided on the stress test with contrast. That's the one I have to wait a month on due to all the nuclear tests I had. I have to talk to my doctors about the statin I've been taking for 7 years. I'll have to look it up so I have something to bring in with me. Gez, my neuro knew I was taking it, you'd think he would know. Glad Nicky brought it to my attention. Well, I'm feeling a little better today. I think the tons of drugs they had me on are probably out of my system by now. You know the funny part is, I stopped smoking over 8 weeks ago and haven't felt right since! I'm sure it had nothing to do with what happened, but when am I suppose to start feeling better? lol One thing the cardio said, my lungs look incredibly healthy and asked if I only smoked a short time and only a little or didn't inhale? Told him I smoked for 37 years, 2 packs a day and inhaled everyone. He said I have no signs of any inflamation or emphazema...so that's great news! Well, I didn't mean to ramble on. It' just feels good to be feeling a little better...no double vision the last few days. So far so good on the lowpresser betablocker I'm taking...I was concerened I would have a reaction to it, like I do so many other drugs. How are you feeling? Take care and I hope you have a nice day.;)

Hugs,
Pat

Pat! Congratulations on quitting smoking! That's fantastic!:hug:

Nicky

Thanks Nicky, My husband and I decided to do it together and I'm happy to say neither of us have slipped even once. We really made up our minds this time. I already had about 25lbs to lose and now I've gained 10 more so far and he's only gained 2...that's not right!:rolleyes:

Hugs,
Pat

Hi Pat!
 

Erin
 

Thanks Erin, I'm sure everything is going to work out well. I'm a pretty tough lady!:D How are you doing? You've had such a hard time yourself lately. You keep the faith as well and I'll be keeping good thoughts.;)

Hugs,
Pat

Hey Pat!
 

Hey sweetie! Don't you worry about me - I'm a tough old bird! LOL! :D
I am now on some meds for fibro - they just can't explain all of this terrible pain - luckily I have such a great neuro - he truly CARES about ME and has had every test run to rule out stuff.........I won't lie. It has been hard, but it just makes me appreciate my good days even more!:D
I'm also back to 20 mgs of pred and am going to get IV IG every 3 weeks - that port has really come in handy! I highly recommend it!:D
Now we just have to get into remission and we'll be good to go! :D

LOve,
Erin:hug:

Pat, You'll have to excuse me if I'm being dense because I'm so tired. Did you say they don't have you on any blood thinners anymore?! Not even aspirin? The test is a D-Dimer. It can be elevated mildly for reasons other than a blood clot like right after surgery or giving birth. Do you know how high yours was and what the range was? Mine has been elevated (slightly) but no clots.

Did they do any blood clotting disorders testing? If not, you may want to get a referral to a hematologist to make sure you don't have any! APS (antiphospholipid antibody syndrome) is very common in people with autoimmune diseases.

After something like that, it's always good to check-in with/see your primary doctor to discuss it all. The ER is not a place where they manage overall care. They do the Band-aid approach to medicine. They don't "know" your whole health history and may miss things. So please go over it all with your primary. And cardiologist! ;)

Annie

Thanks Annie, I can't say for sure if they did a test for APS, but I did hear them say they were testing for clotting. I didn't have a hematologist, but I did have my PCP and his wife who is also an MD in the same office and my cardiologist. I spent 4 days in the progressive care unit and they did quite a few tests mostly involving my heart and lungs. Couldn't possible tell you how many viles of blood were taken twice a day.
I was sent home with orders to take aspirin and Lopressor. And to continue taking Lipitor and Synthroid. Cardio wanted me to continue taking an ace inhibitor, but my pcp disagreed as I explained in my first post. I will be seeing my pcp for a follow up next week and the cardio next month after I have the nulear stress test. He mentioned a cardiac cath, but I'm going with the stress first. When I see my pcp, I'll get copies of everything he has and then I'll have more info. When you're not feeling well and going through so many tests it's hard to think of all the questions you want to ask, no less get copies of everything. Truth be told, I was damn scared at times! Thanks again and hope your dog will be ok. You take care too.;)
Hugs,
Pat

Well, Erin I think we are both tough old birds and we can get through just about anything! We have great doctors, loving families and friends all around us...who could ask for more! If we all hang in there together, we'll all get through it together. I think some day we are going to have one huge remission party!:D
Big Hugs,
Pat

Hi Pat!
 

AMEN to that! We'll do just that! I am soooooo ready!

Love,
Erin:hug:

Heyyy
 

Hey Pat, so sorry I missed your post for so long! Just read it, boy, sorry for all that you had to go through. Bet it was really scary, not knowing what went wrong and all the meds and tests u had to be put thru. I'm glad u're home, do hope u get better soon. I've missed u!!

Connie
 

Thank you Connie. I'm doing much better, but it was scary having that happen out of the blue like that. All the nuclear meds will be out of my system in a couple of weeks, so they scheduled the nuclear stress test for Oct 22nd. If the cardio thinks a cardiac catherization is warrented, I will go for a second opinion at a much larger medical center where my neuro and neuro op is. It's a 1.5 hour drive, but well worth it. I've been taking more mestinon since this all happened as it caused the MG to flare up...that's normal.
Last night we picked my son up at the airport! He's home for a visit until Tues. It's so wonderful having him home! He's the best medicine!

I'm sorry to hear you haven't been feeling well. I've missed you too! Hope your Dad is doing better. I will keep you both in my thoughts & prayers. Hang in there kiddo!;)

Big Hugs,
Pat