Lungs/Heart ???

[Irmaladoo]

  Hello all! I have something to throw at u to see if anyone maybe has had the same problems and can shed some light.  I have primary Sjogrens, past history of Thyroid cancer, and just this past yr was diagnosed with Lupus Anti Coagulant (which led to multiple blood clots in both lungs and in my main renal artery) and Crohn's Disease as well. I have been becoming short of breath for quite some time now and it has recently, prob in the past yr, gotten really bad, so bad that I have fallen in the shower because I get light headed. Last week at the dr I brought this up, he knew I had fallen before, he saw the bruises, but I didn't let him know how bad things actually were until this past week. He sent me out with the nurse to walk a hill and check my oxygen and it dropped way low, and of course I got light headed. He immediately started me on oxygen 24/7 and I go see a lung specialist in a few weeks. Until then, I went today to have some pulmonary test done to check a few things, and everything checked out good with my lungs as far as they go. 


The technician wanted to check my sats while I was sitting and resting and he put the pulse ox thing on my finger and my heart rate was 147. Well naturally he freaked out and had 4 other ppl check it different ways. I take Adderall, and I told them this to try to calm them down, LOL but he told me it shouldn't get that high even with them. So he called my dr and now I'm wearing a heart monitor for the next 48 hrs. This has just been a heck of a week! I got oxygen hanging off of me on one side and now a heart monitor on the other!!! The oxygen doesn't seem to be helping me breath any better at all. I'm just really confused and kinda getting worried. Well u all know how it is, when u can't find answers. 

[irish]

Irma, Do not panic until they tell you to. There can be reasons why you are having the high pulse and it may or may not be related to your lungs. One thing you need to do is to make sure you get a hemoglobin and ferritin level done.

I went through a heck of a few months years back when I was so short of breath that I could not hardly walk. I went to cardiologist at the University and ended up having a stress test that day before my blood work was back. The stress lab folks thought I was going to kick the bucket while I did the stress test. They kept asking me if I was ok. I got very short of breath about 15 seconds into the test but managed to huff and puff and get almost 8 minutes in.

I was exhausted when I finished but I passed. They sent me home with a monitor for 2 weeks that I could only take off when I took a bath. I could not walk 6 steps without my heart rate hitting 100 and just pounding in my chest. Low and behold they found out that my hemoglobin was very low as was my ferritin level. Talk about a big fuss and lots of expense over something that should have been checked out earlier.

I was put on iron pills with Vitamin C for close to a year. They never found out what caused it but suspected that it was from autoimmune disease or from a medication that I was on.

You will probably have to have other testing done to find what this is from. Don't get worked up at this point as things just have a way of working out. Sometimes we aren't happy about it, but there is nothing we can do about it and stress is the last thing you need on your plate. I always say a little healthy denial is good for the soul. It keeps us from losing our mind.lol irish

[Joe S.]

Irmaladoo, If I have not said welcome then please consider it said. I have to agree with Irish, "Do not panic until the doctors tell you to". In fact if they do tell you to panic it is best to remain calm. Panic just makes it worse for us. I often use my breathing meditation to remain calm.

I wish that they find out soon what the problem is and provide you with a cure or a way that you can manage the symptoms.

[jstroble]

HI

That happened to me several years ago and it turned out I had pericarditis which can be a  complication of autoimmune diseases. It happened again this week and I did the walking around with the thingy to check oxygen saturation as well.  My pulse was very high too.  I had a CT scan which showed no lung problems.  Since I have polymyositis the doctor thinks it is affecting my diaphragm  and chest muscles making it hard to breathe.  I am not sure I agree with him. 

I hope you get some answers soon and start to feel better. 

joyce

[anita]

Shortness of breath can be related to high heart rate as well.  It is common to get SOB (and for sats to drop) when your HR is that high.  They will be able to tell what's going on with the heart monitor or some other cardiac tests.  If it gets worse in the shower, your BP might be dropping (from the hot water).  When the BP drops, the HR automatically goes even higher to compensate for lower BP.  Of course you would become even more short of breath.  O2 may not help if your HR is too high and the cause of your shortness of breath.

They will find the cause.  Try not to worry...that will only increase your HR more.  I know...easier said, then done.

[Irmaladoo]

Thanks guys for all your help. It eases my mind alot. I've just been hit with so many new health issues in the past year I'm kinda over it! LOL I know we're at the beginning stages of all this and hopefully we can get it figured out sooner rather than later. I've just been going over and over in my head all my symptoms and trying to piece everything together and so much of what all of you guys say just makes sense to me. AHHHHH thanks my fellow sjoggies! 

[Irmaladoo]

And BTW Joe S. I've been a member of this message board since 2006 so I'm sure we've said our Hello's along the way, but just because its Fri. HELLO!! LOL  I just don't post much. I'm more of a reader than a poster I guess. Plus with my health being so yucky the past little while, I haven't done much of any computer business. I'll try to do better!!

[bloodless]

I'm sorry you're going through so much! Being on oxygen really sucks! Especially if you work. I had shortness of breath for a while that required 24/7 oxygen. It was diagnosed as pleurisy (inflammation of the lining of the lungs). The good news is, it's gone! Yippee Skippy! So you may be able to get off oxygen. As for my heart, it's enlarged due to diastolic dysfunction. Whether caused from the SLE or SJS, I do not know. SLE does cause accelerated atherosclerosis though.

[Irmaladoo]

Yeah the oxygen is a bit of a pain, especially to lug around and have it hanging all over you in this heat. The nose piece is already causing a big pimple like place underneath my nose and I'm shoving the Vaseline up in it like crazy! Hopefully it won't be a long term thing. I know I shouldn't complain at all, because I know it could be alot worse and I'm so thankful for everyday that I'm able to get up and at least do what I can do.

One more bit of info I forgot to add about my last few months, I have been fighting a ferocious staph infection as well. I've been through 3 rounds of different anti biotics and as soon as I'm off of them for a week or so it comes right back. I have been doing bleach baths, and I have a cream I've been using. Anywho, I was just looking up some stuff on staph (Lord, you'd think I just got a computer! LOL) and some of it talks about rapid heartbeat and shortness of breath. ??

[irish]

Irma, I don't know where you have had the Staph that is being treated, but it is possible that the pimple or sore in your nose could be another staph. I would talk to your doc about this as there is a very specific ointment that can applied for a staph skin infection.

I guess if you are feeling lousy or more lousy you may need to be seen again.Staph can be such a bugger to treat and get rid of. Can't let up on the treatment for one second as it can get ahead of us really easy. Irish