Do any of you go through this???


I have returned to work.  I go to work on Mondays, Wednesdays and Fridays.   On these days I work a half day and come home totally exhausted and often will go straight to bed.   When there I take my pressure and it's bottomed out 70/50 at times.  I sleep a few hours and wake up still exhausted but with my pressure in normal ranges.  The following day is my day off and I will often have to drag myself through that day due to still having residual tiredness due to the physical exertion of the day before.   Yet one day's rest is usually enough and by the next day I'm ready to go back to work.  

Well, this is my "normal" for right now.  Mind you I'm still post-op from my open heart surgery last June and according to my doctors it takes a year for a normal person to fully recover from this surgery but with me they're not sure how long it could take.   So, although I'm pushing myself to try to rebuild my stamina, I am still technically in post-op recovery.  

Well, something that has been happening is that I won't fully recover my strength after a day of rest, but it will go on for 2 or 3 days where I've got chronically low blood pressure!!   I'm on my 3rd straight day of this now!  My pressure bottomed out yesterday at 70/40 with 55bpm!!  I'm dragging myself today and I have a feeling that tomorrow is going to be another day of this horrible low blood pressure!!

Do any of you go through this?  If so, what have your doctors said about it?  What do you do to improve it?   I find that I can barely make a meal and all I want to do is to sleep and keep crashed out!!  It's awful!

Any feedback would be welcome!

Thanks!

Lisa

Coca Cola Therapy!!!  HA!! THAT'S A GREAT THEORY!!


I only wish it would work!


I've been struggling with this for 4 days straight now and nothing seems to pick my bp back up!  UGH!   This is something which has happened as of my aneurysm surgery and some of my doctors have these theories that this may be my nervous system now being free to respond correctly to the mediators.  Before, due to the aneurysm, the nerves that lay alongside of the aorta were always being triggered fooling my body into the need for higher blood pressure, which is thought the reason why I never had much hypotensive crises, even though I would experience shock - it was always a situation which would be remedied by a good nap.   Yet now when I have a physically stressfull situation where I've overpassed my physical limits, I go into these funks of constantly low pressure and I can take naps and keep a low profile and yet nothing pulls my pressure back up but time.   Well, here I am now on the 4th day and I'm so exhausted that it's not silly and yet I am taking naps, going to bed early, sleeping 8-10 hours and wake up as exhausted as I did before!  It's awful!  

The problem is, what do I do about it?   And is this the masto or is this the aneurysm or lack thereof, or WHAT?!

How long have you had it go on for, Jilly?  What have you done to deal with it?  The idea of the yoga sounds very interesting, though.  I'll have to check into this.   And yes, it does feel really weird - it's like being drugged with something!!  

Thanks for the feedback!

Lisa

Jilli I think you have a great point about being careful to not add " strenuous digestive food" on the stomach when someone is already having a reaction.  Liquids are great forms of nutrients without over taxing the tummy.

I used to do Yoga--years ago.. maybe I will start again. Lisa.. look up Hatha Yoga.. and one exercise was my favorite surya namaskar.. "Salutation to the Sun" , its a way of greeting the sun each morning, its about 5 minutes, very gentle stretching. Here is a link to one, a beginner version;
http://www.metacafe.com/watch/5593075/david_demonstrates_the_surya_namaskar_the_...

Lisa.. Hon, I still have the feeling that you have a new line of activity and its different after surgery, compared to before surgery. I think youre going past that very often. You are stubborn just like me LOL and you dont like accepting new limitations. I truly understand but I worry for you and dont want you to force the issue, rather see where that new line is and work with it.  Hon, you fought so very hard about that surgery, please be kind to your body now.

I have had a few people gently remind me... you do Gods work even when you must scale back--that you need to learn to gracefully receive besides give to others--allow them to fill in and help you.. I think you were one of those people that taught me that  lesson LOL.

Im having some syncope that I never had before. It isnt major, but it happens a few times a day--when I get up too quickly (I think). I have  had a few embarrassing episodes when shopping where I just sat down on the floor, lol.. It passed in about 10 minutes. Im watching it but it isnt any major problem with me.

I do think there is some missing element that we arent seeing--something initiating that syncope with you Lisa. I do remember reading some articles that I thought pertained to you particularly--but I was too sick then to remember where or what--so I will look for those and other articles again.

You are My Liza Zilla and now I turn the tables to say take care of you OR ELSE lol.. there are airplanes everywhere!! Hey IF you send me your address, I know some M &Ms that want to see you he he...

Much love
Ramona

Hi Lisa....you have done so much to help me.  And low blood pressure is my way of life so I figured I would tell you my tricks and hopefully I could help you.

1) prescription compression stockings...YES...they help a lot!!

2) pinch of sea salt & tons of water ( I can't drink broth, gatorade, or veggie juice but others say that helps them...not sure if you could though)

3)salt on all my food, and use the natural kind not the iodized kind

4) trying to not stand too often in one spot

5) my doctor at Mayo taught me physical countermaneuvers to raise blood pressure when it's low.  One of them is to stand with the legs crossed, then place hands in front of the body as if praying at chest level, elbows perpendicular to the body, turn the hand then so one palm is facing down, the other facing up, and then pull the fingers against each other resisting.  I tried to explain that the best I can and it does work like a charm if you ever get really low and need it to come up.  Let me know if this isn't clear and I'll email you a picture of me doing it.

6) my Mayo doc who is very great with POTS also told me to drink a glass of tepid water before getting out of bed.  Not cold because of what it does to the vasovalgal (however you spell that---sorry brain fog)  That with a pinch of sea salt would do well too

Will post more later if I can think of more

Hope you're feeling better

Thanks Jared for the tips!!  Those are great!!


As to this hypotension episode, my masto specialist says NO WAY IS THIS MASTO!   She's VERY strongly suspecting heart related issues because when I get hypotensive I also get bradycardia!  On Saturday my pressure was 70/40 and with 45 BPM!!   My doctor is IN A TIZZY cause shes very concerned about what is going on with me with this situation.    My local cardiologist has asked for a bunch of blood tests and I sent them off to my cardiologist in Sao Paulo as well as my masto doctor.  I'm wondering what they're going to say cause there are some slight abnormal readings.  

Oh the things we go through with this disease sometimes really tires me out!!!


Lisa

Hi...I'm happy to send a pic but I need the email to send it to.  I tried to do my UP pics on here and it didn't work.  But the same link worked on the dinet forum.

Sorry, baby, if YOU thought the NIH was distant for you to get there, just think of how hard it is for ME!!   LOL!   I'd also have to talk with my husband and see what he says, but for the time being, it's not on my TO DO list, Mona!!

Now, as to those Harvard chappies, THEY ARE RIGHT THERE SUPPORTING ME and I've had to contact them recently for very important issues.  You see, Mona, I've got a special "IN"  with these researchers ....I'M THEIR MOUSE MODEL!       How's that for a claim to fame!

My masto doctor is in a tizzy over this because I have bradycardia and my pulse has hit down to 47 when my pressure bottoms out like this!!  I've written to my cardiologist and he's said he's going to do a cardiovascular investigation of me, but here's the trick - it's much like the NIH in that this is through the government insurance and not through my health insurance and so it's basically a waiting situation until a spot opens up and patients who are in more danger will be bumped up.  They could open the spot for me as they did for my open heart surgery, but I just have to wait and bide my time.  Yet, things aren't right and yesterday I had some serious issues with shortness of breath.  I very honestly can't tell if this is the masto reacting or it's due to my surgery.  My platelets are low, below normal, but not rock bottom, they're just a bit below normal as are the leukocytes and my erithromites are borderline low normal with some alterations in the cell sizes as well.  I've also got some alterations on the chloride, sodium and potassium levels, they're below normal too but nothing absurd, just a bit below normal and I've got some white and red blood cells in my urine as well.  

So, something is not right here and I can't figure it out as to what!  I'm not able to decifer what it is.  I'm thinking I've got to pull back from work cause I'm just getting tired out, but my school needs me and I feel that we're just beginning to make up for my absence last year, so this is complicated!  

But I'm not overly worried about it cause I do have this slew of doctor support here and in the States, only those up at Harvard can really only watch from a distance and it won't be until I can get myself up to the States that I can go and see them and then officially make them my doctors and that will allow them the ability to take a more active role in my care.  

But, in the meantime I'm running after doctors and answers again.  I have a stress test I've got to do tomorrow and on Friday I've got an echo.  If my heart checks out fine, then this will point the finger at my masto!  Yet, it sure does get old all of this confusion for my cardiologist in Sao Paulo says "masto" and my dermatologist in Rio says "cardiovascular"!!   So, we'll see which way the finger points!!!!

Thanks for your care Mona!!   Like you, I'll be okay!!!


Hugs!!

Lisa


by the way, have you ever figured what this smiley is for?    


Oh, I think I get it - this is when you are in such trouble that "you're all washed up" !!! hahahahaha