Cardiopulmonary Stress Test

[firewatcher]

In the spring newsletter, one of the questions about deconditioning was answered and Dr. Suleman mentions a cardiopulmonary stress test. I've had a pulmonary function test and a cardiac stress test, but not a cardiopulmonary stress test. Anyone had one? What did it show? Was is done medicated or unmedicated or both?

[tinkerbella]

I had a level one and a level two at different dates before the pots dx. The level one was a set of breathing test done before the stress test done on a exercise bike with a whole team of doc around me. They injectied dye into my arm and took xrays while I was riding the bike. I was suppose to tell them when I had chest pain, but I could not talk, so they would just push my chest against the xray machine when they thought I was about to pass out. I though it was the last ride of my life. They also kept taking my blood pressure till they couldn't hear it any more. Results came back suggesting I had congestive heart failure. These were done at the top hospital in Boston Ma General. What a fantastic team of Doctors, plummy, nurses, and staff.

Level two was like level one but a Cather was put down into my heart and pressures were measured while pictures were taken on a table after the breathing tests. Then they had to get into my arterial vein in my wrist. This did not go very well. I'm a bleeder and the left wrist wouldn't thread but made a mess all over the doc and I. Next we went to the right wrist and this was not easy either. I looked like I had slashed both my wrists. Then they tell you if it start to bleed within 24 hours after you leave and it won't stop after 15 mins you have go call 911. I was slightly scared as this was the same team I has before and they were treating me like a queen. I was sure I was going to die. My boyfriend at the time was scared to death when they called us into a tiny room and told us that I could and I had to sigh a release.

Everything was the same except, at the end when I couldn't get my breath for the longest time. They kept trying to get a blood gas on me. the you dr. said we never had anyone take this many draws before. They keep drawing till you get back to normal and also I forgot to say in each test they run ekgs before and after till they get you at least to the point of where you came in. Results came back suggesting Neuro muscular disease. After these results I told the dr. I taught exerise classes for years and I feel like I'm going to pass out and I can't breathe. He said I'm sending you for one more test. It was the TTT.

I hope this was helpful.

My dog just had a siezure or something I'm so upset and can't proof read.

bellamia

[juliegee]

Bella- is your doggie OK???? We need an update!

Jennifer, I loved your question in the Q & A section of the newsletter. The cardiopulmonary test that Bella describes is WAY too invasive for me. Poor Bella- that sounds awful!

I looked into the doc's other suggestion, the VO Max Test. That's way more my style . The next time I walk into my doc's office and the nurse takes my HR & BP as soon as I sit down, and my hyperadrenegic numbers are scary HR- 125, BP- 140/90, I'll just tell the doc not to worry, I can run over a mile and a half in 12 minutes- I only have trouble when I stop .

Julie

[firewatcher]

After reading about the stress test, it sounds AWFUL!!!!!!! I have not checked the VO Max test out yet, but I can't run a mile. I guess there is no convenient way to measure our level of fitness other than our symptoms.

What really stinks is that even the BMI calculators are off for us/me, because of blood volume issues: my weight can fluctuate up to 8 pounds in 24 hours. One day I'll be 152 and another I'll be 145. I have no idea what I'm supposed to weigh.

[TXPOTS]

Dr. Suleman is my doctor, and he never mentioned this. Of course, I am usually in a POTS brain fog while in his office, and my husband does most the talking. Get this. I can run 5 miles and even 8 miles on a good day. I am with you Mack's Mom. The problems start when I stop running. I find it bizarre that I can run and run and run, but I can't sit up in a chair. Grrr... I would gladly trade the running for sitting and standing.

[firewatcher]

Dr. Suleman is my doctor, and he never mentioned this. Of course, I am usually in a POTS brain fog while in his office, and my husband does most the talking. Get this. I can run 5 miles and even 8 miles on a good day. I am with you Mack's Mom. The problems start when I stop running. I find it bizarre that I can run and run and run, but I can't sit up in a chair. Grrr... I would gladly trade the running for sitting and standing.

I envy you both! My best time at a mile is 15 minutes and that was when I was in peak condition, and it still hurt! I think my HR just goes too high. I have never been able to achieve any level of cardiac conditioning, even with daily training. But strength training was SOOOO easy for me! Even Pilates is easy if I have enough down time between sessions, it is just the aftermath that hurts.....for days!

[juliegee]

After reading about the stress test, it sounds AWFUL!!!!!!! I have not checked the VO Max test out yet, but I can't run a mile. I guess there is no convenient way to measure our level of fitness other than our symptoms.

What really stinks is that even the BMI calculators are off for us/me, because of blood volume issues: my weight can fluctuate up to 8 pounds in 24 hours. One day I'll be 152 and another I'll be 145. I have no idea what I'm supposed to weigh.

Jennifer,

Google the VO Max test. It's really simple and straight forward. There are literally dozens of simple tests for every level of physical ability. Seeing how far you can run or walk in 12 mins was just ONE of them. Once you get a baseline, you simply check your progress. Sooooo much better than what Bella went through.

You're right. The BMI charts won't apply to you with your inconsistent water weight/kidney issues. Have you seen those scales that claim to keep track of the percentage of water in your body?

Julie

[sue1234]

I had seen Dr. Suleman once, and I think I know which test he did that represents the 'cardiopulmonary' test. I remember I had the regular pulmonary function tests, but then I had to get on a stationary bike and ride for a certain amount of minutes while I was breathing in a tube(or something) and have my heart monitored. I strained to make it through the x amount of minutes, as I knew already that i was deconditioned due to POTS.

[TXPOTS]

I had seen Dr. Suleman once, and I think I know which test he did that represents the 'cardiopulmonary' test. I remember I had the regular pulmonary function tests, but then I had to get on a stationary bike and ride for a certain amount of minutes while I was breathing in a tube(or something) and have my heart monitored. I strained to make it through the x amount of minutes, as I knew already that i was deconditioned due to POTS.

Yes, yes... now I remember. The nurses set me up for the bike test with the breathing apparatus, but I passed out before we even started the test. This was in December, and it reminds me that even though I am still very ill, I have come a long way,

[TXPOTS]

Dr. Suleman is my doctor, and he never mentioned this. Of course, I am usually in a POTS brain fog while in his office, and my husband does most the talking. Get this. I can run 5 miles and even 8 miles on a good day. I am with you Mack's Mom. The problems start when I stop running. I find it bizarre that I can run and run and run, but I can't sit up in a chair. Grrr... I would gladly trade the running for sitting and standing.

I envy you both! My best time at a mile is 15 minutes and that was when I was in peak condition, and it still hurt! I think my HR just goes too high. I have never been able to achieve any level of cardiac conditioning, even with daily training. But strength training was SOOOO easy for me! Even Pilates is easy if I have enough down time between sessions, it is just the aftermath that hurts.....for days!

I bet you could beat me sitting up though and for some odd reason, I do not respond well to actual strength training or pilates. Funny how we're the same, but different, I hate POTS.

[toddm1960]

I had metobolic testing as part of my mito workup that included VO max testing, all done on a bike. It's not easy with your nose plugged and you're forced to breath into the mouth piece, but as long as I was sitting I was able to complete it. It is a much better gauge of our fitness level.

[tinkerbella]

Bella- is your doggie OK???? We need an update!

Julie

Julie,

Thank you for asking me about my dog...I posted that just after I had written the post. I had left the room and the seizure was over and the post was open and I was going crazy. It lasted for almost 15 mins and I was a nut case thinking I was losing one more precious loved one. When my son arrived he tried with all his might to get to him and finally 5 more mins later seemed normal again. I had a friend here who tried to find a vet open, but we weren't having much luck. I thought maybe it was lyme or a bug bite as he was struggling to walk but then he peed an threw up.

He has recovered and I spent the night watching him very closely. I'm so torn as to what to do, mom is being buried tomorrow, I had to be infused today so my son watched him today, and my kids all said watch for another one as maybe he was just one. Otherwise mom you have no money, lets wait and see. He lays in bed with me all day long and won't always drink and eat unless I'm with him. I don't always feel the temperature right. Yesterday I was sick most of the day and in bed, do I'm not sure if he eat or drank much. After he came out of it he drank and drank. I'm praying he was dehydrated. I just got home and he is still fine. I'm going to google a few more things before I call the vet and take his temp, as I have no car and depends on the kids. They will take me if it happens again. My daughter just called to check in on the dog so if anything happens she will help me.

thanks,

bellamia

Thanks as I'm on the edge

[juliegee]

Bella- is your doggie OK???? We need an update!

Julie

Julie,

Thank you for asking me about my dog...I posted that just after I had written the post. I had left the room and the seizure was over and the post was open and I was going crazy. It lasted for almost 15 mins and I was a nut case thinking I was losing one more precious loved one. When my son arrived he tried with all his might to get to him and finally 5 more mins later seemed normal again. I had a friend here who tried to find a vet open, but we weren't having much luck. I thought maybe it was lyme or a bug bite as he was struggling to walk but then he peed an threw up.

He has recovered and I spent the night watching him very closely. I'm so torn as to what to do, mom is being buried tomorrow, I had to be infused today so my son watched him today, and my kids all said watch for another one as maybe he was just one. Otherwise mom you have no money, lets wait and see. He lays in bed with me all day long and won't always drink and eat unless I'm with him. I don't always feel the temperature right. Yesterday I was sick most of the day and in bed, do I'm not sure if he eat or drank much. After he came out of it he drank and drank. I'm praying he was dehydrated. I just got home and he is still fine. I'm going to google a few more things before I call the vet and take his temp, as I have no car and depends on the kids. They will take me if it happens again. My daughter just called to check in on the dog so if anything happens she will help me.

thanks,

bellamia

Thanks as I'm on the edge

Bella-

I hope it was just a one time deal- dehydration maybe. How old is your dog? I recently lost mine & know how horrible that is... You certainly don't need another loss now. I will keep you and your family in my prayers as you put your Mother to rest. I will also pray that you have the health & strength you need to get through the day. Stay strong. All of your DINET friends will be with you in spirit.

Gentle Hugs-

Julie

[tinkerbella]

He's four a fun, loving, cockerpoo. I remember when you lost you dog as I just started posting. I posted to you about losing your dog as I had lost my first dog of 15 1/2 years. I posted to you for a while trying to get you to talk about you dog. Then one day you told your story of your sweet dog.

my nurse will be here soon and we will talk about what makes sense to do right now.

love,

bellamia~

[firewatcher]

What I don't get is the correlation between lung diffusion capacity and VO2 Max. When I had a Pulmonary function test, my diffusion capacity came back at 240% of predicted normal for age and weight. But, put me in motion and I drop off so fast! With a high lung capacity and excellent diffusion, I should be able to jog till the cows come home, not see spots and nearly faint with a HR of 200+! Something is squirrelly!

[sue1234]

When I went to my pulmonologist, he did some kind of test that checked on my diaphragm. He kept checking the meter, as he couldn't believe my results. He even tested it himself to see if it was working! Anyway, he said my diaphragm was weak. I don't know how that translates. I'm guessing since I've had POTS for four years, I guess not doing much walking or definitely not excercise, I am not doing alot of deep breathing. The diaphragm is a muscle, and I guess it is not getting worked. So, I guess I am just telling you what is up with my lungs--I have enough breath until I have to get physical, and then I just don't have the breath.