I'm a Research Lab Rat

[hollie]

Hi all... I hate long posts, but have to vent!

I'm part of a POTS study at a major research hospital. I go once a year & do the TTT, Valsalva, QSART and a few other tests. This is only the second time doing the tests. I've been seeing a cardio doc the last 8 months because the first 4 months after my dx, the docs at this hospital treated me like I was an idiot. They told me to drink lots of water (I know), eat salt (I know), gave me a px for florenef and pushed me out the door. He didn't even seem concerned that my HR or BP was all over the board. He gave me some tips too (not one of which has worked in the last year - I've learned more on this site than I did with numerous meetings with these docs there)!

I'm going in to do them the favor for these tests, not the other way around. I figure If I can help the next patient that comes in here with POTS, then it's worth it. I went in with a good attitude. I tried to forget about how I was treated last year and was actually looking forward to seeing how I was really doing with this because I haven't even been able to go back to work and needed some advice/help getting back to a half-way normal life.

First of all, they put a IV in so they can draw blood during the TTT. I've been stuck with needles literally hundreds of times and they never bother me (no... I'm not a druggy... LOL... between two problamatic pregnancies, giving blood, and all the tests since this all started). I've NEVER had an issue with them getting the needle in. It took three tries before it worked (it bent in my vein the first two times!). I was bleeding all over, it only hurt a little and didn't really bother me. But then I started getting POTSY. The tech felt really bad and told me when messing with veins, the nervous system will be triggered (ANS included). They performed the tests, taking about 2 hours. The doc then came in and asked me about 25 questions - right after all the tests when I'm "not all there" anyway. He wouldn't even listen to my answers. I was still laying on the table, half alive. I had a couple questions for the doc and he just brushed them off. He acted like I was waisting his time. He asked me why i was taking the BB I am and why so much. He told me to cut back to half. I told him I had been taking only half up till about a month ago and my HR was still jumping up a hundred points just walking around the house! He responded with, "OH, then you've been watching that then?" I wanted to smack him! Of course I've been watching that! I can't go up a flight of stairs without stopping (or at least going REALLY slow!) because my heart was pounding so fast and I can't breathe! I wanted to ask, "Who are you to tell me what drugs I need and how I feel? You've only been talking to me for 3 minutes and you haven't even had time to go through my test results!!" They treated me like I knew absolutely nothing about this disorder. I probably know more than a lot other POTS patients out there. I constantly am looking for more info. I've even read three studies that this doc has performed & writen himself!!

I also have a blood clotting condition. It makes me more prone to clotting and such. I've been told by one doc AT this hospital, my PCP, and my cardio doc I'm seeing that I can up my salt intake, but don't go too crazy. The doc yesterday pretty much was mad at me for not upping my salt intake more than I had in the last year. I told him about my condition and he responded, "I've never heard of such a thing... there is no reason you can't up your salt even more!" Well, excuse me! I would rather feel light headed and icky every day than have a clot go to my lungs, or heart, or brain! I guess the 3 other docs and all the research I've read was all wrong! WHAT? He told me to drink MORE water than I am... It's still not enough - OK, but I'm already drinking an average of 140 oz a day, how much more can I drink?

He then went on to tell me about another study they are going to start up soon. He said I would be a perfect candidate for it. It's a three month (or maybe more) study that I would have to go down almost every day for. I wanted to say "Are you kidding? You treat me like dirt and you want me to come back for more of your abuse... every day!" I felt like that was all he wanted out of me! I felt like a useless little lab rat to them, used and thrown to the side when they're done with me!! What ever happend to tact, to personal attention, heck... to politeness?!?!?

I've been resently trying to look on the bright side of everything, otherwise I get so down. This set me way back yesterday. I thought I would go in and feel validated and get some aswers. Instead I got treated like an idiot and pushed aside. Sad thing is I'll go back next year... I know I will. Good thing is, I know not to expect a thing! I'll just go knowing that's all they want me for... to be a lab rat! Like I said... Maybe it will help someone else (maybe even me in a couple years).

Thanks for listening!! I feel better now... you guys are the only people that will listen to me vent (other than my husband and my mom and I know they get tired of it).

Hollie

[MightyMouse]

You may want to contact their patient advocate. Every hospital has one. You also may want to take everything you've put in writing here, and send it to the head of their committee that oversees research, along with an inquiry about why you should consider ever helping with another study if they don't treat you respectfully. I have to say that your experience is about the opposite of my experience as a research patient at NIH--I was treated like a revered guest, by everyone from the doctors to the nurses to the techs.

Nina

[hollie]

That's the sad thing... I've heard so much praise for this place and the docs. I don't need to be treated like a queen, but I would like some respect. I would at least like a few questions answered instead of being brushed off. The person I talk to on the phone is so nice and helpful. But then when I get there, no one at the front desk (in that department) knew anything, the techs were so impersonal (except one out of 5), and the doc acted like he didn't have time for me. I'm just tired of being the "2nd rate sick" as I call it. No one believes you... no one listens to you... no one cares that you can't even play with your kids without sitting down, or go to work, or even clean your house. BOOOOO WOOOOO... I know I sound like a big baby... sorry... like I said major set back in that department today!

[MightyMouse]

it might make more of a point, but give you more irritation if you just stood up when a doc there is being uncaring and say "we're done, I'm going home, because clearly you care more about your study than about the human beings that participate in it."

Just my 2?

[hollie]

I would LOVE to do that, but I don't think I would have the guts!

[Mary P]

Hollie, I'd also like to suggest that right there and then you stand up for yourself. Don't take any more c--p from these ??! There really is no word to describe them but they're out there in great abundance, to destroy the spirit of anyone who'll let them get away with their inability to show some human kindness to their fellow humans.

You are very brave. I'd never be going back again. No one would ever want you to so.

Bravo for you Mighty mouse! We all need to stand up to these insensitive and rude Docs, etc. I wonder what makes them this way?? I don't know about patient advocates but I must ask my own doc when I see her in a few days. From now on I'll 'say it like it is' if I ever again encounter the emotionally abusive behaviour I endured on a visit to one Neuro

When I was treated like a nobody by this Neuro last year, I wrote to the doc who I thought was supposed to 'be on the patient's side'. Instead I got a letter from this doc saying that he had investigated the matter concerning my visit to the neuro and there was nothing wrong with what this guy said or did, that he was always does his best for every patient he sees.

I had mentioned how badly I'd been treated, abused really, but the Neuro denied all he had said to make me feel diminished and worthless. I thought to myself, "Of course, he'd deny his abusive behaviour, just like a criminal will not admit to any wrongdoing"! I was stupid to think that any of this Neuro's colleagues would stand up for me!

So, once again with this letter, I was made to feel diminished and worthless all over again. It was the first letter I've ever written and it will be the last. Instead I'll speak out, right on the spot so-to-speak, and I hope there'll be others there to listen and hear.

[MightyMouse]

doesn't take the littlest bit of guts... just remember that docs are simply human beings and clearly in your case, they are not quite as advanced as you quite yet.

Nina

[hollie]

LOL!!! NO ONE is as advanced as me!!! (NOT!!)

You know, every time I have issues (good or bad), I debate for about a day weather or not to post them here. EVERY single time I do, I feel SO much better! I either feel redeemed or at the very least get a laugh!!

[Ernie]

Hi,

I am also a lab rat and I feel the same way about most researchers. They only care about their study. Once I was paralysed and doing a postural study. The nurse forced in a pill in my throat and I was so afraid to choke to death. I could not swallow so the pill sat in my mouth for about 5 minutes. Either they didn't believe that I was really paralysing or they just did not care if they killed me.

Researchers believe that they are doing us a favor and that we are dependent on them. I stopped being a research rat at many hospital because of the abuse going on. My family does not want to participate in research for that reason.

[dsdmom]

hollie,

I'm interested in what you posted about clotting and salt intake. Could you direct me towards some reading about this? I have a clotting issue as well and have never heard this. What type of disorder do you have? If you want to PM me, that's fine.

[ramakentesh]

Ive been a lab rat as well although my experience wasnt as negative as yours. Still I found that at the end it was a case of 'ok, see ya', door closes and I walk out very dizzy.

From what Ive experienced to a degree and more what people Ive spoken to have experienced, its seems that Docs involved in these studies tend to have a pre-conceived view of the condition, what they are trying to find and prove and arent really interested in you or your story.

The problem is, despite their cavaliar attitude, most of the research being published on POTS is still very contoversial; most of it only uses selective referencing and chooses to ignore the often considerable published research that doesnt back up their own often questionable contentions.

Its all guess work - they are all still guessing why we have POTS and how to treat us. If they act otherwise they are insulting your intelligence. I like Dr J Stewart because he admits this and doesnt pretend as other major researchers do that they have a clear understanding of the illness(es).

Even if you find nice researchers you may also find that after the studies were concluded all of a sudden the helpful people you have found during the study are no longer returning your calls, are harder to see, and are far more dismissive of anything you say or asked and have far less time for you.

A cynical viewer told me that some researchers in various fields of medical research may be more interested in getting published and recognised for their own career development than the welfare of their patients/study group. I doubt this is totally true although there may be some truth behind this in some specific cases.

At the end of the day, you are doing all POTS patients a favour by participating in the research and finding answers to what is causing POTS and then hopefully MUCH NEEDED better treatment protocols.

Still Id think twice about my involvement - Id want to have at least two extra tests done of my own choice based on the findings of other researchers - which I doubt is likely because Im just a 'patient'.

[all4family]

Hi,

I am also interested in the clotting factors. How was this found in you? I have had many of my D-dimer tests come back high, and for this reason a pulmonar embolism was suspected more than once. Is this associated with pots?

I also wanted to say that I know how hard that is to stand up to a doctor who treats you that way. It was shameful of him to do so. If only we could get a glimpse of how they are going to treat us before we go in we could come prepared for their attacks. I just got the bill from an allergist who had treated me so badly. He made $550.00 for lecturing me about how he is a human and can't take that much information. Well then why don't you make a more human salary? And why don't you have human compassion? You are only a human when it works for you because you don't know the answer to my problem. I sure wish I could go back and redo my appointment with him. They seem to get away with this superior way of thinking, and that is a real shame. They have never had to walk a mile in your shoes. (or probably more like 100 feet). They should treat everyone like they would want to be treated. Unfortunatly too many have been programed to think that they are somehow better people. That there education makes them better than you. Instead of being appreciative of there good fortune to have their health, AND an opportunity to get a education, and mecical degree. They are just luckier than others. That's it. I hope you don't let them get you down, and I thank you that you are willing to be a "lab rat" to try and help others with your same condition. That is how treatments or even the cause may be discoverd, and I thank you for doing it. That makes YOU the superior human to HIM. Could you picture him laying there on the bed feeling half dead taking that treatment? He wouldn't do it!!!! He wouldn't have the guts! So sorry for your experience. I hope things go better for you.

Suzy

[hollie]

I am also interested in the clotting factors. How was this found in you? I have had many of my D-dimer tests come back high, and for this reason a pulmonar embolism was suspected more than once. Is this associated with pots?

I have what's called factor V Lieden. It was found in me because about 7 years ago (pre-POTS) my grandfather had an aneurism, then a small stroke. He was discovered having it and his docs recomended his family all be tested for this gene mutation (expecially the woman because of estrogen birth control and supplements). My mom was found to have it and me too, but no one else in the family. Since then, my mom also had a clot in her leg twice. Basically, I'm about 8 times more likely to have blood clots than someone without this mutation. It's NOT associated with POTS.

Thanks for the kind words too! I'm SO sick of the superior attitude some of these docs have! I would LOVE for them to live a day like some of us!

[all4family]

Hi again,

My mom had an anurism at the age of 49. She luckily survived it, as it stopped bleeding on it's own. So I will definatly look into this. Thank you for that information.

And you are welcome. I know what you mean about coming here and feeling better. I just recently had an entire breakdown here, and found such nice support.

Take care,

Suzy

[ajw4790]

Hi,

Sorry that you had such a rough time! I think it is wonderful whenever anyone is able to help and volunteers to participate in research (and be a lab rat!)! I think that it helps us all immensly, and I hope to sometime also be able to assist in some research to give back as well. So, foremost be proud of yourself for sticking in there and being the lab rat!

I wish that drs were more understanding and sensitive at this appointments. They do need to understand that their lab rats, are actually HUMAN and not rats, mice, rabbits, or monkeys. He should have been more vigilant and understanding of your other medical history and how other drs have been doing your treatment protocol and why. I am not trying to give him an excuse, but sometimes for research the drs have to stay blind to some factors- I am don't think this was the case here, but not sure. Also, sometimes the research protocol calls for the patient to be blind or to not do certain things (ie talk too much on certain topics to patient) because if it possibly messing up the results. I don't think this was the case here, but ya never know.

And after all that he wanted you to come back for another one of HIS research studies... that was the icing on the cake! The nerve!!!

I also agree with bringing this up to a patient advocate or the dr themself. I, myself, although introverted have no problem telling people when they are treating me unfairly, because I am human, and I have rights. We should never have to actually be treated like lab rats, that is why they have the review committees etc for research. I have been treated unfairly be drs in the past, sometimes I will put up with what I can for an appmt or two, but if it is an ongoing thing and nothing positive is coming from the situation, I have called them out on it and discussed it with them. On dr. told me if I wasn't going to exercise, they couldn't help me and that I needed to find another dr. So, sometimes it is just indicitive of how much that dr is not a right match for you. But, in this case I think that the dr. is forgetting the big picture, and may need a slight deflation of that round object on his shoulders!

I hope that you get some more compassion and helpfulness from participating in this research!

[delphicdragon]

I am also interested in the clotting factors. How was this found in you? I have had many of my D-dimer tests come back high, and for this reason a pulmonar embolism was suspected more than once. Is this associated with pots?

Suzy-

Very interesting that all your D-dimer tests come back high. Mine do too, and not just a little high, off the charts high, but no embolisms.... I was told that it was also a marker of inflammation, but haven't found that information anywhere. Maybe we can unravel that mess.

Sara

[MightyMouse]

I should also mention that I was part of a study at UMDNJ in Newark NJ, and when my bp stayed around 30, I can't say enough about how nice everyone was. The doctor came and sat with me, and was very worried about me driving myself home. I let him know that as soon as they got me some water, let me take my meds, and give me about 20 to 30 minutes for the meds to get into my blood stream, I'd be okay to drive. He's the one that some of you may recall said to me "How do you live like this?" He was compassionate and just amazed that I could adapt. I know that many have had horrible hospital and doctor experiences, as have I, but I've also had a few really good ones thrown in to renew my faith in humanity.

Nina

[all4family]

I am also interested in the clotting factors. How was this found in you? I have had many of my D-dimer tests come back high, and for this reason a pulmonar embolism was suspected more than once. Is this associated with pots?

Suzy-

Very interesting that all your D-dimer tests come back high. Mine do too, and not just a little high, off the charts high, but no embolisms.... I was told that it was also a marker of inflammation, but haven't found that information anywhere. Maybe we can unravel that mess.

Sara

That is very interesting. Thank you for sharing that. I also get strange swelling in different places in my body like for the second time right now I have a "ear infection" I think. my ear swelled so big it was closed. They couldn't even put the odoscope in. During the same time OTHER parts of my body swelled, but I don't know why. I didn't know that was also a marker for inflation. I must admit that is quite a relief as I have turned down many ct scans due to the dye. I always would worry if I was doing the right thing. But I am still here, so I guess so. It would be nice to unravel any part of this crazy mess we all live with. Thank you for that information.

Suzy

[flop]

If anyone writes/phones to discuss the way a particular doctor or clinic or project treated them then I would advise contacting the patient advocacy service or the person in question. Writing to another doctor probably won't get you very far as they are not going to want to challenge a colleague.

Unfortunately the usual cause of any complaint is poor communication - the research doctors should make it clear exactly what their involvement with you is. Sometimes they are not allowed to treat the reaseach patients. Some places will give you some sessions just related to the research but then offer you an office visit as well to focus more on your specific issues.

Try to compose a letter to the advocacy service, otherwise the research team won't know that they have upset you and will most likely continue to treat you and others the same way next time.

My Grandad participated in a drug trial in the UK. He didn't know if he was getting the medication or a placebo pill but there were extra "perks" for research patients. He had regular phone calls from the research nurse and went to the hospital every 6 weeks for echos and to see the consultant, the study provided taxis to the hospital and he got much closer follow-up than normal patients.

Flop

[hollie]

That's the other thing that upset me... Last year when signing up for all this, I was told they would cover food, mileage and hotel bills plus some just for coming and doing the research. I haven't seen anything or heard anything more about it. I asked last year and no one knew anything about it. I finally got an answer from someone, but I had to do the digging. She said I had to wait until the "project" was over to make sure I kept coming back. This could be a few years. That's OK... I understand that... In the begining, they just made it sound like I would get paid right away. This year, I was told I would go in for testing in the morning and then, after the doc had time to go through all my labs, tests, etc... THEN he would sit down and meet with me (in the afternoon) and we could discuss any questions he had for me and any I had for him. I was given the impression that he would help me for helping him... The communication is lacking - weather it be between me and them or between them.... Like I said, now I know what to expect next time.