Hydration issues and MAYO

[Jenn202]

Hi Guys - I havent posted here in a while. Been back to Mayo, along with enjoying the summer, and my newest problem , fighting a bad virus that my husband and I caught...... but I have been reading posts on and off when I had the time.

Anyway, I was hesitant to post about Mayo again, but after reading the post about Thirst and hydration I needed to vent.

I saw a Dr. this last visit... I think some of you know that I had been seen by Dr Grubb who diagnosed me with the hypermobility, explained my thirst and hydration issues and how they were connected etc...he was wonderful.

I went to Mayo for a confirmation of these things... Big Mistake.

We flew all the way out there for a doctor to give me a total of 25 ( MAX) minutes of his time.

He told me that I had POTS but that he couldnt do anything for me, he basically acted like I was wasting his time and there were REAL sick people that needed to be there.

And that I was just drinking too much liquid in a day and needed to Urinate less in my day.....

I told him I have run the gamit of not drinking to severaly limiting fluid, to drinking what I needed, to increasing/decreasing salt intake... but it didnt matter my body could never keep its balance...

He just kept repeating " you need to put out less urine in the day and drink less"

No matter WHAT I said that is all he would respond.

My husband finally got REALLY mad and said " SHE JUST TOLD YOU MANY TIMES SHE DOES DO THAT"

His response " you need to drink less water and put out less urine"

I told him Dr Grubb has Diagnosed me with hypermobility. And he said no you dont have that, and I'm not intersted in that theory. Never even tested me or anything,

My husband then grabbed my thumb and pulled it way back...he never said a thing.

He then handed me my records without saying a word and got up to leave,

I said to him " I am so Sorry we have travelled all this way, took time off from work, and spent money to waste YOUR precious time" He gave me this "robotic" type look but said nothing and left the room.

In the last 10 years I have seen about close to 40 specialists or more. I put this doctor in the top 3 of the worst I have ever encountered.

It was a pathetic waste of my time, and I would love to punch him as hard as I could for his attitude.

Now I just recieved my write up in the mail ( I called patient advocate and told them that they were not to send any records anywhere but to my home)

In His write up he says that on my tilt it showed POTS, and I was dehydrated,

Then he also says that I have hypermobile joints... funny since the only way he would know this is b/c my husband bent my finger way back.

Then he says that I need to limit my urine output to no more than 3 liters a day ( OK KIDNEYS CAN YOU HERE ME NO MORE URINE OUTPUT!!!!)

SO he says I am dehydrated in one sentence, have POTS, but that I drink too much and that I need to stop that, and put out less urine in another sentence. and that this is NOT his area of expertise... That people with dysautonomia do not have these fluid issues!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The comclusion was that my Lyme disease had Caused problems with my nervous system.

Which leads to why I am now posting about this experoence... I guess many of you DO have this problem from the responses I just read.

Sorry guys.. I know there are those of you who have gotten help from mayo.... I dont mean to step on toes which is a big part of why I have not posted in a while...

But I also needed to let it out somehow....

I am moving on emotionally, and focusing on my Lyme treatment for now... I cannot start the mestinon or anything else while I am playing around with abx disages b/c I wont be able to tell what is what. FOr now I am doing compression, fluids and salt. An of course I have to tell those Darn kidneys to just stop peeing so much!

Anyway, I truly hope I did not offend those who like mayo... this was my personal experience with the clinic in general.

I hope that everyone is having a decent summer. The heat in CT has been unbearable. We actually returned from vacation early this week b/c of the heat, and us not feeling well.

anyway if its as hot where you are I hope that you are finding relief in the AC and keeping well hydrated. Take Care.

Edited July 20, 2005 by Michelle Sawicki

[steph37822]

oops

[MightyMouse]

That whole ordeal sounded quite frustrating. You may want to file a complaint with Mayo, via their patient advocate department, outlining the experience you had--even if they do nothing about the complaint, it may help you feel some sense of completion to the whole ordeal.

Nina

[Sunfish]

jenn-

i can't even imagine your frustration....i think i would have burst! it so saddens me that situations like this arise, particularly at a place where so many seek out guidance for autonomic issues. i second the patient advocate suggestion...some on the forum have gotten decent responses from various centers/hospitals & while it doesn't erase the icky experience it's something. i am so thankful that your husband was with you & is behind you all the way. and yes, i find the hydration directives, or rather contradictions, VERY confusing.

hoping you get some better direction soon.

keep on keepin on,

:-)melissa

[Ernie]

Hi,

I am sorry you had such a terrible experience at Mayo. What a waste of time and money. I hope you will manage to get out something of that trip. I am so disappointed for you.

Ernie

[Jenn202]

Thank You Steph, Ernie, Melissa, and Nina for your support. I do appreciate it.

I was working with a patient advocate from my first experience, but he did not really do much. I would LOVE to get reimbursed for the 2 trips out there though...just dont know hwo to go about doing that. The trips really put a strain on us finacially as well as emotionally with all the worrying and hope of getting help that never happened.

Anyway, I am glad I have good Dr's in my Corner, especially Dr Grubb. I am SO thankful I saw hiim before this ordeal... Seeing Dr Grubb gave me the strength to deal with this mess.

I also have a supportive Lyme Dr that understands ANS, as well as a good ANS Dr near me so I will move forward.

Steph I think your right about the research thing. I did not fit the perfect profile...I had a messy scenario with my Lyme Disease and everythign else and they did not want to get involved.

I feel I have dome all the testing, seeking out I need, and Will no longer go searching... I feel satisfyed now that I have the info I need to make good health choices.

If nothing else the bad experience at Mayo sealed the deal that I DID Have all the best testing and advise already. Guess if I had not gone I would still question myself and think "what if"

Anyway, have a good night guys and thanks again

[DancingLight]

first, can i just say...that kidney thing...yeah, okay whatever!!! um, last night i had a horrible night and i am not even exaggerating when i say that i peed 30 times in six hours. and, like i had control over that! next time, i'll try just telling my kidneys not to put out so much urine! oh good grief!

anyway, on a more serious note...i was really starting to wonder how you were and if you were okay. i was going to pull back up the lyme post and update that topic and see if you 'popped' up! so, i am glad to see you post. but, really, really sorry about your disappointment...the trip to mayo. i know we talked earlier about your need to do this trip for the closure...and it sounds like you have already started to put closure on it. you have used it to your advantage to focus your health energy where you most need to...on your lyme treatment, your lyme doc, etc. so, that is a positive out of a miserable experience. i am really sorry for this experience...and i just wanted to let you know that i am thinking about you and was grateful that you updated us on yourself...

emily

[Jenn202]

Thank you Emily for your support!

I think we all need to give our kidneys a good talking too!! LOL

Anyway, I can put some closure on Mayo..its over and done with and I have some good Dr's so I dont need their opinions to make me feel complete...

I hope you are enjoying your summer and have been able to get out and about a bit!!

[Sophia3]

Jenn

I am so sorry of your atrocious treatment from the horses *** of a doctor. The arrogance of such a man is STAGGERING.

Many of us, including me, have times where we literally can pee every 10 minutes. OFTEN, I awaken to empty a full bladder...get back to bed and in 2 minutes realize I have to go again and there is a lot more to come out.

My answer was DDAVP since I am OBVIOUSLY low on the ADH (anti diuretic hormone as you COULD be though I am no doctor) Many POTS patients with "diabetes insipidus-LIKE" symptoms benefit greatly from DDAVP taken PROPERLY.

I can NOT believe it didn't enter that so called SPECIALIST head that you could benefit from the same thing. It's not like will power or mind set to lose weight. We CAN"T CHANGE OUR KIDNEY OUTPUT (aside from the obvious to cut back on caffeine) But still, if your ADH is messed up you will NEVER KEEP the electrolytes even and either stay dehydrated or be on the verge of it.

I would say more on this subject but there is really nothing to add except I think you should post elsewhere (not this site!) this doctor BY NAME so others don't waste their time. This is MOST INSULTING to you and other potential patients.

This isn't the place to point fingers by name though I personally think it's ok.

However, I have also heard high praises and high insults ABOUT the same doctor by different patients...so these guys must have split personalities or run out of "Nice and compassionate" juice for the day.

I wish you better luck. SOON.

[goldicedance]

What a strange world we live in!!! Like we can control our bathroom visits. I have been given mixed signals with regard to DDAVP. An endocrinologist in Washington who is an expert on diabetes insipidus says one shouldn't use DDAVP to control urination unless you have DI. Another endocrinologist says use it in a pinch--i.e., numerous trips to bathroom at night with no end in sight. A nephrologist who has no problems with the use of DDAVP. A Mayo neurologist who says to use DDAVP in an emergency, not on a daily basis.

Finally, do you notice that when you are up and about that you are not urinating as much? But, as soon as you lay down, the faucet opens? That sometimes is my problem. I have been told that my body tries to retain fluids to keep me up and about when my blood press falls. On the other hand, blood pressure rises when you are supine. Hence, the body tries to rid itself of extra fluids.

Who can we believe???!!!???

[Jenn202]

I agree WHO can we beleive?????

I think we all make more sense than any of the so called specialists with our experiences.

I was put on DDAVP for about a year 1/2. At first it worked wonders for me , but as time went on it stopped working and actually made my electrolites more of a problem.. So I stopped it about 4 months ago.

I am the same in that I usually pee the most at night, but will put out normal urine during the day. Thats a great theory about our bodies trying to retain fluids while we are upright! It definetly seems the minute I fall asleep is when the faucet starts!

Although I do have days where I will go frequently all day.

I also have issues with fluid retained in my tissues on and off.

One thing I know for certain is that I have more knowledge of myself than any Dr could ever give me, and I am thankful for the handful of Dr's who have cared and helped me through the years... I guess we just have to "throw out" the useless ones.

[goldicedance]

Jenn, You are right about the "toss." Regarding the nighttime situation: I would guess that the most output came within the first hour or so of laying down. Sometimes for me it is like "why bother going back to sleep if I am just going to have to get up and go to the bathroom." Electrolyte imbalance is one of the big problems with DDAVP. Finally, I would guess that, like me, your symptoms are worse by the time morning comes given the fluid loss that occurred that night. Have you tried drinking a V-8 before you get out of bed or drinking caffeinated coffee or both? The erudite doctor at Mayo also suggested "self-infusions"--glasses of cold water.

[Roselover]

Oh Jenn,

Wasn't this your second visit to Mayo? Wasn't this your long awaited visit with Dr. Low? OK maybe we shouldn't be naming names... but I'm so sorry. I know you debated whether you should even go back or not. I was turned down by Dr. Low because he was too busy. My doc tried to call him for weeks - even left her home phone for him and never heard from him. Thus, I'm heading to see Dr. Grubb instead and fell really good about from you and all the others who have shared their experiences. Sorry you had to go through this, but thank you so much for being willing to open your life and share with us!

~Roselover

[Jenn202]

Yes this was my second trip to Mayo. although I cannot publicly post who I saw there.

Dissapointing to say the least. I am SO happy you are seeing Grubb!!! Great great choice....!!!

Goldenstance _ I have never tried the V 8 juice in the morning... Not a bad idea. I usually drink a glass of electrolite water with a salt tab when I wake up before I get out of bed.

[morgan617]

I'm gladder and gladder I got rejected......