Does It Ever End

[tinkerbella]

Hi morgan and firewoman,

I just want you both to know your in my thoughts and prayers still. I can relate to a lot of this as I lay in this bed of mine today. I was scared to death when they told me I had diastolic dysfunction, and not enough blood to pump in my body.

(a stiff heart, was what he called it ) that was even before I knew I had POTS. I kept having one thing after another go wrong with me. This is only part of it, the gall bladder with 80 stones, colon polyps that were ca, uterine lining with pre-ca cell, wouldn't stop bleeding even on meds which. made me sicker, but I can't have surgery, then they did a deep D & C and thankfully I've been OK. If I start to bleed again Im in trouble. Now the back is got tears and buldging discs can't be seen at the spine clinic till june.

Mother's Day I started with not being able to breathe really bad with exertion. Lasting a good 10 to 15 mins with heart rate so high and BP dropping so low.

this happens all the time but not like this and not this long. It happened again at hydration yesterday only BP went very high and they called they doc they were so worried and slowly watch the hr come down.

They were afraid of congested Heart Failure, my thyroid being off,(it's already hypo) and a few other tests I need to google but have been too tired. All came back normal and in the meantime I started vomiting while there. My heart was bounding and they retook my vitals and I wanted to say you need to wait 5 mins in between postural signs and I know the nurse wanted to get the heck away from me, as I could hear them talking that they thought I might have the swine flu. (but calling it the new name I can't remember)

Doc said it's her POTS and let her go home. I was going to email him today or tonight just so tried and not sure what he can even do for me as he wants to do an ablation and pacing and I don't want to have that done. From what I've read I've gathered that people have had some bad luck in that area and once it's done there's no turning back and then you have another set of worries.

So, I'm buying time and trying to educate myself as much as I can her Had dr. appoint today and forgot to call cab in advance. Too weak to do anything at all. All I know is I can't live like this doing nothing, living in a mess and being all alone most of the time. Every time I try to exert my self I feel like my heart is going to jump out of my chest and I'm going to pass out so I either fall of drop to the floor, sit, or lay down.

I try not to live my life in any fear anymore. My mom is 89 and she always said, "There's nothing to fear, but fear it's self!"

May all of us who are being tested right now find some answers, relief, and the best thing of all is friendship.

~~Blessings and prayers to all~~

[Rene S.]

Oh Morgan, I am so sorry for your troubles. I know how frustrated you must be. And gallbladder pain is awful. I had mine out the year after my daughter was born (20 years ago) I was a guinea pig, one of the first in PA who had it done laproscopically.

So sorrry about your financial woes. Can relate to that one as well. Divorced, forced to move out of my lovely home into a townhouse which I still can't get used to.

As for as the ER, well we all know how that goes. It's as if you're a non entity.

Just know that I'm wishing you well and hope things change for the better, and by now you had the pain meds that you need. So very frustrating.

Hugs,

Rene

[pearsjon]

where are you at w/ gallbladder morgan? are you winning? i bet you are. i am scheduled for another US to make sure it is a polyp. and w/ size and the fact that there is only one, malignancy predominates. so, after this next US, i guess i will be off to surgery. what was funny is, he asked me what i can't eat. well, w/ my busy life i have never sat down and said "oh, it must have been the ice cream i ate", so my answer was nothing spicy. i know dumb answer. but i always get brain frog when put on the spot. anyways, he says he doesn't think it will show the polyp again (cause they are rare). pray w/ me he is right. he asked if i could eat fried chicken and i told him i wasn't sure anything would stop me form eating that. he said if i have to have the surgery (which is mandatory if the polyp is still there) i would be eating fried chicken on the toilet.

so in saying all this morgan, i hope you are having better luck than me. or at least i would like to know how you are and where you were at w/ it.

taking care of yourself i hope.

[goldicedance]

Oh, my dear Morgan....

You have so many things on your plate and now the gall bladder poops out on you.

First, be sure that you are hospitalized a day before and after the surgery. You need to be very well hydrated.

Re: bankruptcy - perhaps the court can readjust the amount given the lack of overtime income.

Please feel better. Minus my gall bladder, I still have digestive problems.

What is chole syndrome?

Lois

[morgan617]

Sorry guys, I thought this thread had disappeared awhile ago and haven't been on to see that it's still here. Thanks firewoman.

The bankruptcy went ok, I guess, really don't need to discuss that except that I can't get the surgery because of it.

When I got my pacer, I was never charged anything. I assumed it was because I was an inpatient, so my medicare picked up the balance after Dave's insurance. Not so, as it turns out. We had just met our 4000 a year out of pocket catastrophic and all was paid by Dave's insurance. medicare has not paid one red cent for anything I have had in the 6 years I've had it.

So, I had my surgery scheduled for yesterday. It should be done. But I found out this other stuff last week and had to cancel, because they want the money up front. Well if we had thousands to spare, our credit wouldn't be bad, now would it.

So, I am patiently waiting for it to rupture, or cause liver or pancreatic failure. No one has even retested my liver enzymes since this all began.

That's where I am. A dark place, the one time I have something they can do something about, they won't because of money.

Lois, post chole syndrome is a problem a fair number of people have after having their gall bladders removed. Since there's no storage for the bile anymore, it tends to release much faster into the system. it can cause diarrhea and sometimes you get a mimic of the pain you had before the surgery. You can get spasms in your bile duct or it could just be damaged from having the bad gb to begin with. These symptoms will almost always clear up, but for some people it can take up to a year or so. It tends to be more of an annoyance than like what you feel with the really bad gb, but it is bothersome.

Dave had diarrhea for about 4 months, but it was food related, and a friend did go about a year, but both still say they wouldn't go back and not do it again, it's still far better than having the thing in there. They do have some meds that really help quite a bit with these problems if you have them. They are far more careful about making sure you have no stones or grains left to cause problems afterwards. As far as post chole pain goes. The biggest thing is the loose stools, which of course, if you have pots, sure doesn't help.

Anyway, I just want to thank everyone for their kind thoughts, and I am such an eeyore right now, it's just better for me not to be posting. I am unable to take my potassium like I should due to nausea and that's not helping things at all either.

Firewoman, I hope they get to the bottom of things for you and you win the bet. So you can feel better soon. Thanks again everyone...morgan

[firewatcher]

After my gallbladder was removed (it didn't eject anything--pink and perfect and utter useless!) I had diarrhea after fatty foods, which was a huge surprise for me! The first time it happened I was on the playground with my little boy after eating out (fast food...bleh!) It's been almost nine years now and fatty food is still a potent laxative! But then cheesecake tastes a lot better than Milk of Magnesia! Good luck with everything!

[rymac]

Morgan

This is sad news. I'm still thinking of you.

[juliegee]

Breaks my heart too. I cried all through "Sicko" and am again for you. So wrong.

(((((Morgan)))))

[firewatcher]

Morgan, How are you today? I am sorry that I did not read your last post carefully enough. Once this "becomes an emergency" don't they have to do surgery regardless of your ability to pay? Wouldn't this constitute "an emergency???????" Hang on, please, hang on! The pain is nothing compared to the emotional trauma they are putting you through!

[tinkerbella]

MORGAN,

my heart goes out to you and i have just prayed for you. i just don't understand something, when ever I'm scheduled to have surgery they ask to you have any financial concerns or worries. all hospital have set aside money for people who have hit rock bottom, they have so much per year . you talk to the hospital social worker, this is serious do you want your son to lose his mom, and your husband to lose his wife. stop all the drama and direct it towards help sweetheart. everything can be worked out, do you belong to a church, an elks club and even many other organizations help people receive free care when they need it. out here it was called HILL BURTON, at the hospitals or was in the past. THEY STILL ASK EVERY TIME. I haven't had to use it in 15 years.

It's as application for additional help. I have had to let go of my ego a long time ago, and ask for help even when I had insurance and could no longer pay. You are not talking to the right people. I'm saddened to say this sweetheart, you need to take charge now. a long time ago, when i was dealing with lymphoma and had no money and a huge bill came. one kind man took me aside and said, "Bella, everything is fixable, you never have to worry about things like this." I said, "I wish I had met him years ago." I live with that attitude now. Please go talk to the right people before it's too late morgan. people love you here, but our hands are tied.

I was so sick after mine came out, I wrote my story earlier and didn't know I had pots. thought for months I'd never leave the house again and ended right back in again.

Blessing that you find the right guidence and help at this difficult time.

Bella~

[morgan617]

Sorry, last post on this. My sister will not leave me alone. She is paying the out of pocket and I am rescheduling tomorrow. Will let you know how it goes. Thanks all for your support....morgan

[Sunfish]

you're in my thoughts & prayers mama morgan!!

i know it must be terribly hard to avail yourself of your sister's generosity but - for your sake - i'm so thankful to hear that she's forcing it upon you. and in the end what is family for, no? bottom line being that i'm thankful you're on the schedule & look forward to hearing that you're resting comfortably (relatively speaking) in recovery. i'm saying extra prayers for minimal crazy happenings during your hospital stay too - healthwise & otherwise (i'll leave it to the imagination.....many of us here know you've had MORE than your fair share over the years ) - and hope that you are treated as superbly as you deserve.

bye bye icky gall bladder!!

melissa

[pearsjon]

not last post morgan, cause your winning now, and I want to know how you are doing. you tell your sis that i am glad she has the means and the pushiness to do this for you. cause in my family i am hte one everyone comes to. and it is never an emergency such as this. AND, i want you to feel as lucky as you should that you have that sis. there are lots out there that don't.

take care and (not allowed to curse) but you better let me know. i am in your boat too. and i don't want to sink.

i am praying for you as well as my parents (told them about ya'), sandra

[juliegee]

Not the last post by a long shot ! My prayers are answered. Having been there....had to wait a month.....wasting away in pain & nausea- I knew you couldn't hold on much longer. You'd do the same for your sis & may even get the chance one day. Life's funny that way .

I'm still praying for an uncomplicated surgery, easy recovery, financial recovery, etc. Keep us posted- we care. you can't help but feel the LOVE.

Hugs-

Julie

[Rachel]

I'm so glad that you will be able to have the surgery. Good thing your sister was stubborn about it.

I hope all goes well for you.

Rachel

[pat57]

Yeah! ----------And Hooray, for your sister.

[yogini]

That's awesome. Go sis! Who knows, maybe insurance will even reimburse her after the fact. Let us know how your surgery goes.

[tinkerbella]

May the lord hand pick a team of Doctors to take special care of you.

May you have a speedy recovery!

And Praise the Lord for your sister's kindness and intervention.

Blessings on all of you!

Amen~

BellaMia~

[rymac]

Good news.

[MightyMouse]

Hang in there Morgan--I hope you get some relief. Personally, my gallbladder was completely useless as well--my ejection fraction was below 30%. When they took it out (Teri was in the surgery assisting), I'm told is was so small, about the size of your littlest finger. Normal is the size of a small banana. Mine had lost all it's tone (dystonia). Hopefully after your malfunctioning naughty gallbladder is removed, you'll be able to have comfort again.

Nina

[juliegee]

Mine was wrapped in layers and layers of adhesions. My surgeon gave me photos. I think it gave up years ago & my body giftwrapped it for him