Considering all that she has been though recently, she can really use all the support we can muster...

Thanks in advance.

Much love, Melanie

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C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]
 

She is strong and will recover that I have faith in. Big prayers and good thoughts going her way. Always.

Cathy
 

------------------
oops!
Lymetutu

 

Sending lots of support & good thoughts.
When you have a chance, let us know how you're doing.

I hope that everything went well and that you start to feel some relief from the current havoc the line has caused you.

Be good, be strong, and get well.

I just also wanted to comment on Griswold girl's comment bout Betsy helping out. I thank you for telling her that. there has been a recent slew

of horrible people that have not even so much as said THANK YOU to this woman, but instead have made a jerk out of her instead!!

I have been there, done that ( and still have it going on) and its rather rude

so thank YOU FOR actually thanking Betsy.

 

--Annie

------------------
``The best way out is always through.'' -Robert Frost
 

The limo will be by to take you out for a day of normalcy.

Where would you like to go? What would you like to do?

Just take a mini vacation in your mind.

Hugs,
Katherine
 

I have known very few who work so diligently at helping others to find answers or to offer special support...even though she is probably one of the most ill among us...

She has such courage in the face of every adversity, and takes it all with grace and inspirational strength that is always contagious to me and the countless other lives she touches so softly.

NE is most definitely one of our many unsung heroes here at LymeNet, but is also a tremendous help on other boards and behind the scenes...

When I was going through my most difficult times, she was always there for me...to hold my hand...share my tears...do unending research...and lift my spirits back to where she knew they should be.

I feel blessed to know her and her precious family...

NE, we all love you, and are praying for the most heartfelt recovery for you!

M

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C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]
 

I hope everything went well. You are such a great person and so supportive to others.

We are all here for you.

Sending a BIG (careful) HUG!!!

Jordan

------------------

 

My thoughts and prayers are with you..I hope everything went well for you today..

Cathy
 

I would like to send some of my "Good Energy" to support you through this day. I am hoping that just by knowing that you have so many fellow Lymies that truly care will make your day a bit brighter. Thank you for all the support that you give to others. I do appreciate it so much!

Cheers!
Jeannie
 

I'll write more later but the whole procedure went very badly, I'm lucky to be here though. But I am in pain. There's a mixed message!

I promise to write when I can think and type better.

Thank you all - you are so special.

 

Take good care of yourself & let us know if there's anything we can do for you.
You've done so much to help others...now it's your turn.
Sending lots of love, concern, & support.

Will keep you & your family in our prayers!!
God bless!!
 

I just hung up with our Betsy...and she did indeed have a terrible time today...all 10 hours in the hospital!!!

She is home now and resting finally, but may have to go back into the hospital in the morning depending on what she can find out from her docs.

During the port removal...she was in severe pain despite the anesthesia, and began to crash. Her pulse rate was below 30 and they had to put her under deeper as they worked on her. As soon as the port was pulled, her vitals came back up into a somewhat normal range.

She awoke to the pain of a nurse scrubbing the port site after the removal, but the nurse and docs in attendance didn't seem to understand the severity of that...since she was basically unable to communicate what she was feeling.

They then took her to recovery, and there she found out about the problems that were involved, but couldn't get any real answers from the nurse, besides what she overheard, and the orders that she was to stay with Betsy and watch her closely.

They tried several pain meds including morphine...which helped some, but didn't relieve the sore area of the surgery or a NEW onset of a severe sharp pain that had set in.

The new attending nurse who was very sympathetic told Betsy that this new sharp pain was definitely NOT normal...

Her surgeon was then alerted, and basically passed the buck to Betsy's primary. The surgeon wanted her admitted for overnight monitoring, but didn't have the authority to do so without her primary's consent.

Hours went by, and her primary finally returned the many calls and pages...ordered more pain killers, and said to send her home. Basically relaying that it was all anxiety related.

Now, I KNOW Betsy very well, and I also KNOW that she can and has endured much pain with her TBDs and several other related problems for years...despite all of this, she pushes on and rarely complains.

This is NOT anxiety, but, an injustice on the part of her now former primary.

At least the last compassionate nurse sent her home with mega pain killers so she could get some rest overnight.

We have no idea what this sharp pain is that shouldn't be there, but she will do her calling of docs in the morning to try once again to find some answers.

Thank you each for your prayers today...they were most certainly needed...
And PLEASE, continue to hold this dear one in your thoughts and prayers through the night and into the morning...

Love, M

Certainly hope she can get some answers tomorrow.
As bad as she feels, it's so sad that she has to be the one to try to get to the bottom of all this.

Want to help her, but I'm so far away.

Melanie, sending a BIG THANK YOU for the wonderful support you're giving her.
You & Betsy are true LymeNet Angels.
Love you both!!
 

I'm new to lymenet, but I have Bets to thank for getting me here. I met her on another board, and her strength and courage just amazed me. She has been such a big help to me, as well as a wonderful friend. So indeed a BIG THANK YOU Bets for all that you do!

I'm sorry to hear things went so badly for you today. I'm sending up prayers for you in hopes they can figure out what's causing your pain and most of all give you some relief. If there's anything I can do, or if you just need a friend, remember I'm only an email or call away.

Thinking of you as always... and sending many HUGS!

Love,
Bel
 

------------------


 

Anyone who didnt know - this whole port/heart issue has been awful since the port was put in in Dec.

I appreciate all of the support I've had this whole time - I know this will pass and your prayers have and will help immenseley.

Thank you

 

I sure hope she is doing okay--pain is pain and anxiety is anxiety damn ducks!!!!!!!!!!!!!

Big prayers and good wishes from our family to hers

Cathy
 

Id like to shove an 8 and half up his arse and ask him "HEY HOWS THE ANXIETY?"

One of these days anger management is going to pay off for me.

How ARE we doing today, betsy?

Post his number when you get better.

Or better yet, email us his number privately and we will delete the emails afterwards so there is no evidence.

And I'm SOOOOOOOOOo not kidding.

I'm just glad you survived! It's just terrible you were in such pain and still are in horrific pain.

We are thinking of you. Let us know if you need anything!
 

Im so sorry things went so wrong for you. What an awful experience. Im happy they at least gave you some pain meds.

I hope you will be feeling better soon. Rest and let your body heal.

Melanie:

Thanks for letting us know what was going on with Betsy. Its unbelievable how things can go so wrong.

Your in my prayers Betsy!

Jordan

------------------

 

She has several calls into the docs who CAN admit her back into the hospital...but hasn't heard anything back as of now.

Her primary still refuses to admit her...
Our LLMD is out of the country, but his nurse is trying to reach him to at least have him call on her behalf...
Her IV doc can admit, but hasn't returned the calls or pages yet...
The surgeon will be called shortly to be informed of the complications to see what he can do...

What a mess!

Her husband just arrived back home, so at least she now has some help with the phone tags.

Please keep the good thoughts and prayers coming.

I will update you all as soon as I hear anything new.
M

 

Sorry to hear about your experience, i had a very similar one when i had my first mediport put in, they did not numb it enough and the music was loud and they couldn't hear me saying it HURT!!!!!!!
not a good situation that is why i was afraid to have the next one put in, they knew my fears and sedated me enough that i knew or felt nothing. the side you had your port taken out is your arm swollen? if it is don't let it go, that needs attention i didn't say anything cause i thought it was due to the surgery, but i know you read my previous post where i said ii ended up with a clot.
well dear i am pretty new here. I hope and pray you will get better, God will give you the strength you need to get through this,with all the prayers he will help you ,I know there were times i didn't feel like praying cause i was so sick my pastors wife said that is why god put other people in your life so they can help hold you up right now. you have alot of people who care about you on this net and prayers are going up, please hang in there, i hope you get through this soon.

karen

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waiting and praying for a miracle
 

I will continue to have you in my prayers. As each minute of the day goes by I pray that your pain will become less and less and that you will feel our strength guiding you.

Melanie,

You are truly a special friend, blessings like you don't come along everyday. Thank you so much for showing us all what compassion and true friendship is all about. You warm my heart.

Cheers!
Jeannie

 

Just saw this thread - thinking of you and hope things are improving and that you're being taken seriously.

DLL
 

I still have nothing to report and the pain remains as bad as ever.

Thank you all again and I will try to update later - thanks melanie for the updates and everyone else.

love,
betsy
 

grrrrr I'm beyond frustrated with the care you are (not) getting. This infuriates me, but sadly, doesnt surprise me. You've been through sooo much that this is the last thing you need. I wish there were something we could do.

I am visualizing you pain-free and sending smiles and healing energy your way. Envision a warm healing light all around you. breathe in the light and when you slowly exhale, feel all the pain and suffering leave your body.

There are many people who love and support you - You'll get through this! XOXO
 

Sunra - maybe the healing energy woke me up, ha ha.

Pain is really bad - will go to ER today (promise to those who have called )

You guys are awesome - By the way, i would like to hear more about the blood clot and what symptoms you had - (annetsky?)
thx
love
betsy

love,
betsy
 

I urged her to do this yesterday at the advice of my ER RN frind...but, she didn't want to frighten the kids with an ambulance ride.

NE...PLEASE let us know how it goes when you can...I will be thinking and praying fr you all day...and calling, if I don't hear anything soon!

Much love, M
 

from my mediport being in so long almost 4 years when they pulled the port apparently my vein clotted, i had alot of pain when they took it out and then as time went on my arm doubled in size compared to my right arm and was very painful to the point i couldn't sleep i rubbed it cause it hurt so bad, i went to my dr who did no tthink it was clotted but did a venogram anyway, they did find a clot and i was admitted for hep. therapy. they tried to remove the clot 6 months later and was very unsuccessful after 2 hrs of working on it. i still have swelling in my left arm that will probably never go away. I am on coumadin every day.
If you would like to email me it is [email protected] Ihope you are feeling better

thanks karen

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waiting and praying for a miracle
 

from my mediport being in so long almost 4 years when they pulled the port apparently my vein clotted, i had alot of pain when they took it out and then as time went on my arm doubled in size compared to my right arm and was very painful to the point i couldn't sleep i rubbed it cause it hurt so bad, i went to my dr who did no tthink it was clotted but did a venogram anyway, they did find a clot and i was admitted for hep. therapy. they tried to remove the clot 6 months later and was very unsuccessful after 2 hrs of working on it. i still have swelling in my left arm that will probably never go away. I am on coumadin every day.
If you would like to email me it is [email protected] Ihope you are feeling better

thanks karen

------------------
waiting and praying for a miracle
 

------------------
waiting and praying for a miracle
 

I wish so badly that I had something more positive to report from her...

She went to the ER this morning and returned after 7 hours of waiting and wondering who would listen to her.

A Chest X-ray and Sonogram were preformed...normal.

She was hooked up to the monitor while there, and noticed that her pulse dropped several times into the 40's...but, SHE was the only one who noticed! Basically, she spent the day alone and in pain.

They called her primary AGAIN...even though she did NOT want this to happen. The primary said to send her back home with more pain meds.

The surgeon who wanted her admitted yesterday was called; he was unavailable, so his partner deferred to whatever the primary wanted.

An EKG was performed, but apparently was normal too.

The last nurse in attendance basically didn't know WHAT to do, so rushed to get Betsy out of there.

Our LLMD's nurse advised Betsy to get to a general surgeon, but, being the weekend...there wasn't a doc who could refer her to one.

Betsy's pain level remains the same.

It is at the site of where the port WAS, NOT at either incision. Her chest and arm have become somewhat swollen overnight...she believes she is retaining fluids there, and the pain shoots up into her neck, and down her arm.

Thank Goodness, she already had an appointment with her cardiologist on Monday, and with her ID on Tuesday...so, perhaps, something will be done then...at least that is what we are praying for.

She is home and trying to rest...taking percoset, and other pain meds to at least be able to sleep through this ordeal. (we did a drug interaction check to be sure this was OK)

Thanks to each of you for your continued prayers and words of encouragement.

Melanie

Can't believe their attitudes & apparent lack of concern for her.

Next time you talk with Betsy, tell her we're all sending healing thoughts!!
Also, lots of love & support to her & her family!

And Melanie, take good care of you!
 

Still no relief in pain/discomfort - so i appreciate the prayers.
love,
betsy
 

Betsy, prayers headed UP for you! I sure hope you get some relief soon!

gg

------------------
oops!
Lymetutu

 

Am starting to run a fever - maybe that will open someone's eyes.

thank you guys again - its so hard to type but i wanted to update everyone who has been so supportive.

------------------


 

I just seen this post and I'm so sorry that you have to go through this.

Is it possible to go to a different ER?

I'm praying that you will get help soon.

------------------

 

these were two separate hospitals - I think though its a good point - go farther away another hosp.

i'll see after today and tomm. dr. visit.

Thx.
bets

 

Just came here to see what was happening with you - I hope you get something out of today doc visit, and tomorrow.

Keep us posted if you can.

DLL
 

Hoping for the best.
 

How are you doing today?

I've been thinking & worrying about you.

------------------

 

One of us will update after her cardio apt today. Please keep the well wishes and prayers coming...

Thanks so much,
M

------------------
C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]
 

At the appt today, I hope that the cardiol. will see what you're going through & work on the problem.
If not, tell him you aren't leaving until you get proper care.
This has gone on too long.

Will be anxiously awaiting a report from Melanie.

Melanie,
Thanks again for all the updates.
This is truly an example of one
"LymeNet Angel" looking out for another "LymeNet Angel".

Lots of love to both of you!!
 

thanks to all of you, you are incredible - Melanie is an angel.
love, bets
 

I'm new at this...this is my first post. However, I am not new to the pain of Lyme disease. I am sending heartfelt prayers to the Big Guy that the pain will soon be gone and you will be feeling better.
 

So sorry to hear you are in such pain!!!

I have been so caught up in getting Derek to all his doctor appointments that I haven't been here in over a week...

So I am just now learning about all of this...sorry I wasn't here earlier to offer you support..

I have just said a prayer for you and will continue to keep you in my thoughts and prayers!!!

And a big thanks to Melanie for all the updates..you are a gem!!

Hugs,
~Missy
 

Pain is still relentless - i'm gonna stick w/cardio's plan if possible but really want to know the cause.

thank you all again.

[This message has been edited by aaronkatie (edited 22 June 2004).]
 

I'm so sorry that I haven't been around much and missed what has been going on. I just want you to know that I am thinking about you and I hope that you are feeling better soon.

Lots of hugs are being sent your way!

frenchbraid

------------------
Stay positive. Smile. People care.
 

Today I saw the Inf. Dis doc (he works with my llmd) and he agrees w/the cardio. that my body probably is reacting to a foreign object in it - unfortunately since i have had trouble with it since last Dec. when i got it, pisses me off.

We will see if the meds, ice, rest, etc will help - if not new plan of attack from there.

I can't thank you all enough (especially Melanie!), your words and prayers have gotten me thru this.

love,
betsy

love
karen

------------------
waiting and praying for a miracle
 

please email me privately with lymnet in title and send me your phone #...

I will do everything in my power to contact you either today or tommorow;

I've had 3 surgeries in the past 4 months plus small stroke and pulmonary embolus and very bad probelms with the ports..

email me when you see this

Sincerely,
Regina
[email protected]
 

I tried to do something cute with the smiley faces, but they wouldn't let me!

Feel better!!!
 

Exactly the same think happenned to me 2 years ago.

Port was pulled out day before my out-of-state hospital stay (didn't know about LD yet). I was told it's anxiety! It felt like beeing hit by a truck and feeling really strange.

I flew home from MI to CO. Emergency landing in Denver. University hospital released me with pain killers.

In 2 weeks 5 more ER visits, my friend begging them to addmit me. No way. More pain killers.

On day 20! my BP (75/30) finaly got their attention. By them my both lungs were filled by 70% with blood clots!(VQ scan)

Best part of the strory, as we always need to laugh: duck yelled at me that I didn't seek medical attention sooner!!!

Laugh #2: As blood thinners don't work for me the same duck released me after couple of days from hopsital, as the chance of dying from clots in the hospital is greater than at home!!!

I hope you find out soon, what is causing the pain. Please, hang in there. I'll pray for you, so one day we can both laugh about stupid ducks together.

I'll be checking on your progress.
Punkie

------------------

 

The pain is still ridiculous and the spot where the port was is bigger than it was when the port was in which doesnt seem right.

Punkie, other than pain what symptoms did you have? where was the pain? I'm sorry i didnt read all of the posts, I appreciate each and every one of them and will get caught up once I feel a bit better.

Thank you all again.
betsy
 

I'm so sorry to hear you are in so much pain,
I hope you will be feeling better soon. Sending healing thoughts and prayers your way.

That was the most difficult to describe. I knew something was seriously wrong, but could not say what.

Mostly I felt like fainting, couln't eat due to nausea, had difficulty breathing once in a while. The port spot(2 years in use) got much bigger - swallen, reddish, but I had normal sedimentation, so infection was ruled out.

I had no BP or Oximeter at home, but now I know my BP and oxygen was very low. Getting to ER was so exhausting, that these measurements got higher when I got there. My heart problems never show up while under stress - so nothing was found in the ER.

They did a lot of tests - blood,CT of brain & spine, chest X-ray,ultrasound of the wrong spots. None of the meds they gave me worked.

I'm one of those sick people, who look like a top athlete, who just left a workout. But they didn't listen.

I really thought I'm going to die.

Sorry, I couldn't help you better describe what were my other symptoms. This was my first Pulmonary Embolism, so I had no clue. My previous blot clots were in the brain (3 times), and that feels completely different. My next clot (almost inch in diameter) stopped 1/2 inch from the heart and felt quite similar to PE, as I already knew the signs - no one could find this one for 2 month and several tests.

Please be persistent!!! Your symptoms are not normal, but you know if you are begging for help, you really NEED it!!!

I"ll keep you in my thouhgts and please let me know if I can help.
Punkie

P.S. Later I found that this happened by not flushing the lines before removing the port in combination of starting birth control pills in the hospital for hormonal balance. I also have high Anticardiolipin Antibody since getting LD - that causes blood clots, can be inherited or caused by some infections.

------------------

 

Punkie, thank you for the information - it is scary though as so much of it sounds so familiar to what i am going thru, but atleast knowing your story I will be persistent.

So thank you very much.

Whoever I've missed, I apologize, i haven't been reading alot, but i know how many are sending good thoughts and appreciate that more than i can say.

 

And trying to pretend the pain isn't there!

Thank you all again for all of your thoughts and prayers and now for thinking of Crimeoflyme. No prayers going to waste around here!

Thanks again,
Betsy
 

My physical therapist saw me for the first time yesterday since the port removal and she believes they probably nicked a nerve sometime (putting in/taking out) - not sure what to do with that right now.

But I am inclined to believe her for now, so though the pain is intense, believing it isnt life threatening has brought a feeling of calm.

For all of you w/similar experiences thank you for sharing and I'm sooo sorry you went thru this. I can't tell you how much I appreciate all of your prayers and thoughts.

Melanie - you are an angel here at lymenet and you helped me so much thru this on top of so much in your own life, thank you.
 

Sounds like you might be getting to the bottom of this.

Sorry to hear that you are still in so much pain.

Sending you warm wishes and big hug.

Jordan

------------------

 

Thanks so much.

I really hope so, sure wish the pain would go away!!!

take care of yourself,
Betsy
 

This is te first time I ever looked in GENERAL.I am so glad that I did. I am so sorry for all that you are going thru.

You are too sweet to suffer anymore.......you have already been thru the mill. I do hope the pain subsides. Praying for you and your two darling children.

My life has been in a whirlwind so I have not even been able to enjoy my favorite pasttime...............reading posts on lymenet!!!!

Hope the pain disappears............love

aunty
 

This is te first time I ever looked in GENERAL.I am so glad that I did. I am so sorry for all that you are going thru.

You are too sweet to suffer anymore.......you have already been thru the mill. I do hope the pain subsides. Praying for you and your two darling children.

My life has been in a whirlwind so I have not even been able to enjoy my favorite pasttime...............reading posts on lymenet!!!!

Hope the pain disappears............love

aunty
 

pain is still there with no real cause, but not as bad as right after removal, not sure what that means.

How are you now?

Keep in touch