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

Thanks in advance.

Much love, Melanie

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

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

--Annie

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.

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

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..

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!

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.

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.

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.

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!

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.

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

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.

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.

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

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.

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

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.

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.

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

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!

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

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

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!

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

gg

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.

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.

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

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".