My PICC was pulled 8 days ago and every now and then I get a sharp stabbing pain where the PICC was near my heart.
It doesn't happen all the time, some days it doesn't happen at all.
My PICC was removed because I was running close to 103 degree fevers and they thought it was infected.
I called the lab to see if the culture came back with anything and they said it was all negative.
Today was bad. I was posting signs for a garage sale and it happened, wham!
It only lasted a few seconds, but man it killed.
It seems if I do anything stressful or overexerting myself it happens.
It was in for 8 months... so I don't know if it's still healing???
Any Clue???
Thanks
UPDATED info below
[ 04-04-2009, 09:57 PM: Message edited by: Kreynolds ]
Posted by Abxnomore (Member # 18936) on :
I don't ever remember experiencing anything like that when mine were pulled. Something does not sound quite right especially since you have had it out a while now.
I'd would get your heart checked out to be sure everything is fine.
Posted by pab (Member # 904) on :
I would call your doctor. My sons had PICC lines and it didn't happen to them.
Posted by Kreynolds (Member # 15117) on :
To All:
I wanted to update the post my husband made this morning...
My husband is in the ER and they are doing a full cardiac work-up on him...
Unfortunatly, I had to leave to come home for my son.
I will update more later!
Thanks for all the replys, Katie
Posted by sammy (Member # 13952) on :
Thank you for the update Katie. I will keep your family in my prayers. God bless:)
Posted by Kreynolds (Member # 15117) on :
To All:
I heard from my husband...
The cardiologist said he thinks my husband may
have a clot in his lung, so they are going to be
sending him for a cat scan.
Also his white blood cell count is low... What
does this mean?
-Katie
Posted by dmc (Member # 5102) on :
Oh, the poor guy. Hope they are able to help him. Don't know what low WBC count may mean.
Best wishes to him & you.
Posted by Kreynolds (Member # 15117) on :
sammy & dmc:
Thank you so much for the kind words.
-Katie
Posted by darla135 (Member # 15688) on :
Please keep us posted when possible! I had similar, but less intense pain, after having my picc removed in January. It lessened over time and went away when I had a port inserted and restarted Rocephin. We never really knew the reason for it - scary....
Posted by Kreynolds (Member # 15117) on :
To All:
I just got home from the hospital & got updated
info about my husband...
The ER ran a whole bunch of labs and one of the
tests called a D-Dimer blood test ,which can be
a sign of a blood clot, came back extremly
elivated. They did a Cat Scan and werent able to
see a Blood Clot.
He will be getting an Ultrasound on the arm that
the Picc Line in to rule out a blood clot.
The Cardiologist said she feels my husband has
an infected valve in his heart due to his Picc
line being infected. He is scheduled to have
Echocardiogram tomorrow morning.
It is called Infective Endocarditis...
He is being admitted to a section of the
hospital where they monitor patients closley
with heart problems.
He will be getting IV Daptomycin for the
Infective Endocarditis
As soon as I hear more I will update!
Thank you everyone for your support!
-Katie
Posted by Dekrator48 (Member # 18239) on :
I will be praying for him to recover quickly.....sooo scary.
Posted by TerryK (Member # 8552) on :
So sorry to hear this! I'm very glad they figured it out.
Really appreciate that you've kept us up on his condition.
My prayers and love to you all.
Terry
Posted by Kreynolds (Member # 15117) on :
Dekrator48 & TerryK:
Thank you so very much for your kind words and support!
We truly appreciate it!
-Katie
Posted by bettyg (Member # 6147) on :
wow, katie! couldn't get on board earlier today to read so i'm behind.
poor roy and you katie,
glad you took him there to be evaluated; that they KEPT him doing testings.
i've never heard of this one before. ultrasound on his arm will be easier than the one they tried to do on me starting from GROIN area down the hip to foot!
i just could not tolerate their intense pushing down on ultrasound to find where the blood clot was located.
katie, i went to NIH's medical library and found these 3 links for you; didn't read any of them, but want to share with you both!
may God watch over Roy and you, Katie, dissolving this blood clot without jeopardising Roy's health!
I hope and am praying your husband will be fine. God bless you both.
Posted by DakotasMom01 (Member # 14141) on :
Sending prayers for Roy, your son & you.
Please update us when you can.
Posted by Kreynolds (Member # 15117) on :
Bettyg, Snailhead & Dakotasmom01:
Thank you all very much for your kind words and
keeping us in your prayers!
Bettyg: thank you for the links!I appreciate it! :-)
-Katie
Posted by AliG (Member # 9734) on :
What a horribly frightening experience!
I'm sending up prayers for both you & your husband.
I'm so sorry that you're going through this. Hopefully they'll get him straightened out & get rid of that infection quickly.
hugs & prayers, Ali
Posted by seibertneurolyme (Member # 6416) on :
Curious as to which antibiotic he was getting through the PICC line before this all started?
Pretty sure lyme and bartonella can cause endocarditis. It may not be from a PICC line infection but from a tickborne disease instead.
Bea Seibert
Posted by feelfit (Member # 12770) on :
Katie and Roy,
Sending you positive thoughts and hoping that Roy has a very quick recovery. Hugs to the little guy too.
Please keep us posted.
Feelfit
Posted by Abxnomore (Member # 18936) on :
He posted that he was on IV Clinda with orals & mepron and just recently switched to IV doxy with orals & mepron.
When they pulled his infected picc line he posted that there was some kind of small round ball of puss attached to it end of the line, some type of infection growing. I wonder if it could have even been a fungal ball.
Katie and Roy sending you lots of good wishes your way.
Posted by viva (Member # 8183) on :
Katie,
Sending all best wishes to you and your husband. Sounds like they have a good treatment plan in place.
You're in my thoughts.
Viva
Posted by MY3BOYS (Member # 17830) on :
may you be keep in the hands of God guided doctors to treat you hubby. is VERY good to have him on cardio floor for 24/7 monitoring. and d-timer elevation does help docs know witch way to go. echocardiogram with give more info.
only other test done for lung clot can be a V-Q scan. CT or V-Q can have their own sensitivites. sometimes both are done.
some of the TBD can cause inflammation to vessesls and heart is no exception, this can lead to endocardidtis, and aother cardiac issues
(and yet, i have prorastinated) sounds like if pus ball was at end of picc, that was significant. tip is to be cut and sent for culture and ID by nurse who pulled line.
praying for your family
Posted by bettyg (Member # 6147) on :
katie, hoping the 3 links i gave you will be able to help you both know more what you are dealing with.
hugs/kisses to you both ....
Posted by Ocean (Member # 3496) on :
Katie,
I am so sorry! Please tell Roy (I am sorry if that isn't his name, I was thinking it was though) that he is in my thought and prayers.
Thank you SO much for letting us know and update when you can.
Ocean
Posted by imagine2 (Member # 3136) on :
Katie, please tell Roy we are sending healing prayers and are standing by to cheer him home soon.
I hope his LLMD is keeping in constant touch with you.
God Bless.
Posted by Kreynolds (Member # 15117) on :
To All:
Sorry I havent been able to update about my
husband sooner,but I just got home from dealing
with the idiot Infectious Disease Doctor at the
hospital hospital...
So, here is what happened through out the day:
The ultrasound tech did the ultrasound of his
chest, arms & legs to see if there was a blood
clot.
As far as what the nurse said about the results,
she didnt see any clots. But we have to wait for
my husband to be seen by the cardiologist to
know for sure.
My husband is scheduled to get an Echocardiogram
tomorrow so hopefully that will answer the "un-
answerable" question of the past 8 days... Why
is my husband who is 23, having shooting sharp
pains in his heart?
After I left the hospital at 6pm, I recieved a
phone call from my husband telling me that the
cardiologist isnt writing the orders & tests for
him...
It is an Infectious Disease Doctor...Needless to
say, she was not agreeing with my husbands Lyme
treatment and starting causing problems...
Basically, I had to rush to the hospital and
have a talk with a doctor who is very "main-
stream" as she called herself and brough up the
treatment guidelines of the CDC & IDSA... So, I
proceeded to tell her that I understand that she
was not comfortable with how my husbands doctor
is treating him for Lyme, but that was not her
issue to address because she is not his Lyme
Doctor & that isnt what he is there for!
So, to make a long and pointless conversation
between myself and this ID Doc, we came to an
understand, i think, that she is intitled just
as we are to ours. Really, shes on the one side
of the fence and we are on the other as far as
my husband's treatment for Lyme is concerned.
BUT... I did make sure that the cardiologist was
going to be the one reviewing the results of the
Echocardiogram and that she was not!!!!!!!!
My husbands chest pains have been getting worse
since he got to the ER because of all the BS the
doctors & nurses are putting him through,
especially all the questioning about Lyme & his
treatment...
He keeps saying..." What does it matter what my
treatment for Lyme was... I'm here for my heart"!
I left there about 8:45pm and no sooner
after I left, my husband called me telling me
that the doctor put the info & dose of his
Mepron into the computer only put it in for once
a day, when he takes it twice a day.
So, I called the nurses and I said its on the
*******(bad word) bottle, twice a day! But, when
my husband was admitted, they took the bottle
from him. I can figure stupid people out for the
life of me... ERRRRR! From the time my
husband told me this over the phone to when i
called, it might have been 1 minute... And the
nurse was like "Oh, you beat me to it, i was
just getting off the phone with the doctor & she
said he does take it twice a day"...
Well, Sorry for such a long post but I wanted to
keep everyone updated on my husband...
I told him that you all are keeping him in your
prayers... He told me to tell eveyone thank you!
Thank You All So Much!
-Katie & Roy
[ 04-05-2009, 11:09 PM: Message edited by: Kreynolds ]
Posted by bettyg (Member # 6147) on :
katie and roy,
sorry, but what a $hitty day you both had fighting the idsa drs!! glad you spoke up and got it straightened out.
you agree to disagree about his lyme treatment but roy is there for his HEART and you'll listen only to cariologist on his findings of ECG!!
no wonder roy is NOT improving with all the unnecessary STRESS they are putting him/you thru.
thanks for taking the time to bring us up to date, AND VENT ANYTIME! we're here for that too and sending you unlimited Posted by Keebler (Member # 12673) on :
-
If the do the echocardiogram on Monday, see if the doctor would order it not just with him lying down but also standing.
Some patients with ongoing fatigue have found the standing images to show things that the lying down images do not.
-
Posted by Geneal (Member # 10375) on :
Sending prayers.
Hugs,
Geneal
Posted by Pinelady (Member # 18524) on :
If worse comes to the worst. Make sure they have a pacemaker available and ready for him. It could save him.
Posted by Kreynolds (Member # 15117) on :
To All:
I just heard from my husband...
They did the Echocardiogram early this morning
and he is waiting for the cardiologist to come
and see him.
Also, his blood pressure is high. he said it was
160... What is a normal blood pressure? is it
120/80? Well, i know he didnt know what the
other number was but instead of being 120 he was
160... I hope I am explaining this right.
So we have to wait and see what the ECG results say...
*** When i made the post last night it was very
late and i forgot something about the Infectious
Disease Doctor...
After she and I had our disagreeance on
treatment for Lyme, I asked her to please call
my husband treating doctor... She said she
wouldnt because she didnt believe in how my
husbands Doctor is treating him.
Sorry for forgeting to put it in the post last
night.
Thank you to all again, Katie & Roy
Posted by mtree (Member # 14305) on :
thinking of you both!!!!!
mtree
Posted by pab (Member # 904) on :
Katie & Roy,
I hope they have an answer for Roy today. Thanks for the updates. I'll keep your family in my prayers.
Posted by FuzzySlippers (Member # 13658) on :
Katie, I just want to say that I think you are doing a truly wonderful job dealing with those doctors at the hospital.
I'm so glad you're standing your ground.
I think sometimes doctors, particularly in a hospital setting, forget that there is still consumer choice in the medical field. We are entitled to consult with and purchase the services of any doctor we choose and it's not for any doctor to individually say that we do not have that choice.
Keep up the great work. I'm thinking of you and Kreynold. Please keep up posted, k?
Fuzzy
Posted by Kreynolds (Member # 15117) on :
Thank you to everyone for keeping my husband in
your prayers & thoughts. It is truly amazing the
support you all are giving and we can not say
thank you enough!
Update:
My husband is going to be getting a stress test
too. I'm not to sure when, but I know that he
will be getting one soon...
Also, the cardiologist is going to be reviewing
my husband's ECG results after 4pm. I hope to be
able to be there to speak with the cardiologist
when he is seeing my husband, but with my son
only a week into his treatment for Lyme & Bart I
have to make sure he gets his afternoon doses
before I leave.
Thank You all so much again,
Katie & Roy
Posted by njlymemom (Member # 15088) on :
Oh Katie! How did I miss this post?!?
So sorry to hear what Roy is going through.
I just kept praying as I was reading the post.
You are doing a great job standing up for your husband.
I will try to call you later. Sent you a pm.
Posted by Keebler (Member # 12673) on :
-
Katie,
Yes, you are doing an excellent job.
About the stress test. Some kinds will inject a medicine first. If so, first call his LLMD and ask if that is okay.
He'd want to avoid steroids of any kind. Also avoid EPI - epinephrine. It's in many numbing agents and other things, too.
I'm not sure his LLMD would WANT him doing an aerobic stress test now if the lyme is an issue.
Post-polio expert] Dr. [Richard] Bruno points out that physical over-activity is the biggest cause of post-polio symptoms. [3]
(See Dr. Bruno's "Fainting and Fatigue" in the Spring 1996 CFIDS Chronicle - excerpt: ``when mice infected with Coxsackie B3 were forced to swim in a warm pool, the virulence of the virus was drastically augmented.
In fact, viral replication was augmented 530 times. This did horrendous things to the animals' hearts.
We all know that to play squash with the flu can lead to heart attacks. Much the same danger can be courted by undertaking hard exercise with M.E. (CFS).''
----
[poster's interjection: Lyme disease, also, has cautions about aerobic exercise until nearly well. Lyme patients also have various other infections, some of which are viral and chronic Coxsackie virus is sometimes connected with patients who have chronic fatigue.
-
Posted by astriapage (Member # 17120) on :
Hello Katie
I have had infective endocarditis which resulted in me having open heart surgery.
No antibiotic could get rid of the infection in the valve.
A TEE was what was most effective at diagnosing me, but that was after they had done the echo and saw my mitral valve flopping around.
I was running a fever of 105-and they tried for 3 days to get it to come down.
The final combination of drugs to get the fever down was Levaquin, Vancomycin and Caspofungin.
These were all monitored by an ID doctor, but they don't know exactly what drug helped the most-they tried so many.
I was on 6 weeks of IV abx before my surgery, to rid my heart of infection, but did not work.
7 hours a day for nothing, and the whole time I knew I would have to have the surgery anyway.
My heart breaks for you, I have been there. I gasped when I saw the title of your post!
PLEASE TRY TO GET CARDIO TO DO A TEE TO BETTER DIAGNOSE WHAT IS IN VALVE! PLEASE!
You are both in my prayers!
Posted by sutherngrl (Member # 16270) on :
I am sending my prayers to you both. I hope they find all the answers very soon.
Posted by bettyg (Member # 6147) on :
katie, thanks for the update.
that turkey refusing to call roy's treating dr!!
160 over .... ANXIETY of not knowing how it will go and stress will rise the number many times. it does for me.
you are a REMARKABLE ACTIVIST for roy; best wishes on your son as well. when it rains, it pours. Posted by zombie_mummy (Member # 17402) on :
I don't know what to say. You are in my thoughts.
Posted by Kreynolds (Member # 15117) on :
To All:
Update on my husband:
The results of his echocardiogram are still
pending so hopefully they should be finished by
8/9am tomorrow. Also the blood cultures are
still pending as well.
I know i mentioned that my husband has an
elivated D-Dimer test result and today I was
finally able to find out just how elivated.
The range needs to be less than 230. My husbands
D-Dimer level was 1826 on Saturday when he was
admited. Since starting the Daptomycin for the
Endocarditis, his D-Dimer has dropped to 1034.
Also, my being my husband is being monitored,
they are able to see his heart rate and to make
sure everything is ok. The nurse came in this
after noon telling that he had an "elivated ST
segment". She explained that it starts at "P"
and ends at "T" like alphabetically. I hope i am
making sence. Sorry if I'm not, that was how it
was explained to us.
So we are still waiting to get to the bottom of
this...
Astriapage: I was able to get info on the TEE
test and my husband is going to ask the doctor
for one! Thanks for the info!
To Everyone: Thank you so much for everything. I
printed out the entire post so my husband could
see what you are were saying. He wanted me to
thank you all for him as well.
Hugs to all: Katie & Roy
My husband had a stress test... We thought he would have been infused and run the test that way, but they decided that they wanted my husband to run on a tredmill for 12 minutes. Well, needless to say he is feeling pretty bad after that. The results of the stress test were negative.
Posted by opus2828 (Member # 15407) on :
I am praying that everything turns out okay.
Posted by feelfit (Member # 12770) on :
Well at least a plus with the Stress Test!
Thinking of you guys and praying for the best outcome.
Feelfit
Posted by bettyg (Member # 6147) on :
katie, thanks for update. continuing to pray for you all.
anyone, what a D-dimer?? wow, what high numbers that is.
Posted by Kreynolds (Member # 15117) on :
Bettyg:
The causes of a high D-Dimer level blood test
can be infection,blood clot,recent
surgery,inflammation, age, cancer, pregnancy,
etc. The causes are very broad, but depending on
your symptoms or any preexisting
condition/illness, the doctor should conclude
why the level is high.
So in my husbands case his picc was infected, he
was running fevers & since being on Daptomycin (
treatment for the infection), his D-Dimer level
is gradually making its way down to where is
needs to be... We are thinking his D-Dimer level
is high do to the Endocarditis or the infection
in his heart.
Thank you for keeping us in your prayers!
-Katie
Posted by jtavares76 (Member # 19216) on :
Sorry that your family is having such a difficult time...my thoughts and prayers are with you.
JT
Posted by Kreynolds (Member # 15117) on :
To All,
UPDATE: This is Roy and I am back from the hospital.
Not much was said to me about my condition.
They told me I had a weak heart due to the Metril Valve not working properly.
Instead of it sealing shut its flopping around.
I know many of you posted about my condition and I want to thank you for all your prayers and thoughts....
I am truly concerned about my heart being that a port is supposed to be put in sometime soon.
They did not tell me much and focused more on my Lyme than the initial problem I was there for.
I HATE STANDARD MEDICAL PROFESSIONALS!!!
I am feeling really tired and weak, but wanted to update and tell you all THANKS!!!
I will be on here soon!
-Roy
Posted by Tincup (Member # 5829) on :
And in comes Pokey.. looking for Gumby.
Duh me!
I don't know how I missed this post totally!!! I was gone a for a couple of days.. but normally I am more up on it when I return.
SO SORRY you had to stay in the duck motel!
OUCH OUCH OUCH on that!
Ok.. I can't pretend to know how to help you.. but from what I am seeing here.. I would suggest to MY family (if this were him) to start taking L-Glutamine- powder- pharmacutical grade ONLY with no additives.
I'd tell MY family to mix the scoopful (read directions) in water real well... (no smell and no taste) and drink it up ... don't let it sit around then sip on it. NOT good.
This might help with the valve repair... as well as muscles and bladder and other things too. Six weeks minimum... taken daily.
BUT.. I am NOT a doctor.. and this is only what I would do.
You were good there... and thank you for standing your ground. As sick as you must have felt... you did exceptionally well.
Get some home made REST and get back to us when you can.
Thank goodness you are ok!!!!
Is your dear wife.. who was SO great posting updates... please thank her for us.... well is she doing the plucking now?
Or is she making you wait?
I know with all she has to do... having to pluck you isn't going to be easy or fun.
I've yet to hear of a spouse who had the desire to sit on the side of a bed and painstakingly pull out the duck feathers from between the patient's teeth when they've come home.
And never have they jumped for joy having to vacuum up the free floating little feathers that are flying all over the room!
But she sounds like a good one.. so you'll just have to start spitting out those duck tail feathers while she is doing this other stuff.
I am really so sorry you were there and hurting so much. Probably scared to death too!
But your feather plucker did give the duck motel's staff a tough time... and for your benefit.
You are a lucky one. But we already knew that!
Posted by TerryK (Member # 8552) on :
So glad to hear that you are home. I'd get copies of all my medical records from there and any tests that were done as well so that you can give the test results to your LLMD.
Disgraceful behavior on the part of the ID. To refuse to talk to your doctor because she doesn't agree with your treatment is not professional. Some doctors have such a big ego that they simply are not capable of putting the patients well being first.
So sorry you and your wife had to experience such distasteful behavior. Your wife was so kind to keep us updated! She is a real sweetheart and such a trooper.
My thoughts and prayers are with you for a quick recovery.
Take care, Terry
Posted by Abxnomore (Member # 18936) on :
Glad to hear you are home and away from the hospital know nothing DUCKS!
Posted by Kreynolds (Member # 15117) on :
To All:
UPDATE:
This is Katie, Roys wife, Roy wasnt feeling any
better when he got home and was not satisfied
with what the doctors said at out local
hospital, so we called his Lyme doctor and were
told to talk him to a different hospital when he
can see Roy. It is about 30/40 minutes away from
home so I am truly missing my husband and I know
our son is too!
Its 1:04am and I just got home. He was still in
the ER when I left, but he just told me that he
is being admitted.
I am glad to know he is with a good hospital and
in the care of his doctor so hopefully we will
have an idea on what is causing this for my
husband and how to fix it!
*** We just miss him. Since he has been
diagnosed, 2 years ago, I can say that we havent
spent more than a day apart.
Thank you so much for all the support & keeping
us in your prayers, we truly appreciate it.
I will update more as soon as I get more info.
Hugs, Katie
Posted by bettyg (Member # 6147) on :
wow katie!
leaving one hospital and taking him to ANOTHER in same evening!! whew...
nice seeing roy post himself, and so GLAD YOU CALLED HIS LLMD for his guidance and advise.
MORE PRAYERS headed to each of you..
mitral valve is nothing to ignore.
my late dad had 2 mitral valve replacements with PIG valve. 1st lasted 10 years and 2nd 3-4 yrs. until his death.
he had also UNDIAGNOSED LYME FOR 80 YEARS.
so whatever happens, with roy being so young; he has a much better chance of overcoming these obstacles than my late dad did. Posted by Tincup (Member # 5829) on :
Well bless your heart.
Thank you for updating us. I am sorry you are doing so much running... but just so you know....
Hubby praises you as if the sun rises and sets with you and like you walk on water.. and worries about you so... and your little one too. And we can surely see why. You are tops.
If you ever decide to dump him....
And when he reads this he is LAUGHING.... I can't hear you laughing.... LOUDER NOW!!!!
You can stay here and be nice to me!!!!
If we can do anything for you... please let us know. Heck we feel like we already know you and we hold you dear too.
You are part of this big crazy family... so do share and do let us know if you need anything.
OK?
Hope you get some rest... and when you are up to it.. we'd love to hear from you!!!
Hugs to you all... Dad, Mom and baby too!
Posted by astriapage (Member # 17120) on :
Like Betty said do not mess around with the Mitral Valve!
My cardio has admitted that Lyme did the damage to mine!
I am glad you went to another hospital-please keep us posted!
Posted by seibertneurolyme (Member # 6416) on :
Katie,
Glad you went to the 2nd hospital -- I was going to suggest you get a 2nd opinion from a LLMD cardiologist.
One supplement you might want to think about adding is CoQ10 -- it helps strengthen the heart and is good for the brain as well. Kind of expensive, but worth it. The ubiquinol form is best. 300 or 400 mg daily is probably an adequate dose although it may need to be even higher in Roy's case. Many alternative docs prescribe this for congestive heart failure and other less serious heart issues.
Hubby has had a mitral valve prolapse probably from birth (diagnosed at age 3 or 4). He is now 55 and has had Lyme and coinfections for 8 years. Has been taking the CoQ10 for over 7 years and his last echo actually showed some minor improvement in heart function -- his regurgitation was less than in the past. The only explanation for this is the CoQ10.
Best wishes.
Bea Seibert
Posted by Ocean (Member # 3496) on :
Katie,
I'm glad that Roy and you are fighting for him. I know a mom who took her kid to the ER with 104 degree temp after he'd had a hernia repair surgery. They gave him some Tylenol and sent him home.
She knew something was really wrong. In the am, she went to her pedi's office and waited until they opened, pedi took one look at him and called for an Ambulance to take him to a hospital in a large city 1.5 hours away.
He ended up having Toxic Shock Syndrome. He almost died (they think a gauze pad was left in him during the surgery) and would have if mom didn't have intuition.
You are a WONDERFUL wife for Roy and I can tell you guys love each other so much and have so much love for your little boy.
Thank you for updating us, I am sure you are so exhausted. I hope you have someone nearby to help take care of your son so you can rest too.
Some hospitals are incompetent as Astriapage can attest! I hope this one can do more for him than the other. It's great that his LLMD will be there to make sure he gets the care that he needs =)
take care, Ocean
Posted by njlymemom (Member # 15088) on :
Katie and Roy.. thanks for keeping us posted.
Smart move going to the other hospital.
I know the hospital he was in, I have had a few horrible experiences there.
Now his lyme txing doc will be there for him.
Let me know how I can help.
Hugs & Prayers for all 3 of you being sent.
Posted by pab (Member # 904) on :
Katie & Roy,
I hope you finally get an answer. Hang in there!
Posted by Kreynolds (Member # 15117) on :
To All,
This is Roy,
I am not feeling good for the past 7days.
Like my wife had mentioned I went to another hospital for my heart problem.
I got there real late and the problems started....
I was held in the ER with extreme chest pains, shortness of breath, left side going numb,coughing,headaches,dizziness and nausea.
I was held in the ER for 9 hours. I was first told that I was going to be admitted, they just needed a room (they were busy).
I thought I was finally going to get some help with my Mitral Valve.
To make a long story short one of my Lyme Doc's partners saw me. My Lyme doc was on vacation due to "Ash Wedneseday".
His partner asked me how I was feeling. This was at 7:30am , after having no sleep.
I told him I am really not feeling well I was held in the ER for 9 hours without a room where I could sleep and that my heart is really hurting.
He told me my blood work looked fine and he was discharging me. I couldn't believe it. The best part was that he had called my Lyme Doc and asked him what to do.....
Nobody wanted to deal with me. I feel really sick and its getting worse.
I bet if I was 20 years older they would have been more concerned.
I just don't know what to do.... My Mitral Valve is in bad shape and my bloodwork for an infection was highly elevated.
BUT both hospitals discharged me saying it was the Lyme.
I told them I know Lyme can cause heart problems and thats why I'm concerned. It already has affected my brain and now my heart is extremely weak at the age of 23.
Well I am off to the toilet bowl to toss my cookies.......
Astriapage... seems like my problem is similar to yours.
It seems like anything I read about it ISN'T good.
I asked for the TEE test and they gave me the cold shoulder.......
Such is life..... Posted by bettyg (Member # 6147) on :
roy, those A holes !! reminds me of the tshirt i received the other day or maybe it was posted on this board; can't remember.
it had a man bent over completely with his head up his butt.
it spelled out IDSA,,, can't remember the punch line of the tshirt!!
can't believe the rum dum co-worker of your LLMD?? no brains whatsoever. Posted by seibertneurolyme (Member # 6416) on :
Roy,
So sorry you are getting the run around. Hubby suggested that a chest CT with contrast nmight be useful. It could find a clot if there is one -- more definitive than an ultrasound or even an echo or stress test. This can be done on an out patient basis. I would call your LLMD or PCP tonight or first thing in the morning. Don't give up on getting a more definitive diagnosis.
Make sure you get copies of all the bloodwork done in both hospitals.
Are you taking any enzymes such as Wobenzyme or Vitalzym or nattokinase or lumbrokinase or something like that?
Bea Seibert
Posted by Kreynolds (Member # 15117) on :
hey,
Just curious.... Did anyone have any discomfort in the chest area with MVR?
I strongly feel that I have infected endocarditis.
I also feel that 2 years ago when my doc found the heart murmur and palpatations is when my heart started getting weak.
I did notice that the ER and staff were more concerned about the elderly, which I can understand, but it took away from my treatment.
I am going to have a long talk with my doc, maybe not see him anymore, thats how ****ed I am.
Very, very concerned. Seems like they thrive on just lab work. I also heard that you can have a false-negative lab for Endocarditis.....
Next step....Unknown Posted by Tincup (Member # 5829) on :
Hang in there till you talk to your doctor!
Tell the office you've spent X number of days in the hospital.. two hospitals.. and still have no answers and are very concerned... and you want to talk to him/her today!
Be nice and get your records too.
Hugs to you and yours. Don't give up yet.
Better days ahead.
Posted by bettyg (Member # 6147) on :
roy,
hope you can pinpoint everyone down; sorry but bedtime for me.... Posted by astriapage (Member # 17120) on :
I have sent you a PM giving you my phone number.
I really want to talk to you-please call, I can even call you back. Or Katie can call-just call.
I did have discomfort, pain in my chest. What is scary is I still have pain, and wonder if it is possible for the heart to become reinfected.
I will be waiting for you call!
Posted by TO LIFE (Member # 12371) on :
Dear Astriapage,
In my opinion the answer is yes. I have the infection in my heart as well. I am going to start a poll on are Echo results.
Posted by TO LIFE (Member # 12371) on :
Dear Roy,
What antibiotics are you on?
Posted by Kreynolds (Member # 15117) on :
TO LIFE:
Zithro,Levaquin, and Tindamax
Posted by TO LIFE (Member # 12371) on :
Hi Kreynolds,
Is your Lyme MD willing to right a note to Cardio about heart infection? Like, all they have to write possiable heart infection for Cardio. for you.
Then the Cardio will have to dot his i's and cross his t's. Like even though my heart infection was due to Bart. and Lyme mainstream medicine DX me with Staph.
Do you have the echo results? Or prior ones has well so they can compare?
Do you have a teaching hospital near you?
If you do have an infection in the heart you need the A bomb of antibiotics. Rocephin will just get into their a little.
Get that note.
Posted by astriapage (Member # 17120) on :
Hello Everyone-I want to update everyone on what I know about this.
I see Katie has not posted yet-but I have been speaking to them today over the phone and they are going to admit Roy to the hospital again.
I contacted my cardiologist today, and he contacted them and said he would admit him to the hospital in NC on Monday and treat the heart infection.
She heard from his doctor around 6 pm, and they decided to put him in the hospital there.
She told me she brought up how a completely strange doctor would treat her husband, etc. and that got something done!
I do not want to speak for someone else, but I know alot of people have been so concerned for him, and want to let everyone know what I know.
Hopefully Katie will come on soon and give us the latest update!
Please pray everyone for Roy!
Posted by TO LIFE (Member # 12371) on :
Hi Astria,
I was wondering if you had Diastolic Dysfunction of the left Verticle?
This heart stuff just sucks, we only have one right.
Thanks
Posted by Kreynolds (Member # 15117) on :
To All:
This is Katie...
UPDATE:
I just got home from the hospital...
At the moment my husband has been admitted, but
his nurse is currently waiting for a call from
his doctor to start making plans for testing!
**** Astriapage:
Thank you so very much for talking with my
husband and I today and asking your doctor to
call. It was comforting to speak with you and we
truly appreciate your compassion for my husband
and the situation. I will send you a PM with the
info about the cats claw.
Thank you to all for keeping my husband in your
prayers and writing possitve thoughts for him. I
know it means alot to get support from all of
you!
I will update as soon as I get more info!
Hugs, Katie
Posted by bettyg (Member # 6147) on :
astria, thanks for the update and getting roy/katie additional help. xox
Posted by astriapage (Member # 17120) on :
Katie
The only tests I had were the Echo-which showed the bad mitral valve function.
After they got me stabilized they did the TEE several days later to see exactly how big the infection was.
That should be enough to find out how bad it is.
I am praying for you, and know exactly what he is going through.
Posted by astriapage (Member # 17120) on :
To Life:
I would really like to talk to you-what have you been through with your heart.
You talk about the abx, and my cardio does know what to put me on anymore. He knows Doxy is not even worth making me sicker at this point.
I have been on 9 weeks of IV Vancomycin, Caspofungin, Levaquin and Rocephin and it worked for about a month, and I have relapsed so bad!
I was not told that I had the Diastolic Dysfunction-I will ask though!
Please PM with your experience-I am so passionate about this, and want to talk to everyone who is affected.
Posted by buckfever (Member # 9876) on :
Sure hope you (Katie&Roy)get treated better where you are now! How in the *ell do these drs and hospitols get away with discharging someone this sick? The day is coming when we will have to have our lawyers deal with our medical proffessionals !!!!!
Posted by pab (Member # 904) on :
Katie,
Thanks for the update. I really hope Roy gets an answer today. Hang in there!
Posted by Kreynolds (Member # 15117) on :
To All:
UPDATE:
I heard from my husband a little while ago. His
Lyme doc came to see him and a cardiologist.
The cardiologist is in the process of sending my
husband for a new Echocardiogram along with
running all new test on my husband.
Also, my husband had a cardiac work-up about a
year and a half ago, so the cardiologist is
requesting the Echocardiogram from that work-up
to compair it to the one she is doing to see
the difference of his Mitral Valve. She said
that if she sees a difference she will be
doing valve replacement surgery.
Well that is all for now, so as soon as I get
more info, I will update everyone.
Hugs, Katie
Posted by TO LIFE (Member # 12371) on :
Dear Katie,
Let's hope for the best.
If I was you I would get your mate's recent Echo results, In other words ask for a copy. Please post it.
Is he on a monitor? When I have had to go to the hospital, I always check where the code blue button is in the room. Don't say anything just look for it.
I am just trying to prepare you. Like I believe in hopeing for the best, but I have to use wisdom to plan for the worst.
You are in a rough storm right now, as hard as it is you need to stay calm.
Is your husband on Valium? Remember the heart is a muscle, I have found valium relaxes the heart, to stop more heart damage.
GET THE RECENT ECHO RESULTS.
A Cardio does not do heart surgery a vascular surgeon does. They can make big money, and doctors can make money and then they can make money.
Please post Echo results, my Echo is not Kosher but I am still here.
Feel free to PM them to me if your not comfortable posting them.
Much Love, Roz
Posted by njlymemom (Member # 15088) on :
Katie, thanks for the update. Praying for all of you.
Posted by Kreynolds (Member # 15117) on :
To Life:
My husband filled out a Medical Release form the
other day from our local hospital to be able to
get all of his test results etc, but i forgot to
make sure I was on as authorized to pick them up.
So, I am waiting for my husband to call me back
to ask him to just write down that I can pick
them up and then ask the nurse at the hositpal
that he is in now to fax it to the other
hosiptal.
As far as I know, yes he is on a monitor.
What is the blue botton? is it an emergency
button?
Yes, my husband takes Valium. Its that good?
As soon as I am able to get the Echo results I
will post them!
Hugs, Katie
Posted by TO LIFE (Member # 12371) on :
Dear Katie,
I am sure by now the hospital has all the ECHO records. A picture is worth a thousand words. Ask for a copy of the recent one?
Get all of the ECHO results if you can. The recents one's are in his file from this morning. The old one's as well, having something faxed does not take alot of time. They should give them to you.
The code blue button is hidden, look for it.
Vascular Surgeons can make big money when it might not be necessary. Like an extra 40,000 in their bank.
Yes, make sure he is on valium the heart is a muscle. It will help relax it.
Hang in their. God will give you the strength his grace is able. Roz
Posted by Kreynolds (Member # 15117) on :
To Life:
I am going to the hospital where my husband was earlier this week to get his records which include the Echo results.
You mentioned a picture. Are there pictures of his heart?
~Katie
Posted by TO LIFE (Member # 12371) on :
Dear Katie,
An Echo is like an ultrasound, like when you are pregant they kind of look like that. Their should also be a written report with each Echo.
Yes,valium will help relax the heart muscles.
Is he on IV antibiotics where they are covering gram neg- and gram postive????
Like with me, I was on Gent. IV, which will cover gram neg infection, with something else for a few weeks.
Then I was switched to Vanco which is gram positive and something else. I am allergic to Penicillin, if your husband isn't that is very much in his favor. They can use at least 5 different antibiotics.
I believe it's hospital policy for Infectious Disease to see him in a 24 hour period at least in California.
Don't worry if they don't DX him with Lyme and Co. the main thing is that he gets the antibiotics and all the corners are covered.
How is his lungs? The heart and lungs go together. The die off with the strong antibiotics is rough. Have him spit out ever toxin in a cup or something, it very important to keep his lungs clear.
Code blue button is for emergency, just check for where it is in his room just to be on the safe side.
You are doing well. You have a very wise head on young shoulders. Much Love, Roz
Posted by sammy (Member # 13952) on :
Dear Katie, Thank you for keeping us updated.
I am relieved to hear that Roy is finally getting the care and attention that he needs. My heart goes out to you... I will continue to keep your family in my thoughts and prayers.
God bless you:)
Posted by astriapage (Member # 17120) on :
Katie:
Please update us as soon as possible-and wheter or not they will do the TEE do see the exact damage before they decide to do surgery.
I am relieved to see that you have a cardio who is already talking surgery. It was mentioned to me as a last ditch effort.
I know some people might not agree with me for saying that, but you do not understand this until you have sat in a hospital for 7 hours a day, 7 days a week for 6 weeks, only to turn out you had to have open-heart surgery anyway.
This was so hard on my family to take me back and forth to the hospital-I did not have insurance, and could not have a home health nurse-so it was only option.
To Life:
How much heart damage are you living with? What valve was affected? I am very anxious to talk to you.
Prayers and Hugs-Astria
Posted by Kreynolds (Member # 15117) on :
To All:
UPDATE:
Sorry I havent updated sooner, yesterday was
crazy...
My husband was in testing all day yesterday.
They did blood cultures, x-ray, cat scan, EKG,
echo cardiogram, pulminary functions test etc.
The only thing that hasnt been done is the TEE
test and that will probably be done on Monday.
My husband is waiting for the results from his
Echo yesterday. He said that he is feeling very
tired and his legs are very weak along with he
can not seem to eat much. He said he is nauseous
there for he doesnt have much of an appitite.
Also, his Lyme doctor put him on IV Levaquin and
has been having my husband do a nebulizer
treatment because he thinks my husband may have
asthma, but my husband says its making his heart
race so he wants to stop.
So, we are just waiting on the cardiologist to
tell us the next step and as soon as I find out
I will let you all know.
Thank you again to all!
Hugs, Katie
Posted by Kreynolds (Member # 15117) on :
To All:
UPDATE:
The cardiologist reviewed the Echo results &
decided that his mitral valve does not need
replacement.
I spoke with him Lyme doctor and he is
determinded to get to the bottom of this chest
pain, nausea, weakness, numbness etc. He is
doing a 24 hour unrinalysis and will go from
there.
Posted by astriapage (Member # 17120) on :
Great thing about not having to be replaced!!!
Yipeeeee!!!!!
Hope they will get to the bottom of his misery!
Posted by TerryK (Member # 8552) on :
Thanks for keeping us updated.
I'm so glad to hear that he doesn't need the valve replaced!!
Wow, when I looked at the number of tests that he had I can see why he's so tired. I hope they get this figured out soon and you guys can get some much needed rest.
Prayers and hugs to you guys.
Terry
Posted by sparkle7 (Member # 10397) on :
All my hopes to you & your husband for a quick recovery!
With love...
Posted by Kreynolds (Member # 15117) on :
![[kiss]](graemlins/kissing.gif)
![[group hug]](graemlins/grouphug.gif)
![[Frown]](frown.gif)
![[tsk]](graemlins/tsk.gif)
& that isnt what he is there for!![[bonk]](graemlins/bonk.gif)
ERRRRR! From the time my ![[Big Grin]](biggrin.gif)
![[Smile]](smile.gif)
![[lol]](graemlins/lol.gif)
![[toilet]](graemlins/toilet.gif)
![[cussing]](graemlins/cussing.gif)
![[puke]](graemlins/puke.gif)
![[confused]](graemlins/confused.gif)
![[sleepy]](graemlins/sleepy.gif)