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» LymeNet Flash » Questions and Discussion » Medical Questions » In tears....off to Hospital....again

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Author Topic: In tears....off to Hospital....again
Tracy9
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I had a PICC line removed a month ago the day after it was put in due to a blood clot. I have continued to have swelling and pain, so I had another ultrasound yesterday (was supposed to have had it sooner, but herxing got in the way.)

Yesterday after the 2 hour ultrasound, I was told I still had a blood clot in my arm, but that it was "not an acute issue" and that I could follow up next week at my hematologist appt for treatment (whom I've never seen yet so I'm not yet his patient.)

OK, so today for whatever reason I didn't wake up until 4 pm. I awoke to a message from my LLD saying she received my ultrasound report, that I have a Deep Vein Thrombosis in my arm and need to go to the hospital "right away and get admitted."

I called my PCP, who read the report right away; Deep Vein Thrombosis in arm blocking the blood flow, and said "What part about this don't you understand?" and I said "Well, the hospital ultrasound dept sent me home yesterday and said it wasn't acute, so I am afraid if I go to the ER they will send me home again. Should you call and tell them I need to be admitted?"

He said it won't do any good for he or Dr. Lantsman to call because I need to be treated by a hematologist, and since he isn't even the one treating my Lyme or anything, he has no experience with PICC lines or anything like this.

OK, so now I'm calling the ER to see if I go there, are they going to admit me or not. I talked to the ultrasound people and they said it's up to the ER doctor.

What a freaking mess. Waiting for a call back now, the ER doctor is reviewing my report from yesterday.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Lymetoo
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Just GET there!!

We'll be here holding your hand, Tracy. Hugs and love coming your way!!

Praying you won't get the run-around!!!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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feelfit
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Hey Tracy,

Go to the Hospital. Demand that they admit you. It has been a month. If your doctor requests that they admit you, they can't refuse!

A month with an unresolved deep vein thrombosis calls for attention I would say.

Will be thinking of you and hope that you get this resolved....not only that, you have got to have some anxiety over the situation by now.....

Feelfit

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randibear
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here's an explanation of what i found.

i'd be getting to the ER asap. don't self-diagnosis on this AT ALL.

MOVE IT!!!!

Deep vein thrombosis is the formation of blood clots (thrombi) in the deep veins.

Blood clots may form in veins if the vein is injured, a disorder causes the blood to clot, or something slows the return of blood to the heart.
Blood clots may cause the leg or arm to swell.
A blood clot can break loose and travel to the lungs, which is called a pulmonary embolism.
Doppler ultrasonography and blood tests are used to detect deep vein thrombosis.
Anticoagulants are given to prevent pulmonary embolism.

Blood clots (thrombi) can occur in the deep veins, termed deep vein thrombosis, or in the superficial veins, termed superficial thrombophlebitis (see Venous Disorders: Superficial Thrombophlebitis). Deep vein thrombosis occurs most often in the legs or pelvis but may also occasionally develop in the arms.

Pulmonary Embolism: A blood clot in a deep vein sometimes will break loose, becoming an embolus. The embolus can travel through the bloodstream, through the heart, and into the lungs, where it lodges in a blood vessel in the lung, blocking blood flow. This blockage is called pulmonary embolism (see Pulmonary Embolism (PE): Pulmonary Embolism) and can be fatal. The small blood clots that occur in superficial thrombophlebitis usually do not become emboli. Thus, only thrombi in the deep veins are potentially dangerous. Blood clots in the legs or pelvis are more likely to become emboli than blood clots in the arms, perhaps because the squeezing action of the calf muscles can dislodge a blood clot in a deep vein, especially when a convalescing person becomes more active.

The consequences of pulmonary embolism depend on the size and number of emboli. A small embolus may block a small artery in the lungs, causing the death of a small piece of lung tissue (called pulmonary infarction). However, a large pulmonary embolus can block all or nearly all of the blood traveling from the right side of the heart to the lungs, quickly causing death. Such massive emboli are not common, but no one can predict which case of deep vein thrombosis, if untreated, will lead to a massive embolus. Thus, doctors are greatly concerned about every person who has deep vein thrombosis.




Did You Know...

Although uncommon, thrombosis can occur in healthy people who sit for long periods, such as during long drives or flights.


Sometimes, people have an abnormal opening, called a patent foramen ovale, between the right and left sides of the heart (see Birth Defects: Heart Defects). If this opening is present, an embolus can pass into the arterial circulation and block a blood vessel in another part of the body, such as the brain where it will cause a stroke.

Causes

Three main factors (known as Virchow's triad) can contribute to deep vein thrombosis:

Injury to the vein's lining
An increased tendency for blood to clot
Slowing of blood flow

Veins may be injured during surgery, by the injection of irritating substances, or by certain disorders, such as thromboangiitis obliterans (Buerger's disease). They may also be injured by a clot, making formation of a second clot more likely.

Some disorders, such as cancer and certain inherited disorders, cause blood to clot when it should not. Some drugs, including oral contraceptives, estrogen therapy, or drugs that act like estrogen (such as tamoxifen Some Trade Names
NOLVADEX
and raloxifene), can cause blood to clot more readily. Smoking is also a risk factor. Sometimes blood clots more readily after childbirth or surgery. Among older people, dehydration commonly causes the blood to clot more readily and can therefore contribute to deep vein thrombosis.

During prolonged bed rest and other occasions when the legs are not moving normally (such as after a leg injury), blood flow slows, because the calf muscles are not contracting and squeezing the blood toward the heart. For example, deep vein thrombosis may develop in people who have had a heart attack and lie in a hospital bed for several days without sufficiently moving their legs or in people whose legs and lower body are paralyzed (paraplegics). Deep vein thrombosis can develop after pelvic, hip, or knee surgery. Thrombosis can even occur in healthy people who sit for long periods, for example, during long drives or airplane flights, but thrombosis is extremely uncommon in this circumstance and usually occurs in people with other risk factors.

Symptoms

About half of the people with deep vein thrombosis have no symptoms at all. In these people, chest pain or shortness of breath caused by pulmonary embolism may be the first indication that something is wrong. In other people, if a deep leg vein is involved, the calf swells and may be painful, tender to the touch, and warm. The ankle, foot, or thigh may also swell, depending on which veins are involved. Similarly, if an arm vein is involved, the arm may swell.

Chronic Deep Vein Insufficiency: Some blood clots heal by being converted to scar tissue, which may damage the valves in the veins. Because the damaged valves prevent the veins from functioning normally, fluid accumulates (a condition called edema) and the ankle swells. The edema can extend up the leg and even affect the thigh if the blockage is high enough in the vein. Edema is worse toward the end of the day, because blood must flow upward, against gravity, to reach the heart when a person is standing or sitting. Overnight, edema subsides because the veins empty well when the legs are horizontal.

Sometimes, the affected veins are obliterated (destroyed). In people whose veins are obliterated, leg edema is always present, generally worsening at the end of the day. The skin on the inside of the ankle becomes scaly and itchy and may turn a reddish brown. The discoloration is caused by red blood cells that escape from swollen (distended) veins into the skin. The discolored skin is vulnerable, and even a minor injury, such as that from scratching or a bump, can break it open, resulting in an ulcer. Varicose veins may be present. In addition to ulcer pain, there may be throbbing pain when standing or walking.

If edema is severe and persistent, scar tissue develops and traps fluid in the tissues. As a result, the calf permanently enlarges and feels hard. In such cases, ulcers are more likely to develop, and they heal less easily.

Diagnosis

Deep vein thrombosis may be difficult for doctors to detect, especially when pain and swelling are absent or very slight. When this disorder is suspected, Doppler ultrasonography (see Symptoms and Diagnosis of Heart and Blood Vessel Disorders: Echocardiography and Other Ultrasound Procedures) can confirm the diagnosis. Sometimes doctors do a blood test to measure a substance called d-dimer that is released from blood clots. If the level of d-dimer in the blood is not increased, the person probably does not have a deep vein thrombosis.

If the person has symptoms of pulmonary embolism, a computed tomography (CT) scan or chest scanning using a radioactive marker (see Symptoms and Diagnosis of Lung Disorders: Chest Imaging) is done to detect pulmonary embolism, and Doppler ultrasonography is done to check the legs for clots. These procedures are done except when a person collapses. Collapse suggests massive pulmonary embolism and requires immediate treatment.

Prevention

Although the risk of deep vein thrombosis cannot be entirely eliminated, it can be reduced in several ways. People at risk of deep vein thrombosis should flex and extend their ankles about 10 times every 30 minutes. Such people include those who have just had major surgery and those taking long trips. During long flights, everyone should walk and stretch every 2 hours while awake.

Continuously wearing elastic stockings (support hose) makes the veins narrow slightly and the blood flow more rapidly. As a result, clotting is less likely. However, elastic stockings are not sufficient protection against developing deep vein thrombosis. Also, they may give a false sense of security and discourage more effective methods of prevention. If not worn correctly, they may bunch up and aggravate the problem by blocking blood flow in the legs.

Did You Know...
Deep vein thrombosis can occur in people who sit for long periods, for example, on long flights.

Pneumatic compression stockings are an effective way to prevent clots. Usually made of plastic, these stockings are automatically pumped up and emptied by an electric pump. They repeatedly squeeze the calves and empty the veins. The stockings are put on before surgery and kept on during and after surgery, until the person can walk again.

An anticoagulant drug (see Pulmonary Embolism (PE): Anticoagulation), such as heparin, fondaparinux, or warfarin Some Trade Names
COUMADIN
, is given to people at high risk of developing deep vein thrombosis before, during, and sometimes after surgery. Such people include those who have clotting disorders (see Bleeding and Clotting Disorders: Introduction) and those who have recently had one or more episodes of deep vein thrombosis. For certain types of surgery (such as hip replacement surgery), the risk is particularly high. People who are at particularly high risk may be given an anticoagulant when they are hospitalized even though they are not undergoing surgery. Anticoagulants reduce blood clotting much more effectively than wearing elastic stockings.

Treatment

For deep vein thrombosis, a doctor's main goal is to prevent pulmonary embolism. Hospitalization may be necessary at first, but because of the advances in treatment, most people with deep vein thrombosis can be treated at home. Bed rest is unnecessary except to help relieve symptoms.

Treatment usually consists of anticoagulant therapy with low-molecular-weight heparin or fondaparinux given by injection under the skin (subcutaneously), accompanied by warfarin Some Trade Names

--------------------
do not look back when the only course is forward

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tcw
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I agree about getting to the ER. PEs are nothing to fool around with, and the clot particles can travel other places as well. If you are not seeing any symptoms so far that is probably a good sign.

Try to avoid the Lovenox if possible - that is not something you want to deal with on top of everything else. Sending prayers your way.

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Tracy9
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Never mind.

I talked to the ER doctor. He reviewed my study and spoke with the Radiologist as well. He said when doctors see "Deep Vein Thrombosis" they panic and think "admission," but they aren't very experienced in all of this. He said mine, although a DVT, is NOT in one of the veins that are considered to be truly a "deep" vein in the arm.

He said there is no need for admission, that it can be safely treated on an outpatient basis, and that I should just start with one aspirin a day and warm compresses several times a day until I see the Hematologist next week.

He said he will be willing to explain this to my doctors if they want to call him. Well now it is six pm on Friday, so I'm not going to bother anyone and just let it go.

I'm glad I got this settled over the phone before I spent 8 hours in the ER and just got sent home.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Ocean
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Tracy,

Man, you've had an awful time with this whole thing! Why didn't they suggest the aspirin/compresses a month ago??

I hope the Hematologist can give you some answers as to when this is going to resolve for you. I would go nuts waiting for all of this...so stressful, esp for you in a household full of Lymies.

Take care,

Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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Tracy9
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Oh yeah, and I did have a postitive D-Dimer test two weeks ago also (thanks SOOO much Randibear for posting all that info) when I went to the ER for chest pain....but that was the night after my brother was admitted to ICU in a coma.

I'm sure that chest pain was stress related.....

So I guess it just all fits with the DVT diagnosis, but that fortunately it is not a DVT that requires hospitalization.

They told me to do compresses and take Motrin a month ago, but I figured that meant for a few days.....not a month!

And I would have seen the hematologist sooner, but I never left the hospital for seven days while my brother was in the ICU in a coma two weeks ago. I lived on an aerobed in the "family room"....was too sick to travel back and forth and he was too sick for me to leave, so I stayed there the whole week without ever leaving.

All these factors delayed my visit to the hematologist, so here I am a month later still with a swollen and painful arm and DVT.....heplocks every week and no idea what will happen next.

I see Hematologist FINALLY next Wednesday. We'll go from there....meanwhile, hubby gets PICC on Monday.

Thanks so much, as always, for the support.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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TerryK
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I'm so sorry that you are having such an awful time of it. [Frown]

I'd call the hematologist office first thing Monday to see if they want to see you earlier or if they can see you earlier. The sooner this is taken care of, the better.

I tried to e-mail you awhile back to see how you and your brother were doing but the e-mail was returned undeliverable.

How is your brother? Ok I hope.

Will be sending lots of good thoughts and love your way. I really hope this gets fixed quickly and you can finally move on with your IV treatment.

Terry

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Tracy9
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So sorry, it's [email protected] My pm box here is full.

My brother is great, home now and alive and kicking. Actually I believe he had his first appt today with a primary care doc, I'll have to find out how that went; I'm just wrecked today though and can't seem to stay awake.

Good idea about calling hematologist Monday, I will do that. In the meantime I'm trying to get hubby to go get me a heating pad for the arm and an aspirin!

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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oxygenbabe
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Nattokinase may help you as well. It is used by ND's for dissolving clots. Thank God it wasn't worse.
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Stacyb
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Tracy,

So sorry to hear that you are having such a
tuff time with this.

Hang in there and let us know how
it goes with the Dr. next week.

Glad you did not need to stay at the hospital.
Good to hear your brother is doing better too.

Hugs,
Stacy

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HaplyCarlessdave
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Hi Tracy! I'm sorry to hear about all these problems. What a nightmare! I had DVT in leg one time, after having multiiple injuries, and they pumqed "blood thinners" into me- but then I started bledding very badly from internal injuries, and alwmost kicked it right then and there. So there is danger of doing too much, as well as too little. Presumably they are starting cautiously, with the 1 aspirin/day; hopefully they are basing it on a large enough statistical sample!
Good luck to you. Do what they say, but ask lots of quextions, and get all the opinions you can.
Good luck!!
DaveS

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MY3BOYS
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the asprin a day is good, on
compress: use washrag that is warm but not on

HOT side, wrap with saran wrap and heating pad

on low. only leave until rag starts to begin to

cool, then REMOVE. do NOT allow to cool

avoid use of that arm, not lifting, etc.no

restricitve clothing or even tight bra stap to

that arm; you do not want the clot to travel or

dislodge. can try to keep arm above heart level but no more that 45 degree

clots that gets disrupted move, and will go to - heart.

pls. call the hemetologist, ask to speak with nurse (not receptionist)ask for work-in appt

asap/ cancel list whatever and ask if can fax

ultrasound report in of DVT

any problems with sudden shortness of breath,

rapid rate of breathing, chest pain, heart

changes--an increase in heart rate,

feeling "heavy" on chest or not being able to

get your breath, coughing up blood, sudden swetting go to ER immediatly!!!

--------------------
i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **

dx in 08:lyme, rmsf, bart, babs, and m.pneumonia.

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Geneal
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If I remember correctly,

Try not to move the arm around too much.

When I've had patient's with DVT's in their legs,

They are kept on bed rest.

I am still blown away by the careless dismissal of you yesterday.

(and again today).

Tracy, do try to be careful.

DVT's can break away and travel in the body....

Like to the lungs and brain.

I swear I would ask for another opinion.

I am not trying to scare you my friend.

Just know they treat these things very carefully when I worked in the hospital.

Sending you hugs and kisses and prayers.

Hugs,

Geneal

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MY3BOYS
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also, avoid any future lab draws on that arm ,

maybe even blood pressure checks. Prolonged clot

can result in deficient venous valve in that

location,so tight pressure to that arm could

result in another clot. arm is odd area, but is

obviously from PICC line trauma. Try to mantain

"bed rest" of arm until MD appt. seems like ER

could have started IV heprin (normal protocol)

and hade hemotology consult. if lovenox is pre-

scribed ask for the lovenox assistance program

is through drug company- is very effective and

very expensive

best wishes

--------------------
i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **

dx in 08:lyme, rmsf, bart, babs, and m.pneumonia.

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MY3BOYS
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sounds like ER doc was very dissmissive of you,.

as i re-read the posts..that to me is just so

disgusting!!! i can just say DVT's usually require hospitalization at first to begin

iv heprin, or another course of tx (depends on size, location, etc- surj removal vs disolve)

so, i just do NOT understand why ER doc would tell you stay home!! there was very good

reason your other 2 docs very saying go to er,

just because is peripheral vein does not mean is not a serious--a clot is a clot is a clot that

can dislodge and go to heart/lungs and give PE

or if does get to circulate through goes to

brain!! one DVT leaves you at risk of 68% chance

of future recurrence and if there long term can

cause post-thrombic syndrome...i just dont get it

is there another hospital to use?? show up with

ultrasound report and then say nothing else and

let them admit you????

--------------------
i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **

dx in 08:lyme, rmsf, bart, babs, and m.pneumonia.

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seibertneurolyme
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Tracy,

Think you mentioned Motrin -- need to be aware that you should be taking old fashioned aspirin -- the point is to thin the blood.

Ibuprofen or acetaminophen are pain killers but do not thin the blood.

Wobenzyme or Vitalzym are other alternatives -- these systemic enzymes could help with dissolving a blood clot. Pretty sure they would be safe to take with prescription blood thinners. Hubby has taken these with heparin.

Bea Seibert

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karatelady
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Tracy,

I'm so sorry you are struggling with this. Hopefully, you will have a quiet weekend!

Sandy

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Dekrator48
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Hi Tracy,

Sending prayers your way for a swift and smooth resolution of this clot.

take care.

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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Tincup
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Good to hear you are doing better.

Prayers work.

Let us know what the hemo says too.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tracy9
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Thank you soooo much for all the response and information.

I thought the ER doctor was actually thorough in looking at my Jan 30th reports, yesterday's, and talking to the Radiologist. I guess I just assume they know what the hell they are doing.

I'll do a little googling; I think he said it is in the "distal vein" but I'm not completely sure. No one told me not to use the arm or any of that.

I did tell them at the hospital before the PICC I had a clotting disorder, they said (lab tech) not to worry, because they were drawing blood to get a clotting time. LLD later said that was not enough of a workup with my history.

I have been not only getting my blood pressure taken in that arm, but my last two heplocks and Rocephin infusions for the last two weeks were in that arm. I am wondering if maybe that didn't help.....maybe it made things worse.

I remember the ER saying don't get blood pressure done in that arm, rest it, Motrin as a muscle relaxant, and warm compresses, but again I figured for a few days. They didn't even say follow up with Hematologist. They said it would resolve on it's own.

The only reason I had another ultrasound is because I mentioned at the Outpatient Procedure Dept a week ago when I got my heplock changed. I told them I was still having pain in the arm and the swelling had only gone down by 50%, and that it had been three weeks, was this normal?

They called up to Radiology who said no it wasn't and I needed to get another ultrasound of the arm ordered by my doctor ASAP.

So I saw LLD anyway the next day, she gave me the order, but it was Friday. I knew no one was going to get me in over weekend, didnt' want to go to ER (though she adamantly stressed "YOU COULD DIE FROM THIS") so called on Monday and got appt for Tuesday.

Got there about 20 minutes late on Tuesday, they couldnt' do it. Asked me to come back at 7 pm. Blake was in extreme pain and would not drive me back at 7 pm, had to cancel and rescheduled for Thursday, yesterday.

Today my LLD got the report and called and left message that I MUST be admitted to hospital right away. As I said, called my PCP who read report immediately and agreed. The rest I already wrote, Radiologist disagrees and thinks they don't understand this is not a risky kind of DVT.

I think I am having a Babs herx, because I can't stop sleeping (18 hours straight, completely missed today), have had to change pjs three times today (soaked with sweat), so although I have shortness of breath it's off and on and I think related to the Babs.

Thanks for all your help. I just don't think I am going to have success at the ER or any ER. They are just going to tell me I was already told it wasn't an emergency......but I will try to get into Hematologist sooner. Thing is Blake gets his PICC on Monday so I'll be tied up with him all day at the hospital...but maybe I can work it out.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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bettyg
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tracey, surprised to find this post after just seeing your post on karl's obituary online memorial book where i was too!

good luck; DVT is what i ended up 2 yrs. ago next month after my left hip surgery! i was in sad shape for 1 month


they tried doing ultrasound thing to find where it was, but it was so painful they had to STOP before they started.

i did those feet exercises 24/7 even in my sleep my feet were going.

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MY3BOYS
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i may have missed the connection, but is blake directly related to you?? if so he may want to

step back and have very good workup to assess

clotting times himself so does not repeat your

expreience. usually you have 3 choices: picc, central line or port-a-cath

if IV is to be long term may research port a cath

placement??? and pls be careful wtih any herbs/

or alternative tx's as some can and will change

the viscosity of blood and actually potentiate

the risk for clot. tracy- pls. do reseach on DVT

care, you can even google as nursing care of DVT

as you will find info about not using extremity (every time muscle contracts puts pressure on

vein and can dislodge clot) as well as avoiding

labs/ b/p in that arm-- and this is for future too, long term clot can lead to faulty vein

vaulve at that location and you are increased

risk of repeat due to vaulve prob.

please do go to er for ANY respiritory changes!!

wishing you good health and -praying for you

that God with keep his hand on that clot and not

let it move despite the crazy things that have

been done to that arm!!! let him hold it there and deliver you into the right doctors care!!!!

--------------------
i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **

dx in 08:lyme, rmsf, bart, babs, and m.pneumonia.

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Vermont_Lymie
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Tracy,

I am so sorry to hear about this problem. I am keeping you in my thoughts and sending you best wishes.

I don't have any medical advice, just hope all the doctors will finally concur and let you know what to do! [group hug] [group hug]

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sammy
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Dear Tracy,

I hope that you are feeling better today.

You are in my thoughts and prayers:) Take care!

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AZURE WISH
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So sorry you are going through all this Tracy!

Sending healing thoughts your way. [group hug]

--------------------
multiple chemical sensitvity group:
http://www.lymefriends.com/group/multiplechemicalsensitivities

Group for artists. All media welcome:
http://www.lymefriends.com/group/creativecorner


http://groups.yahoo.com/group/Lyme_Artist

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lymeric
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Tracy, glad things seem better. I'm not sure why Blake is going

for a picc on monday. Last when we spoke, he said he was doing

well on orals. (Also really glad to hear of your improvements.)


Of course, somewhere along the line you've been informed

about the average required time to pass before you can

eliminate the role of placebo response in perceived recovery

during or following treatment.. (1-3 months, someone with a

particularly "focused" or obsessive mind might go considerably

longer.)


Any competent LLMD would know and inform their patients of

this. Placebo response can happen even if the non-placebo (i.e.

abx) is used. Good luck you guys. Let me know if I can help

w/any of Blake's chores while he has a picc. [group hug]

[ 02-28-2009, 04:28 PM: Message edited by: lymeric ]

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Geneal
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Hi Tracy.

Still have Angels around you and your brother.

Praying for continued good news for both.

Love,

Geneal

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Tracy9
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Thanks so much everyone.

Lymeric, I will say Blake and I are both the last ones to ever experience a placebo effect, I often joke about it.

He is in so much denial, he would rather attribute anything and everything to something else than ever think treatment is actually getting him better if it weren't!

And I am just so oblivious, connections like side effects have to hit me over the head before I notice them. In fact at the last LLD appt, I had to complete a checklist, and realized I'd improved in areas I hadn't even noticed I'd improved in.

The only thing that really, really stood out for me was that my hair has stopped falling out. I couldn't miss that one. It is due to the thyroid treatments I've started.

Anyway, Blake really is no better. He tends to like to say he is when he really isn't, and that is more his denial than anything. The doctor prettty much pointed out to him that he isn't any better, and really needed to proceed to IV at this point.

I told her I thought I've gone from zero to maybe five percent functionality in the first month of treatment. She was discouraged, but I thought ANY improvement at all after all this time was good.

I wish I did get a placebo effect, at least then I'd feel better! But I've always been more of an underreactor when it comes to myself, as you can probably tell by my lack of attention to this blood clot issue over the past month.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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glm1111
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Tracy,


Sorry you are going thru all of this drama. After reading this thread, it is very upsetting to hear how cavalier the ER dr was.

Reminds me of when I had a right frontal skull fx and the ER dr refused to order skull films. I was very symptomatic and told him where to park his car.


I got a friend of mine to take care of me(order films) and I was admitted. The only reason I am mentioning this is because you can't always go by what this ER doc is telling you.


I would call the hematologists office and tell the nurse what you were dx with and demand some attention.


I agree with everything MY3Boys is telling you. Sending you positive thoughts for a good outcome,

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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madge
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Tracy, so sorry for all you and hubby are going
through...your one tuff gal...please take care
and praying for both of you...Madge

--------------------
madgen

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Tracy9
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So here I am with my next problem. I'm actually just getting kind of used to this stuff. Where last week this would have freaked me out, today I'm just like, "deal with it."

My heplock is leaking. When I flushed it, bloody saline just dripped down my arm. I'll be damned if I'm going to miss my infusion, especially since with the 14 inches of snow we are getting overnight I'm most definitely going to miss my outpatient appt tomorrow to get the thing changed.

So I played around with the line where it goes in, basically pushed on it hard, and managed to get the infusions all done without much further leakage.

I think the only thing I should have done was make sure I had blood return (which was just taught to me at Outpatient Procedures on Thursday), because that would tell me for sure it's going in the vein, and not infiltrated, right?

Well when I get up with another small burst of energy I'll take some saline and flush a little then see if I can get blood return. If so, I'm going to try and keep this wet and bloody thing going through Tuesday.

Okay Ocean, looking for your feedback here.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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lymeric
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Tracy, I've got a 4-wheel drive truck if you need a ride tomorrow.
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brite7
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Tracy I'm so sorry to hear about everything you are going through. I admire your strength and preseverance. My thoughts are with you both
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Tracy9
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Aww, thanks Lymeric; that is so sweet and generous of you. We have four wheel drive too; I just dont' think it's going to be worth the risk; but we'll see.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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