LymeNet Flash: Port Problem...UGHHH!!!

This is topic Port Problem...UGHHH!!! in forum Medical Questions at LymeNet Flash.

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Posted by Kreynolds (Member # 15117) on :

Hey,

This past week I have been having some problems with my port.

First of all I can barely flush the line and when I hook up to my ABX the electric pump keeps saying occlusion.

I know what that means but nothing is clamped or cutting the flow off.

I had the nurse come out today because we both had a feeling that it could be a clot.

Last week there was no blood return even after reaccessing it twice.

After she used the declotter and waited, it got a blood return and flushed fine, UNTIL I did my ABX about 20 min after she left.

I just finished my ABX and have been noticing along with the resistance while flushing and infusing my ABX, I am having dull pains where my port is and where the end of the catheter would be by my heart.

In April I was in the hospital for 18 days out of the month for a similar situation with my PICC line.

This port is only a couple of months old and I take really good care of it, but sometimes that is not enough.

So with all this going on, I was curious to see what you all think may be going on and what I might do about it???

I am tired of going to the ER and my doc opted out of sending me there today for some tests because he wanted to use the declotter instead.

My problem remains that the port is EXTREMELY hard to flush, I even had my wife try and her hands hurt after trying.....

If it was a PICC I would have it taken out, but its a port and its more indepth, which I really don't want to deal with right now.

I am thinking of asking my doc to stop the IV ABX and just take high dose orals, but if there is a problem it's gotta come out.

Ughhh....anyone???

-Roy

Posted by bettyg (Member # 6147) on :

tosho, so glad you were able to give roy 1st hand experience. i have NONE!

cathy is off board until thurs. sometime; in NY for her llmd appt. and taking in 2 broadway shows ... no laptop with her ... fyi [Smile]

best wishes roy [group hug]

Posted by Kreynolds (Member # 15117) on :

tosho,

Yes I use 10ml a day of Heparin. I haven't been doing anything that envolves lifting heavy things.

I don't know... It just doesn't seem right..

As far as mechanical damage, what do you mean?

Thanks for your help!

Posted by seibertneurolyme (Member # 6416) on :

You might consider taking systemic enzymes in addition to the heparin or heplock (whichever you are using).

Wobenzyme or Vitalzym or nattokinase or lumbrokinase etc.

Hubby has had a PICC line for over 5 years now, but never a port.

Bea Seibert

Posted by hshbmom (Member # 9478) on :

Roy,

You can have your physician request a dye study to assess the patency of your port.

This is done by an interventional radiologist. Any hospital radiology department should know how to do this procedure, especially ones with cancer treatment centers.

They inject your port with dye, then take x-rays as they inject the dye.

This is a simple, easy, and fast procedure.

If it's clotted the doctor may know how to try to dissolve the clot.

When a hospital doctor learns you have the port for Lyme treatment they may tell you to take it out immediately, and may tell you there's no way to test the port.

Get a second opinion.

Call a cancer treatment center and talk to their head nurse. They can tell you who to see and what to ask for. But, your doctor will have to order any test or procedure.

Never allow blood draws, even though your port may be designed for blood draws. This just invites a clot.

I think after a blood draw and dye study the port must be double flushed. Read the back of your port ID card. It has a handy chart telling you how much of everything to use after different procedures.

Posted by Kreynolds (Member # 15117) on :

Thanks for all the replies...

Yes I flush 5ml Heparin in the morning and 5ml at night.

My doctor might send me for that dye test. He was going to yesterday, but being I see him tomorrow I will discuss it with him.

I have told the nurses time and time again NOT to draw out of my port, but they do it anyway.

Now I have no blood return and can barely flush the darn thing.

Also I have noticed mild chest pains where my port is and where the catheter would end by my heart.

I don't know if it is related.

Thanks again!

Posted by Kreynolds (Member # 15117) on :

seibertneurolyme,

I am currently taking Wobenzyme....

Posted by hshbmom (Member # 9478) on :

If you tell the nurses and they don't listen, then don't let then near you. It's your port and your health. Any complications will become your responsibility.

One screw up by a nurse and your port is ruined. I know this from experience. Now my surgeon refuses to put another one in. ..only got to use it a few times, then a zealous nurse shoved a needle in it so hard it bent into a fish hook shape...not fun!

You should not be having chest pain. I suggest you get that dye study TODAY...or go to the ER.

Posted by Kreynolds (Member # 15117) on :

I agree.....

I am currently on the phone with my doc, he wants to send me to the surgeon that put the port in....

I think its a little more urgent than that....

Posted by lightfoot (Member # 2536) on :

Hello Kreynolds,

You've gotten some good advice. Definitley pursue an immediate answer.

One of many very important points made by others is, it's your port!!

I had a port for 6 1/2 years. I'd had a PIIC prior.

The ability to use IV ABX was a turning point in my treatment.

Good luck......

Posted by hshbmom (Member # 9478) on :

Who ordered placement of the port?

The surgeon who placed the port refused to order a dye study. I don't think he was aware it could be done. He did order an x-ray to see if the catheter was in place.

It was finally my PCP who ordered the dye study. The one who ordered the port and the surgeon refused to order the dye study.

Did you call a local cancer treatment center? Ask to speak to a supervisor. They're much more knowledgeable about port care, things that can go wrong, and what to do about them. They can tell you were to go to get some answers.

Posted by Kreynolds (Member # 15117) on :

Ok, my I have an appointment with my Lyme doc tomorrow.

After the appointment I am going for the dye study.

If there any problems with the port they are going to take it out and put in a Power PICC.

Does anyone know if I will be admitted if there is a problem?

I was just told it was all outpatient..

I am going to talk to my doctor to see if I can just go on high dose orals.

I have had 2 PICC lines and 1 port in 2 years.... I am getting Real tired of IV.

Thinking about going on oral Mino....

Gotta love Lyme! [bonk]