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Had Port Put In - Alot of Pain


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#1 Peggy

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Posted 12 April 2008 - 08:13 AM

I had a port put in for the IVIG treatment due to my veins being so bad and the pain from the port is unbearable. I had 3 days of IVIG treatments that took 9 hours each day they were pouring so much in so I'm not sure if this why it hurts so bad. Has anyone else had any experience with ports and if so, what kind? The surgeon stopped in the hospital room yesterday and said it its not better by Monday to come back in to have it looked at. The port itself is fine, there's no redness or signs of infection and they had excellent blood flow. The pain is around the port itself and up my shoulder and on my back. I hope someone here can give me some insight.

Thanks.

Peggy

#2 Clementine

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Posted 12 April 2008 - 03:07 PM

Peggy,
Sorry that you have discomfort. I have no answer for you but read your post and felt bad for you.
Take it easy and maybe someone will post for you soon.
Tangie

#3 Gidget

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Posted 12 April 2008 - 03:10 PM

Hi Peggy,
I have a port and have had for a little over a year. It is in my chest area and other than initally feeling like Frankenstein, I love it. No more poking or prodding to find a vein and then to have the vein collapse. Anyway, I haven't had any problems with it (knock on wood). I have to take Warfarin for the clotting and other than Warfarin not playing nice with other drugs ie Cellcept, Gleevec, my port has not been a problem.

If I recall, the first 2 weeks I had it the area was very sore and tender. I don't even really recall taking any pain meds during that time. Also, if I moved my arm out, I could feel some pain. But after 2 weeks, no pain at all and I don't even notice it unless I look in a mirror. So hopefully, yours will feel better soon.

The only other thing is that if you have a mammogram, make sure the technician is aware of the port as they shouldn't really be squeezing down on it.

Regards, Gidget

#4 Susannah

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Posted 12 April 2008 - 08:40 PM

Hi Peggy

I also have had a port-a-cath in for just over a year now. Mine is in my chest on the right side, just above the breast. It was used the very next day after it was put in as I have regular blood transfusions for GAVE, so of course it was very tender at the time. Now... Im not familiar with IVIG, but I have had Illoprost, which I recieve through my port and is a treatment that lasts for 8 hours a day for 5 days. If this goes through the port too fast, it is agony (I had pain all over and the headache was dreadful). So Im wondering if this is the same for you. As soon as the pump is turned off at the end of the day, the pain subsides until I go back the next morning for the next lot. We did find out though, that it does not have to be this painful, and the doctors should turn the speed down which we got done in the end, and discovered its just to get me out of the hospital alot quicker, needless to say, I wasn't impressed. So, if it is only painful while the treatment is going in, then my quess is, it was going in too fast, and you are within your rights to request that they slow down. Other than that, Im not sure. That is the only experience I have about that. I hope it helps. Do keep us posted as I would like to know for sure what it is.

Take care Peggy

Susannah x

#5 bmw

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Posted 13 April 2008 - 01:49 AM

Peggy, You shouldn't be having that much pain with your port. I would have the doctor take another look at it. I have a double port-a-cath that's been in for a little over a year now. The only pain I had was a little from the initial surgery. Now it just itches sometimes and looks like I have two door bell buttons on my chest. I don't know if they'll take mine out now that I've finished my cytoxin treatments or if they will leave it in. It really doesn't bother me except when something presses on it too hard. If yours keeps hurting you have it checked out and keep us posted. Good luck, Birdman

#6 LisaBulman

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Posted 13 April 2008 - 02:10 AM

Peggy,
That doesn't sound right. I don't think you should be in pain. You need to call your dr!

Please let us know what happens...

Hugs,
Lisa
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#7 Karenlee

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Posted 13 April 2008 - 03:54 AM

Peggy,

Sorry you are having pain from the port. I hope you feel better soon.

Karen

#8 TJ903

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Posted 13 April 2008 - 08:08 AM

Sorry to hear about your port. I had one put in, but it got infected and had to come out. I don't remember any significant pain, but I agree with Susannah.

Good luck, sorry that you have to go through this- sending you very, very soft hugs!

#9 Guest_SADIE_*

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Posted 13 April 2008 - 10:35 AM

Have any of you had any infections with your port? The nurses are having more trouble getting blood work from me. Last Sun. nite at the hosptial they worked a long time just trying to get the IV in and also they had trouble with trying to do blood work. It would be nice to have a port. I battle infections alot so I'm not sure about this.
Sadie

#10 GocartMoz

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Posted 13 April 2008 - 01:24 PM

Peggy,

During my treatment during the SCOT Study, I had a number of ports. One in my chest, then arm, and even in the neck. They were all uncomfortable temporarily, but after a few days the discomfort wore off. If you have had continuous pain you should definately tell a doctor and let them look at it. With the port in my arm, I developed an infection that became problematic for me but ultimately resolved. All in all, the ports are far better than continuously getting stuck in my opinion. Frankly, when I get bloodwork now, I long for the port. However, they shouldn't continue to be painful. Definately, have a talk with the doctor.

#11 Sweet

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Posted 13 April 2008 - 01:34 PM

Hey Peggy,

I'm so sorry you are having such pain with your port. A little discomfort is not unusual, but it should not be raging pain. Give your doctor a call.
Warm and gentle hugs,

Pamela
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#12 nan

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Posted 13 April 2008 - 03:53 PM

Susannah,
I noticed in your post that you get regular transfusions because of GAVE. I have GAVE too, but have only had two major bleeds. Have you had argon plasma coagulation done on your lesions?
Nan

#13 nan

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Posted 13 April 2008 - 03:55 PM

Peggy,
I am so sorry that you are in so much pain. I haven't had a port, but I know of people that have had them. They didn't say anything about being in a lot of pain. I think that you should call your doctor.
Take care,
Nan

#14 Susannah

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Posted 13 April 2008 - 03:58 PM

Sadie - Getting a Port was the best thing I ever done, I love it and Ive never had an infection (touch wood :lol: ).

Susannah x

#15 janey

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Posted 13 April 2008 - 05:34 PM

Peggy,
Is the port still hurting today? If it is, please call you doctor. Somethings not right. Ports shouldn't be painful at anytime and certainly not after an infusion.

Yes, unfortunately the IVIg infusions do take a long time. The more you get them however, the shorter the time. I've been getting them for 2 years now and my 3 day infusions take 6 hours per day. I chose not to get a port because I already have a pacemaker on the left side of my chest so to have a port on the right side would be too much. A little vanity there I think. I do get stuck a lot and come out of the 3 days with bruises all up and down my arms, but I'm now realizing it's the nurses I've had. They had a temporary nurse in this week and she got it in on the first poke, but more amazingly - I didn't feel a thing! She was incredible! I hope she stays. Of course I did have to train her on how do ramp up the infusion rather than starting at maximum flow. The previous nurse hadn't written anything down in my chart! UGH!

Are you done with this round of IVIg? How many days for this first treatment? I hope you're feeling o.k.

Big Hugs,
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#16 Susannah

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Posted 14 April 2008 - 01:00 AM

Hi nan

Ive had more than 20 blood transfusions over the last 18 months, and 8 sessions of lazer treatment, 9 counting this coming Thursday. Half of those were done with APC and the rest, also my doctors favourite method was done with 'The Snare'. Its his own invention and it definately seems to have a better effect. Unfortunately I can't remember why exactly it is different and better than APC, but I can find out. He says he doesn't understand why its not practiced worldwide because it is so much easier! Im just glad it works! Mind you, with this disease, Im finding its never ever fixed, I seem to still have to keep going back. It has meant though that I dont need transfusions so often, so thats got to be good. Im glad you dont have the same issues, nan, lets hope it stays that way :D

Take care

Susannah x

#17 Sheryl

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Posted 14 April 2008 - 01:26 AM

Susannah,
I wasn't aware that watermelon stomach caused that many problems. For some reason I thought you had to have your vessels that bleed cauterized once or twice and then things cleared up. Sorry to hear that you have to repeatedly go through these procedures. Just the transfusions can be tiresome in the getting of them. Though you would feel much better afterwards. Good luck Thursday with the snare method. Has this doctor preformed the snare method with you in the past? I sure hope things work out for you. Keep us informed on how you are doing. Get plenty of rest.
Strength and Warmth,
Sheryl

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#18 debonair susie

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Posted 14 April 2008 - 06:27 AM

PeggyDear,
I sure hope by now that you have gotten your port taken care of...something isn't right.

I hope that you are doing better... that they have resolved the problem.

Big, soft Hugs to you.
Susie
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#19 bunny pomar

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Posted 23 April 2008 - 04:31 AM

Sadie, I had my port put in about five years ago. I am now on my seventh port and they are running out of room in my chest. I amvery prone to sepsis and septic shock and every time I get a bad infection they take it out and put in a new one. I use my port every night for TPN and that increases the chance of an infection but my port is my life line and the only way I can get any nutrition.

bunny