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#1 smac0719

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Posted 01 September 2008 - 07:54 AM

Hello all. I searched for previous posts on ports and found a thread that was helpful. My question is how long do they last and how are they put in? Are you put to sleep for the process? Are they used for both IV's and blood draws?

It has been suggested that I look into getting one because I am such a hard stick. The suggestion has come about from the IV personnel that have the hard time getting my veins (not my specialists), but I'm not sure that I have enough treatment being done to warrant the procedure. I have been having back injections every 2 weeks and that is how this came about. I am the case that throws the others off schedule because we're trying to get a vein to put the IV in. I will not be having them on an ongoing basis though. Other than that I have blood work every six weeks. I am going to speak with my rheumatologist's to get their thoughts about it, but I just wanted to get some info from those of you who are living with or have lived with ports as well.
I may have Scleroderma, but Scleroderma doesn't have me!

#2 KarenL

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Posted 01 September 2008 - 12:48 PM

Hi,
I got a port placed after my recent trip to the ER where they tried 12!!! times to get an IV started and I was having a heart attack! 2 hours wasted! My rheumatologist said "never again" and I got a port.

You are wide awake, it's no big deal. They numb the area, usually in your upper chest, mine is about 3 inches below my collar bone. They make a one in slit and also thread the catheter through your neck, near the collar bone. The whole thing takes about 20 minutes you go in and go home soon after.

They use mine for iron infusions and blood draws. Some places will not access the port unless you insist. If they won't, I go elsewhere. I even had another ER team give me a hard time, saying "oh we do IV's all the time" blah blah blah, yeah right, you haven't tried ME! Hubby finally got them to use the port. You have to get it cleaned out with heperin every month if you don't use it.

I love it. Except that you can see a little bulge it's not so bad and if you are a difficult stick it's wonderful. One little stick and you are giving blood like a pro. Good luck,
Karen

#3 RememberingToSmile

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Posted 01 September 2008 - 02:21 PM

I had one put in about a month ago - I get IVIG infusions, 5days in a row, every 4 weeks planned over the next year. The port sits on my upper left chest.

The infusion nurses here are great, and always find a vein for me; but after 1-2 hours, the vein spasms or something and it becomes terribly painful and they have to find a new spot to use. I have one great vein for blood draws on my left inner elbow, but the nurses prefer not to use it for the infusions. They want to keep it available as a last resort.

That spot on my left arm even has a nice bullseye scar to show them where to stick :)

Earlier, I asked the nurses if they thought I should have the port put in - and they said only if I couldn't tolerate the process. Same advice from my rheumatologist. They left it completely up to me, but were pleased with using it once it was in and working.



On the advice of my primary care physician, I had the port put in under IV sedation at the local surgical center. I had to go back two weeks later, though, to have it repositioned; because it possibly turned and kinked off; not a typical thing to happen, I guess. The nurses had never accessed it before and they were concerned it had a clot, which was not the case at all. From my last flare, I still have tight skin and pulling across my chest and shoulders. I suppose that contributed. I am pleased that the incision has healed nicely.


I was told the port would last well over a year and/or 100 sticks. It just needs to be flushed with heparin once a month by a nurse. When I had it repositioned, they left the access line in it and the infusions went really well.

I understand the next time I go back they will draw blood from it, too. The only issue is sometimes I need to be in a reclining position for it to stay open during the infusion. Not a big deal in my setting.


Here is my 2 cents -

Honestly, after a month, I am still not comfortable with the port in. I have to wear a bra to bed to keep my skin from pulling at it. It is still quite tender to touch; and wearing a seat belt in the car is still uncomfortable.

I have to keep reminding myself what torture the infusion process was for me. I am expecting it will get better with time, but I'd caution to think carefully before doing it. Putting the nurses off their schedule wouldn't get me to do it. Think of yourself and your needs.

Also, I just found out my white blood cell count is low.... and so consider risk of infection, etc with any surgical procedure.

*Ask me again after my next infusion round, and I'll tell you if I'm glad I had it done, or if I arrange to get it out.

In my case, if I were going through the process once/biweekly, I wouldn't get the port. My problem was that by the third day of the 5 day infusion, I was always ready to give up.


This is just my recent story - I am interested to hear the advice you get from your doctor.

-RTS

#4 Gidget

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Posted 01 September 2008 - 02:29 PM

Smac,
I have a port a cath and love it. It will be 2 years in Feb that I will have had it. I got it for the IV cyclophosphamide treatments that I was getting and use it regularly to have blood work drawn. Like you, I was a hard stick and it was a nightmare trying to get blood. I would do all the right stuff -- ie. drink lots of water 2 days before the draw, try to warm up my arm, etc.. They were using the butterfly needles but still had to keep sticking me. Now when my blood is drawn it is a little "pinch" in and a litte "pinch" out.

As far as the procedure, they do have to put you under as they basically install the port under the skin directly into the vein. I can't remember how long the procedure took -- maybe an hour. The hardest part was for the anesteologist to find a vein to give me the anesthesia -- in the end, he ended up having to go through my foot as he couldn't get anything started in my arms. You do have stiches and 2 scars -- both are about 1.5 inches -- one under the port-a-cath and the other in the shoulder area. My port looks like a quarter under my skin and initially I felt like Frankenstein because it is noticeable in a bathing suit or with certain shirts/cammys. For me, there wasn't much pain but I did have some muscle soreness when I raised my arms. This lasted about a week and I didn't take anything for it. I just noticed it.

I have to take 1mg of procardia (Warfarin in the generic) to avoid any blood clotting. So, I have been taking that since the port went in.

The port-a-cath is designed to be used. If it is not accessed on a monthly basis, then it needs to be periodically cleaned. Your doctor can give you the details on this. Mine gets accessed every 6 weeks or so and works fine every time.

The doctor says to keep until you no longer need it. The nurses accessing it say keep it as long as you want or until it fails. For me the blood draw and IVs were very very very painful without the port-a-cath, so I intend to keep in for as long as I can -- even if nobody is accessing it, I will make sure I have it cleaned every so often. Cleaning it is a 2 minute process and just a matter of changing the fluids in the portacath.

And one more thing, for the blood draw, you may need to go somewhere other than the Lab to have the blood drawn. Only an RN can access a port and they need a special needle which may mean you need to go to a different dept. to have the blood drawn. Its no big deal but it will require an appointment which your doctor will need to make. As such, you may want to discuss this with your rheumatologist.

I live here in FL and I have the blood drawn in the Hematology Dept at the Mayo Clinic.
When I go to Northwestern (Chicago) or Hospital of Special Surgery (NYC), the blood is drawn in the "infusion" room.
When I go to CT, the blood is drawn in Oncology
And believe it or not, John's Hopkins can't draw it -- the Rheumatology dept can't draw it and Oncology refuses to draw it as I am not a patient of "oncology" -- so Hopkins needs to write a prescription and then the Mayo clinic here in FL draws it and faxes the results. Go figure.

Hope this helps. Like I said, I love my port and plan to keep it as long as it is working.
Good luck. Gidget



#5 smac0719

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Posted 01 September 2008 - 05:03 PM

Thanks Gidget, RTS and KarenL! You have each provided me with some great information and given me some things to think about. Gidget, I too live in Florida and currently go to an independent lab for my draws. Sounds like I would have to go to the lab at a hospital with a port? Also when you get your blood draws, why is there still a "pinch" with a port?
I may have Scleroderma, but Scleroderma doesn't have me!

#6 RememberingToSmile

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Posted 01 September 2008 - 11:44 PM

I don't see any other responses yet, so here is what little I know....


The access port is secured in a pouch under the skin, so they use a needle to access (Huber Needle) and there is a typical stick feeling. For me it seems the same as any other needle stick. The needle is held in place by a clip that pinches a bit when they remove. it. For me, they will leave the needle and access line in place through the entire fusion week.

The nurses offered me some numbing paste the first time they accessed it, so I assumed some people are more sensitive to it than others...

-RTS

#7 Peggy

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Posted 02 September 2008 - 05:51 AM

I too had one put in for IVIG treatments. But thanks to your thread I learned something very important! I haven't had mine flushed or used since the treatments ended in June. I don't go back to my doctor until October and then she will decide if we continue with the IVIG. So now thanks to everyone here I now have an appointment tomorrow to get it flushed. Why don't they tell people these things?!

When I had mine put in I had it done in outpatient surgery and was put under. It took about an hour. I don't think my IVIG treatments would have happened without it as my veins are impossible to find. I have no veins and the ones that are there I guess are like very little spider webs. I hate getting blood drawn as it takes forever and so many tries and really becomes painful.

I also found that I have to have a special nurse use it to do blood draws. I hate when they tell me that they aren't going to use it because they don't want to go through the process of finding someone that is able to do it. I had it put in for a reason and want it used for what it's there for.

I also developed some weird muscle pain that developed shortly after it was put in. No one knows what happened but it was painful that I posted on here asking if anyone else had it. It then meant going to outpatient physical therapy to be worked on in the shoulder and neck area to work it out and it took a couple of weeks. I couldn't even put my clothes on as it was so painful, and wearing a bra was out of the question as the pull from the bra was so very painful.

Good luck to you and I hope it goes well. I'm really glad I have mine now.

Warm hugs,

Peggy

#8 miocean

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Posted 02 September 2008 - 07:03 AM

I don't have a port but am a really hard stick. As a matter of fact, I have to go today to have blood drawn and I am dreading it. I am on dialysis and have a catheter so usually they pull the blood from there but they can't for this particular test. I am waiting for a kidney transplant and know I will have to have blood drawn on a regular basis afterwards so a port is a consideration.

When you have a port can you shower? Can you swim? These are activities I have restrictions on now because of my catheter. Do you have any kind of restrictions? Any input would be appreciated.
ISN Artist

#9 Peggy

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Posted 02 September 2008 - 10:02 AM

Miocean - to answer your question .............yes you can shower and swim. It's under your skin and nothing sticks out so there's no problems doing that.

Warm hugs,

Peggy

#10 KarenL

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Posted 02 September 2008 - 11:05 AM

You can shower and swim and everything else with a port, there are no restrictions. Also, to correct one poster, the port is not in your vein, it is just under the skin. A tiny catheter is threaded into a nearby vein. It sticks because they use a needle to access the port. The thing is they almost can't miss because the port is bigger than a vein. Also, they have ones that are called low profile and are small, mine is the size of a dime. I also see that I was the only one not put to sleep for the procedure, I guess it depends on the doctor. Good luck.
Karen

#11 smac0719

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Posted 02 September 2008 - 01:20 PM

Thanks again everyone. I am really grateful for the information received. It really gives me a lot to consider. I'm glad there aren't any water restrictions as well, miocean. Living in FL it's hard to stay away from it and with the tightness, fatigue and normal aches and pains I don't sit in the tub much anymore.

I have my next back injection tomorrow morning. I think I'm just going to ask for the anesthesiologist right off the bat since he's the one who ends up putting in my IV after all others fail.

miocean - My primary gave me a script for topical lidocaine after hearing about the number of sticks and pain I go through with getting my basic blood work. It helps a lot with the discomfort (except for when they hit a tendon or ligament :angry: ). You still feel the pinch going in, but it does a good job of numbing the area and you don't feel the pain or discomfort while they are repositioning the needle to try to luck up on a vein. I have phlebotomists tell me they were going in "blind" in hopes of finding something. I have found that butterflies work the best when they are able to find one. It's bad enough that I had vein problems before the sclero, but now the tightness and thickness of my skin makes it even worse. They can't even get a needle through the top of my hand or anywhere lower than the crease in my arm.
I may have Scleroderma, but Scleroderma doesn't have me!

#12 RememberingToSmile

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Posted 07 September 2008 - 09:27 AM

Smac - did the anesthesiologist have any advice?

Peggy - any trouble getting the port flushed?



I am still uncertain about my port. It was painfree and a non-issue for a week, then I was trying on a top with raised arms and it started to pinch and be be uncomfortable again.

I am wondering if it is the way my tight skin is pulling at it. Or maybe the vascular issues I have with my arms is also present in other veins, too. Earlier, the doctor said the position looked right by X-ray.

I'll give it some rest and time, and hopfully it will be functional for the next round of infusions.

-RTS

#13 smac0719

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Posted 07 September 2008 - 12:11 PM

RTS,

The anesthesiologist agreed with getting the port if I have such trouble with sticks. He did admit that he went in blind, but only because I was able to tell him where the vein was. He said he normally doesn't do that, but figured I knew what I was talking about. He mentioned that I had a lot of scar tissue at that sight. I haven't spoken with my rheumatologist yet. I had an appt on 8/29 and totally forgot about it. Talk about short term memory. That appointment did not get on my calendar. It was on my bulletin board and I still forgot. Hopefully I can get in soon.
I may have Scleroderma, but Scleroderma doesn't have me!

#14 Peggy

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Posted 08 September 2008 - 04:12 AM

I had the port flushed out last week and it went really well. She admitted she should have told me to come in to have it done if I wasn't getting treatments. It only took about 10 minutes. I am so thankful for this site as I would have never had any idea that I needed this done. Thanks again.

Warm hugs,

Peggy

#15 RememberingToSmile

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Posted 03 October 2008 - 08:44 AM

Hi All-

Just a quick update -

After just over 2 months, I am finally getting used to my port. We aren't completely comfortable with each other, yet. It hurts some when I bump it, but no more sharp or pulling discomfort. My skin is still quite taunt across it, but the incision has healed nicely.

It has made the last two IV infusions do-able, although I still have them try to draw blood directly from a vein before using the port.

-RTS

#16 smac0719

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Posted 03 October 2008 - 09:43 AM

That's great RTS! I spoke with my rheumatologist about getting a port and he advised to keep the thought on the forefront, but he doesn't want to act on it right away since I'm not going to doing anymore IV's in the near future. He wants to wait until I begin to have a lot of trouble again (didn't have problems the last few blood draws).

I had my labs done yesterday and asked the phlebotomist her thoughts about ports. She said she doesn't mind them and prefers them, but a lot of nurses don't and still like to try a vein stick. Crazy!
I may have Scleroderma, but Scleroderma doesn't have me!