sammy
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posted
*scroll down for update 1/4/12, thanks*
Had a consult with my surgeon yesterday. My PICC line is 11 months old so we need to replace it with a Port before the PICC gives out on me. Surgeon wants to get the surgery scheduled before Jan 1st! He was super nice and understanding of why I needed it. Even asked why I waited so long to come to him.
I have some questions for those of you who have had your ports for awhile.
What do you use to cover your ports to shower when you are accessed? I am on IV antibiotics twice daily right now and will be accessed pretty much all the time. Any suggestions or advice on this? I like to be clean
I also plan to care for the port myself. If the surgeon will let me, I plan to have one of my best friends an ICU/NICU nurse access it/ deaccesss it and do the dressing changes with me for the first couple times. I trust her. I don't trust most home health nurses. They tend not to take sterile procedures seriously when I am immune compromised (CVID) this is a huge problem... That's why I plan to care for it myself.
Do you have any favorite supplies that you use? Tricks for accessing, deaccessing, dressing changes? Tips? Any other random advice here?
Any other thoughts?
Anything I should ask my surgeon? (I already asked him a bunch of questions but you might have thought of some that I didn't think to ask)
The surgeon wants to get the new Bard power port Vue for me. Do any of you have this device yet? (many reasons why he want's me to have this particular one)
Anything I should ask my anesthesiologist? They usually use local anesthetic but since that doesn't work for me the surgeon said that I will have to talk with the anesthesiologist on the day of surgery to come up with a different plan. I'd rather not be put to sleep but I don't want to feel pain.
Thanks!
[ 01-04-2012, 12:18 PM: Message edited by: sammy ]
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I really like the embla cream ( lidocaine). I numb myself off before being accessed and it helps. I did have covers for the shower, but water seeped in. I am no longer on iv abx. Although I still have my port. I used to wash back to shower and wash my hair over he tub. I washed neck and underarms with wash cloth. You can get it wet when deaccessed. I really like the port much better. I had multiple infections with the picc. I used the port for abx , fluids, and for tpn. I now just get it flushed once a month since it is no longer in use. My dr has chosen to keep it in as I have gi issues and it is available for fluids and tpn if I need it. I don't know what kind of port I have , but I got the smaller one so it is less obvious in my chest. Good luck!
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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tdtid
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I had a port for 16 months. I recall there being a product that we purchased that was specifically for covering a port when taking a shower. Before we found that, we would use saran wrap and tape it all the way around, but then tried to not have the flow of water near that part of my body. The hand shower worked with a shower chair.
As far as having your friend deaccessing your port....when I first started, I had a visiting nurse come out once a week. But she taught my husband how to deaccess it so he could do it at the end of my last IV drip for the week. That way I could take one REAL shower that night or early the next morning before the nurse came back to put another needle in.
As gatorade girl said, the emla cream was a very very good idea since the port needles can sting a bit going in and this helps a LOT!!!!!
After about 9 months of having the visiting nurse out weekly, my husband who has NO NURSING training was putting in my port AND removing it. Yes, you have to make sure you are using a very sterile environment, but I know he was being more careful than some of the visiting nurses I actually had come out, so it really did work out well.
As far as the type of port you are discussing... there are so many out there and I'm sorry I know nothing of the one you speak of. I had the "Power Port" but I think whatever you have is what you will be use to and if it works out, you will think it is great. I had no problems with mine.
During the surgery, I only had local and was not put to sleep but they did give me something to sort of relax me. Still though, I was able to watch the entire procedure on the screen. It was a better way to go when they are watching where it is going vs just installing it and needing to x-ray it later to see if they got it right.
Good luck and keep us informed on how things go for you.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Haley
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Hi sammy - It sounds as if you know more than I do about this, but feel free to PM me with any questions.
I believe I have the Bard power port. I have had it in since October 2009 and have not had any problems.
The covering I use is in the kit that's provided. My skin had a reaction to the chlora-prep (sp) solution so I now get a kit with iodine instead.
My IV nurse usually does the accessing and I do the de-accessing. She has taught me how to access it, but the problem is that the port is located very far to the right on my chest so it is difficult for me to get the needle in at a 90 degree angle. If I had someone to help, it would be no problem.
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sammy
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Did you all have Lyme when you got your ports? Did you flare badly afterwards? Did it take you longer to recover?
I tend to relapse easily so I'm concerned with this. I need the port so waiting a few more months... is not an option. I've already waited "too long".
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Haley
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I had Lyme when I got my port. I don't remember flaring afterwards , but it has been a while, so maybe I did.
I do remember feeling relieved that I no longer had to be poked with the needle.
Just after the surgery I felt pressure in my chest and I felt I had make a terrible mistake, that I should have gotten a PICC. Eventually my body adapted and I'm now glad I have the port.
I remember going under anesthesia and the surgeon looks at me and says why didn't you get a PICC? I just looked at him, thinking is this guy kidding me, he's saying this to me now as I'm being rolled into surgery hahaha
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Dogsandcats
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I just bought a month supply of covers for my port (for the shower)
I had bought Aqua guard on Amazon and did not think they held a tight seal.
I ordered Liqua Shield on line and liked it better. The only time my port covering got moisture under it was in the summer when I drenched from babesia.
I learned to take the needle out when I was done with my IV so I could take a normal shower.
The visiting nurse put the needle in. Once in a while I got a nurse who couldn't put a band aid on right. I would give them two tries if I THOUGHT they could do it. Then I would ask the company to send someone else out. I could tell after a while when the needle was in right or not.
I am off IV's for awhile, so my nurse will come once a month and flush the port to keep it open.
If you have any questions, let me know. I was given happy juice and watched them put in the line. I felt alot of pushing and was tired after. A little sore, but that was all.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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My husband had a central line for 20 months. He would apply several layers of Saran Wrap Press and Seal. It worked very well and was inexpensive.
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Sammi
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I was knocked out when I had the port put in. The anesthesia I was given made me very nauseous afterward. You may want to talk to the surgeon or anesthesiologist about this. Also, you may want to get a double port if you will need it for some time. This is what I used.
Having a good nurse to access it is very important! I had some terrible unexperienced nurses, and their multiple attempts were very painful. I finally demanded they send someone with a lot of experience, and "one-stick Heather" (my nickname for her) became the only nurse I let access my port. Emla cream will numb the skin, but you still feel the stick of the needle.
I used Aquaguard covers and had no problem with them. I think I used the 5 X 5 ones. Be warned though, the adhesive is very sticky! I think it is best to pull it off really fast.
Good luck sammy, let us know how it goes.
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Rumigirl
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Sammy,
YOu won't regret getting a port; it's much better and more long-lasting. People gave great advice above. A few things though:
I don't think it would be practical to access yourself. It takes quite a bit of pressure, and can be painful, so not so easy. Emla cream helps a lot. And, yes, MANY nurses are NOT good at accessing ports, esp Bard Power Ports (I have one, but not the VUE). You MUST demand someone who is great at it.
I guess maybe someone could be trained to do it, but it isn't the easiest thing.
I use the AquaGuard shower dressings (I use the 7" x 7"), but they aren't entirely waterproof. And a hand-held shower hose used judiciously. The other kind sounds better.
How come you can't use the local? It worked for me fine, but I guess you don't do well with that.
Working out who will access you long-term is the big deal. It's an acquired skill; some are good at it, others are terrible at it.
Make sure you find out ahead of time what size and gauge needles that the surgeon recommends for your port. And then there are different styles of needles. Bard makes a needle for the Power Port, a Bard Mini-loc. Which is good, except that it retracts when you de-access, which makes it wiggly going in, so more prone to errors accessing.
PM me if you need more help.
I use the IV 3000-Hand regular dressings, as they are hypoallergenic---4" x 4 3/4". There is also Op-site. You also need an extension set when you are infusing yourself, I find 7-8" works best. Then when not in use, you need to tape it up out of the way. I now use Steri-strips for that, as they are less allergenic than the tape.
It will be fine, as long as you get the accessing issue straightened out. The surgeon should give you a card showing the configuration of the Power Port, along with another one w/ the details of the port (I carry them in my wallet in case). Showing the one with the configuration to the accessing nurse helps A LOT, as it is different from other ports and a little harder to access (smaller area to access), with 3 bumps in a triangle to guide the nurse). If they feel for the bumps carefully before using the chloroprep and sterile gloves, that helps a lot, too. Attention to detail is important.
ANd, of course, you must INSIST always on clean, sterile technique all the way. I've gone through absolute h*#% with that one, as nurses will so often do horrific unclean, unsafe stuff that leaves you open to sepsis!! I've gone through umpteen nurses as a result with LOTS of agita with the nursing agency in between. HOpefully, you will work something better out. But accessing yourself??!! NOt so sure about that one.
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Dogsandcats
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Yeah, I forgot....if I didn't get a large enough water proof "patch" to cover the tagaderm (the little pad that covers the port needle -
the adhesive of the cover up would stick to the tegaderm and I would end up with a sticky mess.
I have an extra not opened bag of 7 I would be glad to mail to you.
Everyone is right, if the nurse doesn't know what they are doing - bye bye. Wait for someone who does. There are some real wack a doos out there.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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sammy
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Thank you all so much!
I am going to get the smallest power port available. Wish I didn't have to get one at all but this is something that I need so I just have to accept it and move on. Didn't want the PICC either...
The surgeon is going to put the port high up, under my collar bone area so that he can secure it well. I have a collagen disorder so our biggest concern is that the port could flip or move out of place then not be accessible. Our goal is for it to last 7-10 yrs.
Unfortunately, I can't have just local anesthetic for the surgery because it doesn't work for me. I've learned this the hard way when I got my impacted wisdom teeth removed, ouch! The reason why it doesn't work is because I have Ehler's Danlos Syndrome. I metabolize some medicines way too fast.
I plan on caring for the port myself because I have a primary immunodeficiency. If I do the dressing changes, accessing and de-accessing myself it will for sure be sterile. I do not like other people touching my PICC line now. I really do not like the thought of other people touching my soon to be surgically implanted port.
I currently care for my own PICC line. I tolerate a nurse once a month for my IVIG infusions. Basically because I have to for insurance purposes. I'd rather her come to my house than me go to the hospital.
Thank you all for the suggestions for the shower dressings, that is exactly the kind of information I need! I will have to order some.
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sammy
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Did your surgeon access your ports during surgery for you? Or did they want they want your sites to heal for a few days first? I've heard both ways. Guess I will have to ask my doc.
Is Emla cream over the counter now or still RX?
I'm sure I'll think of more questions Posts: 5237 | From here | Registered: Nov 2007
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Sammi
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I don't think my port was accessed during surgery.
You may want to consider getting a double port since you need it to last. Then if it gets clogged or if there is a problem, you have the other one. They are still relatively small.
I got the Emla cream with the home-health supplies. I believe it was prescription, but this was several years ago.
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Rumigirl
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Yes, the Emla cream is an rx, but generic, so cheap.
You can ask the surgeon to access the port for you, while you have anesthetic in you. That way you don't have any break in your tx, and you don't have to be accessed while it is still healing. That's what I did.
My surgeon put the port in low on my chest. I was concerned about it showing with women's scoop=neck or V-neck tops. But it sounds like you have other concerns that top vanity.
Do you know anyone else that has accessed themselves? I know that you are a nurse, it's just that it takes quite a bit of pressure/force to get it in, it's not painless (although the Emla helps a lot), and it has to be very exactly placed, esp with the Bard Power Port (a very small area to access). So I think it would be quite difficult to do yourself. Maybe not impossible, but harder than you may think.
I COMPLETELY understand how feel about home nurses, however. I've been through absolute h*$% waaaay too many times with careless, incompetent nurses. Untold grief over it (well "told" to be sure!).
On the anesthetic issue: I do know that having had much vit C beforehand can clear local anesthetic from your system, so it doesn't take effect. That happened to me with a wisdom tooth extraction. The dentist kept giving me more and more injections of lidocaine, and I wasn't getting numb! He finally yanked it with no anesthetic----arggggh!! We figured it out afterwards. Maybe that's what happened with you, too??
But you don't want to take any chances with port surgery.
It will be fine. You'll be glad you did it, once it's done. I know, all of us would rather not have to do ANY of this, but here we are.
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sammy
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Hi friends, I found out that my surgery is scheduled for thursday January 5th. (Pending Cardiologist's review of some test results then I should be good to go)
I'm feeling more nervous. Last week had to deal with fevers and almost got my PICC line pulled because of it. So I'm kinda ready for this to be over with, but not really ready.
The surgeon said that he would access the port immediately for me if I wanted. I will talk with him more about placement before the surgery. I would like the port to be somewhat discrete/hidden if possible but it is absolutely necessary that I can access it myself.
The anesthesia issues started way back before I took any medications or supplements. It is most likely due to my Ehler's Danlos Syndrome. I metabolize medicines too quickly and end up needing a higher dose. It's happened with more than just lidocaine. So not really sure what they will do with me. I better start praying for a nice and good anesthesiologist!
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Sammi
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sammy, I hope everything goes smoothly for you on Thursday. I am sure the anesthesiologist will keep a close watch on you during the placement.
Good luck! Post when you can to let us know how everything goes.
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sammy
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*Update 1/4/12*
My port placement surgery is tomorrow afternoon at 5pm!
Friends, will you please pray with me that my surgery will go well and that God will help me to heal quickly with no complications.
Thanks so much Posts: 5237 | From here | Registered: Nov 2007
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Sammi
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Good luck tomorrow sammy! I pray that all goes well.
Please let us know how are doing when you can.
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momintexas
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You will be in my thoughts and prayers tomorrow!
Sending you a virtual hug.
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Rumigirl
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I'm sending love and prayers. It will go well, I"m sure. Let us know how you are when you are up to it.
I am reminded that I meant to contact a nurse or two that have had ports about the issue of accessing yourself. I still think that would be hard, but maybe it's possible.
You're brave, and with a good surgeon, it's really not bad. I know this can't be you, given your anesthesia situation, but I just had local anesthesia. ANd i talked to the surgeon through it!! Funny, huh?!
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sammy
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Thank you friends!
Your prayers are comforting to me. I wouldn't be so nervous if I haven't had such awful experiences in the past with anesthesia.
Thanks again, big hugs!
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Dogsandcats
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Let us know how it goes....
God bless.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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Dekrator48
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Praying for you and the Medical team that will care for you!!
Big hugs dear friend!!
-------------------- 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 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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lightfoot
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Mine healed very quickly. I was surprised that it could be used immediately. My thoughts and prayers are with you and the medical team.
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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fflutterby
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Yes, sammy please let us know how you do, you are on our minds and in our prayers !! (((hugs)))
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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Amanda
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sammy
for some, accessing the port is always painful. personally, i found teh emla cream did not work that well, and it has to sit on there for at least 30 mins.
What works so much better for me is ethyl chloride spray. It makes the area really cold instantly, and numbs the area. A good IV nurse wil know this
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Rumigirl
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Aha! That's a really good tip, Amanda. The Emla cream does work well for me, but only if it's on long enough. ANd sometimes it slides off, etc. So the ethyl chloride spray sounds good. I assume that you spray and then clean the area after that. Right?
sammy, let us know how you are doing when you are up to it.
We're praying for good healing (now that the surgery is obviously over).
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Tracy9
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How did it go?
I've had my port for over a year. I will tell you, especially since it's over, the surgery was a breeze, I was awake and chatting with the nurses the whole time. But once the anesthesia wore off I felt like I'd been SHOT IN THE CHEST. I was totally unprepared for the pain. I was floored. It was horrible. I had to take Vicodin, 2 of 7/750, every 4 hours or I'd be in agony. It took about a week for the pain to subside.
As far as showering, I've tried everything, and someone told me this and it absolutely works. When you get the needle changed, first pull it out yourself the night before and take a nice hot unemcumbered shower. Remember this is NOT lie a PICC, there is a rubber seal between your body and the opening that closes the second the needle comes out. Nothing is open.
In between, I shower with nothing covering it. The dressing they put on the needle, I have them put it on tight, with the line coming out the bottom and sealed well. The needle is well covered and again it is going into a tightly sealed rubber cover, not an open vein. I shower freely just like that. As soon as I get out I pat it dry. I do use a handheld (well I've gotten lazy about it) and get it dry right away. Once I'm dried off, I remove the plastic dressing, and let it air out. Maybe times it is perfectly dry anyway. Most times. If not I let it air dry, then apply another clear plastic dressing tightly and securely.
This method works the best. Covering it with Saran Wrap, etc just creates a steam pocket and will cause condensation under your bandage. It is best to just shower with the bandage securely on. It really does keep the water out. Then remove it, let it air dry, and apply another bandage. My nurse said there is no need to apply any alcohol or anything since the needle is not going into anything other than a piece of sealed rubber. However if it makes you feel better, wash the area before covering it. I never have, the needle is secure, and have never had any problem with infection.
It is totally different from a PICC. I love it so much more!!! There is much less risk of infection because there is nothing open, no open vein, no open area...it is under your skin and sealed tightly by the rubber around the needle.
I hope it went well and I'm anxious to hear. Wait till you infuse and your hands are free...it's a great feeling!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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sammy
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Thank you so much for your prayers friends
I'm doing OK. My surgery went well.
They gave me IV sedation with multiple different meds. The anesthesiologists admitted afterwards that they were surprised at how much they had to give me to sedate me, how quickly I woke up, and how alert I was afterwards. I told them that this had happened to me before but I guess they had to see it for themselves.
So now I have a little tiny port. They accessed it for me in the OR but didn't have a small enough needle. They put a 1in needle in and it was sticking out more than half an inch!
I couldn't deal with that needle sticking out so far so I had my friend come over today to help me change the dressing and needle. Turns out I needed a 0.5in needle with a Biopatch to help prop it up some.
So I'm still in a lot of pain but at least now I should be accessed properly. I was the last patient of the day and my surgeon actually forgot to write a script for pain meds. Some resident wrote for vicodin 5-325 strength 1 every 6hrs quantity 8!
I definitely feel that pain medicine start to wear off at about 3.5-4hrs. It wakes me up from a dead sleep.
Praying my pain will be better tomorrow because I will run out of pain medicine today. I don't normally take pain medicine so I have nothing to fall back on. Too bad it's the weekend because otherwise I would call the surgeons office to ask for help. Now I just have to hope and pray that it gets better.
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Dogsandcats
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Good news it is done! If you need more I am sure there is a doc on call.
Hopefully the pain will start to lessen up.
Take good care, drink a lot of water to flush out the anesthesia....
Gentle hugs
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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Dekrator48
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So glad it is over and went well, sammy!
I continue to pray for you!!!
I agree, that there should be someone on call who can help you since you did not recieve an adequate amount of pain meds to begin with.
-------------------- 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 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Tracy9
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Sammy, I'm glad it went well. They told me to take Tylenol! I nearly died when the anesthesia wore off. I was like, ARE THEY KIDDING??? Definitely call the surgeon's office if you need to, that's the appropriate place to call anyway. Once you leave the hospital doors you are no longer their patient.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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fflutterby
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Praise God, glad to hear it went well !
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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Sammi
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sammy, I am glad that all went well. I agree with others about calling the office if you need more pain meds.
I hope your pain decreases soon.
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kidsgotlyme
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My daughter just had a port put in last Friday, and she had to take her pain meds for four days.
If you don't have enough for at least four or five days, I would definitely call the surgeon and ask for something to be called in.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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