I’ve learned, ( the hard way) , not to let a new nurse do my IV’s. I know they need the experience, but they’re going to have to learn on someone else. Not everyone has to have IV’s as often as us. If the IV hurts for awhile, not just the initial stick, make sure the meds aren’t going into the skin instead. I had that happen once. My arm WAS HUGE!!! The nurse had missed the vein. It took several days for the swelling to go down. You can also get lidocaine and prilocaine cream to apply at home at least 30 minutes prior to the area you want your IV. I never feel the stick of the needle now.
My initial Neuro actually told my daughter and me “No more Google for you two” which we both totally ignored.
tcwlkr said:
I am being given nothing for pain; doctors the say they do not understand the disease. Little or no support. Very frustrating. I am allergic to most narcotics. They don’t want to work w/me on pain mgmt. They “will see if the can find the time” to read what I put in front of the on this disease. I finallly have a referral back to the diagnosing neuro. I hate being doped up on narcotics. Anti-inflammatories don’t work on nerve pain. For Me. And they DON"T Listen. Am I so different in that My doctors don’t lisen?
When I was first diagnosed I spent a lot of time searching websites for info. It scared me to death! My neuro told me it is ok to get some information and to chat with people on forums that have the same disease but to take it with a grain of salt. He said that most of the people who are activly on the forums have more severe forms of CIDP. People who are very mild, you don't come across them very much on forums because they are living their lifes as if they don't have CIDP and they don't search the web for info. So just because everyone on the forum seems VERY sick doesn't mean everyone with CIDP will be that sick. He said for every 1 person on the forum with very severe CIDP there are 5-10 people also with CIDP but not activly on the forum because their symptoms are very mild and eaisly controlled with medications. So i have relaxed a bit and only search the forums to get info pertaining to what I am going through but I don't get so freaked out so much that I am going to get sicker - I guess I am very fortuniate to have started IVIG within 5 months of onset of symptoms. I know exactly when I got CIDP because it was caused by the flu vaccine (H1N1). My heart and prayers go out to all of those who suffer so much from their disease and I hope that you find some treatment to relieve your pain and suffering. We can only go forward and hope for the best and live the fullest life possible that we can with our disease.
My husband who has CIDP (diagnosed in Sept. 2010) was urged by the IV nurses to get a port because they could not find the veins in his arms. He had problems with the first two which we believe was only because of the way the surgeon had inserted them. His current port was installed (not sure if this is the right word) differently by someone else and is working like charm. It has made infusions so much easier.
I have an outpatient surgery scheduled on Tues for a port placement. I am receiving IVig therapy at home. My veins are becoming harder to access. The nurse told me to contact my neurologist to change my order to port access, otherwise the nurses would have to use my veins. Not all nurses are qualified for port access. I hope this information helps anyone else who may be in a similar situation.
I trued home health care. The nurses were awful at accessing my ports. I have a dual luman power port (HIGHLY recommend because you can get dye through it for CT's) and a port-a-cath. During the two weeks, they stuck the portacath 12 times; 5 times to access it to flush it and 7 trying to use it for potassium. I went back to an infusion center. They were leaving me at home alone; depositing blood draws into my trash can, along w/needles. It was not a good experience. I guess I would call the GM of your health care company and tell them you are getting a port and request only nurses w/port access experience.
I have had a better experience with my home infusion nurses. They NEVER leave me alone and leave me medical waste containers for the needles.(they take them away as needed) I called their office today and they are all trained in port infusions. It sounds like you had a nightmare experience I am so sorry infusions are hard enough. At home I can drift off on the couch(when my dogs will share it) I will let you know how it goes, thank you for your thoughts.
tcwlkr said:
I trued home health care. The nurses were awful at accessing my ports. I have a dual luman power port (HIGHLY recommend because you can get dye through it for CT's) and a port-a-cath. During the two weeks, they stuck the portacath 12 times; 5 times to access it to flush it and 7 trying to use it for potassium. I went back to an infusion center. They were leaving me at home alone; depositing blood draws into my trash can, along w/needles. It was not a good experience. I guess I would call the GM of your health care company and tell them you are getting a port and request only nurses w/port access experience.
Please keep us posted with how things go with you as you have your port installed. I may be right behind you in having one installed also, so I really am interested in how things go for you. I'm having my infusions done with home health care also, and have had very good experiences with them. They sit in a chair next to me during the entire process and take my vital signs every 20 minutes. They never leave anything behind and are very clean throughout the process.
nancy said:
I have an outpatient surgery scheduled on Tues for a port placement. I am receiving IVig therapy at home. My veins are becoming harder to access. The nurse told me to contact my neurologist to change my order to port access, otherwise the nurses would have to use my veins. Not all nurses are qualified for port access. I hope this information helps anyone else who may be in a similar situation.
I hope you have great success with your port. I have had my port in for several months. I have my IVIG done at the docs office where he has a separate infusion room downstairs from his office. ALL of the nurses are expert in finding veins. They literally did the Toni got a portit dance when I came in with my port. I have had no problems at all with my port. The only thing that I have reminded folks is that the planting of your port is actually surgery. I would not recommend any type of surgery of only for convenience. My veins are so bad it was requiring up to 45 minutes just to find a vein and then it would probably blow before the 5 infusions could be completed.
Let us know how it goes on Tues.
Tammy said:
Please keep us posted with how things go with you as you have your port installed. I may be right behind you in having one installed also, so I really am interested in how things go for you. I'm having my infusions done with home health care also, and have had very good experiences with them. They sit in a chair next to me during the entire process and take my vital signs every 20 minutes. They never leave anything behind and are very clean throughout the process.
nancy said:I have an outpatient surgery scheduled on Tues for a port placement. I am receiving IVig therapy at home. My veins are becoming harder to access. The nurse told me to contact my neurologist to change my order to port access, otherwise the nurses would have to use my veins. Not all nurses are qualified for port access. I hope this information helps anyone else who may be in a similar situation.
I agree surgeries should never be done for convenience. My veins too, have become hard to access and tend to blow at the end of treatment. The home infusion providers reassured me they are all trained in port access, I am hoping for a positive result, but at the same time I have learned to speak up if I am uncomfortable with my care.This has taken me years to accomplish, I have to say support groups like this are life savers.
Tammy said:
Please keep us posted with how things go with you as you have your port installed. I may be right behind you in having one installed also, so I really am interested in how things go for you. I'm having my infusions done with home health care also, and have had very good experiences with them. They sit in a chair next to me during the entire process and take my vital signs every 20 minutes. They never leave anything behind and are very clean throughout the process.
nancy said:I have an outpatient surgery scheduled on Tues for a port placement. I am receiving IVig therapy at home. My veins are becoming harder to access. The nurse told me to contact my neurologist to change my order to port access, otherwise the nurses would have to use my veins. Not all nurses are qualified for port access. I hope this information helps anyone else who may be in a similar situation.
My husband (he is the patient) and I learned the value of the power port today which of course he does not have. I took him to emergency last night. The port was most helpful in drawing blood and giving him fluids. However, when it came to the dye for the CT Scan, the technician had to go fishing for veins as his port is not the power port and cannot be used for this. It took them four tries to find a vein for the dye. Maybe you should ask your doctor / consider a port that can do both.
On a separate note, has anyone experienced blood clots (not with ports but in general) or should we consider this a completely separate issue?
Has anyone gone to an outpatient surgery center for the port insertion? I can request a lighter anesthetic like Versad(spelling) or a general anesthetic. I prefer the lighter but I am also freaked about feeling the procedure.
Ports are not necessarily a bad thing. They provide the nurses with easy access, are relatively safe, and no more painful, vein-finding needle sticks for infusions or blood draws. If you have difficult IV access, I definitely recommend one.
If taken care of properly, they are very safe. Howener, there are potential complications, ant the risks versus benefits should be considered before you and your doctor make a decicion. Below are a few links which you should find helpful, includins a PDF file and video. One is about cystic fibrossis, but focuses on the port-a-cath:
Port-a-Caths (cystic fibrosis site, but same information you need)
Excellent video, but does not discuss possible complications
Port-a-Cath Patient Information (this is from one of the catheter c...
Hi Tammy, I got my power port 2 1/2 weeks ago. I am thin on top so the port does show. It looks like a walnut got lost in my chest. It has been accessed for the infusion therapy and all went well. I am glad I got the port, no more searching for veins. I am still getting used to having an IV started in my chest, but it nice not having bruised arms all the time. The surgery is an outpatient surgery, but be prepared to rest for a few days after. Yes we are stronger than we give ourselves credit for!
Tammy said:
Nancy,
Our situations sound very similar. I had a double masectomy and lymph nodes removed on the left side. I started IVIG Nov. 2011. It hurts to keep using my right hand, but that is our only option right now and I can deal with it. I agree with you totally, that I will not have a port installed for the convenience of the nurses. I don't know how long my veins will hold up, so eventually may have to move to a port. The responses I have gotten here have helped me tremendously as I try to research what is best for my situation. I would love to stay in touch as you try to decide what is best for you as well.
Tammy
nancy said:I am also a Breast Cancer survivor, mastectomy and lymph node removal on the right. I have been getting IVig since Feb 2012. I receive my treatments at home, once a nurse had difficulty starting the IV. After 3 attempts she called another nurse, two tries later they got it started.(they tried using my hand on one attempt it hurt like hell) I was told my veins may be wearing out and I should consider a port. (another nurse said my veins are fine) I have an appointment with a surgeon on Monday to discuss a port. I will not make my decision based on nurse convenience. I have requested using nurses that are familiar with my veins. Good luck we are stronger than we think.