Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Hey guys!
So little update so this makes sense. I posted previously that I have been sick. Thankfully with days of Motrin my fevers are controlled, but I still have bloody sinuses, and gunky lungs. My breathing difficulty, fatigue, and physical discomfort are mildly worse and I have been on orals for 4 days.
I talked with my doctor again on Friday and am supposed to check back in with him tomorrow morning for a possible bronchoscopy an IVs. He is willing to work to help me stay in class by doing an outpatient bronch, and trying to get my IVs approved through my current infusion center so I can do them from home.
I am considering just asking him to go ahead and do the procedure tomorrow so I know I will have my doctor, and won't get stuck trying to schedule this in the middle of the week if things don't clear up. I hadn't decided as my fevers are better, but I should probably be safe and just have it done instead of waiting.
Okay....if I do go in and he wants IVs I will have to get a picc for my infusion center to be willing to do these. My veins do not hold up, and with excessive venous access they are not willing to battle IV catheters. I always refuse the picc in the hospital because it really freaks me out and they can manage changing my lines. Is anyone familiar with this placement? I would hope they would know by the end of my bronch if I am starting meds and would let me remain under anesthesia for the picc placement. If it happens does anybody know how long they can leave the line in, leave it accessed, and if I can expect to feel like my arm was butchered afterward?
Second question for those of you with ports. This is probably not going to be a possibility...but my brain feels as if I have to go under and have the trauma of a picc anyways I might as well give into the port surgery. They both freak me out equally as bad, so if one of them has to happen I would prefer it be a one time thing and have the port placed and left long term like it's been discussed. Do you remember having a time frame that you had to wait after port placement for it to be accessed and used? I know this would be far fetched but I like to be prepared for possibilities. If I have to go in tomorrow, and have to get IVs, and they were agreeable and could schedule me the port would only be feasible if it could be accessed for this round of meds. I may even agree to do the bronch in the middle of the week if I could do this over a picc. Any advice, thoughts, and expectations would be greatly appreciated.
Sorry for the lengthy post. This is a mess, and it's all unpredictable. My brain does not like things being up in the air!! I am not sure what my doctor uses as the deciding factor after the bronch, if he will wait for cultures, or just decide on meds based on what my lungs look like. Ugg.
Y'all are awesome:)
So little update so this makes sense. I posted previously that I have been sick. Thankfully with days of Motrin my fevers are controlled, but I still have bloody sinuses, and gunky lungs. My breathing difficulty, fatigue, and physical discomfort are mildly worse and I have been on orals for 4 days.
I talked with my doctor again on Friday and am supposed to check back in with him tomorrow morning for a possible bronchoscopy an IVs. He is willing to work to help me stay in class by doing an outpatient bronch, and trying to get my IVs approved through my current infusion center so I can do them from home.
I am considering just asking him to go ahead and do the procedure tomorrow so I know I will have my doctor, and won't get stuck trying to schedule this in the middle of the week if things don't clear up. I hadn't decided as my fevers are better, but I should probably be safe and just have it done instead of waiting.
Okay....if I do go in and he wants IVs I will have to get a picc for my infusion center to be willing to do these. My veins do not hold up, and with excessive venous access they are not willing to battle IV catheters. I always refuse the picc in the hospital because it really freaks me out and they can manage changing my lines. Is anyone familiar with this placement? I would hope they would know by the end of my bronch if I am starting meds and would let me remain under anesthesia for the picc placement. If it happens does anybody know how long they can leave the line in, leave it accessed, and if I can expect to feel like my arm was butchered afterward?
Second question for those of you with ports. This is probably not going to be a possibility...but my brain feels as if I have to go under and have the trauma of a picc anyways I might as well give into the port surgery. They both freak me out equally as bad, so if one of them has to happen I would prefer it be a one time thing and have the port placed and left long term like it's been discussed. Do you remember having a time frame that you had to wait after port placement for it to be accessed and used? I know this would be far fetched but I like to be prepared for possibilities. If I have to go in tomorrow, and have to get IVs, and they were agreeable and could schedule me the port would only be feasible if it could be accessed for this round of meds. I may even agree to do the bronch in the middle of the week if I could do this over a picc. Any advice, thoughts, and expectations would be greatly appreciated.
Sorry for the lengthy post. This is a mess, and it's all unpredictable. My brain does not like things being up in the air!! I am not sure what my doctor uses as the deciding factor after the bronch, if he will wait for cultures, or just decide on meds based on what my lungs look like. Ugg.
Y'all are awesome:)
Here is an older thread about picc lines and ports...I think there is some good info...Countr seems to know a lot about both. I know nothing so am no help at all, but maybe this older thread will help for now...
http://www.dailystrength.org/c/Common_Variable_Immunodeficiency/forum/16808970-ivigportsthoughts
Best, LuLu
I had a port a few years back when I did chemo for my NHL. I got the port put in on Friday and started chemo infusions on Monday. The port is placed just under the skin. The idea of it kind of freaked me out at first but it actually worked quite well for me. The incision where the port was put in was to the side sort of so the port was slid in and when I had my first few infusions (did mon-Fri every 3 weeks) they were accessing the port to the side of the incision so it did not interfere. I have horrible veins and would have never held up with all of what they were doing to me at the time. Accessing the port is one poke and its done. They flush it and use it for access all off that one poke. Because I was having 5 days in a row, they would leave it accessed during the week and just bandage me up to go home with a little heperin in there to keep the access open. I had the port in for about a year. I took it out cause I was done with chemo and was moving so wasn't sure I'd have insurance otherwise we had been planning on me keeping it longer cause I was expected to need it more. Fortunately I didn't need it any more.
Good luck with what ever you need to do.
your friend
deb
ports are under the shin...picc lines outside i couldn't imagine any doc placing a picc on a cvid'er too much risk of infection.
i also get an orenica infusion every 4 wks (i have sjogren;s with cvid) i do not use the port for the orenica infusion it is ONLY accessed with my Igg infusion nurses..they know what they are doing. i get my infusions in my hemo/onoco doc office so they deal with ports all the time and know what they are doing. some docs are not comfortable with cvid'ers having ports... for me my doc and i agreed the benefits outweighed the risks i infuse 60 g every 3 wks..it is a pretty large dose and with no veins it was a nightmare.
I am new here tonight.
I just read your questions.
I have a power port and love it! I have been on ivig for three years now. After the second iv with an awful nurse I set to getting a port. I think that for me it was two weeks before my next ivig. I may be wrong on that. I was so scared, however it really was alright. I found the only ones who did the placement was radiologist. I was out for it they used an xray for placement. The strangest thing for me was that I had a bump on my chest. For a month or two I grieved it. Then one day a few weeks into it I realized that it was a gift and I stopped trying to hide it. IVIG is so much easier! My veins are very tiny and the port is wonderful. I saved my arm for blood draws and someday perhaps the port might be used but for now my arm is saved. There are so many benefits to home ivig. It keeps me well and makes infusion days pretty normal. I have a small scar on my chest but it was well worth it. It was glued shut at surgery so make sure you do not use soap on it. mine oped up a little and so the scar is more noticeable. At first some folk treated me with pity thinking I had a port for cancer treatment. We become educators.