A few more questions about medical ports
May 23, 2022 7:15 AM Subscribe
My port is acting up. I have questions.
I had a port put in for cancer treatment just before the pandemic. It worked beautifully for two years, but blood draws from it started getting harder a few months ago and then became impossible to the point where I had to get blood drawn from my hand. My blood draws are always followed an hour later by chemo infusions. So far, when I get to the infusion center, they give me alteplase, which solves the problem.
The nurses tell me that what I've probably got is a fibrin sheath. I believe they think this because the alteplase seems to take care of it. However, they also thought one infusion of alteplase would give me a few months of blood draws, but it only gave me one week. My doc suggested a port study, which I've scheduled.
However, when I called radiology about the port study, they told me not to eat for six hours and to have a driver. This did not seem to go with what I'd read about port studies online, so I told the receptionist I wanted to talk to someone about it. It turns out that they want to be able to go to surgery immediately after the study if you need it - so they tell everyone to come in prepared for surgery. This seems insane to me. When I pushed back, I was told I could just do the port study and have surgery later if I need to.
Questions:
1. Is there any really good resource online explaining wonky ports to patients? I can't seem to find anything between very basic stuff and research studies. I can usually do pretty well with stuff aimed at medical professionals, but I'm not finding anything detailed there either, though I may not know where to look.
2. Do you have experience with port issues you can share? The person at radiology told me that it could be problematic if you try to replace ports multiple times. The current treatment for my cancer is lifetime infusion chemo and I have awful veins, so living without a port is unlikely to happen.
3. Am I right that having everyone come in ready to go to surgery just in case is really weird? My inclination is to just say I'm not going to do that.
Thank you!
I had a port put in for cancer treatment just before the pandemic. It worked beautifully for two years, but blood draws from it started getting harder a few months ago and then became impossible to the point where I had to get blood drawn from my hand. My blood draws are always followed an hour later by chemo infusions. So far, when I get to the infusion center, they give me alteplase, which solves the problem.
The nurses tell me that what I've probably got is a fibrin sheath. I believe they think this because the alteplase seems to take care of it. However, they also thought one infusion of alteplase would give me a few months of blood draws, but it only gave me one week. My doc suggested a port study, which I've scheduled.
However, when I called radiology about the port study, they told me not to eat for six hours and to have a driver. This did not seem to go with what I'd read about port studies online, so I told the receptionist I wanted to talk to someone about it. It turns out that they want to be able to go to surgery immediately after the study if you need it - so they tell everyone to come in prepared for surgery. This seems insane to me. When I pushed back, I was told I could just do the port study and have surgery later if I need to.
Questions:
1. Is there any really good resource online explaining wonky ports to patients? I can't seem to find anything between very basic stuff and research studies. I can usually do pretty well with stuff aimed at medical professionals, but I'm not finding anything detailed there either, though I may not know where to look.
2. Do you have experience with port issues you can share? The person at radiology told me that it could be problematic if you try to replace ports multiple times. The current treatment for my cancer is lifetime infusion chemo and I have awful veins, so living without a port is unlikely to happen.
3. Am I right that having everyone come in ready to go to surgery just in case is really weird? My inclination is to just say I'm not going to do that.
Thank you!
What kind of port (manufacturer / brand / type) do you have? If this one failed, or is failing after 2 years, and you are looking at a lifetime of port infusions, perhaps a different type of port is called for? Is it a regular or a power port? Single or Dual Lumen? Speak with your doctor about what they've placed this time and why they think that's the best option. There's literally dozens of different port types with different characteristics, some of which won't apply to you (pediatric use), and while there aren't any bad ports, but you want to make sure you're getting the best port FOR YOU.
Of course, if you're in the US there might be differences in what insurance will pay for or not. Or what the Dr. will normally purchase for their practice or not. There are "budget" ports, and more expensive options. Why does your Dr. choose the ports they implant the most often? Cost, functionality, ease of use and familiarity for their nurses? The port should have also come with paperwork from the manufacturer. You can contact them as well to see if this is a known problem with a solution that isn't just "replace it every few years" or if they're willing to share more info with you.
posted by sharp pointy objects at 2:29 PM on May 23, 2022 [1 favorite]
Of course, if you're in the US there might be differences in what insurance will pay for or not. Or what the Dr. will normally purchase for their practice or not. There are "budget" ports, and more expensive options. Why does your Dr. choose the ports they implant the most often? Cost, functionality, ease of use and familiarity for their nurses? The port should have also come with paperwork from the manufacturer. You can contact them as well to see if this is a known problem with a solution that isn't just "replace it every few years" or if they're willing to share more info with you.
posted by sharp pointy objects at 2:29 PM on May 23, 2022 [1 favorite]
I am not a doctor, I do not have a port, this is not advise. This is just my personal experience living with a SO with a port and him having Chemo every two weeks (in general) for the past 4 years and me sitting in DR offices and infusion centers talking to all the talky people.
Like many things, so much depends on your unique physiology, My veins and my SO veins are not your veins and how your body reactions to the drugs is specific to you. Each case is unique and so there is no clear cut answer.
My SO just had his port removed after 4 years because he got a minor infection, which cleared up with some strong antibiotics but the skin would not heal, he saw the surgeon that put it in and he was like “ yep, than needs to come out, hold on let me get a scalpel” in truth it involved a bit more but barely so it came out at the same visit and 3 stitches later he drove himself home. The new one goes in next week. Since my SO is thin, and he has little to no fat, there is not much padding between skin and the port, this causes thinning faster and necrosis (eww) was the concern. This info was provided per the surgeons experience and fits with what I have heard from a few others.
A year ago he had a port study for another issue and they did the same as you describe. Come in prepared for surgery (He did not need it) sometimes it is because the issue might be severe and they need to fix it sooner rather than later or because they want to keep you as close to your Chemo schedule as possible.
I do think that if you are not comfortable doing it in one session, you should tell them so and push for the study one day and make the decision on how to proceed later, after you know what the problem is. Chemo is hard, Chemo without end is even harder. I wish you the best.
posted by ReiFlinx at 4:02 PM on May 23, 2022 [1 favorite]
Like many things, so much depends on your unique physiology, My veins and my SO veins are not your veins and how your body reactions to the drugs is specific to you. Each case is unique and so there is no clear cut answer.
My SO just had his port removed after 4 years because he got a minor infection, which cleared up with some strong antibiotics but the skin would not heal, he saw the surgeon that put it in and he was like “ yep, than needs to come out, hold on let me get a scalpel” in truth it involved a bit more but barely so it came out at the same visit and 3 stitches later he drove himself home. The new one goes in next week. Since my SO is thin, and he has little to no fat, there is not much padding between skin and the port, this causes thinning faster and necrosis (eww) was the concern. This info was provided per the surgeons experience and fits with what I have heard from a few others.
A year ago he had a port study for another issue and they did the same as you describe. Come in prepared for surgery (He did not need it) sometimes it is because the issue might be severe and they need to fix it sooner rather than later or because they want to keep you as close to your Chemo schedule as possible.
I do think that if you are not comfortable doing it in one session, you should tell them so and push for the study one day and make the decision on how to proceed later, after you know what the problem is. Chemo is hard, Chemo without end is even harder. I wish you the best.
posted by ReiFlinx at 4:02 PM on May 23, 2022 [1 favorite]
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This wasn't for cancer, but I had to have standard fistulagrams every six months or so for my dialysis access and we were told the same awful, frustrating thing: We had to fast from midnight the night before (even for appointments late in the afternoon), we had to have a loved one sacrifice a good part of their day to give us a ride there and back just in case they opted to operate, we had to mentally be prepared for a scalpel and twilight sedation at a moment's notice. It was kind of a mindscramble and I never did get used to it. I did end up opting for returning to my vascular surgeon's office for this kind of thing but that meant more appointments.
I know it's frustrating and I'm sorry, FG. I hope there's an alternate solution.
posted by mochapickle at 8:24 AM on May 23, 2022 [1 favorite]