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After failing at pretty much every oral medication, I have been prescribed a trial of weekly IV saline by my private cardiologistūüėÄ. Unfortunately, although the saline itself is not too expensive, the home nursing agency that will come and administer it to me is cost-prohibitive if I were to do it regularly (I live in the UK).¬†

What is even better is that he has offered to refer me for a port or other similar long term IV access if it is helpful, so that I would be able to administer it myself. (I am however understandably worried about the risks this entails).

Unfortunately though I do not have much time as he retires in July, so I need to go through the process of trial and error with the fluids in a short timescale before deciding whether to take up the offer of central access. 

I would really like to hear people's experiences with regular IV fluids, what type of access you have, any problems with it, when, how much and how often you get fluids, how fast you run them and what type of fluid?

Initially I will be doing 1 litre of normal saline over 4 hours, once weekly, but I know some people get daily, some get less often, some feel better run fast, others slow, so would like to hear what is working for you!

B xxx

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Hello @bombsh3ll - I have been getting everything from as needed boluses to 3 l over 24 hours in hospital to now weekly home infusions of 1 l over 8 hours and may increase to 3 l over 24 hours as needed. I used to be in hospital every 6-8 weeks for Fluids due to POTS flares and in ER inbetween. Since having a port inserted and receiving weekly IV's of 1 L LR over 8 hours I have not been in hospital ONCE. I can usually function - within my limits - and get much less flares. I totally would recommend the IV fluids - regardless of what type of POTS, most people respond well to them, a total game changer. Try it ASAP and get an order from your doc if there is improvement. But don't be disappointed if another oc will not be on board after he retirs - unless the results speak for themselves. ( In my case they are obvious ). Good Luck!!!! 

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I'm so happy for you!! Nursing copay would be $95 a day for me (but I have my own nurse, my husband), and my copay for fluids is $30, so yes, it can be expensive (not as much as the ER!). 

 

I run mine through a peripheral IV, usually 1500mL normal saline over about 8 hours. The slower the better. I've used up to 2L before... it used to be that 1L made q good difference, but I've gotten worse. I find that the benefits last about 36 hours at most. I am happier, sleep better, have a better appetite, less pounding heart, much less dizzy/presyncopal/weak/blacking out starting about halfway through a liter. Good luck!!

 

I run my infusions when needed only because I need to preserve my veins. I'd do it for maintenance (and would function much better) about 3 times weekly if I could keep an IV available. Most people can leave one peripheral in and maintain it for those 5 days, but I clot too well.

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@bombsh3ll - I forgot to mention: I have a port and a nurse accesses it every week. I de-access it myself, so if I need additional litres I just keep it in. In the US a port has to be accessed by an RN since it is imperative to maintain completely sterile procedures during access. My insurance covers 100% of the home care nurse's services and I pay a small copay for the IV supplies. My sister in Germany gets her infusions at her PCP's office via peripheral stick and pays for the IV solution herself. She had 4 weekly infusions with excellent results and now is on a bi-weekly and prn schedule. 

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24 minutes ago, Pistol said:

In the US a port has to be accessed by an RN since it is imperative to maintain completely sterile procedures during access

That's confusing, most of the people I have come across with ports are in the US who talk about running their fluids themselves - maybe they just leave the needle in between nurse visits?

I am not sure what type of central access I would be offered or have a choice between. I would need to make sure the supplies for it were accessible, and I think the special Huber needles for a port might be hard to get. 

There is one patient in the UK I know of with a Groschong central line which hangs out of her chest. She and her family manage it themselves. I think I would worry about that getting caught and pulled though, and being more susceptible to infection. 

I have had two prior central lines in hospital in the past, both hung out from my neck which wasn't ideal, but I expect if it was intended for longer term a better position would be chosen. 

B xxx

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Yes, this is true. Patients with ports can hook themselves up when the Huber needle is left in. It can stay in for a week before it needs to be changed. Otherwise, if no needle is in, a nurse needs to come and access the patient.

 

Ports need to be flushed monthly if not in use, and other types of access like Groshongs, PICCs (probably the most common, hangs out of the arm), and Hickmans need to be flushed daily. You can swim with a port if not accessed but not with the others. But, you can connect your own infusion with everything but a port.

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16 hours ago, RecipeForDisaster said:

Yes, this is true. Patients with ports can hook themselves up when the Huber needle is left in. It can stay in for a week before it needs to be changed. Otherwise, if no needle is in, a nurse needs to come and access the patient.

 

Ports need to be flushed monthly if not in use, and other types of access like Groshongs, PICCs (probably the most common, hangs out of the arm), and Hickmans need to be flushed daily. You can swim with a port if not accessed but not with the others. But, you can connect your own infusion with everything but a port.

That's really helpful info thanks! I am not sure yet what my choices would be. I would like the option that has the best safety profile and longest lifespan. I think I would choose a port if that is available to me including being able to obtain the necessary supplies for it. I do not know how I would manage to wash with a line hanging out of my chest or arm, as I can only have baths (although that might change with hydration!). Also it would be so easy for it to get caught on clothing or turning over in bed and pulled out. 

Do you know if everyone with some or all types of central access device has to take an anticoagulant? I was a GP and never dealt with any in primary care. In the hospital everyone was injected with heparin daily anyway.

If I decided to go ahead with central access, I would have a thrombophilia screen first to make sure I had no underlying clotting disorder, however 5 years immobile with POTS, on combined birth control until recently, I probably do not. 

B xxx

 

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Most people don't get systemic anticoagulant, just daily heparin in the line itself (not enough to reach the bloodstream, really, it just fills the catheter). In a port it'd be a monthly heparin flush.

 

Longer term usually equals a port. PICCS can last but not usually as long. They can migrate, get pulled out, clot off... there are drugs to de-clot if it's just the catheter blocked, but they are very expensive.

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43 minutes ago, RecipeForDisaster said:

PICCS can last but not usually as long. They can migrate, get pulled out, clot off..

I've heard enough bad stuff about PICCs that I've already ruled that out. For me if I have the chance to get a port and can reliably source the needles, plus access it myself, I would go for that. I think the Groshong if not, because I like the smooth ending and valve that reduces risk of air entry & clots. From what I have read, a pump is required to infuse via Groshong because of the valve, but the person I know in the UK just hangs her bag on a coat hanger over a door and lets it run by gravity. 

Basically if you have something like this put in privately in the UK, you are left on your own to manage it or have extortionate home nursing costs.

B xxx

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Here we have those valved ends to add onto any kind of catheter. They are never open to air. 

I believe that any kind of catheter or port can use a pump, gravity/dial a flow, any administration method. I've never heard of the type of access restricting how infusions are delivered (infusion pharmacy is my career-I'm also a patient, at a different company for privacy :)).

Maybe they'd let you access your own port because you're a physician. Once in a while, we see people who do that, if they sign a waiver. I don't think people are so leery of liability there, though, right?

 

That's crazy that you're on your own. I pay 30% of everything for my infusions, but there is a "per diem" that's a set fee for a day of therapy. That covers all the supplies, delivery, fluid, etc. I could get one gauze square or a big bag of stuff and the cost would be the same.

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@RecipeForDisaster - I deal with option care as my supplier and they are pretty good. Anytime I need supplies they ship them right away and they use very good quality supplies. 

@bombsh3ll - I would not recommend accessing your own port - it is difficult to access by yourself, therefore you risk an infection, it has to be done completely sterile. My port is slightly tilted so it is difficult to access even for nurses. This is not uncommon. I do not know how it is in UK but here you can get the port accessed in infusion centers, outpatient surgery centers, cancer care centers --- they can access it for you and can go home and infuse on your own. I de-access my own, since this is not a sterile technique.  I live over an hour from the hospital and am housebound, so in my case I qualify for home care. 

It is possible to leave the port accessed after infusion - I believe for a week - but as long as the port is accessed it is an infection risk. You cannot get the dressing wet - so showering is out. It also can be uncomfortable to sleep with it in but you get used to it. Peripheral access ofcourse is difficult to keep clean and is bothersome. Risk of blood clots are real in both types of access. -- You mentioned that you found a doctor willing to prescribe the infusions. Is it possible to get them initially via peripheral stick ( which is safer ) and see how you respond before having surgery for a permanent - or semi-permanent access? 

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3 minutes ago, Pistol said:

You mentioned that you found a doctor willing to prescribe the infusions. Is it possible to get them initially via peripheral stick ( which is safer ) and see how you respond before having surgery for a permanent - or semi-permanent access? 

Yes that is what I am doing initially, when my supplies arrive I will be doing a bag weekly over 4 hours as a trial via peripheral IV. The drawbacks with that are the expense in having home nurses come to my house (£100 a time) and also that my veins are very poor due to hypovolaemia. 

Also the cardiologist retires in July so if I wanted him to refer me for some form of central access I would need to do it before then as it is very difficult to find specialists here willing to support fluids. It would then be easier to get the treatment and access maintained in the future if it was already established. 

I will have to see how it goes with peripheral access. The Ruzieh study in 2017 had most patients on peripheral access only and found most were able to wean from fluids after a few months. That would be my ideal - I do not retain fluid because I don't produce renin or aldosterone, hence I can't stand or do any upright exercise, however the things that stimulate renin and aldosterone are upright posture and exercise, so if I were able to break out of that cycle, I may not need it long term, or alternatively it could be something I reserve for special occasions. 

I am very concerned about the clot risk (more than the infection risk as this is somewhat modifiable by how the device is cared for), in fact in some respects I am thinking how on earth could I face the risks of a central line when I am too afraid to go back on combined hormonal birth control, which I have also considered in the hope of a volume boost. 

I don't think I am massively at risk of a clot any more than anyone else, it is just that having daily symptoms of hypovolaemic shock with the chest pain, tachycardia and presyncope/syncope it would be difficult for me to recognize if I did have a life threatening clot as these are all potentially presenting symptoms of one, so I would either be at A&E all the time, or not go there the one time it was a clot rather than just the usual.

Was this something you wrestled with and how do you deal with it? I read one story of a patient whose usual POTS symptoms of chest pain, tachy, fainting etc were just a bit worse one night and her husband made her go to hospital when she really didn't think it was worth it as they couldn't do anything for her, but she went that time and turned out to have multiple PEs. She did not know if they had been there all along (she had only been unwell 6 months) and it was actually that misdiagnosed as POTS, or if the immobility caused by the POTS had led to them. I don't know if the POTS went away after they were treated, but she had to stop her combined birth control straight away. 

B xxx

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I wonder if you could prevent clots somewhat with aspirin or clopidogrel. I'm allergic to aspirin and NSAIDs which doesn't help.bFor me, I have increased risk, so I can't even consider permanent access. Also, for me, I don't see fluids as a bridge... I'm already quite fit and force myself to stay upright and active, even though I'm really not doing well enough for those. I use fluids for rescue but I suppose I'd use them before a big event or something.

 

@pistol my infusion company was recently bought by option care. My company is good... it's just my insurance that's dictating the copay. I get the supplies and fluids I need delivered by a driver.

 

I have no idea how I'd recognize an MI, PE, even sepsis. I feel like those conditions 24/7. I actually wondered whether I should have a 12 lead recently because of really unrelenting chest discomfort for weeks, but I bet I'd be disregarded l

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2 hours ago, RecipeForDisaster said:

I wonder if you could prevent clots somewhat with aspirin or clopidogrel

Yes, aspirin isn't perfect and only works on one mechanism but I think I def would take low dose if I had a long term central venous access device. Clopidogrel is more costly and harder to obtain here as only used for very limited indications. 

 

2 hours ago, RecipeForDisaster said:

I have no idea how I'd recognize an MI, PE, even sepsis. I feel like those conditions 24/7

That is what bothers me. Now that my BP is normal, have tested negative for vascular EDS and am off combined hormonal birth control, I can feel pretty assured that although I feel like I am dying a lot of the time, I'm probably not. If I had the same symptoms with a port/central line, it would be a different game. We constantly live with many/all of the symptoms that people are always advised to seek emergency care for! 

 

2 hours ago, RecipeForDisaster said:

I actually wondered whether I should have a 12 lead recently because of really unrelenting chest discomfort for weeks

I think that is a reasonable request, it is pretty basic!

B xxx

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@RecipeForDisaster - before IV fluids I had permanent chest pain radiating up my left neck accompanied my shortness of breath and lightheadedness. Often this got worse when my BP was up and often resulted in syncope/ seizures. Everything always checked out normal in the ER. Then I was diagnosed with Prinz Metal Angina and was told that this can cause heart attack. My Doc said to go to ER when the pain feels different or I have additional symptoms with it. Whenever you go to the ER with chest pain they have to do a protocol: EKG, chest xray, basic blood work including cardiac enzymes .. depending on the results they will either send you home or do more testing. NEVER dismiss new or worsening chest pain - any change can be caused by a serious problem. Especially with your blood clotting issues chest pain and shortness of breath could indicate MI or PE. Please do not assume that all is normal just because it was in the past … be well!!!!!

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Fluids normally help my chest discomfort a lot. If I could afford the oxygen I was prescribed , I thought it would be a good experiment to see if that helped the chest  discomfort, too.

 

I've had the same suspicious radiating pain with nausea, etc. I haven't had a cath but was cleared by cardiology for angina type issues, sigh. Of course things can change! 

 

These weeks of discomfort were different. The quality wasn't the same, the persistence was unusual... I think DDAVP may have helped, so my guess is that it was due to especially bad perfusion. I am always hesitant to look like a hypochondriac, which is dumb, I know.

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On 5/11/2019 at 12:40 PM, RecipeForDisaster said:

I am always hesitant to look like a hypochondriac, which is dumb, I know.

Hypochondriacs are healthy people who couldn't give a fig about wasting medical appointments. (sorry but I saw enough in my career, one guy came six times with a fungal toenail & no he didn't model sandals for a living) We're the opposite! Go and get it checked. 

B xxx

 

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Well late comer here but wanted to see if i could answer any other questions you might have. I've had piccs several times, 3 ports, 2 groshong and several other temp central lines. Currenty have a groshong because my Infectious Disease dr has me use an ethanol lock to decrease infection risk. I was told that it can only be used in a groshong. I have had sepsis 10 times now and central lines are always a touchy subject but the difference iv fluids make for me is undeniable. It cut my syncope episodes by 2/3 and I'm able to do so much more with them. Over the last year I've been running fluids 24/7 equalling between 1-2 liters a day. (About 40-80 mls an hr)  

I also have a feeding tube but it's a constant battle to get enough fluids through it alone to keep me hydrated. So my orders are essentially 1 liter a day + whatever I need to total 2.5 liters total intake. 

As for showers in America there is a product called Aqua guard by Cenorin. It is like tegaderm but only sticky around the edges. I've also used this with my port when needing to shower while accessed. When i had my port insurance would only pay for my RN to access once a week so on the other days we covered the needle and sterile dressing with the aqua guard. 

I have had two PEs both unrelated to having central access. With all the picc I've had I was blessed that I never developed a DVT. I did have trouble with clots forming on the end of the line but we were always able to use Cath flo and get them working again. 

Also wanted to mention that the infection risk is lower with a port but only if it is not accessed 24/7.  

With having sepsis so many times I know what symptoms I get that are indicative of infection vs a "normal flare" biggest clue is the fevers over 103. Although in March we had a time convincing the ER Dr i had something more than the flu... they have a hard time initially identifying when I have sepsis because my wbc count is usually normal or only slightly elevated.  All to say the risk to benefit of iv fluids is certainly not to be taken lightly and a very individual decision. 

 

 

 

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15 hours ago, ANCY said:

I've had piccs several times, 3 ports, 2 groshong and several other temp central lines. Currenty have a groshong because my Infectious Disease dr has me use an ethanol lock to decrease infection risk.

Thanks for all the info! Which form of access have you found the most comfortable/safe/user friendly/long lasting. 

 

15 hours ago, ANCY said:

I have had sepsis 10 times now and central lines are always a touchy subject

Gosh that is a lot, do you have an immunodeficiency disorder of some kind or is it purely attributed to the lines? Also are they just used to run fluid or other things? I understand the risk is higher if they are used for TPN or certain drugs rather than purely fluids which is all I would be using it for. 

 

15 hours ago, ANCY said:

I have had two PEs both unrelated to having central access.

How is that determined? Do you have any underlying clotting disorder? I am really scared of clots, mainly because my daily symptoms have so much crossover with those of a PE that I am scared I wouldn't know if I had one, and also because of immobility, however fluids may improve the latter & balance out that risk somewhat. Do you use heparin to flush?

B xxx

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9 minutes ago, bombsh3ll said:

Also are they just used to run fluid or other things? I understand the risk is higher if they are used for TPN or certain drugs rather than purely fluids which is all I would be using it for. 

I disagree with this statement. The solution or medication infused does not increase the risk of infection - it is whether the access is used long-term or short-term. Every time a port is accessed it poses a risk of infection - chemo, TPN, blood products  or fluids. Also the sterile technique used to access the port ( or other access ) poses a risk for infection. The longer it is accessed ( as in TPN ) and the more often it is accessed will expose you to infection. 

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I'm in the hospital right now getting my saline infusion. I do not have a port and have no problem with getting access through my hand veins. I've been doing it since February and it makes a huge difference. I usually get a good 48 hours of improvement from each infusion. I usually take 1L over 2 hours but I may move to 2.5 or 3 hours...sometimes the faster rate is a bit agitating. Sometimes I need 2 L over 4 hours.

My neurologist put in orders to move me to home infusion but we have faced many obstacles to that with VNA (I'm in Massachusetts) so it is still not set up. He does not want me to get a port because of the risk of infection and blood clot. My dysautonomia began with a pulmonary embolism that was provoked by my hip replacement.

My PE symptoms were indiscernible from the POTS symptoms, shortness of breath tachycardia, chest pain, dizziness, feeling out of sorts. However, I usually don't get a HR of 130 sitting down which is what happened with the PE. Of course, I'm medicated now (propranolol and midodrine) so my heart rate is generally lower. So, I'm not sure I'd know if I had a PE now. If it were large enough (my previous one was small), I think you would definitely know!

I would love to have a port so that I could be independent. I hate being in the hospital so much, being reminded that I'm sick all the time. Going to the hospital and making the long, dizzy walk to medical day care is like running the gauntlet; it is physically exhausting on the way in but I'm all chipper and capable on the way out, so it's a trade off.

I would definitely try peripheral access to see how the saline makes you feel before going for the port. I recommend trying it for a full month if your veins allow; this condition is so variable, we need time to see if any difference we experience is due to a new treatment or the inherent variability of dysautonomia.

Good luck!

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Sorry maybe I didn't explain what I meant - I was on TPN through a line in my neck following bowel surgery years before POTS, and it isn't the line care it is the fat and sugars in it that bacteria love. Also with chemo, some of the drugs used are venotoxic causing local inflammation to the vessel walls which is why they need to be given into a main vessel not peripheral. The localised vessel irritation then provides a focus for infection to develop. Secondarily chemo patients are also often immunosuppressed by their treatment and hence more prone to developing infections than someone.

These are my arguments for why someone with a normal (as far as I know) immune system receiving fluids only is at less risk than the overall statistics for all people with a central line. 

B xxx

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10 minutes ago, jvherenow said:

I do not have a port and have no problem with getting access through my hand veins. I've been doing it since February and it makes a huge difference. I usually get a good 48 hours of improvement from each infusion.

Wow that is good to hear! That is what I plan to do at first but I am worried because my veins are rubbish due to hypovolaemia - before POTS they were like drainpipes - and it always takes multiple attempts. 

13 minutes ago, jvherenow said:

My PE symptoms were indiscernible from the POTS symptoms, shortness of breath tachycardia, chest pain, dizziness, feeling out of sorts. However, I usually don't get a HR of 130 sitting dowÔĽŅ

Clots are actually the bigger fear for me for that same reason. I have also had HR over 130 sitting. I feel I would have more awareness if I were developing an infection redness pain fever etc but the symptoms I have daily closely mimic those of a PE. 

How often do you receive fluids and how long do you plan to get them?

B xxx

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