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bombsh3ll

IV fluid experiences?

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@jvherenow - in my case I also ended up in the hospital regularly for infusions for emergency treatment. Eventually we went to weekly infusions but found that the slower the infusion was given the better it was tolerated and the longer the effects lasted. In my case it is not the AMOUNT of fluid I get but the LENGTH OF INFUSION that helps. So - 1 or 2 litres over 2-4 hours was less helpful than 1 litre over 8 hours. I am receiving weekly home infusions of 1 l LR over 8 hours weekly through a port for the past 8 months and had very few syncopal episodes and NO hospitalizations/ ER visits since. ( used to be in hospital over night for fluids every 6-8 weeks ). 

I have also found that LR helps me better than NSS - I do not retain fluid or get high BP or headaches from it as I do from NSS. 

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The groshong is definitely more low profile and nothing sharp/hard so I can lay on my side without discomfort. (I'm a side sleeper) with ports if i layed on my side where the needle penetrates my skin would hurt. Same with clothing sometimes. It was nice with the port to have the ability to deaccess and not have it constantly hanging out. I was accessed all the time though so didn't have much opportunity to enjoy that. Groshongs are designed to not need any dressing after 9 months, my Drs and I will probably never feel safe doing that though. The dacron cuff on the groshong is supposed to keep any bacteria from being able to migrate internally. Groshong catheters are sutured in place, mine has 3, which can sometimes get itchy under the tegaderm.  Both groshongs and ports are tunneled catheters which reduces some of the risk of blood infection because it doesn't immediately enter the blood stream like a PICC or temp central line in the neck. 

I do not heparin flush the groshong, it's not necessary, according to the manufacturer, because it has a valve to prevent blood backing up into the line. I believe this is true because I rarely have trouble getting blood return. When i do it seems positional. When i had my port it I had to use cathflo frequently, heparin helped but still would clot on the end and it was VERY positional. The last port I had was also tilted making it a little more difficult to access. If it wasn't my nurse it would usually take 2-3 tries. 

As a side note, not real important but a bonus to a central line placed in the chest is I can slip the iv bag and pump through my shirt and don't have to unhook to get dressed. Not a big deal i guess unless you are hooked up 24/7. 

Ido have an IgA deficiency, not sure how much that weighs in on the sepsis. Whatever keeps my wbc count from rising is almost certainly related, we have not identified the cause as of yet though.

I've had so many lines pulled because of infection I don't think ive ever lasted what would be considered a normal length of time with any line. 

I was on tpn for a while but had 3 blood infections almost back to back so it was deemed to dangerous for me because the sugars and fats were allowing the bacteria to grow.  It's a balancing act but right now I'm semistable with 2 liters iv fluids in order to push more with my tube feed formula to get calories up. 

I get iron infusions about twice a year and hope to soon resume ivig which we were doing once a month. Other than that it's just iv fluids and recently started a prn phenagren iv push.  Over the last year or so ive needed a ton of blood transfusions (28 units total) which have also been given through port/groshong. I've had sepsis twice in the last 12 months. The theory on both of those being a gi bleed introducing bacteria that migrated to central line and colonized.  In March it only took 18 hours for cultures to come back positive from the port and 24 hours for the peripheral. Until they pulled the port I was not really responding to the iv antibiotics, which was kind of scary. 

As for the PEs i do not have a clotting disorder, they believe there is at least some connection to the severe anemia I had at the same time. Also deconditioning and inactivity. (Wasn't moving much because I was so anemic) trial off blood thinners was unsuccessful due to reclotting so on blood thinners indefinitely. 

First PE was discovered after treating for severe anemia (hemoglobin 5.4) and seeing very little improvement. The infectious disease dr who was rounding on me ordered the CTA because things were not adding up. I was needing 4 liters of supplemental O2 just to keep me sitting between 88-93. That was probably the most striking and concerning thing that was diffrent from POTS or anemia. I was so short of breath I could only say about 3 words before stopping to breathe. I was having crazy fevers with no pattern (I have a sort of fever pattern with sepsis) and my heart rate even with tons of fluids and blood was still around 140s resting.  The other symptoms I had could have been a flare, pneumonia, or from the extreme anemia.  I had 2 clots, middle and lower right lobe and secondarily had temporary congestive heart failure, that has since gotten better. 

Second time around was 2 weeks after stopping blood thinners and taking out my ivc filter. I went to the ER because of anemia (hemoglobin 6.1) and the dr ordered a CTA because I was having chest pain, shortness of breath, and low o2.  At this point hematology recomended i remain on blood thinners indefinitely despite the reoccurring anemia.  Thankfully the second time clots were smaller and didn't have repercussions once clots were dissolved. 

You are certainly right to be cautious of blood clots! I think every treatment has risk which have to be weighed by the patient and medical team. My Drs and i are more inclined to take the risk with fluids because without fluids I pass out 20+ times a day and deteriorate quickly. 

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Thanks that is all really helpful to know! I think the Groshong sounds like the best fit for me if I am offered that as a choice. I have to get the peripheral trial done first and see if having regular fluids helps me. I am considering getting a thrombophilia screen done prior to deciding on a central line just to exclude any clotting disorders. My dad had a serious portal vein thrombosis aged 68, he had been dehydrated that day but no other reason. It damaged his liver though and he was in hospital for several months. He was tested for clotting disorders, I am not sure how thoroughly but all was negative. 

I was on combined hormonal contraceptives for 10 years, over 4 years with POTS and very immobile, so I don't think I have any inherent predisposition to clots, I just know I would worry about it, though I hope the fluids would make me more mobile and my blood less thick. 

The line I had in my neck for the TPN was not comfortable, but it was only a couple of weeks. I did not have any problems from it but was mobile then and on heavy duty antibiotics from bowel surgery so not a massive risk for infection from it at that time. Also I was in hospital so getting a daily heparin injection. 

8 hours ago, ANCY said:

At this point hematology recomended i remain on blood thinners indefinitely despite the reoccurring anemia

Can I ask which blood thinner you take, and has a cause been found for your GI bleeding?

B xxx

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I'm on xeralto now. I was on Eliquis but insurance was giving me a lot of grief so switched to xeralto. At one point I was doing lovonox injections, glad i don't have to do that any more! Lovonox can be reversed and is shorter acting which is why they tried me on it.  

My stomach was inflamed and bleeding on the last EGD.  It's been almost a year since then so if I drop really low again they want to do another EGD.  They suspect that with the last bleed I had a spontaneous ulceration from the sepsis in combination with some possible hemolytic anemia from the iv rosefen. Last year I also had trouble because of forever heavy periods so had a hysterectomy. Obviously the drop in March to 4.2 was not the same culprit... We are thankful that have at least some stability with my blood counts besides that event. Had a bunch of trouble with my feeding tube bleeding recently but thankfully it didn't drop my counts dangerously low. 

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Glad your blood counts have stabilized now. Also hope your current line goes the distance! I am getting my first regular home bag of saline tomorrow over approx 4 hours in the morning 😀

It is very expensive for me to pay for nurse visits as this is not covered by the NHS, so if I am doing it for any length of time will need to get something that I can use to run fluids independently. If I could get peripheral infusions free then I would try this options for longer, but really the cost of having a central line put in would pay for itself after just a few uses. 

B xxx

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