@vikkilouise , i begun to read your blog, and Gosh, you have a picline !
I would " like" to have one too, (ideally), because, it's something very painfull, having 2 infusions in harms per week...
In addition, I have little piquables veins (only 3), so I have to think every time to change, trying to preserve them...
My nurses, who are struggling to sting me because of my small veins, even with cathlons for kids, often speak me about picline, but every time I refuse, and explains them , as I'm immunocompromised due to Ritux ,it is out of the question that I take the risk of getting an infection (= the only time in my life where I had a catheter during 48h00 - my delivery-, they found a way to pass me stapphylocoque -fortunately not the golden one), so , no way ! In addition, i guess you have to undergo general anesthesia, for laying your picline? And even short general anesthesia would be too damaging to me ...
I just read
@Research 1st , and, as he stated, I know that this is not a solution for life, and I'm literally scared to death, because I do not know how I'm going to do the very next term (my 3 veins start to show signs of weakness, and sick and tired of being pricked (they colapse, and lately even one broken) ...
But these infusions to add me blood volume are just as vital for me: before starting, I could not stand or sit, that 0-4 min /24:00, ... And thanks to these infusions (and corticosteroids, too) ,that I was able to go to the US at OMI ...
In short, since1 month, then, i try to preserve my veins to the maximum, I just made a whole month with a single infusion / week, it's very hard, I feel the lack, I'm taking Desmopressin for help me to retain fluids, but nothing manages to hydrate myself and add me blood volume as an IV of saline ...
I really affraid about how the next futur ... I really do not know how to do, because I am aware that they'll can not sting me ad vitam eternam, especially on only 3 veins, and we tried those veins of the hands and feet, but it was a pure torture, and even the kids cathlon does not pass ...
Well, sorry to unburden myself, I hope to talk to you again about it, 'cause I'm glad to find another severe ME, who fought for having those infusions, and that they also improves you
The only other people I know (internet) who have it (they all have piclines like you) are not PwMEers, but suffering from dysautonomias / SED.
ps: do really if you can the tests of your levels of Anti Diuertic Hormone, in France, my internist had not thought of it, it' is Dr. Kaufman, OMI, who tested me (my rate of ADH was so low it was almost undetectable!), and supplementing with Desmopressin help a lot too , in complement ! (You write on your blog that you could drink up to 7 liters per day, me too, between 4.5 liters and 6 liters, and it become to painfull for kidneys, from 4 liters per day), but I still was holding no fluids, because I was peeing on 3 minutes after drinking, even just 3/4 sips ...
PS 2 :i tried fludrocortisone too, during 1 months, but it seem not help at all
PS 3: you'll tell me if you gain weight ? (water retention / cellulitis) or not: I took 12 kg in 1 year, and I attributed directly to these infusions + desmopressin + drink good electrolytes..but. ..no other choices :-/