Jun 30, 2011

My Saline Therapy Update

So I've been using my chest port for daily IV saline therapy for several months now.  Thankfully, I have not had any problems with the chest port.  My insurance company is still covering everything without any problems (thankfully!) and I am feeling better than I have in the whole year and a half I've been sick (thankfully!).  I still have plenty of "bad" days, but the symptoms on those bad days are caused by my neuropathy, not by my low blood volume.

Overall, I am so happy I discovered IV saline as a treatment for my POTS and I am really grateful for my doctor who let me try it.  I can't speak for her, but I think she is also happy to see the results of how much better I am doing since we started it earlier this year.

If you read my earlier posts on Saline Therapy, you may recall that my doctor and I have been able to objectively document a significant improvement of my low blood pressure and my tachycardia since I started getting 1 liter of .9% sodium chloride, 5% dextrose, saline per day.  Subjectively, I also notice that I am no longer getting those shaky/jittery/anxious sensations that seemed to riddle my mind and body whenever I was upright for more than a few moments in my pre-saline days.  Since the saline, I have fewer episodes of vertigo, lightheadedness, and severe breathing attacks.  I am able to be upright for much longer periods of time now, and I am even working my way into upright cardio exercise.  And perhaps most importantly, I have a vastly improved quality-of-life.

After experimenting with different amounts of fluid and different concentrations of salt and dextrose, my doctor and I settled on .9% sodium chloride, 5% dextrose - 1 liter per night.  When the gave me regular saline in the ER, without dextrose, it trigger a bad reaction in me, with severe shortness of breath and shakiness worse than a normal POTS attack.  I think, although it's just a semi-educated guess, that perhaps adding saline to my blood without any dextrose in it dilutes the blood, and that coupled with my low blood volume maybe leads to hypoglycemia.  Who knows, because they never tested my blood sugar when it happened in the ER, so it will just remain a guess.  No way am I letting anyone give me non-dextrose saline again.  Interestingly, I found another POTS patient online who also can't tolerate non-dextrose saline, but does well with 5% dextrose added.  My doctor also informs me that she has other patients who have bad reactions to non-dextrose saline, but they are fine when given a 5% dextrose saline.

I also use 5mL of pediatric Heparin (light blue vial and cap) to flush the port once a day, because the more concentrated adult Heparin (yellow vial and cap) was giving me instant headaches every time I used it.  If I only had to use it once a month, like people who use their ports for monthly chemo infusions and the like, I could probably deal with a once a month headache, but I use my port daily so I have to flush it daily.  Before my chest port, I had a PICC line in my arm and I did not flush it daily with Heparin, because no one told me I was supposed to do it everyday.  I though it was for the nurse to use once a week.  Oops!  I ended up getting clogs and other problems with the PICC line, probably because I wasn't using the Heparin.  I could easily blame the nurse I had at that time (interestingly, I don't think she works for the homecare company anymore), but I blame myself for not asking enough questions.   Now, if they ship me something I don't know about in my delivery box, I ask for the full details on what to do with it and the purpose of it is.

First, my doctor wrote a script for home saline therapy, and provide documentation as to why that was appropriate treatment for me.  We gave this to a local homecare nursing company, and they contacted the insurance company for prior authorization.  The insurance company did not raise any issues or problems, so we went ahead with it.

If you anticipate a problem form your insurer, your doctor may be able to get you a Daxor blood volume test, which uses a small amount of Iodine-131 as a radiotracer to determine your plasma, red blood cell and total blood volume.  In most POTS patients, it will be low, and this can be used to help justify the saline therapy to the insurer.  You may also want to document that you have attempted to drink 2-3 liters of electrolyte fluids a day, and increase your sodium intake to 5-10g per day, but that it hasn't resulted in a substantial improvement in your tachycardia or blood pressure in the upright position.  If you have seen a big improvement in your health with increased fluids and salt, then regular IV saline therapy may not be a good choice for you.

The homecare company usually delivers one week of supplies at a time.  They ship it to my house by private courier or Fed-Ex, and they will even ship it to me elsewhere if I go on vacation (if you count two weeks at Cleveland Clinic as a "vacation").  My deliveries include saline bags, IV tubing, C batteries, 5 mL heparin flushes, 10 mL saline flushes, alcohol wipes, Chlor-Prep (a sterile skin cleaner), a few extra clear bandages in case mine gets wet, and dressing/port needle change kits for the homecare nurse who comes once a week.  They also sent me non-latex gloves for the nurses and a small red "sharps" contained to dispose of the used chest port needles. They sometimes deliver blood collection tubes if my doctor ordered blood tests for me.  If you go to a regular outpatient lab, they probably aren't trained to draw blood from a chest port, so we let the home care nurse do it so I don't have to be stabbed in the arm over and over again (plus, they usually can't find a good vein anyways after one year+ of being a pin cushion).

I have to make sure they sent me enough for the week, because once in awhile they forget to stick something in the shipment - not good to be without essential supplies, especially the heparin which is used to prevent the port from causing blood clots.  

My nurse comes once a week to place a new Huber needle in my chest port, clean the skin near the port, evaluate it to make sure the port looks good, take my vitals (temp, BP, pulse & weight) and generally check up on me to make sure everything is going smoothly.  If I have any weird symptoms, they write it down and forward everything to my doctors office in a note.  The leave a copy of the report with me before the go.  I'm lucky enough that my home care nurses are willing to give me my weekly B12 injections as a friendly favor, even though it's not part of their job.  I tried doing it myself and having my husband do it, but we were both just too squeamish and it ended up hurting so bad and getting the red B12 liquid all over the place, so I just let the nurses do it.  I have the best nurses!

I have a small battery operated pump that resembles an old grey Nintendo Gameboy.  Each night just as I go to bed I attach a 1 liter saline bag to the tube, put the tube in the pump, program the pump to the flow rate I want that night (explained below), prime the tubing to get rid of the air bubbles, sterilize my port connection with alcohol wipes, flush my port with 10 mL of saline, hook my port connector up to the tubing and then I finally get the saline flowing into my vein.  The whole thing takes about 20 minutes to set up, so it can be kind of hard to do it if I wait until I am drop dead tired to set it up.  At first, the dim "whir whir whir" noise of the pump really annoyed me and made it hard for me to fall asleep, but now I am used to it.  It bugs my husband sometimes, so we figured out that if I put it under a few pillows or a thick blanket, we can't hear it anymore.  The faster the flow rate, the louder the pump.  We can't heart it at all on the 50mL/hour flow rate, but I usually have it set somewhere around 100-110 mL per hour.

My doctor has written my prescription for the saline so that I can change it from anywhere between 50mL/hr (which takes 20 hours to do a 1 liter bag) to 150 mL/hr (which takes about 6.5 hours to do a 1 liter bag).  This really makes it more convenient for me, because I can set the flow rate different each night, so that the infusion completes just about the time I am ready to get up for the day.  That way I don't have to wake up too early to turn it off if I go to bed early, and I don't have to walk around with it all morning waiting for it to finish if I go to bed late.  This is extra helpful because the pump makes a dreadfully loud "beep beep beep" alarm when the infusion is complete and it is not fun to be awakened by that.  Even though it's happened to me more than 20 times, I still think it's the smoke alarm every time I hear it and I jump out of bed in a frenzy.  Nothing like the fear of a blazing inferno consuming your bedroom to get your tachycardia going through the roof!  I have a vivid imagination.

If I need some extra saline during the day, or if I am too tired to hook it up at night, I can always do it during the day.  I have a cute little Stussy shoulder bag from back in the day that I wearing across my shoulder to carry the pump and saline bag, which probably weighs about 4 pounds (1 liter of saline weighs about 2.2 lbs and the pump, extra batteries and a few saline and heparin flushes I carry in the bag "just in case" weigh an extra pound or two).  I have gotten pretty good at hiding the IV tubing under my clothes so most of the time people won't even notice it if I'm walking around with it during the day. 

I have learned to take the port needle out myself and safely dispose of it in my "sharps" box.  The chest port needle and dressing has to be changed at least every 7 days, so after I do my 6th night of saline drip, in the morning I flush with 10mL of regular saline, 5mL of pediatric heparine and then I remove the needle and wipe the tiny wound from the needle with an alcohol swab. I give it about an hour to close itself up naturally, and then, if I'm feeling well enough, I head to the nearest pool or bay to do some aquatic exercise.  I get my chance for aquatic exercise only 1 day a week because it's too risky to swim with the needle in because getting the dressing or needle wet greatly increases the chance of infections.  Some people choose to put the needle in and pull it out several times a week, so they have more needle free days, but I don't have the courage to stab myself and my nurse only comes once a week, so I just leave it in for 7 days.  I know of some patients, including POTS patients, who have been trained to put their chest port needle in themselves using a mirror.  Sometimes this is because they just find it more convenient to do it themselves, rather than having to schedule weekly homecare appointments, but sadly, more often this is because their insurance company only allows for a limited number of home care visits per year, so they have to do it themselves.

Honestly, I don't know and it scares the heck out of me that I may be forced to stop the saline therapy before my body has healed enough to live comfortably without it.

I have read that most chest ports are designed to last for as long as 2000 needle insertions, although I am not sure that applies to people who leave one needle in place for a whole week.  Assuming and praying I don't have any infections/clots caused by the port, 2000 weeks would be 38 years.  I will be 70 in 38 years, and my doctors have promised me that I will get high blood pressure like everyone else in my old age so I won't have POTS anymore.  Funny, but not necessarily true since I've met women in their late 50s and late 60s with POTS. I have never heard of someone having a port that long.  The most I've heard about is 4-5 years, and if the person still required IV infusions, the doctors just removed the old port and inserted a new one.  Depending on the situation, the new port could go in the same spot or it can be moved to a new location.

In anticipation of someday not having to rely on IV saline, I have experimented with skipping one or two nights of saline at a time, or just giving myself half a liter, rather than a whole liter.  The most I skipped was two nights, and by the third morning, I was back to being a POTS zombie stuck laying down on the couch all day and having a hard time even walking to the bathroom without getting lightheaded and losing my vision.  I usually skip one night per week, the night just before my nurse comes in the morning to insert a new needle.  In the cooler weather, this seemed to be OK and I would just be a little more tachy and dizzy until I did my next liter that evening.  However, now that the summer weather has set in, I notice that skipping one night leaves me feeling pretty awful the next morning.  So now I am taking my needle out on the 7th morning, trying to squeeze my swimming in during that few hours of not having a needle, and having my nurse put in a new needle in the evening on the 7th day.  Frequently, the nurse scheduling does not work out, or there is a thunderstorm so I can't go in the pool or something else screws up my plans.  I am such a water person, having been practically raised at the beach, swimming and surfing in rumbing Atlantic Ocean waves since I was a toddler.  So the worst part of having this chest port to me is the limits is places on my swim time, but looking on the bright side, the summer before I had the chest port, I was so sick I couldn't even make it off the couch to get to a pool or beach - so once a week is better than never!

I just pray that my body is healed enough to cope without the IV saline by the time I have to take it out for good.  In fact, I hope that my body is healed way sooner than that!  Only time will tell.

While all of my treatment therapies so far have been aimed at giving me that extra boost needed to get myself healthy enough to tolerate exercise and other normal activities, I attribute my progress in large part to the Saline.  But since Saline is only part of my recovery, I will share with your what else I am taking in case any of it may be useful for other POTS patients to speak with their doctors about:
-.2mg of Flourinef because they found that I had low aldosterone levels;
-10 mg Singulair (we switched to a pill asthma med because the powder in my Advair disk was irritating my throat and lungs);
-10 meQ of prescription Potassium daily, because I had low potassium before the Flourinef and even worse since starting Flourinef because it causes you to excrete more potassium;
-Corvite, a prescription iron, Vit. C and B12 supplement from my hematologist to help support blood volume and to fix my low hemoglobin and iron levels he found;
-1000 mcg weekly injection of B12, to support nerve health and to provide me with a little extra energy boost;
-CoQ10-just started taking 200mg 3x daily because Cleveland Clinic found that I had low CoQ10 levels in my blood;
-Calcium "plus" bone supplement, because Flourinef can cause low magnesium and calcium levels and my blood tests for these minerals have been borderline low to low normal;
-400 IU of Vitamin E every other day - they never tested this one in my blood, but I figure if everything else is low, why not.  More antioxidants are always good, especially for neuropathy patients;
-Alpha Lipoic Acid-300 mg daily - there are some legit studies saying this helps slow down and may even repair neuropathy;
-Culturelle (lactobaccilus probiotic) - once daily in the morning to improve overall GI tract health and to ward off yeast infections, which Flourinef can sometimes trigger;
-A chewable acidolphilus and mixed pro-biotic/pre-biotic after brushing my teeth right before bed.  I found chewable cheap ones at Trader Joe's and CVS. GI health starts in your mouth, so I 'd rather have those probiotics thrive in my mouth at night than some nasty bad breath germs.  This also helps ward off thrush, which is an oral yeast infection that can be triggered by Flourinef.  It must be working because my tongue is as pink and healthy as a baby's;
-Genteal eye drop/gel - a few drops applied to each eye at night to prevent the severe dry eyes I was getting while sleeping.  It only helps a little bit.  I still have sandpaper eyes every morning.  The dry eye could be a sign of Sjorgen's Syndrome (pending biopsy to rule that one out) or nerve damage to my tear producing glands.
-20-30mmHg compression stockings, worn from the time I first get out of of bed until I go to sleep;
-as much fluids and "wet" foods as I can tolerate, and plenty of sea salt;
-as much upright time as I can tolerate, sitting and/or slow walking (standing in place really triggers my tachy, probably because of blood pooling in my legs so walking prevents that a little bit); and
-mild/moderate exercise everyday, like gentle weights, stretchy bands, yoga, stretching and forcing myself to have good posture even when it exhausts me.

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