Apr 3, 2011

Saline Therapy for POTSies?

For the first nine months of my illness, I was popping in and out of the Emergency Room after fainting episodes with severe breathing problems, vertigo, tachycardia, tremors and a host of other symptoms.  We didn't know it was POTS, but we did know that whenever they gave me intravenous saline in the ER, I would feel somewhat better for about 24 hours.   IV saline seemed to lessen my tachycardia, increase my blood pressure, increase my energy levels, lessen my shakiness and tremors, lessen my chest and neck pain, and lessen my breathing difficulties - not completely, but just enough that I wanted more saline whenever my symptoms got really bad.

After nine months of bouncing around to dozens of specialists and emergency rooms, we figured out I had POTS.  I spent about 2 months in the hospital, on IV saline for most of that time.  When I finally went home, I really missed the "alive" feeling I got from the saline, so I started to ask my doctors to let me try it at home.  Most said no, because it wasn't "proven" to improve POTS symptoms.  I argued with the nay saying doctors that we didn't need a fancy research study to know that it improved MY symptoms, especially since they could objectively measure my improved heart rate, blood pressure and respiration rate.  There are also a handful of medical journals that mention IV saline being used as therapy for POTS patients, in particular hypovolemic (low blood volume) POTSies, which my doctors think is the type of POTS I have.  My rational argument did not get me anywhere.

I ended up in the hospital again a few months later, this time because my gastrointestinal symptoms were so bad that I couldn't eat or drink anything without choking, puking and having terrible breathing problems.  After losing 15 pounds in about 2 weeks, I finally ended up back in the ER and my doctor admitted me to the hospital to give me IV saline and to try to figure out why my GI system was going haywire.  She saw how much the saline improved my symptoms and allowed me to walk around a little bit more, instead of laying in bed 24/7.

We also noticed that regular saline (which is just medical grade purified water and sodium chloride) seemed to trigger hyperventilation attacks in me.  We don't know why this was happening, but I suspect it was some sort of acid-base imbalance in my blood due to the Flourinef I was on, which severely alters your electrolyte levels, my chronic dehydration since I couldn't drink enough fluids and had lots of diarrhea due to the GI problems.  When my doctor switched me to 5% dextrose + .9% sodium chloride, the hyperventilation pretty much stopped happening right away.  A one liter bag of 5% dextrose + .9% sodium chloride saline provides you with a whooping 9000 mg of sodium chloride per day.  This is way too much salt for normal people, who are supposed to consume 3,000 mg of salt per day or less, but this is great for most POTSies, because POTS doctors say we should try to get 5,000 mg to 10,000 mg of salt (sodium chloride) per day [Note - if you have POTS with high blood pressure, do not increase your salt intake without consulting with your doctor first].

When I was in the hospital, after awhile, the veins in my hands and arms started to collapse from all the IV catheters, which only last a few days and then have to be replaced in a different spot.  The would put an IV line in the top of my hand, and within the hour my vein would collapse and the IV fluid would start filling up my hand.  This hurts like hell, doesn't get you the hydration you need, and can cause tissue damage or infections if the IV line is not removed quickly.  That's why they won't let you leave the hospital with a regular IV line in your hand or arm.

Since I didn't want to live in the hospital forever and I didn't have any good veins left to get saline or to give blood for tests, my doctor suggested that I try a PICC line (Peripherally Inserted Central Catheter) in my arm, so I could receive saline infusions at home and have a painless and easy way to draw blood for all the lab tests I was getting every week.

A PICC line is a very narrow flexible tube (called a lumen) that is inserted in a large vein in your arm and it extends up your arm through the vein towards your heart.  The end of the lumen rests in a very large vein just at the top of your heart.  The other end of the lumen comes out of a tiny hole in your arm and has an IV like cap at the end of it that can be used to draw blood out of the line (without any needle touching you) or to infuse saline and other medicines if needed (also without any needles touching you). The length of the lumen depends on how large of a person you are.  Mine was 40 cm long.

Despite the risks, it seemed like a good idea because it would allow me to (hopefully!) start to function again, but I was scared to get a PICC line.  I had the unfortunate circumstances of hearing a hospital roommate get one inserted 'bedside' by an IV nurse, without any Novocaine to numb her arm or any pain meds.  She made the most awful blood curdling scream you've ever heard and she cried for about 3 hours afterwards.  And because of nerve damage associated with my POTS, I am more sensitive to pain than I used to be, so even a tiny needle stick feels like a huge knife in my arm.  I was dreading what a larger, long tube, would feel like getting inserted towards my heart.

Not only could it really hurt to get it inserted, I also knew there were serious risks associated with PICC lines.  You can get serious blood infections or blood clots, both of which are very serious medical problems and both of which could be fatal.  About 20% of people who get blood infections die.  PICC lines can also attach themselves to your vein and cause venous spasms or a tear in your vein, which could lead to internal bleeding.  Your heart could get irritated if the line is not placed properly or if it is too long or if it becomes dislodged.  The lumen could break apart in your arm and get whooshed by your fast moving  blood right into your heart, which could kill you almost instantly.  All of these scenarios are pretty rare, but these are serious risks not to be taken lightly.

I found out from the awesome girl who was in the hospital bed next to me, who had a dual lumen PICC line in her arm for IV antibiotic therapy, that you could get a doctor to give you a shot of Novocaine in your arm before they inserted the lumen, to help minimize the pain.  Apparently the nurses who do it at the bedside are not allowed to give you a Novocaine injection or any numbing agent (at least in the two hospitals I was in).

So I decided to wait for a radiologist to be available to do the procedure under fluoroscopy, with the Novocaine shot to help numb my arm.  In hospital lingo "under fluoroscopy" means that the radiologist or surgeon uses an x-ray machine that takes a continuous x-ray image and displays it on a big TV screen, so the he can see where the lumen is going as he inserts it into your vein.  I figured this was probably a little safer than letting a nurse do it at my bedside, since the nurses only use a sonogram machine AFTER they have inserted the PICC lumen, to see if it is in the right place above your heart.  The radiologist can also add a few stitches to hold the lumen in place, to minimize the risk that it will get puled out or pushed further in towards your heart, and I don't think nurses do that bedside.   So basically, I would advise anyone who is getting a PICC line to have it inserted under fluoroscopy by a radiologist or surgeon who can give you a Novocaine shot before hand.  They usually only do the stitches if you are expecting to have the PICC line for more than a few weeks.

Well, even with the Novocaine I screamed bloody murder the whole time they were inserting it, but that's probably just because of my increased pain sensitivity due to my neuropathy.  I felt all 40 cm of that lumen getting pushed through my vein in my arm and chest - YUCK!  The radiologist told me he'd only had one other patient feel it like out of the hundreds of PICC lines he inserted over the years.  Making matters worse, he inserted it once, and decided after looking and the x-ray image that the lumen was too long and since he didn't want it to irritate my heart, he pulled it all the way out, shortened it and put it back in a second time.  I let the f-bomb fly out of my mouth more than once during that procedure, but the radiologist was cool and told me to just let it out.

After it the PICC was fully inserted, my armpit was sore for about a week, and I kept feeling the lumen in the middle of my chest - possibly because he had bumped my vein above my heart pretty hard the first when he inserted the PICC line that was to long, or possibly because my body is just way too sensitive to any sensation, so this little tube was irritating my veins.  The soreness in my armpit was barely noticeable by the second week.  I made a point of using the arm just as much as my other arm, because I didn't want it to get weak just because it had a PICC line in it.

My doctor ordered a home care company to send a nurse to my house once a week to change the dressing around the PICC line entry site (the tiny hole in my arm).  The first week, the home care nurse also taught me and my husband how to flush the line to prevent blood clots and how to do the saline infusion on my own.  It was pretty easy once I did it a few times on my own.

I had the PICC line for about about 3 and a half months, getting 1-2 liters of 5% dextrose + .9% sodium chloride saline every day.  It allowed me to feel good enough to start doing exercises, which I needed to do to gain back my strength after laying in bed on most days for about a year.  It also allowed me to sit up and stand up for longer periods of time.  I managed a few hours in my greenhouse on one good day, and a few hours in my garden on another good day.  I made slow progress, but after 3 months I was able to go into a store without my wheelchair and oxygen (left those in the car just in case) and was able to walk around, albeit a bit shaky and short of breath, for almost an hour.  This was a monumental achievement, since I hadn't been to a store without a wheelchair in over a year and I hadn't stood up and walked for a hour since the first day I got sick 15 months prior.

Just as I thought I was really making progress, the day after my glorious one hour shopping adventure, the arm I had my PICC line in started to turn grayish purple, like it was swollen with blood that didn't have much oxygen in it.  I called my doctor and my home care nurse came to check it out.  They sent me to the emergency room to check for a blood clot or an infection, and to get the PICC line removed.  I was pretty scared, because I knew how serious it was to have a clot or an infection in a large vein that leads directly to your heart.  We all suspected a blood clot, including the ER doctor, but they did an MRA (an MRI that looks at your blood vessels and heart) but they didn't find a clot.  The ER doctor was a jerk; she refused to remove the problematic PICC line and tried to send me home with my Barney colored purple arm.  Thankfully we got a hold of my family doctor at some ungodly hour of the night and she admitted me to the hospital for further evaluation and to get the PICC line removed ASAP - the next morning.  A doctor removed the PICC line from me as I laid in my hospital bed.  It can be dangerous to remove the PICC line if there is a clot, but it had to come out.  He removed it gently, but I still felt an uncomfortable, but not painful, sensation in my armpit - like my vein was attached to the PICC line lumen and when he pulled it out, he tugged on my vein too.  The doctor said that usually doesn't happen, which is of course why it happened to me.

I stayed in the hospital waiting for further evaluation for a possible blood clot, the results of the blood tests they did in the ER looking for an infection (which take 48 hours to get back) and to get a chest port inserted since I still needed the IV saline every day to function.  If I learned anything from my PICC line experience, it is that you should have an emergency plan set up with your doctor on what you will do if you have a complication - how will you get the PICC removed if needed and how will you get the hydration of meds you need everyday when the PICC is removed?  Better to have a game plan in advance that to have to figure it all out at 3 am on a Sunday night when the hospital has a bare bones staff and you can't find your doctor.

I had the chest port inserted yesterday and I should be out of the hospital in 2-3 days.  Many doctors have told me that a chest port is better than a PICC line if you are expecting to need it more than a month or two.  Lots of people have chest ports that last a few years, while PICC lines are usually used for one year or less (and some doctors say 3 months or less).

A chest port insertion is more serious and complicated than a PICC line insertion.  A chest port insertion procedure usually involves the surgeon inserting a port, about the size of a large soda bottle cap, under the skin of the upper chest area, with a flexible silicone tube that connects the port to a large vein nearby, commonly the jugular vein the neck.  There is usually one incision to insert the bottle cap sized port and a second incision a few inches above that to connect the port tube into the a large vein near the neck.  Some ports are placed lower on the chest, and some women prefer the port to be placed along the bra line under under the breast, to hide the scar better.  I asked for this, because I like to wear bikinis and tanktops in the summer, but my surgeon said the upper chest area is less likely to cause complications since there is more tubing involved in the lower chest port placement and there is more likely to be irritation of the skin covering the port if it us under your bra or often rubbed against when you lay on your side to sleep.  He also said the surgery is more invasive and the recovery takes longer from the lower port insertion, so I sucked it up, and traded my vanity for a safer, less painful option.  Hopefully the port will allow me to feel good enough to hang out at the beach in my tiny bikini, and once the incisions have fully healed, you can shower and swim normally with a port - which you can't do with a PICC line.

The chest port sits under the skin, and a nurse or doctor can then get blood or give fluids or liquid medication into the port without significant pain for the patient.  If you get daily infusions, like I do, they can stick a small extension tube through the skin that covers the port and change that once a week, rather than piercing the skin that covers the port everyday.  Plus, you can be taught how to do the infusions yourself if you have the extension tube.  When you are not using the port, they inject a small about of heparin into it, and it can stay like that for several weeks.  If you weren't using it longer than that, you can just flush it with heparin every few weeks.

In my situation, they put me under "twilight" sedation to install the chest port.  Patients under twilight sedation can respond to simple directions the surgeon gives them, but they are relaxed and usually don't have any memory of the surgery.  Apparently as soon as the surgeon began to inject me with Novocaine, to numb the area where he was going to cut me open to insert the port, I freaked out, ripped off the safety straps that tied me down to the operating table, and I grabbed the surgeons arm so hard he almost stabbed himself with the Novocaine needle.  I am not a violent person, and I have no memory of doing this, thank goodness!  The doctors said it took three guys to hold me down.  They think I did it because I am so pain sensitive and the Novocaine needle hurt me so bad that I fought back out of pure instinct t protect myself.  Luckily, no one was hurt besides me.   I felt so bad about this when the doctor told me about it, and I profusely apologized, but he just laughed it off as 'all part of the job.'  He even complimented me on my physical strength, which I guess isn't so bad after a year in bed, since it took 3 guys to hold me down.  I am strangely proud of that.

After I went bonkers, they increased the anesthesia they gave me from just "twilight" sedation to fully knocked out anesthesia, which required the emergency insertion of breathing tube to keep my lungs functioning properly.  When you are deeply sedated under anesthesia, your lungs can stop working properly, so that is why they put a tube into your lungs, to pump air in and out.  The breathing tube is big and it gives you one hell of a sore, scratchy throat when you wake up from the surgery.  Since I started a brawl in the operating room, and since they had to have three men physically hold me down as the increased anesthesia set in, I ended up with a killer sore throat, terrible whiplash in my neck, and some odd bumps and bruises you don't normally get from a chest port procedure.  It should all go away in a few days, and then I can back to recovering from POTS, instead of recovering from an operating room brawl.  Don't let my experience deter you from considering a port.  The surgeon told me that this rarely happens, which, as I said earlier, is why it happened to me.  24 hours after the surgery, the surgeon removed most of the bandages and the neck incision sealed up well.  The chest port bandage should come off tomorrow or the next day, so we can see if I am ready to go home from the hospital.

So now that I've scared the crap out of you about all of this, I thought I might share with you some info you can give to your doctors if they are reluctant to let you try to IV saline.  Check out my In Support of Home IV Saline Therapy page for medical journals and research studies that may help you convince your doctor to let you try out IV saline at home.