Monday, July 21, 2014

IV Fluids for PoTS: Port Portacath Installed for Easy Access

I had been doing IV Saline for four months for Postural Tachycardia Syndrome (PoTS), and my nurse had been accessing me in my arms and hands with an IV needle. I was beginning to look like a heroin addict - track marks up and down my arms, bruising and scarring. It wasn't a pretty sight. It was also getting really hard for the nurse to access my veins because they kept rolling; they were blowing because of being accessed so much so we started talking about me getting a PICC line or a port. I opted for a port. It was the best decision ever. I love it beyond words. I shouldn't just say "it"...I should say her; I named my port Persephone. I have now been doing fluids for a year and a half and I am still happy with both the decision to do fluids and the decision to use a port.

Before I get into ports, I will explain my fluid situation. We were originally doing saline solution and it was nice, but we really amped it up when we switched to lactated ringer's. Lactated ringer's is a mix of sodium, chloride, lactate, potassium, and calcium; basically, it's like Gatorade in an IV bag without all the added yuckiness of actual Gatorade. It's an amazing mix of electrolytes. I do a litre of lactated ringer's each day through my port, 7 days a week.

The other thing that really helped: a pump. I was using an IV pole and gravity was doing the work, and even though I had the convenience of a port, I was still stuck for hours to a pole and it was cumbersome and a pain. When I moved to Seattle, the nursing company let me get a pump, which is an automated way to push the fluids through, and it's portable. Now, I can run fluids while sitting on the couch, or I can even run fluids while at the grocery store. It has made life so much better.

So...ports...let's just dive right in.

A port, or portacath, is a small device placed under the skin with a catheter attached that leads into a vein that goes directly into the heart. One can access this device with a needle and either take blood out through it or place fluids or medicines in through the port. If you get a port, I recommend asking your doctor to thread it under the clavicle and also to stitch it in place with an extra stitch as they tend to move around a bit in EDS patients, even though some doctors swear that is impossible (I know it's possible from a friend's experience). My doctor stitched it down in one extra spot and mine only wiggles a little bit.

On the day of my outpatient surgery (it was an easy surgical procedure):

There is a great 2 minute video explaining ports and how they are placed and used:

With my port, we keep it accessed 7 days a week so I can get my hydration daily. We change the "access" (the needle and dressing) once a week. I was trained to do it myself, so I am able, but I currently have a nurse doing it because I am still recovering from hand surgery.

When you aren't accessed, you see nothing more than a small bump under the skin. But, in order to receive fluids, you have to be accessed. That means you look more like this, with the dressing on:

There are a few downsides to having a port, and one of them is the allergies to adhesives. If you are like me, you are allergic to most adhesives. We have tried many, many different types of dressing covers and I've found this specific one to be the best, the Tegaderm I.V. Advanced. The other Tegaderm ones don't work for me, just this one does. It gives me the least irritation. Also, I have to use it with a "skin prep" - like an alcohol pad, but when you wipe the liquid on the skin it dries and provides a barrier between you and the adhesive. I highly recommend talking to your nurse about it, if and when you have a port. 

The other downside to having a port is not being able to shower while accessed. Some people I know only run fluids a few days a week, but for me, I am accessed 7 days a week, so I am stuck doing sponge baths, as my grandma calls them. It is a commitment, for sure, but for me it is very worth it. I wouldn't trade Persephone for the world. Yay for ports and fluids for PoTS! :) For me, the combo of Florinef (fludrocortisone) and lactated ringer's keeps my PoTS under control the best. I've tried all sorts of treatment options, but this is by far my favorite. I need the Florinef, but a while back we stopped the beta blocker (propranolol) and the Midodrine. I just use Florinef and fluids now, and I am happy as can be.

I saved the "best" for last...for those of you not afraid of blood and guts, here is a video of an actual port placement surgery, scalpels, needles, and all. It's pretty cool if you are into that sort of thing, like I am:

For those of you with a caffeine addiction, like me, you could just skip the saline or lactated ringer's, and just do straight-up coffee... ;)

No idea where this pic came from, but I love it!

What to do if you want to ask you doctor about fluids: see this post on talking to your doctor. Print out the info/documents I provided and bring it with you to show your doctor. Best wishes!

What to do if you are interested in a port, provided you've already talked to your doctor about fluids, or are already using fluids: show them proof. Print out my post and show them --- the proof lies in seeing it work with other people. If you have other friends that have ports, I also recommend getting them to write a short statement to bring to your doctor with you. I did, I brought 4 friends' statements along with a photo of each of them, with their port showing, to the doctor to show her what ports can do for us (provide easier access, long-term access, provide a way for you to move around while doing fluids, etc.), and that is what convinced her. Good luck!

Just one more tip for those of you with ports and portable pumps...turning the key to attach/detach the tubing can be rather difficult. A nickel fits in a lot of models really nicely, but can be hard on the hands. My wife came up with the idea of gluing some rubber cabinet liner to both sides of the nickel to create a grip on it and make it easier. So much better! Hope that helps you, too!

May the summer heat not keep you beat. 
Love and gentle hugs.

Monday, July 14, 2014

Fast, Fun, and Fabulous PoTSy Summer Drink Recipes

Hi, everyone! Hope your summer is off to a great start. I will be doing a lot of interesting posts in the upcoming weeks and months, some really exciting stuff ahead, so stay tuned... 

If you're all like me, PoTS hits hardest in the summer when the heat picks up. I am a big proponent of ample hydration and salt intake, along with getting plenty of other electrolytes, but the same-old stuff can get rather boring. I've spiced things up a bit and created some PoTSy-rific drinks to help stave off the summer heat and help with your flare-ups. Enjoy! (And, nope, I'm not a doctor, so this isn't medical advice.) These drinks are all very easy to whip up and contain lots of good stuff for those of us with PoTS and even EDS.

Some of the recipes contain fancy salts. You can buy flavored salts at Whole Foods or Trader Joe's, or other stores like those. If you can't get flavored salts or don't want to wait, just use the chunky sea salt you have at home.


  • Roughly 1 cup cold coconut water (I like VitaCoco brand)
  • 1/2 or 1 tsp agave nectar, to taste (I like to use raw agave, I use 1/2 tsp)
  • Juice of 1 lime
  • Ice
  • Large flake or chunk plain sea salt

Place salt on plate. Dip rim of glass in water. Place wet-rimmed glass into salt to coat edge of glass. Carefully pour lime juice and agave nectar into glass without removing salt. Mix until combined. Drop in handful of ice cubes. Top off "syrup" with coconut water. Mix with spoon. Garnish with lime (optional). Make sure to eat the salt on the rim as you drink the "margarita". Enjoy!

Why this recipe is awesome: It contains coconut water, which is hydrating and full of electrolytes --- great for PoTS, agave nectar instead of sugar or corn syrup (low on the glycemic index, so no sugar crashes), lime juice which is full of vitamin C and great for EDS, and salt which is important for PoTS.

Smoky Salted Watermelon Slush:

  • 1 cup seedless watermelon (or seeds removed, if needed)
  • 1 cup ice cubes
  • Juice 1/2 lime
  • 1/2-1 tsp smoked sea salt (I prefer 1 tsp, especially if it is smoked salt; important to give it that smoky flavor, but if you can't get, still good with regular salt. I do recommend trying to find some smoked salt though, if you are able. It is amazing on all sorts of things, especially in this recipe.)

Place all items in blender and blend just until smooth, but not too much that it melts everything. Drink up with a fat straw. It's like watermelon, meets tang, meets campfire...and it goes together very well. I know the drink sounds a little strange, but it is one of my favorites. Give it a try!

Why this recipe is awesome: This contains salt, which is important for PoTS patients, and also fluids to keep you hydrated. In addition, the vitamin C from the lime is great for EDS and the watermelon helps your body get rid of toxins. This is a great drink to start off the day with - especially from a detox standpoint.

ULTIMAte Elixir Slush:

  • 1 cup cold coconut water (I like VitaCoco brand)
  • 1 cup ice
  • Juice 1/2 lime
  • 1 packet or scoop of lemon flavored Ultima Replenisher (this amazing electrolyte drink I will be posting about soon can be purchased directly from Amazon via my Life with EDS store)
  • Bamboo jade sea salt (or regular sea salt if you don't have this)

Place salt on plate. Dip rim of glass in water. Place wet-rimmed glass into salt to coat edge of glass. Put the rest of the ingredients (everything but the salt) into a blender and blend until smooth; don't over-blend and melt it too much though. Pour into salt-rimmed glass and garnish with lime (optional). Enjoy! Make sure to eat the salt on the rim as you drink.

Why this recipe is awesome: This contains coconut water which is full of electrolytes --- great for PoTS, lime juice for vitamin C, salt which is important for PoTS, and Ultima, a potent, powerful mix of electrolytes that is like a super healthy "Gatorade". This is one serious slushie!

Bananarama Smoothie:

Note: You really have to like bananas to enjoy this drink.

  • 1 cup ice
  • 1 cup cold coconut water (I like VitaCoco brand)
  • Juice 1/2 lime
  • 1 banana

Place all items in blender and go to town. Pour into glass and enjoy.

Why this recipe is awesome: This contains coconut water, which has your electrolytes, and added potassium from the banana, along with vitamin C from the lime. 

In addition to adding some fun recipes to your routine, try getting more fluids in your body by adding a natural flavor-enhancer to your water. Either drop in some lemon, lime, cucumber, or fruits, or just drop an ounce of juice (like orange or apple) in a big mostly-full water bottle. It will give you a little flavor burst while still keeping you chugging down the pints. :)

Happy sipping! 

Sunday, April 13, 2014

What to do When I'm Hurting

I recently wrote my wife a letter describing ways she could me when I am in a lot of pain. I thought it was perfect to post here, as it might be something that you could show a caregiver when they are struggling to find ways to help, when they are feeling helpless. Feel free to share, just credit me/link to my blog if you post elsewhere. Much love to you all.

To my dearest wife:

First, thank you for being such a wonderful wife. I am lucky to have you. I love you very, very much. I know this is trying and I know it’s a lot to handle. I appreciate all you are doing, all you have done, and all you will do. Here is a list of things that are helpful to me when I am in a lot of pain. Feel free to try any or all of these measures. All of these say to ask me, but if I am so bad off that I can’t answer, just do what feels right. Err on the side of more is better. Make me take the meds, use the wet heat, massage the area, etc.

  • Ask me if I have taken my breakthrough pain meds (feel free to check my phone app for Roxicodone, last taken).

  • Ask me if I have taken my midday Gabapentin.

  • Ask me if I have taken a muscle relaxer: Valium (daytime), Zanaflex aka tizanadine (evening), can add Flexeril in daytime if Valium isn’t enough.

  • Get me any meds I need and some water.

  • If the lights are on, turn them down (not off, unless I have a migraine). It’s more calming. Feel free to make the room more calming, candles and incense are great. They may help me to relax. (Ask before you do incense though, as it may be too much stimulation.)

  • Ask me if I want heat and/or ice. Heating pad can also do wet heat and that is a great option if I am in a lot of pain. Ask if I want wet or dry heat. If wet, get the wet felt, wet it, wring it out, then place it in heating pad sleeve. It will get the heat deeper, which is always a good thing in the flank and back areas. 

  • Ask me if I have run fluids and/or want to. Assist with that as needed.

  • Ask me if I want you to run a bath with Epsom salts. Assist as needed. (We should try to always keep salts on hand. I want to start using them more regularly.)

  • I will always say yes to massage. I like it hard, so go as hard as you can for as long as you are able. My legs and back/neck are my two preferred places. If I am rocking back and forth, try my legs first. My back/neck need it harder than my legs, so feel free to figure out how much kneading your hands can do and try to do my back and neck the hardest, if that makes sense. Maybe training in massage, like reading a book on it, in advance, would be helpful for the future. Or a class. Or just working your hands out so they get stronger (playing with silly putty is great for this). Also, use your body to provide the leverage and strength, not your hands. Lean into me. Push into me. Don’t rely on handstrength – you will get worn out way more quickly. If you aren’t physically or mentally in the mood to massage me, though, it is totally okay. You are always welcome to say no. Please don’t feel pressured. (Keep in mind, light touch irritates me more than it helps, so if you have done all you can do hard, don’t just touch my skin lightly --- especially if I am having fibro-flare symptoms.)

  • Touching me other than massage, if I am hurting badly, usually can be more hurtful than helpful. It isn’t that I don’t want your love, it is just that it adds to my pain, especially if I am having any skin pain. I get overstimulated and the touching makes things worse.

  • Normally, I don’t mind your company when I am hurting; in fact, it is usually very nice. Sometimes though, it overstimulates me when I am already having stimulation issues. So, it is best to ask. If I do want to have time alone, please don’t take it personally. I love you beyond measure. It just might be too much because then I focus on helping you help me, and I really just need to be focusing on relaxing. Just ask. I usually love you being with me, especially since you are gone all day and I deal with pain while you are away all alone.

  • Lastly, just double-check if there isn’t anything else that I need, and maybe see if I want something to help occupy my brain like my Nook or Law & Order on the laptop.

Thank you. Thank you a million times over. Thank you for marrying a person who needs your help more than most partners and requires you to be a caregiver and a wife. I am sorry I put you through all of this, but I don’t do it on purpose. I know you do what you do because you love me, and I appreciate it so very much. Thank you. Thank you for being so wonderful.

Love you always.