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Infused

March 19th, 2014

photoI’m beginning a new experiment: IV saline. Regular saline infusions have been used by many ME/CFS patients to cope with orthostatic intolerance for years, but I’ve never taken them regularly. Yesterday, I received the first of four weekly treatments. How much to take, and how often, is trial and error. If it helps me, then perhaps this will be an ongoing treatment (hopefully at home). In the meantime, here’s what I learned in the infusion center yesterday:

  1. No matter how sick and disabled I feel, I am still the healthiest patient in the chemo suite.
  2. Noise cancelling headphones are essential equipment.
  3. Bending my arm the wrong way not only hurts, but it sets off an earsplitting alarm on the infusion pump.
  4. It’s cold. I need a better strategy than covering up with my jacket.
  5. I should not have bothered bringing the IOM Gulf War Illness case definition report. Reading? Ha!
  6. I would be better off saving the weekly episode of This Week in Virology for infusion entertainment.
  7. Be very flexible and very patient. See Lesson #1.
  8. I ended the infusion with the familiar tired but wired feeling. Listen to the “tired,” Jennie, and go to bed when you get home.
  9. I am very blessed to have friends willing to drive me to and from infusion. Not being able to drive myself stinks.
  10. I experienced a weird awareness that I had no appetite but knew that I really needed fuel. Plan ahead and bring a snack.
  11. I struggled with a lot of guilt during the infusion, like I didn’t deserve to be there because I wasn’t receiving chemo.  But my doctor and I believe this is a necessary experiment. I had to remind myself many times that I am just as deserving of healthcare as everyone else getting infusion.
  12. I need to pay careful attention to how I feel, and whether the IV helps. But I also need to be careful about my expectations. This may help; it may not. I’ll try to take it as it comes.

 

  1. Billie Moore
    March 19th, 2014 at 10:53 | #1

    Two thoughts on the “you’re the healthiest patient in the chemo suite.” First, the person who said that probably has no knowledge of ME/CFS and therefore thinks that you are just tired. We know that the morbidity level with this disease is equal to that of terminal heart and cancer patients in many cases. Maybe you could give out copies of the Primer to the staff.

    Second, I personally don’t believe that. Some on chemo WILL get better and not just temporarily. If you and the others there all participated in a function test, you would probably rate lower than a good portion of those in the chemo suite.

    Don’t you dare feel guilty!

    Billie

  2. Billie Moore
    March 19th, 2014 at 10:54 | #2

    PS. And what’s most important, I hope the IV will help you significantly, Jennie.

  3. Ess
    March 19th, 2014 at 14:07 | #3

    Good luck, Jennie, with the IV saline infusions. Of course your health is just as important as any other’s–of course!!! That old ‘we look good’ statement doesn’t tell what is going on in our bodies and the toll that the ‘invisible’ ME/CFS takes on our health and daily activity/non-activity levels.

    Cancer is a horrid disease that everyone knows about and ‘treatment’ can make it very visible. ME/CFS is a horrid disease that has been hidden and many know nothing about–out of the closet it comes!!

  4. kathy d.
    March 19th, 2014 at 23:09 | #4

    Well, I had saline iv when I broke my ankle and was in the hospital. For five days I got this, as it was thought I was dehydrated, which was why I fainted and broke my ankle. It was really a strange episode. One minute I was pressing my floor number in the elevator; the next minute I was sitting on the floor of the elevator with a sore ankle. No memory of a few seconds there.
    Then couldn’t stand up; people dragged me out.

    My point is that I perked up after a few days of saline, felt better. So I think the ME/CFS was helped by it.

    Important to eat in that situation. You do need fuel, protein.

    Hope it helps you. As for chemo patients, yes, it may be life or death for them. But you still have a right to feel better and pursue whatever might help with that.

  5. Ren
    March 21st, 2014 at 11:57 | #5

    Besides being a patient, you’re (@ Jennie) also a writer (and advocate) who’s chronicling her experience and observations, and thus educating others.

    So, you’re doing something good (1) for you (as no matter where this experiment eventually rates on the continuum of possible outcomes, you will have learned something about what works / doesn’t work best for you), and you’re doing something good (2) for others by sharing your experience and gained knowledge. (Thank you!)

    Plus, you have the potential to add some bit of joy or just be a kind of stable, positive presence in an environment that can probably never have enough goodness, compassion, and positive energy. :)

    Fingers crossed!

    • Jennie Spotila
      March 21st, 2014 at 12:10 | #6

      Oh thank you, Ren. You have inspired me to bring some joy to the infusion center with me next week.

  6. Joe Landson
    March 21st, 2014 at 12:18 | #7

    To my thinking, the immune advances that will help treat our illness may very well also help the cancer patients still suffering through chemo and radiation, both of which have probably outlived their usefulness.

  7. kathy d.
    March 21st, 2014 at 23:09 | #8

    I don’t think chemo and radiation have outlived their usefulness, not until something better comes along. People’s lives have been saved with those treatments, as well as surgery — the main cancer treatment methods — as of now. This will change as scientific research moves along.

    But, I know as far as saline goes, it made me feel better even though I was being treated for dehydration for another reason. And I believe that a woman soccer player who had ME/CFS would get saline infusions during breaks in the game so she could keep playing. So, obviously it has a good effect.

    • Jennie Spotila
      March 22nd, 2014 at 09:45 | #9

      Chemo is keeping a member of my family alive, so I certainly don’t think it’s an obsolete treatment. But Joe makes a good point, that immune therapies may hold more long term promise for cancer patients. Harnessing the body’s immune system to destroy its cancer is actually already being done in some cancers like multiple myeloma. Predictably, those therapies that crank up the immune system are not pleasant in terms of side effects but it is different from traditional chemo. Cancer has many different types of causes: oncogenes, environmental exposure, viruses. We need many different strategies to fight such a diverse enemy.

  8. Joe Landson
    March 22nd, 2014 at 10:12 | #10

    Sorry if I offended anyone. I just hope we all have better treatment options soon.

    • Jennie Spotila
      March 22nd, 2014 at 12:05 | #11

      I wasn’t offended, Joe. And I share your hope!

  9. March 22nd, 2014 at 11:09 | #12

    I believe it important that we never think our illness is better or worse than someone else’s. It all depends on how each of us deals with it, regardless of the prognosis. Jennie you have great humility, which is a virtue. Chronic illness, sometimes terminal, is never easy in any case. I am a patient and an RN. I have two family members right now that are dying with cancer. If I asked them if they wanted to trade places with me, they would most likely say yes. But then, they have no barometer on which to base that decision.

    I know that cancer patients do better when they reach for mental, emotional and spiritual balance, and so can we. Thank you Jennie for being a warrior, for chronically your journey, and standing up for all, when I know you physically fall down. March on my friend and keep us posted.

    • Jennie Spotila
      March 22nd, 2014 at 12:07 | #13

      Celeste, thank you for these kind and encouraging word! I will march on and continue to share the journey. I don’t feel like much of a warrior some days, but I feel a consuming fire to speak up and share our voices.

  10. March 22nd, 2014 at 11:11 | #14

    Oops, chronicling, not chronically your journey. Spell check for the fog challenged is a blessing and a cruse. Oh my, curse.

  11. kathy d.
    March 23rd, 2014 at 00:01 | #15

    Your are a warrior in many ways, even with this very informative and helpful blog.

    My point about cancer is that chemo, surgery and radiation kept alive several people close to me for quite awhile, and led to a long-term remission for a close relative of mine, who is still (knock on wood) doing well, after very aggressive treatment. But, of course, I hope for better, less traumatic treatments for this awful disease, and using the immune system itself to fight this disease is developing along and has promise.

    There are a lot of problems with this now. A doctor with a rare form of cancer could not afford the chemo available; friends contributed for it. They also petitioned the pharmaceutical company to cut the price, which they did temporarily.

    This is another issue. Many treatments for cancer are too expensive. Medicare doesn’t cover all these drugs, or only covers a portion. It ends up with treatment for those with money. It’s very unfair.

    Anyway, a lot needs discovering on the cancer front, as well as with ME/CFS. The problem is it’s not a government priority, so barely any funds or researchers are put into this area. Dr. Ian Lipkin, virologist, is asking patients for funds for research. He should get government grants, as should all promising research projects.

    Medical research for all diseases should be a priority; that’s just putting human beings first. And the political shenanigans behind all the committees and statements and buck-passing should end.

    Hope the infusions help you.

  12. Justin Reilly
    March 25th, 2014 at 14:21 | #16

    You deserve and are worthy of salt water. Never forget that, Jennie. : )

    • Jennie Spotila
      March 25th, 2014 at 14:35 | #17

      LOL! What do we want? Salt water! When do we want it? Now!!

  13. John Kennedy
    April 7th, 2014 at 12:27 | #18

    Hi Jennie, I just ran into your blog and wanted to wish you good luck with the Iv treatments. As with all treatments not everyone will respond positively. I have been getting weekly Iv treatments consisting of a large Iv bag of saline (not really sure but I think about a liter), multivitamin, and magnesium for several years. The multivitamin and magnesium are injected into the saline. Immediately after the Iv I feel pretty normal for an hour or so and then starts a decline that takes about four days. While the treatments have not cured me they have helped me to cope in many ways. Firstly they assure me that I am not crazy, I really feel that bad. If you would like to talk about my experience just email me. I hope the IV helps you as much or more than it helps me.

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