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June 7, 2014
lisakunk

16 comments

Anemia Relief: Iron Infusion Changed My Life

Anemia Relief: Iron Infusion Changed My Life

By Lisa Batten Kunkleman

Anemia is my enemy. Finally, after decades of fighting, I found an ally. I had an iron infusion. Whoever heard of such? Not many people. I know because I asked around, hoping somebody knew anybody who had this procedure and thought it was wonderful. I never found such a person until after my infusion. Then a friend said to me, “Just wait about three months and you’ll feel like jumping fences. It helped me feel so much better.” Oh, how I wish I had spoken to her sooner. What I found beforehand were chat rooms where people shared their horror stories. Perhaps when all goes well, people don’t have time to write success stories. They are too busy out living to tell how fabulous the treatment was and how thankful they are for going through with the very scary infusion.

I finally called the doctor’s office where my procedure was scheduled and had a one-to-one, phone-line chat with an infusion nurse. She said, “Don’t go back on the internet. It will scare the crap out of you! Most of our patients who experience problems have stomach cramps or headaches and need Phenergan for nausea and to help sleep through it. We’ll give you Benadryl and Pepcid to prevent allergic reaction and help with stomach problems and do a pretest to see how you tolerate the iron before we proceed. Now stay off the internet!”

Good to know. But all the scary stories were spreading like weeds in the garden of my mind. I couldn’t forget the woman who had nausea and aching joints for two weeks even though she felt fine throughout the procedure and the reaction hit her two days later. And there was another woman who couldn’t control her bowels or leave her house for days after her infusion and even experienced migraines when none had existed before.

In my mind, I wouldn’t be out of the woods until a week had gone by after the infusion and I was still myself with no new ailments. My husband Dan even tried to talk me out of having the procedure because I shared some of the on-line stories with him. It was like a gamble: trade one medical situation, anemia, for another mystery ailment behind door number one, two, or three.

I needed to go through with the infusion. My ferritin level, or iron stores, constantly stayed too low for me to walk without chest pain and other symptoms that interfered with daily life. My hemoglobin was low the first time I tried to give blood at age eighteen and remained that way consistently through the years. Before that, who knows? Taking iron helped a little but for some reason I just don’t absorb iron properly through my digestive system. Doctors have explored other reasons for my chest pain, shortness of breath, occasional weakness of limbs, rapid heartbeat, ringing ears, hair loss, headaches, lack of energy…. I even went through complete heart studies twice, as well as pulmonary, gastric, and neurological studies. Blood tests found Lyme Disease among other disorders and in 2011, I spent three weeks at Mayo Clinic in Rochester, Minnesota to find answers. The first answer the Mayo doctors found immediately was my ferritin level was three and the doctors there like it to be at a minimum of one hundred. My best average level in several years was a whopping eleven. Woo Hoo. I came back to North Carolina with treatments for IBS, Lyme Disease related issues and new kinder, gentler iron tablets.

Even gentle iron can be rough on digestion. In total frustration, at my physical exam in 2013, I asked my general practitioner to give me a shot of iron because with my IBS (Irritable Bowel Syndrome) I could not tolerate oral iron. All these years he’d told me, “Please, take the iron,” and I forced it down just to function. That’s the only way I could keep going but still my ferritin level would hardly rise at all for some unknown reason. My doctor referred me to a hematologist for blood work and to discuss the possibility of an infusion. The hematologist and I agreed that I should try an infusion and hopefully it would help with the problems I’d dealt with for the last few decades. He was very encouraging and thought I’d feel much more energetic and get rid of many of my anemia symptoms. If so, it would be miraculous.

So, at 8:15 am, six months ago, Dan and I met with the medical practice insurance woman who was delighted to see we had an easy insurance policy. We jumped hurdle number one and moved on to number two. The large, open room held fifteen recliners flanked by upright padded chairs and an IV pole for each patient. I was the first patient of the day and could have my pick of the chairs. That was too big a decision for me so I deferred to my nurse Casey. She said, “I’d take this one so I could look outside. You’re going to be here for quite awhile. And it’s close to the snacks and the bathroom.”

At 8:30, Nurse Casey had a little trouble fishing around for a vein and finally gave up on the one on the top side of my wrist after I sang Rollin’ rollin’ rollin’ catch that vein it’s rollin’ (parody of the theme song from an old TV show, Rawhide). So other than having to switch to the top of my hand for the IV, everything went fine. Dan even watched the great vein expedition and didn’t get dizzy as he used to during our fertility clinic years, four kids ago.

They gave me oral Tylenol, then IV Benadryl and Pepcid to ward off an allergic reaction and stomach cramps. I felt a warm flush from head to groin immediately as IV-administered meds tend to do before MRI’s, CT’s, and such. A familiar feeling. Then woozie-headed and thick-tongued, I asked Dan to take my notebook and continue journaling, as I would likely be sleeping soon. I was right. This was my prep before they ran a test dose to see if I would have an allergic reaction to the iron. Handling the IV iron well, they allowed me to move on to the Big Bag.

Nurse Casey said, “This should take about four hours.”

Starting slowly, Nurse Casey came back two more times and sped up the drip each time since I was tolerating the iron so well. No nausea or urge to run to the bathroom as some people experience. Yay!

I got home at 1:30pm and took a nap. I was tired and my stomach felt peculiar. Supposedly one can have effects for several days after but I suffered very little discomfort. At bedtime, my head hurt and my back seemed a little funky and it felt like there was a squirrel nibbling on my left ovary or one part of my small intestine. But all in all I felt really good. My head hurt some and I needed more rest than usual for a few days.

Fast forward three months and my iron and ferritin levels were slightly above normal, which was terrific especially if it would hold. Six months later, my levels held steady and I feel better than I have in at least twelve years. I’m able to walk without the crushing chest pain and wooziness in my head. I am working on the deconditioning that came from not being able to exercise properly for so long. My skin and nails are healthier. My head feels oxygenated, I have more energy, and perhaps even think better. I may have found my fountain of youth and health. I only regret not finding it years ago. There are no guarantees that it will last forever but for now, I am thankful. An infusion may not be the right choice for many with chronic anemia but after reading only negative information on-line, I felt duty-bound to at least share my success story and get the word out to those people who may benefit as I have. Iron infusion is worth discussing with your health professional if you or a loved one live with chronic anemia.

16 thoughts on “Anemia Relief: Iron Infusion Changed My Life

  1. Reblogged this on Life Stories and Beyond and commented:

    Hoping this provides another option for people with chronic anemia to discuss with their doctors.

    Like

  2. Thank you for sharing your story, I have been considering doing this for a few months. It’s really great to hear such a positive tale where iron is involved!

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  3. Wow, Lisa. What a journey it’s been. I am so glad you’re better.

    Love,
    Diana

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  4. Oh, it’s a reblog. =) I read it through thinking otherwise bc I saw the BY LISA… above the post. =)

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    • Hi Diana. Yes, I sent it out again as I think it’s an important topic many physicians fail to mention to patients as a possible option. Thanks. It has been quite a journey. I’m feeling good.

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  5. Thank you for the positives. I had my first infusion. second is in a week. Zero complications here. I’m at 6 and can’t wait to check my numbers in a month. I thought my tiredness was depression. But realize now it was the low iron. I’m excited to be on the path to better days.

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  6. That’s fantastic. Glad that it worked so well. My girlfriend had an infusion recently and I had Potassium at ER. Why are we so short on essential elements? Thank you for the follow.

    Liked by 1 person

  7. That is great that you could find such wonderful relief! So glad it worked for you and a great idea to share the idea in hopes of helping others out there who may suffer from anemia.

    Liked by 1 person

  8. I got an iron infusion too!!!! My ferritin was 6. That stuff is pretty amazing isn’t it!!! I’m curious what the Mayo clinic gave you for IBS and how you are treating lyme.

    Liked by 1 person

    • Mayo found many things. First was that my ferritin was 3, and that my nervous system was broken. Well messed up due to several situations in the past. Possibly Lyme but also from a life or death bleeding episode with my first tubal pregnancy. I’d been told I had miscarried but actually the embryo was stuck in my tube and making me hemorrhage into my abdomen for at least two weeks. It was one of the most painful things I’ve ever experienced. So much worse than childbirth. Like insides are being sliced and stabbed. A nightmare. By the time I got to the hospital I was in shock with pints of blood pooling in my abdomen. Blood pressure beyond lowest low. I was white and my palms were gray. They gave me a blood transfusion and did a full laparotomy to get the embryo out. So, when the doctors examine medical history and saw that, one told me I had Sheehan Syndrome. Associated with extreme blood loss during pregnancy. It damages the nervous system and can lead to the next condition which they said was causing many problems, pain in my chest upon exertion. I had had several heart workups by that time and it was not my heart at that time. My chest hurt like crazy when I’d walk to our mailbox or lean over or especially on any incline. I had reflux also but that was not the cause either. So, they called the condition visceral hypersensitivity. Pain in organs when there is no reason for there to be pain. Related to my eating which made it worse. I couldn’t walk after eating without stopping constantly to let chest pain and lightness in my head settle. The big vegus nerve (excuse spelling) that runs from chest to stomach sent pain signal to my chest after eating. I ended up on several meds which worked well until I became allergic to them. One was hyosciamine.The other was metropolol, a beta blocker to control my blood pressure and heart rate. Now I’m on Bentyl to calm my stomach so it doesn’t sent the pain signals. It works well most of the time. I also take atenalol, a beta blocker that I tolerate. I wouldn’t take anything for that visit to Mayo. It’s like Disneyworld for sick people. So thoughtful and concerned and interested. Also, we enjoyed the set up at Rochester Minn. They had fares uptown where patients walked and wheelchair’d around and we all were experiencing the same thing. The Bentyl helps my IBS as well I think.

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      • I know about the vagus nerve because it is affected in dysautonomia /pots which my daughter has.
        The mayo clinic we have been so many times. It is where I was diagnosed with my muscle disease and my daughter with dysautonomia.
        I know about all the meds. We have tried them too.
        I am so sorry you have been through so much, the tubal pregnancy that led to so many other health problems. That is so much for one person to go through. I’m glad you have answers but I know answers don’t always mean everything is fixed!

        Liked by 1 person

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