My energy is beginning to dwindle again. Although still completing work duties, by the end of the work day I'm frequently no longer having any energy remaining. I am so exhausted that daily activities are out of the question, even showering requires more energy than I have some days. I had my follow up appointment with my hematologist and as I suspected, my iron levels were dropping once again requiring another round of iron infusions.
I was apprehensive about starting iron infusions when my GI doctor first recommended it. I had been taking iron tablets for more than 20 years without issue until suddenly in 2015, I could no longer tolerate my iron tablets. Ever since my 2015 hospitalization I've been experiencing chronic nausea and increased chronic pain. Iron tablets were adding to the pain and did lessen when I discontinued the tablets. However, I still required iron or risk worsening anemia. With my hemoglobin dropping and my chronic fatigue worsening, I was desperate to start iron infusions. I no longer cared about my needle fear, I just wanted to feel better.
And so my experimental adventure with iron infusions began. After my first round of infusions, it took about 4 months and I was requiring another round. After my second round, my doctor changed me from ferrous sulfate to ferrous gluconate tablets in an attempt to supplement my iron intake again and lengthen my time in between infusions. With this new addition, I was able to lengthen my in between times to six months! However, three months after the third round and I'm back to the four month in between time.
Sure, every time I sit in the recliner awaiting my IV to be started, my PTSD is triggered. Anxiety begins to overwhelm me. I feel my body automatically sinking back into the recliner more and more, as if trying to be swallowed by the recliner in an effort to escape the situation. I force myself to hold back tears only to fail when I require two or more attempts to start the IV. The fear, the pain making me question why am I putting myself through the torment.
But I remember why I subject myself to my needle fear when I have a weekend full of activity due to overflowing energy. I remember, that energy, that ability to participate in two days worth of activities...that's why. Because I love those days. Sure, you'll find me often in bed by 8 pm on a weekday after working. And sure, I can rarely stay up past 10 pm. But those days when I can engage in activities for hours...those days excite me. Those days are worth it all.
I have another week before my next round of iron infusions and I'm ready for the day to arrive. I'm ready to have energy again on a consistent basis. It's uncertain regarding the frequency for receiving the iron infusions. However, regardless if infusions are required every three months or longer - I'm willing and ready.
I tried this too, but had to be admitted in case of any anaphylaxis reaction! Tabs weren't being absorbed by my body though I had been on them of years, and my RBC was still low despite taking extra liquid iron. Wish I could do the iron infusion more but too expensive :)
ReplyDeleteOh that's awful!! It's Definitely an issue that needed medical treatments are still too expensive. At my center, they do chemo and iron infusions in the same area with nurses watching on case of reactions and we're right across the street from the hospital. Did you have a reaction?
DeleteHi there, I'm trying to get an Iron IV after dealing with anemia for alot of years. But it is so hard to find a doctor that will approve. Would you mind sharing your Doctors name and if your doctor knows about low ferritin anemia? I have normal iron, normal hemoglobin but almost no ferritin and it's next to impossible to find a doctor that will treat this. I'm scared of needles too. I can't imagine sitting a chair for hours with one but at this point I'm willing to try it. Thank you for any advice
ReplyDeleteMy last Gastroenterologist is the one who referred me to a hematologist for iron infusions. My hematologist monitors my lab values and he makes the decision based on my iron stores, including ferritin, not my hemoglobin. The infusion I receive itself only takes 15 minutes and then I'm given the option of saline fluid for half an hour afterwards so it's a fairly quick process.
DeleteHi Jenny, Thank you so much this helps a lot. I'm definitely new to iron iv and didn't realize it could be so fast..that's encouraging. Every time I do blood tests I'm almost pass out. :) I have a colon blockage in the small intestine and have had a lot of bleeding. I've done a lot of colon tests but right now I just have to bid my time with a liquid diet and give the intestines time to repair. So I know that coupled with being a vegetarian (not the healthy kind :) has gotten me here. Now if I can find the right doctor. :) Thank you so much again
ReplyDeleteYou're very welcome. Good luck!
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