Kay has struggled with chronic iron deficiency anemia for nearly 14 years. Today, she is no longer anemic.
A Bit of My History
More than fourteen years ago, I had my beautiful baby girl. I also ended up with years of iron deficiency anemia!
For years I took iron pills. Over time, they seemed to work less and less and stomach pains started becoming an issue.
Seven years ago, I ended up in the ER and they sent me to a hematologist which began my continuous iron infusion cycle.
To Read More On How It All Began...
- Iron Infusion Side Effects - My Story
After a successful first round of iron infusions, my second round was anything but! Here is my story of side effects with Dextran.
Years of Iron Infusions!
If you've read any of my other pages, you'll know iron infusions were a struggle for me. I had one round where I had a horrible reaction and they had to switch my iron. Over time, the other iron solutions they would try would seem to make me sicker and sicker. My life wasn't much of a life!
Generally, a month before I needed an infusion, I'd have no energy. I knew then that my ferritin was really low (below 10 or so). It was difficult to get anything done.
For the first few weeks after my first infusion, I'd have even less energy plus I'd have to deal with side effects. Often I felt like I had a virus. I'd get low-grade fevers, headaches, nausea, and just aches and pains. It wasn't fun.
Considering that I was getting infusions every few months near the end, you can see that that didn't leave me much time to just feel good.
For years, I'd been told that my cycle was likely to blame but because we had stopped my period for months at a time and I'd still need infusions at regular intervals, I was skeptical.
I had several nurses tell me that I should just remove my uterus. Well, that seemed drastic especially since I didn't know if it would work.
Yes, my periods have always been awful and they'd become even worse in the last few years. I had flooding periods and they could go on and on.
Finally, I just knew I couldn't live this way anymore. I decided to find a good doctor who specialized in hysterectomies. I figured that even if it didn't solve the anemia, at least I wouldn't have to deal with these awful periods any more.
But, Hold On, Insurance Wasn't As Quick To Agree With This Solution
I found a physician that specialized in Da Vinci robotic surgery. For me, after reading about all the different types of hysterectomies, I knew that was the way I wanted to go. I scheduled my appointment.
Before my appointment, I wrote a list of all the reasons why I thought I needed this surgery including that doctors and nurses had told me that my uterus was likely the cause. We went over all the things I had tried that had not worked. I was only about half way through my list when she held up a hand and told me I didn't need to convince her anymore. Surgery was scheduled.
The day before the surgery, I was fasting and very nervous (in general)...this is major surgery and a bit scary! I got the word that insurance had turned it down. The doctor's office said keep fasting, they'd have the doctor talk to them. Found out later she had an assistant do it and it was her first time doing a peer-to-peer review. Late in the afternoon, the day before my surgery, I was told surgery was canceled.
Keep in mind, I was hungry, stressed, and very emotional. I didn't handle it well. I broke down on the phone while talking to the nurse. She said I could appeal it but didn't sound hopeful.
The next day, I wrote a heartfelt four-page letter on what my life was like with infusions. My insurance company was new (to me). We'd had them less than a year. They didn't know my history and so I shared that history with them.
About a month later, I received the letter, my surgery was approved!
By this point, I was a bit frustrated with the physician's office. I had already found out that it was a nurse who did the peer-to-peer and she had no experience with it. They also were no help after it was rejected. I thought about finding a new doctor but the letter I received named this doctor as being approved to do the surgery.
And, so, I moved forward. Surgery was schedule for just over a month later.
I could write volumes on why I really wish I'd gone with my instincts to find a new doctor. At that point, though, I just wanted this done.
Surgery went fairly smoothly. There were a few hiccups. I might share that story at some point as well.
So, surgery was done...now we wait to see if I am still anemic.
Monitoring My Ferritin After Surgery
My hematologist closely monitors my ferritin. If it drops below 10, even if hemoglobin looks fine, they schedule an infusion.
Word of Advice: If you are anemic, please be sure they are checking your ferritin. Ferritin binds the iron. If you have no ferritin, your iron is about to drop. And, even with good hemoglobin, if your ferritin is really low, you'll feel anemic.
My last infusion was almost a year ago, a month before my surgery. I know my infusion schedule. That infusion was in December, by March, I should have had a ferritin level less than 10. So, in March, I had my levels checked, my ferritin was 58! Wow! It was normal! That stunned me! My hematologist said we would check again in a couple months. In May, it was 34...still normal!
Of course, albeit slow, my ferritin was dropping and that concerned me. I'd been a half year infusion free and was really enjoying not having those treatments. My hematologist assured me that it was okay if the levels bounced around. We'd check to see what was happening in a few months.
Went in for bloodwork in August, my ferritin rose to 40! In all the years I've been doing this, I've never had my ferritin rise without an infusion. This was exciting!
I am now officially not anemic any more and, my hemoglobin? It's amazing! It is now 14!
Would I Have the Surgery Again?
I'm not going to kid you, having a hysterectomy is tough.
Despite keeping my ovaries, I've had to deal with severe hot flashes. I'm also struggling with insomnia and weight gain. I've struggled with really low blood pressure because of my anemia and, for the first time, I am consistently border-line high. Found out that the uterus is important to controlling blood pressure. Who knew? I am looking for a good doctor who will check my hormone levels and hopefully that will help with these issues.
Despite these issues, yes, I would have the surgery again. I have energy again and I have been much healthier. Before my surgery, I would seem to catch illnesses so easily.
If you are contemplating a hysterectomy because of iron-deficiency anemia, I think it is really worth discussing with your physician but, find a good physician who really understands (and will take time to understand) your history.