My Story |
At the time of this writing, I was 50 years old and hadn't been feeling good for quite a few years. Over the last few, things had taken a drastic downhill slide. |
“We think you might have Hemochromatosis.” |
These words were the culmination of numerous tests and visits to my doctor. We had been trying to determine why I had been feeling sick for so long and why I had no energy. (I was content to do absolutely nothing, but most of the time even that took too much energy!) I had lost interest in just about everything I enjoyed, including fishing and family. I really suspected some sort of cancer at first. No one really seemed to pay any attention to me or to listen to anything I was saying. I went from test to test and was getting the impression that I was being looked at as a hypochondriac. I was getting extremely frustrated and very depressed because I knew there were problems. Regardless of what I said, everyone jumped to their own conclusions and had done their own thing. “I may have what?” I asked, quite concerned. I had never heard of this, or heard the name before. This was the first positive feedback that I had received in well over a year. My wife and I went home and sat down to discuss the news. At first, I was bewildered. I didn't have a clue of how to deal with this. I did know however that I needed to get information that was reliable and up to date. We searched the internet and found the new CHS web site and forum . It was there that I would make contacts with others and start finding answers. I read "The Bronze Killer" and couldn't put the book down. I shook my head as I read, relating first hand, to a lot of the problems that were described. I knew too well about the unexplainable rages and the deep dark depressions. I knew about having absolutely no energy and how everything became a major chore! The sad part was at the time this was happening, I didn't know it.. How I managed to keep my family is beyond me and shows their strength. How I managed to get through college and hold a job afterward I'll never really understand. I knew first hand how one could lay down and sleep for a night and be just as tired in the morning as when I lay down. There was no decent rest
to be had! I had many of the major symptoms that have been tied into Hemochromatosis as well as many that have never been totally accepted or
recognized as symptoms of the disease. Between us, we were able to document distinct major symptoms for well over ten years and some of the
lessor ones back almost 30 years. My doctor sent me to a hematologist and the whole process made me feel as if I was wasting my time. The genetic testing hadn't been done and I was told that a transferrin saturation level of 64% was nothing to worry about. Normal was right around 60%. (Accepted Normal T/sat levels are 25 - 40% ) A ferritin level of “only” 865 ng/ml wasn't anything to be concerned about either because it wasn't serious and rarely, if ever, caused any damage until it was well up into the thousands.( Accepted normal ferritin tops out at 300 ng/ml for men and only 200 ng/ml for women. Groups are working at getting this lowered by 20%.) The genetic testing was finally done and my results showed that I was officially only a carrier (HFE C282Y). (Most countries only test for the two most common mutations; H63D and C282Y. Due to lack of documented evidence and lack of collaboration, they disregard or ignore any of the other suspected genes or mutations.). I was told that there was nothing to worry about since carriers almost with out exception, never load iron. That was to be the very unsatisfactory end of it. My wife, who had accompanied me spoke up, asking, “How do you explain all of his symptoms if it's of no concern and rarely causes any sort
of problem?” I donated blood the next day. I had read how people had been sore and ached the day after a phlebotomy; nothing prepared me for being as sore as I was. I mentioned that on the CHS web site forum and received valuable advice from other members which helped a lot. Within a week, most of my physical symptoms had undergone major improvements. Within two weeks, my moods had stabilized and I was much easier to get along with. I had always thought that I was pretty easy to get along with. Now I know otherwise. What's worse is even after one realizes what caused the problem and makes the required adjustments and treatment starts, too many people will still use the previous mood swings as an excuse to ignore things and to put you down for no valid or real reason. It's so much easier to pin any sort of issue on you rather that to look at a problem objectively and really sit down and deal with it as I found out. My frequent trips to the bathroom were drastically reduced to the point that I could start to get on with a reasonably normal life. I wasn't constantly stiff and sore or having as much trouble sleeping. My energy and interest levels were slowly on the way back up. These improvements lasted for about five weeks before the whole cycle started over again. This was the pattern that proved to be the norm for me up until a minor set back in late November, six months after I was diagnosed. I went to the hospital with chest pains. I hadn't had a heart attack, but they felt I might be in danger of congestive heart failure and that I should get this checked out. On December 5th, I went to the lab and had my ferritin done. That afternoon, I tried to make my 4th donation at CBS and was put on an indefinite deferral because the possibility of heart problems hadn't been addressed or ruled out. I wasn't going to be allowed to donate blood until this was all cleared up and sorted out. At this time my ferritin was down around 500. I was very depressed. Things had been going relatively well up to this point and I was looking forward to getting to a point where I could get on with sort of a normal lifestyle. I called the hematologists office and was able to get an appointment at the phlebotomy clinic for January 25. In the meantime, I was sent for an echo cardiogram for my heart and an ultrasound of my liver. Everything came back normal and clear with no evidence of any sort of heart problems. The whole episode was attributed to very high stress levels. On January 25 2007, I had my first phlebotomy at the hospital and was quite happy to be there. I was put on a six week schedule with a target
ferritin of about 100 ng/ml, providing that all my blood chemistry stayed in balance. I had five phlebotomies at the hospital clinic along with a
couple of heated discussions about why I was there. (It was a waste of resources. Blood resources. At the clinic, they dispose of the blood as they aren't equipped with the facilities or staff to properly collect it.) I received my letter clearing the way for me to return to Blood Services for donations and returned there at the end of August to continue treatment, (maintenance) that way. The staff at the phlebotomy clinic were very knowledgeable and excellent to work with. My levels weren't down to the 100 mark but with careful monitoring I feel I should be fine going to blood services. By doing that, I free up a space at the clinic for someone that isn't able to donate. The option of returning to the clinic is still open if the need arises again. My lifestyle isn't like it was but I'm not as young as I was. I can go fishing for a day without problems and even have interest in it. I can go out and play a round of golf with out using a power cart. I have a big lawn and use a push mower; it gets done with out having to take anything more than a water break. I may be tired, but it's an honest tired rather than being at the point of exhaustion. Others from the forum and various groups had questioned some of the symptoms that I blamed on my iron levels. As my numbers went down, just about all of those symptoms improved or all but disappeared and few of the ones that concerned me were age related. I haven’t been quiet about Hemochromatosis. I tell anyone who will listen and do my best to stay informed about it. A few friends from different regions tell me they’ve been diagnosed. If I can help others get diagnosed and avoid seeing them fall through the cracks in the system, I’ll be doing it very happily. Bobmac.Since this all started, I have found quite a few others that are "only carriers". Yes, contrary to what we had been told, most of us load iron to various degrees. Some of us have some of the same symptoms but to varying degrees. Some do load iron but have never have any symptoms. So much for "Carriers, almost with out exception, never load iron!" As of the 8th of January 2008, my ferritin was down to 48. I had some interesting, unique, and trying times getting there including problems at
work. If I'm involved or my name is mentioned, it's far easier for them to blame me
than to find out what really happened and it's still brought up by some of the management when it's to their advantage or an easy way out for
them. Looking back on the Hematologists reluctance to make the commitment to doing all my treatment in the hospitals phlebotomy clinic, I think about how many times I've donated blood and how often the clinic isn't busy. It's amazing that so many people are so bored that they can hang around the malls or wander the streets causing trouble or complaining they have nothing to do. Why not go donate blood? There are empty chairs just waiting to be filled and there is an ongoing need for it. This condition has stolen a few years from me and I'm going to do my best to make sure it doesn't steal any more! In the process, I've made the
commitment to help someone else by donating useable iron rich blood. Nov 2008. Apr 2009. Sept 2009. It will be very interesting to see how this develops. I was in on the 29 September to donate blood again. That was a 13 month break and it was a bit of an ordeal again. The vein in the right arm collapsed as soon as they got the needle in and they had to dig in the left arm. They were finally successful. April 2010 |
© Bob McLeod 2008 |