Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
Hello;
I just joined the group today. In fact this is the first time I have joined or tried to join a group. I was diagnosed right after I turned 40, I only found out because on July 3rd and 4th I had one beer each day, the first day I passed out and I did the exact same thing the next day after just a few sips of the beer. I came back from the trip I was on and had a battery of tests, mid-life blood and all tests done to see what as going on. long story short, my Dr called me, after the genetic test was performed, to give me the news I had aggressive hemachromatosis at 7am. Dr's never call with good news that early.
I started treatment a couple weeks later, they were draining 2x a week at least 1.2 to 1.3 lbs of blood each time. When I started treatment my ferratin levels were right at 3,000. I never knew what or why, but I was orange colored, or Golden california tan people said since I was 31 or 32. I had to start testosterone therapy at 35 or so,, it was odd my dr said, but it happens. I had had one shoulder surgery and many aches and pains, constant pain for many years. I have always been semi healthy and maintained a decent weight, but right at my 40th birthday I weighed close to 230lbs. Im 6'3", that was too heavy being I wasnt feeling good or had much endurance.
While I started my treatrment, blood draing, removing excess Vitamin C, watching what I ate from Cast Iron pots and pans, grilles. I also started to drink a lot of water evry day, exercised more, as my Dr said, I faced the disease and owned it and reversed the path my body was headed down. Yay, I felt good, I felt strong, I felt,,, just better. Now, I'm going to be 44 years old this next July 2021 and I am so f'ing down, depressed, I just am sick of this.
I have to have a right hip replacement this Dec 7th 2020, I have had a cervical neck fusuion and bone grafts in my neck this past May 2020, I have had my left shoulder surgery, since diagnosis, I have been told I will have to have my left hip, left knee, and maybe right knee replaced in the near future. I have started a antidepressent, which I have never taken and I hate the thought of, Marijuana has helped me with sleep, pain, etc,,, but its not medical in KY. I see a therapist now,, I have a soon to be 14 year old son, which is my world. I have had za string of bad relationships, I now know why, or some of the reasons and I am working on that. But really, I am sick and tired of of more surgeries, more uncertainty, more disapoitment. I don't, I will not live confined to a chair or unable to have a mostly active life. A lot of times I feel like a small boat lost at sea with no direction or no port ever. Anyone else having experiences like this and why and how do we keep moving, going? If not for my son,,, I wouldnt even be writing this or worrying or doing anything,,,, how what where do I keep fighting and beating this and is there any hope???
Please help me, I'm literally falling apart and I dont have much glue or strength inside me for much more of this....
I’m a little older than you but I I am about the same size you were at 40. My ankle joints ache and the phlebotomy seems to have left me struggling for energy but I want to get through it quickly hoping to avoid things getting worse so that I can be there for my kids. They’re a lot younger than your son.
That would be my first thought - well done for focussing on your kid! He needs you and he’s going to go on needing you and right now you are modelling endurance for him.
If you’re doing this only for him, then how you handle this is still really important. If you can show strength through the kind of things you describe, he will be able to look at the rock you were and it will help him find the strength he will need when he feels defeated.
I see in my own son how important my example is to him. It’s horrible seeing your flaws reflected back at you but it’s forcing me to be better knowing how it can set the tone for him. Your love for him is important. Continue to use that, as you have.
The joint replacements are going to suck, I have no experience of how badly, but I’ve had a couple of days of excruciating pain from my ankles and so I’ll extrapolate from that. I wouldn’t wish it on my worst enemy. Again, I’m sorry. Again, show strength.
If you believe in God, pray. It helps. If you don’t believe yet, maybe it’s time. You need support and strength and there’s an infinite reservoir there if we ask for it.
I hope some of my rambling helps. I just wanted you to know you’d been heard and someone else will be praying for you.
I injured my back really bad at 38. Then, other problems started. It seemed one disease after another started to raise to the surface: Diabetes Insipidus (that's SALT diabetes, Not SUGAR diabetes), hypogonadism (requires testosterone shots), joint problems requiring knee surgery, gallbladder removed, nephropathy, periodic paralysis, periodic migraine, partially blocked arteries, fatigue, brain fog (had to retire at 40 as a software developer), etc..
Felt like I was growing old way, way too early. I had been accepted to start doctoral studies bypassing the need for a masters degree. The brain fog flushed that down the toilet. Saw about 20 doctors to get a definitive diagnosis. They were all stumped.
One day in my early 40's I had had enough. It was one of those unique moments in life, out of frustration and anger, while home alone I stood up and shouted at the top of my lungs to God: "what do you want me to do? Why am I going through all of these health problems"? No more than 15 seconds passed when the phone rang. It was Fr. DiMartino from Virginia (I live in NH). I never met him. He said he knew my now late best friend from Virginia, Steve Curley. He said Steve had mentioned my name in conversation a number of times so he thought he'd give me a ring.
I had to sit down as this phone call really knocked me off my feet. We began to chit chat a bit about our mutual friend. Then, I asked this priest if he had a specialty or interest in his ministry. He said he was called to be a spiritual director. I then asked him if there was a type of spiritual direction that he used. He said he concentrated on the writings of St. John of the Cross along with St. Teresa of Avila.
A moment of dead silence then occurred from my end of the phone. Father thought he had lost connection. He asked if I was still on the line. I then told him about the screaming conversation I was having with God about my health issues just before he called. Father was now silent on the other end of the line. I asked if he was still there. I then told him that I had just spent two years reading the works of St. John of the Cross and asked if he could offer me some spiritual direction. Again, there was silence on Father's end of the line. I asked if he was still there. He said he only directed 12 men at a time but one of his directees had just moved away. He said he had never directed anyone over the phone but said he'd make an exception for me.
So, for the next 18 months or so his direction with St John of the Cross started me on a new path in life. The details of this spiritual direction would fill a few volumes. One of the main topics was about the reasons why we suffer in life along with the great value of this suffering. In short, the suffering we encounter in this world has a value greater than we can imagine if we unite it with the sufferings of Christ. In other words, remember the story of Christ in the Garden of Gethsemane where He prayed the night before He was crucified. Because He was God, He could hear all of the prayers of encouragement by every person in all time periods while he was praying to God the Father. So, when you ask to join your suffering with His as a means of encouragement He is listening to you then as you are currently praying now. By joining your suffering to His you are "making up for what is lacking in Christ's suffering" as St. Paul once said.
Duc in Altum,
Rusty