Hi Im new to this ...

[Marfaned]

Iron

Iron

Hemosiderosis and Hemochromatosis are very similiar. I was found to have iron laden macrophages within my alveolar air sacs.

You are right. Your case seems a peculiar one. The question is whether the two disease processes are interrelated or just coincidentally running together? Sometimes this can be a difficult one to sort out. Large bodies of data through an international consortium have to be analysed along with detailed DNA data.

 

[Marfaned]

I used to work in blood bank and about 20 years ago we had a man who came in every month or so and had to have a unit of blood taken off. When he needed blood drawn, it was interesting, you could kind of smell a metalic smell from both him and the blood. I don't know if the smell changed after he had a unit taken because I personally only saw him when his iron was high. I don't know how he is doing because I left that hospital quite a while ago

The odor could be ketone bodies (specifically acetone aka nail polish remover) due to metabolic disturbances. This does indicate some liver/pancreas damage and insulin regulation problems. Or he could have been a diabetic; due to long standing insulin problems running in parallel. This does require good management.

 

[Lynlw]

The odor could be ketone bodies (specifically acetone aka nail polish remover) due to metabolic disturbances. This does indicate some liver/pancreas damage and insulin regulation problems. Or he could have been a diabetic; due to long standing insulin problems running in parallel. This does require good management.

He had a tannish color that can go along with liver problems, but the smell wasn't like nail polish, or even the smell when someone has advanced liver disease or during an autopsy with cirrosis, it smelled kind of like rust does when it is wet, it you know how that smells.

different topic. but do you know of any relations between T-cells and calcification of valves/conduits or even internal scar building? If been wonderring a few things, but can't find much to read

 

[Marfaned]

Calcification

Calcification

He had a tannish color that can go along with liver problems, but the smell wasn't like nail polish, or even the smell when someone has advanced liver disease or during an autopsy with cirrosis, it smelled kind of like rust does when it is wet, it you know how that smells.

different topic. but do you know of any relations between T-cells and calcification of valves/conduits or even internal scar building? If been wonderring a few things, but can't find much to read

Calcification and scar tissue formation (including that obstructive 'pannus" formation around replaced valves) involve a cascade of repair mechanisms that the body trigerrs after injury or surgery. Although it is hematologically driven, T cells themselves are secondary. T cells as you may have read are primarily involved with the basic immune response. There are other factors which participate and unfortunately we still do not know how to slow down or stop this process which tends to occur rapidly only in about 5% of cases. Those with bio-prosthetics will see it in about 10 years. Older people do better and get a few extra years with bio-prosthetics. This is a large topic so I will try to put this together as soon as I finish my Tax returns.

 

[karen14]

Hi Marfaned, welcome! I share your condition. Let us know how it goes for you, ~Karen

 

[Lynlw]

Calcification and scar tissue formation (including that obstructive 'pannus" formation around replaced valves) involve a cascade of repair mechanisms that the body trigerrs after injury or surgery. Although it is hematologically driven, T cells themselves are secondary. T cells as you may have read are primarily involved with the basic immune response. There are other factors which participate and unfortunately we still do not know how to slow down or stop this process which tends to occur rapidly only in about 5% of cases. Those with bio-prosthetics will see it in about 10 years. Older people do better and get a few extra years with bio-prosthetics. This is a large topic so I will try to put this together as soon as I finish my Tax returns.

Thanks, the reason I was aking about Tcells specifically, is I've been reading about psoriasis is an auto immune diseaseand how the tcells basically go wild and the skin builds up as well as other things that can be affected, the descriptions made me think about how some people, like Justin calcify, build scarring in and around their hearts much quicker than others (even in their age group) and wonderrred about the possibility of it being related to what goes on with psoriasis, in a person that has psoriais (and to not skip tooo far ahead wonder if some treatments for psorisis would as a side effect slow down the process of the heart/valve/conduit calcification, scarring ect)
I know you can't answer specific questions about anyone, but would be curious if my thinking is completely off track or suggestions of questions i can add to my list for his various docotrs

 

[Marfaned]

Hi Lyn: Sorry for a delayed response. I had some Tax return complications and my accountant wanted to get some documents sorted out. I was neck deep in that stuff but it is done now.
Your thinking on the Psoraisis is not wildly off but it is a complicated matter. Like I said there is cascade of processes leading to valve calcification and the correlation with other auto-immune diseases are all over the place. The trouble is correlations may be coincidences and proof has a high bar. T cells are of course involved, but a treatment with immune modifying drugs in the forward direction has thus far not been recommended as a treatment. Theoretically, some of these drugs may slow things down via an unknown pathway but we still do not know enough. The dose required may become too high leading to other problems. No question is a silly question for doctors and you can certainly ask them about it as somebody may be doing a study on a related matter that we do not know about.

 

[Lynlw]

Hi Lyn: Sorry for a delayed response. I had some Tax return complications and my accountant wanted to get some documents sorted out. I was neck deep in that stuff but it is done now.
Your thinking on the Psoraisis is not wildly off but it is a complicated matter. Like I said there is cascade of processes leading to valve calcification and the correlation with other auto-immune diseases are all over the place. The trouble is correlations may be coincidences and proof has a high bar. T cells are of course involved, but a treatment with immune modifying drugs in the forward direction has thus far not been recommended as a treatment. Theoretically, some of these drugs may slow things down via an unknown pathway but we still do not know enough. The dose required may become too high leading to other problems. No question is a silly question for doctors and you can certainly ask them about it as somebody may be doing a study on a related matter that we do not know about.

Thanks, No problem, I appreciate you even rememberring I asked and glad you can now breath and relax. first off the ointments worked on his few spots, for now so that is good and has him very happy. Justin has a couple appts coming up with both his ped card at st chris and his adult card at CHOP/Uof P, I'll ask them and let you know if i hear anything interesting. his CHOP and UofP docs do tons of research, and are scarey smart. Even tho he is doing well with his psoiasis, maybe I'll ask if he should get an opinon from someone on staff and find out if they know of any research about psoriasis and the different treatments ect

 

[Lily]

Hi I'm new to this . . .

What?!? I'm not new to this [heart valve thing] and I'm feeling like half an ***** after reading through some of these posts!

Welcome to the site; you obviously have a lot to offer as well .

 

[Maggie]

Hi Ross, I am new here. I am thought to have marfans, I have most of characteristics except that I am not tall at 5'5". I have extremely flat feet and fallen ankles, hyper-extention in all my joints an aortic aneurysm of 4.5 cm, and my valves are leaking which has gotten worse over time. My grandfather may have had it, he was very tall and thin, flat footed and died at 70 of an aneursym he was never tested. I am trim, in good heath and a young 53 my doctors do not feel it is worth all the expensive testing because I do not have children and they feel since there is no cure why bother finding out. I go regularly for a CT measure of my aorta and echo for valve leakage. My cardiologist is now sending me to a surgeon for more testing and possible surgery. Just wanting to touch base with others like myself. I am lucky to have a very supportive husband but want to connect and learn from people who share my health issues.

Maggie

 

[Maggie]

I am new here. I am thought to have marfans, I have most of characteristics except that I am not tall at 5'5". I have extremely flat feet and fallen ankles, hyper-extention in all my joints an aortic aneurysm of 4.5 cm, and my valves are leaking which has gotten worse over time. My grandfather may have had it, he was very tall and thin, flat footed and died at 70 of an aneursym he was never tested. I am trim, in good heath and a young 53 my doctors do not feel it is worth all the expensive testing because I do not have children and they feel since there is no cure why bother finding out. I go regularly for a CT measure of my aorta and echo for valve leakage. My cardiologist is now sending me to a surgeon for more testing and possible surgery. Just wanting to touch base with others like myself. I am lucky to have a very supportive husband but want to connect and learn from people who share my health issues.

Maggie

 

[Luckyguy17]

Maggie,

Welcome to the forum Maggie, am also a young 57 and recently had surgery for a few valves. You will be well served with this forum and communication with the experienced members on CHD.

Good luck with your process and keep us informed on your progress and doctor meetings.

Gil