Brief Answer:
My opinion as follows:

Detailed Answer:
Hello!

Welcome back on HCM!

I passed carefully through your current concern and would like to thank you for the new medical information you provided.

In light of a more wide medical background of your health issues, I could explain that it is necessary to differentiate two main clinical manifestation of your actual clinical scenario.

a) Though some trophic skin changes (discoloration, desquamation, even skin ulcers) are not rarely present in chronic heart failure edema, your current skin changes (leathery, reddish mottling skin without hair growth) seem to be related more likely to cutaneous small vessels vasculitis (which is inflammation of small blood vessels that supply the skin and its adjacent structures.

The most probable reason for this kind of vasculitis is an inflammatory systemic disease such as a primary Sjogren syndrome or systemic lupus erythematosus.

The presence of osteo-arthritis supports the above alternative.

Whether we are in front of a primary Sjogren syndrome of mixed autoimmune diseases, it remains to be investigated by means of several immunological tests and clinical profiling.

So, coming to this point, I almost agree with you to the point that these additional clinical signs do not seem likely to be caused primarily by the heart failure syndrome.

But, from the other part, you should know that the majority of systemic autoimmune disorders (including the above mentioned) do affect (even severely) the heart (leading to heart failure), lungs (leading to respiratory insufficiency and pulmonary hypertension), kidneys (leading to important renal dysfunction), several glands (leading to secretory glands dysfunction), etc.

b) So, the important pulmonary hypertension and the subsequent right heart failure could not be excluded as the leading responsible cause of your persisting limbs edema.

An impaired renal function could lead to further exacerbation of the above clinical scenario.

Of course, the trophic skin changes due to the systemic autoimmune disorders give their contribution in aggravating the situation.

But, vasculitis is a systemic disorder and would be hard to believe that small blood vessels in the limbs skin are more severely affected that those inside the lungs, kidneys, heart, secretory glands, etc.

That’s why it is hard for me to believe that your cardiovascular system is innocent when discussing the edema issues.

And, for the same reasons I mentioned above, in order to properly acknowledge each actors (heart, lungs, kidneys, autoimmune disorders) their causative contribution in this matter, I recommended some medical tests in our previous thread and others as follows:

- cardiac ultrasound,
- chest X ray study,
- pulmonary function tests,
- arterial blood gas analysis,
- complete blood count,
- renal function tests,
- blood electrolytes level,
- blood protein (albumin) level,
- anti-Ro and anti-La antibodies,
- PCR,
- ESR,
- Complement titers

You need to discuss with your attending doctor on the above mentioned issues.

Only after performing a similar medical review, could be possible to properly judge on the efficacy of diuretics (their adjusted daily doses and possible diuretics resistance) and additional therapy to overcome secondary organs involvement due to the systemic autoimmune disorder.

Hope to have clarified your logically raised uncertainties on this matter!

I remain at your disposal for any further discussions.

Kind regards,

Dr. Iliri

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Brief Answer:
You are welcome!

Detailed Answer:
Dear XXXXXXX

I am glad to have been helpful to you!

Unfortunately I do not plan to come and live in Washington!

But, I would be happy to answer to all your questions on HCM whenever you will need!

So feel free to ask me again at any time!

Wishing all the best,

Dr. Iliri

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