FAQs: Lifestyle


Outwardly, I look healthy. People don’t believe I am ill. Should I try and convince them? Or should I let things be as they are?

One of the first and gravest issues that a patient might face, it has no easy answers.

While one may outwardly look healthy, there is no overlooking the fact that PH is a serious ailment (especially PAH) and it helps to have alert and helpful people around who can call out for medical aid, if need be. If privacy is not an issue, it is suggested that one does let trusted friends/colleagues/aides know. In addition, helping hands like the housekeeper, the lift and the car park attendants could be instructed to push open heavy doors or help with weighty bags on account of a ‘heart condition’.

One might also want to consider the possibility of an insensitive corporate reaction in the light of one going public at the work place.

One may choose to be part public and part private, as wisdom would dictate in each circumstance.

In the end though, it is a mighty personal decision to go public or remain private.

 

Can I marry?

Certainly.

Take care to choose a caring and understanding partner.

When the patient is a woman, married (conjugal) relations may be carried on, with strict birth control methods.

Hormonal pills/patches are not advisable for use as they increase the risk of blood clots. Condoms for men and spermicidal diaphragms for women are usually considered good. Vasectomy in men and tubal ligation in women is best.

 

Can I have children?

Most certainly not, when the patient is a woman.

Some PH medicines may interfere with pregnancy and endanger the foetus and/or child birth.

Most importantly, the rate of death is high with pregnant PH patients. Even otherwise, it might lead to very serious deterioration in the quality of a woman’s life as the foetus draws a lot from the body.

Whether the patient is a man or a woman, one might also want to consider the possibility of passing on defective genes to the next generation, in the case of idiopathic (including familial)/ heritable PH.

For other forms of PH, men may ask their doctors.

Fostering children in an orphanage might be an option.

 

What lifestyle changes should one effect?

Abstain/ keep off:

  • Polluted air
  • Smoke (including cigarette), Dust & Talc
  • Carrying weight
  • Speaking loudly
  • Climbing (including staircases)
  • High altitudes beyond 2500m
  • Hot tub/ sauna/ long hot baths & showers (can lower blood pressure suddenly leading to fainting/ sudden collapse)

Limit:

  • Processed foods
  • Water intake (less than 1.5 Litres/day)

Highly Recommended:

  • Smile! Laugh! Love!
  • Light breathing (pranayama)/ meditation
  • Music/ Art
  • A very nutritious diet
  • Rest & Good Sleep
  • Sunshine
  • Green Environment 

Making these few lifestyle changes may not take much. It will help reduce risk considerably.

 

Can I work?

It has been observed that patients bear an almost individual response to PH. While some are able to manage their daily tasks at very high pressures, there are others who are barely able to move at moderate levels.

The guiding principle in PH yet has been that the heart is under stress especially when the body is  physically exerted.

Eg.: One's heart might pump 3 litres of blood while relaxing on a sofa and 7 litres while climbing a staircase.

Therefore, ask your body. The most important thing is not to stress oneself – physically or mentally - while staying active. This is some body of evidence in favour of an active lifestyle although this needs to be investigated further **

**

http://erj.ersjournals.com/content/40/1/84.abstract

http://erj.ersjournals.com/content/40/1/7.full.pdf+html

http://arthritis-research.com/content/pdf/ar3883.pdf

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0041603

 

I suffer from mood swings and memory loss. At times, I get depressive. Is that part of the disease?

Mood swings are generally not part of the condition.

A sense of despair can overcome anyone. It is important that one finds happiness with something or someone. Family, friends, hobbies and light pranayama/ meditative yoga can help.

This bit is in one's hands.

Just take care not to find relief or pleasure in high calorie or high sodium (salt) foods -  weight gain isn’t too good for this condition and sodium not very advisable.

With PH, one might experience a shortfall with one's memory.

 

Can I drink alcohol?

In moderation - less than 07 units, over a week.

And certainly not, the week’s quota at one go!

As per studies in the UK, people of South Asian origin have less hepatic capacity for alcohol.

 

Can I smoke?

No. Never.


PH Drugs are expensive. Can one get them at a reduced price?

1. Your neighbourhood chains like MedPlus offer 10% less on all medicines were one to take up their loyalty card. Religare too offers a discount to senior citizens. Local retailers, in order to compete, might give a discount if asked for. Therefore, just ask! (without embarrasment or bother). After all, medicines are like any other goods sold in a shop ....

Alternatively, you could try picking up the medicines "in bulk" at one go (month's supply or more)  - maybe a reluctant retailer would give you a discount then.

A discount of 10% and above at a retailer should qualify as a good one.

2. Pharmaceutical distributors can bill to a medical practioner/ organisation, not an individual. If you are really pressed hard for money, you could request your doctor/ medical practioner to help you route your medicines from a distributor in your city. It should come to you for about 18-23% less. In such a case, do ensure that that particular distributor enjoys a good reputation and sells only genuine medicines.
The distributor's contact details can be found out from a company's website or regional/ area office.

3. For the same drug and strength that has been prescribed, try a brand from a different company (subject to your doctor's approval)

For example, the drug Sildenafil has more than 200 brands or names in India (every company has its own name) and comes in various strengths like 10mg/ 20mg/ 50mg and so on

Ask a friendly retailer to look up the prices of different brands and give you the cheapest two or three options (PH specific drugs might not have many for now, chances are it will change soon). Check with your doctor. The idea, generally, is to choose one from a more reliable company.
You could also look up the prices in CIMMS or similar drug directories that are kept at drug stores/ chemists for reference.

Or you could look it up online. Here: