Relationship between persons with CF

Question

Hello,

I am a male patient with CF. I am 20 years old and me and another CF patient [female] like each other as friends for a very long time because we understand each other very well having the same disease.

I would like to know what has to be done in a relationship with another CF patient in order to get little germs from each other.

We are not a couple yet, only friends, but we would like to get an answer to the following questions:

Is it possible at all that a CF patient has a relationship with another CF patient?

If yes, how can germs be transmitted?

What about cuddling?
What about cheek kissing?
What about kissing?
Or holding hands?
What about having children?

We know that we are not supposed to do therapy next to each other.

I hope you can help us? Or do you know who else we could ask?

We ask for your help.

Best regards,

Answer

Dear questioner,
Your question is quite a very personal, individual one with no clear yes or no.
I will try to give you some information and aspects to think about, then the
decision can only be made by you and your partner after considering all the
aspects at best with the help of your care teams in charge.
When thinking about a relationship between two people suffering from CF, you
mentioned yourself the possible transmission of germs. Hereby the most important
way is the transmission of germs of the respiratory tract: especially
problematic germs like Pseudomonas aeruginosa or Burkholderia cepacia, can be
transmitted via droplet infection when kissing, during close body contact, when
coughing or even via the hands. Therefore it is important to know if one or both
partners are carrying such a germ, which could represent a health risk for the
partner who is still negative.
Then you mention another quite more complex point: what about having a child
together?
Here, it has to be mentioned, that the chance of a CF-couple of getting
spontaneously pregnant is very low, as 98% of CF men are infertile. Sperm is
produced normally, but it does not reach the ejaculate due to obstruction of the
reproductive ways. Sexual intercourse is completely normal. However, it is
possible for the female partner of a CF man to get pregnant via in-vitro
fertilization. Hereby, sperm from the male partner can be taken during a small
surgical intervention from the testicles and the egg cell of the female partner
can be inseminated in a test tube.
Concerning the female CF partner, a normal pregnancy is possible, and many
pregnancies of CF-females are reported so far with a good perspective for mother
and child if certain things are taken into account. As a pregnancy represents of
course an extra strain to the mother, a good health status of the mother is the
best predictor for an uncomplicated pregnancy and birth. Therefore it is
important to optimize preconceptional health and treatment (e.g. use of drug
therapy in pregnancy, optimizing lung function and nutrition etc….).

If a CF couple is expecting a child, it has to be pointed out, that every child
will suffer from CF, since both parents each carry 2 “CF-causing mutations”. The
child, suffering from CF will need more effort, attention and time from the
parents due to his own therapeutic needs and probably phases with illness and
hospital stays, which could interfere with the own health problems of the
parents. If both parents are additionally colonized with problematic germs, the
risk of transmitting them to their child has to be mentioned.

Apart from all these “problems” that could occur in a relationship of 2 CF
patients, it should on the other hand not be forgotten to mention the positive
effect on the health and psychosocial state of a CF patient when having a happy
partnership or even a child. This might be a great increase in quality of life.
Furthermore all these aspects differ quite widely from patient to patient
depending on the individual health status and course of the disease.

In the end, this remains the decision of the couple itself, after extended
discussion with the CF-centers in charge and under weighing the pro and contra
of a partnership. Helpful in finding a decision might also be exchanging
experiences with other CF-couples, a contact can be made via the national
CF-associations.

We hope that you and your partner find the best way into a happy future.
Yours sincerely,
A.-U. Stücker und D. d'Alquen

22.02.2010