Dear Smile E.

How do you cope with the infertility of PCD. I’m so sick of my family members randomly wishing me a Happy Mother’s Day! It hurts. I’m not sure if they are intentionally inflicting pain or if they are just unaware. However I tell them every single time, I’m not a mother so stop it. They don’t seem to care, because every year it’s the same thing. I just want to run and hide from the world for the whole weekend. What advice do you have for avoiding the weekend or handling people who seem to be mean?

Signed,

Childless

Dear Childless,

((((Great Big Hugs)))) my friend! This is a subject I know well. I unfortunately have no kids either. I got asked this week by my father if I could have kids at this stage if I wanted to. Ugh, I wanted to curl up and cry. I asked why he would ask me something like that. He replied, “well your top looks like a maternity top.” Ugh! Cue the ugly crying… One of my other family members goes out of their way every single year to call me, to wish me a Happy Mothers Day. Mind you we live four states away from them.

As for strategies for this hurtful time period, I usually just log off social media and turn off all my mobile and cellular devices for the entire weekend and grab a craft projects to do while bing watching AppleTV. A good long movie marathon or series show helps pass the time while sewing or drawing. I usually have all my grocery shop done, so we can just cook and hide the weekend away. It’s just easier for me after almost thirty years of marriage with no kids to just be us for the entire weekend while waiting for Monday. I hope that you have a gentle weekend and the Monday comes fast for you. Hang in there, it’s almost over; the dreaded weekend that is.

Yours Truly,

Smile E. Turtle

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Dear Smile E.

We were told that symptoms and complications will get better as our PCD child ages. However the adult PCD patients in the support groups are struggling just as much as we are and they have low lung function too. So what is the point if things aren’t going to get better. And why did the doctors give us false hope?

Signed,

Frustrated Newbie

Dear Frustrated Newbie,

I’m so very sorry that you weren’t given accurate information and were given false hope that things will get better. While primary ciliary dyskinesia is not a newly discovered disease or a disease that hasn’t had treatments aimed symptoms only, it is a disease that is newly researched and has no FDA approved scientific treatments for the issue of dyskinetic cilia. With the explosion of new PCD research, new genetic research, new gene modifiers (seen in cystic fibrosis) there is renewed interest in the possibilities of helping PCD patients beyond just treating symptoms and maybe, maybe slowing down the progression of damage done to the body due to having PCD.

Inaccurate information can be a clue that a provider isn’t up to date with the latest scientific data. With the fast paced research situation partly driven by the interest in how the recent virus was developed so fast and it’s delivery method, and the CF community’s new successful gene modifiers unfortunately there will more instances of providers being behind in the latest of the latest scientific data. This is why finding an accredited PCD center of excellence is a must currently for all PCD patients. This will help us get ready for all the new and incoming treatments, medications, and research information.

As for why bother or what’s the point, while I’ve personally struggled as a kid and then again as an older patient. I have however had a great life that I wouldn’t change. It’s important to remember that PCD is an episodic condition that ebbs and flows and then and in the cruel Cinderella phase. The Cinderella phase is actually why some clinicians misunderstand that PCD gets better. The Cinderella phase is a period of time where symptoms ease and seem to all but disappear, and the patient has a perceived better quality of life. This phase begins in the late teens to early twenties and can last until the late twenties early thirties. Researchers do not understand the reason for the Cinderella phase in PCD. Some researchers call it a honeymoon phase instead of the Cinderella phase. It’s is extremely important to remember that PCD is a progressive genetic disorder that has no cure, no treatments, and it will progress. Usually after the Cinderella phase is over the symptoms and episodic nature of the disease process returns; sometimes with a vengeance. This is why some adults consider the Cinderella phase as a cruel phase. You think you are done with everything you suffered as a child and you have a great few years and feel normal, and then it is ripped away from you and you are sick again. Maybe even sicker now.

Yours Truly,

Smile E. Turtle

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Dear Smile E.

I’m having a conflict with my current homecare nurse, what do I do?

Signed,

Unhappy Patient

Dear Unhappy Patient,

If you are having problems with your homecare nurse and you wish not to discuss the issue with said nurse, then I suggest that you call your nursing agency and ask for a nursing supervisor. You are perfectly in your right to ask that a particular nurse not to be involved in your case and to not be sent to your home without giving the agency a reason. However I do suggest that you share your concerns with the nursing supervisor so that supervisor can better match you with a nurse to meet your care expectations going forward. Though be prepared for the supervisor to ask you to give the nurse another chance. You do not have to do so, but be prepared for the agency to insist you do. You as a patient never have to submit to allowing a provider into your home for any reason.

Now this being said, might I suggest that if you haven’t talked to the nurse and expressed your concern that you might do so if you feel comfortable. You could also have your family member speak on your behalf. I get it, and I too have a list of nurses that my homecare is never to send back. And I’ve gone straight to the supervisor and bypassed talking to the nurse that I didn’t feel safe with. Remember it’s your care, your life, and your home. You should feel safe with your home providers. (((Great Big Hugs))) and try not to worry about offending anyone over your safety and comfort with your care.

Yours Truly,

Smile E. Turtle

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Dear Smile E.

Are men with primary ciliary dyskinesia sterile?

Signed,

Wanting to be a Father

Dear Wanting to be a Father,

It was once thought that all males with PCD were sterile. With advances in research and the scientific understanding of ciliary this has thankfully been proven to be false. Hundreds of medical professionals still counsel male PCD patients and there families that their will be sterility due to PCD. Unfortunately theses professionals may not be up to date on their latest journals and research. Which isn’t surprising, because the medical field is vast and not everyone specializes in primary ciliary dyskinesia. They instead rely on old data. Most medical books also propagate this myth.

The flagellum of the sperm is basically put together with the same protein building blocks as motile cilia. This means the sperm tail doesn’t move adequately or at all which them doesn’t allow the sperm to do it’s job of swimming. Advances in fertility treatments have enabled doctors to use cytoplasmic injection to insert the sperm into the egg and then put it back into the female’s uterus via IVF. This has enabled makes with PCD to have their own biological children.

Also it important to note that there are males who have spontaneously fathered biological children without the need for any medical intervention. This is something I urge you to discuss with your medical team, when you (the male patient) are ready to start family planning. You as the patient should never be made to explore this aspect of PCD until you are ready. However on that note, PCD itself should not be used as birth control method because spontaneous pregnancies where one partner has PCD is very real. If you want to avoid accidental pregnancy, contraceptives are just as crucial for a person with PCD as they are for a person without PCD.

Yours Truly,

Smile E. Turtle

Do you have a question for Smile E.? 

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Thank you for your consideration!