New- My Fiance has CF, I do not Carry the Gene

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dc9381

Guest
Hello,
When my love and I first met, we were working together. I opened with an inquiry about him having to take pills every meal. He was very honest, upfront about CF, and I have been nothing but supportive through the clinicals, the exercise, specialized diet, the treatments, coughing fits throughout the night, everything. I even set up his appointments and created caveats so that he would stay on top of his health and treatments(he hates his vest). None of which I mind in the least.

I have been on many forums, but I seem to only find information on both partners with CF or the female has CF. I am hoping to hear advice for those in my position. I have done the countless researching, the questions to the doctors, but they are all answers for the person with CF.

For example, IVF. Who has gone through it as a healthy female with a CF spouse? What are we to expect?
He has a persistent night time cough, doctors have given him meds, he had his sputum tested, we've used other home remedies, but in the end I have had many sleepless nights. Doctors/ other forum information have stated this is normal, and it does not wake him; but how can I have a peaceful nights' rest?
Any suggestions/ advice/ insight in general?

Thank you.
 
J

Jellybaby

New member
Hey,
I occasionally go through phases of coughing during the night and I could never find anything at all to help. It was my singing teacher who told me about the mad idea of putting Vicks vapo rub on my feet :p it sounds crazy but it really did work for me and hopefully it will for him too. Just get him to put some on the soles of his feet and put socks over them before he goes to bed. I have no idea how it's suppose to help but it has for me! :)
 
J

John O

Guest
Hi dc9381,

I am a male CFer and my wife and I went through IVF. It was a roller coaster ride for sure. But we were blessed with our miracle little girl. I commend you on keeping up with his treatments. How come he doesn't do it for you?

I have been now compliant for 365 days straight. I haven't missed a single treatment, vest, neb, or pill in a year. I am dedicated to my health for my wife and my daughter. They are my motivators.

I will leave you with a post from my blog about our IVF. I would love to chat with you about any questions you may have. Keep your head up!

http://livingmydreamswithcf.blogspot.com/p/ivf.html

John
 
D

Dhobs

Guest
My daughter sometimes has a persistent nighttime cough so I put a dry washcloth, folded in half, in her shirt on her chest. Works like a charm.
 
D

dc9381

Guest
Thank you all for the wonderful advice. I will definitely try the cough remedies.
John, he says he does it for me as well as our future children, but i think because his family would just do his treatments for him (put the vest on while he was waking for school, made him do the saline after school etc), I don't think he developed a personal routine. He has gotten better, but it is still not daily. I will definitely check out your blog, thank you so much for your input!
 
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Printer

Active member
dc9381:

How is it that you know that you "don't carry the gene"? How much testing has been done on you?

Bill
 
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dc9381

Guest
When we went to the fertility clinic, I did 2 tests. One for common genes and one for a ridiculous amount (I want to say 1000) all I remember was getting the notice that I was not a carrier of any gene.
 
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Printer

Active member
dc9381:

One may conclude that being tested for 1000 mutations is "a ridiculous amount" however there are more than 1800 known mutations. 1000 is only half of the test that is needed. Maybe you had a FULL CYSTIC FIBROSIS SEQUENCING (1800-2000 mutations) if not, I would suggest that it is in your best interest to have it done.

Bill
 
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BreathinSteven

Guest
Hi dc!

I'm glad John O chimed in and gave you some guidance regarding his experience... Based on some of the responses - I'm unsure what you were actually asking here! I noticed the mention of CF and carriers, and that you have shown not to be a carrier (likely for the most problematic mutations...) Has your fiancé's fertility been tested? A high percentage of CF males are sterile due to a disconnect / malformation in the vas deferens... I believe that, for some or many of them, sperm can be harvested via a surgical procedure... John O was apparently fertile, so that was not an issue...

But - I think that your question circled around getting a good night's sleep with your fiancé interrupting it with his regular coughing...

I'm unsure how you get around that beyond learning to tolerate it... The midnight hacking did not usually wake my wife - she slept like the dead! When I really started getting in crisis - on oxygen and having other issues - THEN she started sleeping very lightly... I could be sound asleep and if she heard my breathing rhythm change, she would immediately wake up and check on me... This went on for a good year before I was listed, and throughout the three years I waited... Unfortunately - she is now an incredibly light sleeper and any noise can likely wake her up...

You might look for advise from people with partners who are chronic, loud snorers... I know that some use earplugs - some sleep in another room... I'm not sure how to get around it... You mentioned that he had his sputum checked (I'm guessing cultured for infection) and tried other remedies - I think the problem is that part of the disease involves thick, irritating mucus and that situation is not currently, reliably changeable... Getting CPT / vest / whatever to clear out our lungs immediately before bed can help greatly, and give us a more restful sleep - but not always through the night. I don't know what your fiancé's PFTs are - but my gut feeling, based on your comments, is that he's in a reasonably advanced stage of cystic fibrosis and this is not likely to reduce, if anything, it will gradually increase...

It would be nice if you could find a support group or forum for CF spouses or significant others - I have to imagine there's one out there - I know there are a few blogs authored by CF spouses - if you locate one of them, many of those authors are very open to sharing their experiences or giving you their perspective and advice...

And you're so right that it's easy to find information about and guidance for us CFers - but not-so-much for our spouses or the people who support us... Of course - WE are the stars of this show, and for much of our lives, it's all about dealing with us, and what WE need to survive... But sometimes our spouses and parents and family and the people who love and support us seem forgotten - and they shouldn't be. For many of us CFers - YOU are the reason that we even bother wanting to survive. I hope you find something that helps...

Love, Steve
 
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mrsRLP920

Guest
Hi dc9381,

Was your genetic testing done by Ambry Genetics? They are the gold-standard lab for CF Testing. Here is a link to their site:

http://www.ambrygen.com/tests/cystic-fibrosis-testing

There are a few different panels they could run, but since your husband has CF, I would highly recommend the CF AMPLIFIED panel. According to their website, this is "the most comprehensive test available, detecting ~99% of mutations, including gross deletions & duplications."

I'm not sure what your race/ethnicity is, but my husband had this panel done (I have CF) because he is African American/Native American and we wanted to make sure we were tested for the mutations that are not as common.

You could always call them & see which one they recommend. Good luck to you!!
 
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Printer

Active member
mrsRLP920:

Ambry Genetics is no more the "gold standard" than several other highly qualified genetic laboratories that do FULL CYSTIC FIBROSIS SEQUENCING.

Bill
 
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