Being Married to a Post-Transplant CFer... What's it Like?

[ajmc87]

Hi all,

I've been dating my girlfriend (31, CF) for almost a year now and I am very serious about marrying her. However, just over two weeks ago she got the call for her transplant and has been recovering from the surgery at the hospital ever since. The doctors tell her that there are a lot of compromises that have to be made in order to keep her and her new lungs safe, such as wearing a respirator, washing her hands a lot, avoiding people who are sniffling or sick, etc.

I'd like to ask what dating and marriage look like after a transplant.

• What have you dating/married couples had to change in order to accommodate this new lifestyle?
• What kind of boundaries and precautions need to be in place between the two of you to keep your CF partner safe?
• Was it challenging to adapt at first?

Any and all advice helps!

Thanks, Alex

 

[beautifulsoul]

First of all, I'm very happy that she received her lungs!! Also happy for you and her family of course too Prayers to her donor family (L)

I praise you for standing by her through all of this. It takes someone special to be able to do that especially for the short time you've been dating. Anyway, I'm post transplant but not in the same dating time frame that you're in. I didn't meet my boyfriend (of 2.5 years) until 3 years after my transplant. I can't be much help with the before/after. But, I wanted to mention that even if I was dating him before my transplant I/we honestly probably wouldn't have changed too much.

The clinic should give you a book (it's probably HUGE, I know) it will give you info as how to go about cleaning things, hand washing, vaccines, pets, food. They should also TELL you the most important things that you should know in the beginning.

From my personal experience so far I've made sure we both wash our hands when coming home from shopping, dates, running errands, arriving home from work etc.. I also buy a squirt bottle of Purrell for the kitchen counter for easy access and extra protection as my transplant center encouraged this.

All centers are pretty strict about the Flu vaccine every year. I get a letter in the mail. All family members or people living in the household are required to get it unless for some reason they can't (example: allergic to egg) If someone does get sick like, a cold, I would hold off the kissing and any direct contact I don't go as far as sleeping in a different room though. I still sleep in the same bed.

The "rule" book says not to share silverware (we don't anyways) or drink for the same cup. We occasionally take a sip or two from each others drinks and nothing has ever happened to me.

An important thing for her to remember is to take her medicine. My boyfriend reminds me every now and then but most of time I have already taken it myself.

Other than that, I live normally with my boyfriend just like any other couple does. I don't put limits to anything unless it's due to sickness. I'm sure it's a bit overwhelming for you right now but the feeling will pass eventually! Feel free to private message me for any other info.

God Bless and enjoy your life together!

hugs to you

 

[nocode]

This is a great question and Amber - thanks for responding! I hope more people will contribute.

 

[erikthered]

Alex

I have been married for 23 years my wife has cf and is post tx 14 years in April. I obviously knew my wife pre tx as well and all the cf related problems that can bring.
post tx to try and answer your queries
The only thing that has changed apart from different medication , no oxygen around the house 3 x daily physio to name a few are all for the better.
We can go out anywhere , not been restricted to where we can go or see within reason. My wife had a list of all the things places she wanted to do / go after her tx from simple things to places abroad around Europe.
We take care with cleanliness and try to avoid people with coughs , colds etc . Friends don't come round if they are unwell or we don't visit them.
If me or my son are unwell we try to keep a low profile although we live in the same house. we all get annual flu jab.
I expect everyone will be different and may get caught up in the whole post tx precautions.
as post above we don't share drinks , keep home tidy and surfaces cleaned and pots washed not lying around.
Looking back it was more challenging pre tx coping with all issues and health problems than after tx , My wife pretty much does anything she wants since her tx , I could tell you so many things we have done together as a family in the past 14 years that wouldn't have been possible let alone think about before the transplant.
Hope this helps Erik

 

[ajmc87]

Wow, thank you all so much for sharing your stories with me! Reading them has been a huge encouragement and blessing. I am looking forward to this new, more active lifestyle and the freedom that comes with it.