Post # 1
My Fiance was diagnosed with end stage renal failure march 2014, it has been the hardest 15 months of our lives so far, I have an 8 year old son from a previous relationship, we both work Fiance works reduced hours due to his condition. His condition affects him more in the evenings when he struggles with fatigue so I do all the manual work, all the house work and setting up of his machine and so on. We are very much looking forward to being married and the wedding planning doesn’t bother me, it is so different from the stresses and strains of a normal day that it is something I am looking forward to getting my teeth into.
Fiance is on the transplant list but we don’t know when this may happen. He is happy to get married pre-transplant but knows this brings issues with dialysis. He is on 24 hour dialysis which can’t be missed at any point, the day dialysis is manual (pd) and he manages well during the day. Evenings are harder for him and in therory our wedding would have to end around 10pm. Unless we can obtain permission from his proffessor to use a different regime, meaning no machine but it is complicated with his kidneys being so poorly only 1% function. Post transplant would be less complicated but unplannable at this point.
The other option would be to switch to hemo-dialysis for a few months prior meaning no restrictions and he already has a vistular fitted so no problem there. This is only three 4 hour sessions per week, but not really the route I want to go down. Hemo is a last resort once PD fails, but Fiance suggested it 🙁
We are hoping to obtain a marriage licence some time this year so that we can marry quickly if needs be, Fiance has told me if he gets worse he would like me to be his wife…. just in case! IYKWIM
What would you do in my position? Anyone out there dealing with a simular situation?
Should we just plan as normal and end the day early or let the guest carry on without us? knowing our situation I’m sure no one would see this as rude.
Post # 2
angiedoll: Which option would be the best for your FI? If keeping him on the same, known regimen is the best option for him, then I’d suggest sticking with what you know works for him, rather than try something different.
You and your Fiance will be in my prayers. *hugs*
Post # 3
- Wedding: May 2014 - Madison, WI
I would definitely discuss all medical possibilities with him and his physician and do what’s best for his health.
A friend of mine is termanially ill and never knows on any given day if it will be a good day or a day where she ends up in the hospital. She planned her wedding just hoping for the best. The day of her bridal shower she was an hour late because her feeding/medication tube broke. The day of her wedding though things (thankfully) went as well as possible. She didn’t get out on the dance floor after their first dance, and didn’t really eat anything but she was so happy to have had her wedding and even if for most of it she just sat with her new husband watching everyone else celebrate, that was just fine.
I think for the most part you just keep moving forward and doing what feels right for the two of you. Another friend of mine married her Darling Husband while he was batteling Cystic Firbosis and on the transplant list, their wedding was also wonderful and they kept moving forward from there. They bought their first home together, got a puppy, all while his health declined and they didn’t really know what the future would hold. Thankfully two years ago now, he recieved a transplant and is doing great.
I cannot imagine how hard it is on both of you not knowing for sure how things will work out. I hope it all works out for the best.
Post # 4
so sorry you are going through this.
i don’t have any advice. my friend went to a wedding last summer, where the bride got really sick right before the ceremony. she was able to get ready, made it through the ceremony. did her first dance, then quietly left the reception for the hospital. turned out her apendix burst and she needed emergency surgery.
the party did go on without her. the didn’t make a big deal of leaving, just left.
i would say, if you and FI need to leave the party at any point, just do it.
or have a smaller, shorter reception.
Post # 5
thank you ladies, I think I will approach our home therapy nurse, I am sure this will have cropped up in the past. I think a shorter reception is the way forward, most of my family have young children anyway. I suppose Fiance exchanges between fluids are nicely timed anyway being 8am, 6pm and 10pm. So a 3-4 hour reception should be fine.
We are planning to do a lot of DIY for the wedding, if something goes wrong then it can be saved for a different date. I even suggested putting a deposit down on two seperate dates, but I will need to do some research into that. lots to think about … thank you again ladies 🙂
Post # 6
I have chronic health problems, but luckily I was feeling quite good for the wedding. I’ve been to weddings before where the bride & groom took off early. Maybe plan a fun send off that can be done whenever, so that it still feels like a party when you two need to take off.
Post # 7
angiedoll: what about doing like a noon wedding? that way ot would be in between and it’s easier for him to manage during the day. just a thought. good luck!
Post # 8
My Darling Husband is very ill with an increasingly life-threatening condition. In fact his options have shrunk down to “very high risk and radical surgery” or “you’ve got a very few months left”. We married over a year ago when he was much more stable. I’m very glad we aren’t trying to plan a wedding round his very much more compromised health today. He would have hated to spend the day as a patient rather than a man sharing a wonderful wedding with the people who mean most to us.
So my advice would be to marry pre-transplant if that’s possible. Your Fiance appears to be on a stable, if demanding dialysis regime but the stability of it means it’ll be a lot easier to plan your day around it. If you wait until after his transplant you have the uncertainty of setting a date because of the unpredictability of discovering when a suitable kidney might become available and you also won’t know how quickly he’ll recover from the operation.
I wouldn’t worry about having a reception that goes late into the night or doesn’t fit the dialysis pattern without considering radical alterations to his treatment. Instead, get married during the day and have a reception straight afterwards. 3-4 hours is plenty long enough!
I hope all goes well for you. x
Post # 9
I work with the elderly so I only have experience with Hemo- so I’m sorry if this is invasive in any way (just ignore me if so) is there any benefit treatment wise to switching?
if not I would honestly say don’t add the stress. would it be possible with the timings of the dailies to have an earlier wedding so that you could have more time of the day? If you have a noon ceremony going til 10p is a pretty long day. Also is he currently capable to sustain through a busy 10-12 hour period? Weddings aren’t exactly slow and relaxing, would a shorter day make life easier?
I’m so sorry that you and your Fiance are going through this, and you are so strong. Honestly if I were in your shoes I would go get the marriage license and get married – this is the man you want to be your husband, why leave the chance of it not happening you know? Then you can have any type of wedding/reception you want, be it now or after a transplant.
I hope everything goes well and am sending you both good vibes
Post # 10
angiedoll: Our wedding reception is going to end at 10pm since we’re getting married on Sunday, if that helps. I don’t think anyone would be upset if you had an earlier time table.
I think you should do whatever is best for FI’s health. Having a marriage license around is a great idea too. Whatever happens, if you needed to get married early, you could definitely still get weddinged later and your friends and family would understand and love it! They talk about getting weddinged a lot on offbeat bride, it’s a great website to check out. They also talk about getting married when you have a chronic illness or different ability status. I highly recommend it!
Post # 11
nawella: thank you, I will have a look, I’ve spoken to some family members today and the majority have said they are in favour for it ending early as they don’t feel obliged to stay later with young children, the only one who seemed not to be up for the idea said he’ll carry on celebrating for us in a local pub/bar (his way of saying he supports us)
Post # 12
liadee: No I don’t believe there is any benefit towards his treatment in switching, I have outright shot that idea down, he chose pd over hemo, he hates the idea of hemo so it is out of the question unless absolutely neccersary for his health.
We have spoken about being married before the wedding, but Fi is against this he is a traditional man and doesn’t want to do this, unless it’s an absolute must. We are going over options for how the day is set out at the minute. Fiance says he will need a break during the day, and a cocktail hour may be something to look into here. or only taking up half a day, but that still causes issues. Fi did put one suggestion forward that might work and that is to switch things around. To have a big ceremony with lots invited in the afternoon and then take close family out for a sit down meal. We are very close to my family and they will take up at least 85% of the guest list so i think a get together and a brainstorming session is needed.
Post # 13
Steampunkbride: thank you for your reply, I hope things are as well as they can be for you and your husband. Fi does well during the day, however he gets worse throughout the day. he becomes very tired and uncomfortable in the evenings.
The only way we can be more sure of a transplant date is if my offer to donate is successful, however it is not a straight forward and easy process. However that will mean waiting for us both to recover.
thank you for your advice 🙂
Post # 14
Hi I’ve had two friends who have bith gone through kidney failure and have both gotten kidney transplants. I’ve seen the struggles they faced so I have some idea of what you guys are going through. If I was you I wouldn’t change the dialysis system that is already set up for you I would just plan the wedding and reception around the dialysis. Everyone would understand the reception finishing at an earlier time and your future husband might be really tired by this time anyway and it might be a good way to make sure he gets the rest he needs. I prya and hope that a kidney donation comes up for your Fiance really soon and I hope he is feeling well at this time and for your special day.