Love and Romance under the shadow of possible future ESRD

[Athena]

I've gotten myself in a terrible situation in my personal life. It is personal but on the other hand, it's probably a classic "pre-dialysis" trap. How do you break the news to someone in a new relationship that one may have to deal with ESRD in the future? Because I've been in denial about my CKD, I've never entertained the notion that I will reach end-stage until very recently. This man is someone I've had a rather tumultuous on-again off again relationship over the last 2 years. We've reunited a 3rd time and this time he wants to know whether I would like us to live together. It was a nice message to receive over Easter, but now it's time to disembark from the happy merry-go-round side of life and allow grim reality to step in. The grim reality of failing health, of course.

How does one even broach the subject? What if what I fear most won't even happen and I'll only scare him off needlessly?

This is a terrible situation! Has anyone else faced this type of situation before?

And now for my final famous last line - I hate this disease with a passion!

[UkrainianTracksuit]

Hi Athena,

You’re right; this question has been asked before on here and I am sure many times among patients.  You can search the forum to see the different comments if that should help.

There is no easy way to tell someone you consider a romantic prospect that you are chronically ill or specifically that you have CKD.  This is one of those moments in life where tip-toeing around the subject doesn’t help either.  All that really can be done is a frank talk and some education.  If you consider this person a potential caregiver, they must know that you have a condition.  Besides, how can you know this person can be a caregiver if they cannot handle the news of a condition?  I don’t know either of you and I surely don’t know your characters or personalities but if a person doesn’t think they can handle a disease, they have all the right to leave.  However, it’s better if they decide to break things off before each of you get too entangled in a relationship and there is more at stake to your health dealing with a bad break-up.  I truly believe that honesty is key and if the person is meant to stay around, they’ll be with you despite the news of CKD.

I won’t get into a history of torrid love affairs that went nowhere but in the case of my husband, I made sure he knew my health situation early on.  He knew I was Type 1 diabetic but the “I have kidney failure too!” talk was nerve-wracking, I admit.  I made sure the atmosphere was right and I told him point blank about ESRD.  I explained that I have enough cr*p in my life going on that I don’t need to deal with a stupid man that can’t handle it.  So, are you with me or not?  Gladly, he was.  I never expected him to be a caregiver and I still don’t expect that of him now.  I look at him like my partner and I think he appreciates that too.  Keep in mind, we’re young and I’m sure that will change over time when we both need more help.  Besides sometimes not seeing each other much due to conflicted schedules, I don't think ESRD is mentioned in our daily lives at all.  It's just a thing that's accepted, always around but doesn't define what I am to him.  (I hope... unless he sees a big sad kidney looking at him, you'll have to ask.)

I came prepared as well.  The National Kidney Foundation website has so many international brochures with basic information that I printed off every one in Russian and made my husband an entertaining folder.  That's the academic in me; I love handouts.

You have to do what you think is right and what you feel right in your own heart.  You will never know the outcome and if living together works if you don’t tell him sooner rather than later.  That’s just my two cents and you could tell me to fly a kite in a thunderstorm. 

[PaulBC]

I don't have any advice to offer and won't pretend, but I'm curious how much he already knows about your CKD. I think that will make a big difference in how you approach it.

[Athena]

Thank you UkrainianT for yet again, some really practical and insightful advice! It's difficult to make an announcement of ESRD when technically I am not there. My Nephs have been tiptoeing around the concept, without saying anything definitive, and that has only made me feel more justified in keeping it from the world. I've only told my family this year and I haven't explained exactly explained what kidney damage may actually lead to. I've been in denial myself, and still am to a large degree.

Paul, he does not know anything. Nor would anyone know anything unless I told them, as I live a normal life, eating normally (except with less salt, which he assumes is due to the diabetes), I exercise etc. He realises I have high BP for which I take BP meds but that doesn't necessarily mean I have kidney issues. CKD in pre-dialysis is a very silent, invisible disease. I look pretty healthy on the outside. Because I feel healthy and well, I naturally just want to be regarded as a healthy normal person.

It's like everything is hanging on a kind of nebulous floating balloon that resists being tied down to future reality. Like being a child in a way - carefree and oblivious to the future. And trying to just live in the present.

[UkrainianTracksuit]

Athena,

I understand being in denial a little bit.  I wasn't in denial because I grew up knowing my kidneys were damaged.  It was force fed information.  However, I didn't tell many people about it growing up or in the years I wasted my youth.  My parents never wanted to discuss dialysis because it was a difficult topic.  I did notice that being open with people was "freeing" in a sense.  It was a load off my back.  Yes, futures with CKD can be scary but there are many that face the burden with grace.  I think at this point in your health you can explain to people, "The future may have some serious complications but right now, I feel well and can feel well for awhile."

Hear me out a minute here.  I'm going to have a difficult time explaining this as I can't find the words but try to bear with me.

Let's try to look at it this way: You are Stage 3/Stage 4 so you have some time (wishing it is many years!) before dialysis and some major life changes.  Right now you feel well enough, right?  So, you can tell your potential man about CKD and explain at this point it is impaired kidney function.  However, you still feel decent and able to do many things.  If he decides to continue towards a long-term relationship, he will have had adequate time not only to see a) you're still someone he wants to be with b) learn about kidneys in the process if he cares.  Perhaps, by the time you choose which renal replacement therapy best suits you, he will care/love you that he will stick by you.  Yes, it is very much true that telling someone about CKD (even in the early stages) can scare someone off but it also allows for someone to accept the idea as well. 


If you tell this guy and he sticks around, now in the Stage 3/Stage 4 area is the best time to live life to the fullest while you have some time of "calm sailing".  Life continues after dialysis or transplantation but now is the time when there are a wee bit more carefree health-care wise.

Don't let this stupid disease stop you from love.  Kidney disease will always be at the back of your mind but remember, you are so much more than a disease.  It's difficult but we have to remind ourselves of that.  Sometimes, we feel less "human" and need love to remind us about the eccentricities of the human condition.

[Simon Dog]

Nephs don't do their patients a service when they tiptoe around the subject.   As soon as my neph got the biopsy result back (FSGS), he knew it was a near certainty I would need D unless something else claimed my life first.   Even so, he waited years until he had "the talk" with me, and then, it was only because he was retiring and catching up with all the "talks" he needed to have before he transferred patients.  When he finally spoke to me, it was anticlimatic to the point where my only reaction was "I figured that our years ago; I was wondering when you were going to get around to bringing it up".

I'd be more concerned about getting into a committed situation with someone who has been on/off with multiple breakups reunions.  That sounds like more of a problem (relationship wise) than ESRD.

You will know if he is the right one of he responds with "my blood type is....".

[justagirl2325]

I've been with my husband 6.5 years now.  He's been T1 diabetic since he was very young.  I didn't know he was sick when I met him but by the time we were serious I knew he was very sick.  You might think you're hiding your illness but you might not be hiding it as well as you think.  I can remember having the discussion with my mother and telling her that he was very ill and wondering how that would affect my life. Her advice was that we don't choose who we love.  And I believe that's true.  So I entered in knowing that I would eventually be his caregiver.

This may sound terrible but frankly, I didn't think he'd make it to the dialysis stage....I always thought a heart attack would do him in first (he had BP's over 200/130 all the time and has had two heart attacks already). 

I am very glad he did.

His dialysis is/was terrifying for me at first, now not so much.   

[Athena]

I've been with my husband 6.5 years now.  He's been T1 diabetic since he was very young.  I didn't know he was sick when I met him but by the time we were serious I knew he was very sick.  You might think you're hiding your illness but you might not be hiding it as well as you think.

Hi Justagirl. Your experience with your husband is very interesting and relevant to me because he is also a T1. It sounds to me like he progressed quite quickly after you two had met if he didn't come across as sick initially but then it became very obvious. Wow, you certainly had to battle with that question, didn't you?

My BF has said that I look quite healthy a number of times (which btw, other friends have also said to me). I still don't think that my kidney disease is at this stage obvious to anyone. My family certainly didn't suspect when I told them.

It's terrible even talking about looking healthy when the prognosis is what it is ... But it is good to hang onto whatever good things there is to rejoice in the present time.

I know that I will have to have a serious talk with him soon ... But I want to hang onto the good things that exist right now for a little longer.

I know that I shouldn't entangle anyone when my future is so bleak ... But I want so much to experience love and have companionship while I am alive and well

And on and on it goes, the ludicrous dilemmas that this terrible disease places on us. 

[Athena]

I can remember having the discussion with my mother and telling her that he was very ill and wondering how that would affect my life. Her advice was that we don't choose who we love.  And I believe that's true.  So I entered in knowing that I would eventually be his caregiver.

Justagirl, I also believe that is true. However it has to be noted being a female stands in my way considerably than if I were a male CKD sufferer because females are traditionally and more typically the caregivers/nurturers. Finding a loving caregiver is just a less likely proposition for me.

[Athena]

Nephs don't do their patients a service when they tiptoe around the subject.   As soon as my neph got the biopsy result back (FSGS), he knew it was a near certainty I would need D unless something else claimed my life first.   Even so, he waited years until he had "the talk" with me, and then, it was only because he was retiring and catching up with all the "talks" he needed to have before he transferred patients.  When he finally spoke to me, it was anticlimatic to the point where my only reaction was "I figured that our years ago; I was wondering when you were going to get around to bringing it up".

I'd be more concerned about getting into a committed situation with someone who has been on/off with multiple breakups reunions.  That sounds like more of a problem (relationship wise) than ESRD.

You will know if he is the right one of he responds with "my blood type is....".

Well one of my Nephs did actually say to me 'that nothing in medicine is guaranteed' when I asked him whether it is certain that I will end up on dialysis. So I guess that means that I have reason to hope? My other Neph has said on the other hand, that transplantation needs to be discussed soon. So I am confused and I guess that is all I can hope to be for the time being 

Thanks for your advice Simon. It's always good to get advice from a male's perspective.

[kristina]

Hello Athena,
This is a difficult one and it involves choosing the right moment to talk “about matters”, when “things are getting serious”.
As a rule I usually don’t mention too much about my health-situation to anyone outside my medical team and/or my husband,
because I have always considered my health-situation as something rather private.
When my husband and I became serious, we sat down one day
and talked about everything that was to be known about my health situation etc.
and the important fact that doctors advised me, not to have any children
because they could (would) be mentally and/or physically handicapped
due to my suffering from a chronic kidney disease (Chronic Proliferative Glomerulonephritis).
... In a serious relationship it is not only vital to trust each other but also to be completely honest with each other.
It is my opinion that these considerations are most important to develop a trusting, lasting relationship
and “walk with each other” a long way forward.
Good luck from Kristina.

[cassandra]

Well, I told my now hubby, the 3' day we met (when he moved in.....) that I had my dad's kidney, that on average a transplant lasts 10 years ('80's) and besides the infection spells I'll spent in hosp being very sick, I'm going to be pretty ill, and mainly busy with my self when I'm back on D. I've had over a hundred ops, so don't look surprised or something. Anyway, let's have a drink now.
Nearly 30 yrs later we are still married, but the hosp times, D, and general weakness (mental and Physical) are still hard on him.

Some men are actually brilliant, not perfect, but who is?

Good luck Athena,
Love, Cas

[Athena]

Thanks Kristina. I also think that one's medical situation is extremely private. I have for the 3 decades I've had T1 diabetes have not revealed it to anyone except my close relatives. As such as I feel equally guarded about my kidney problem now. I do think that when things get more serious then it will be time to tell. It will be a tough conversation mainly because I don't really know what I'm facing or how long it will take before serious illness sets in. It's like trying to see into a crystal ball.

[Athena]

Well, I told my now hubby, the 3' day we met (when he moved in.....) that I had my dad's kidney, that on average a transplant lasts 10 years ('80's) and besides the infection spells I'll spent in hosp being very sick, I'm going to be pretty ill, and mainly busy with my self when I'm back on D. I've had over a hundred ops, so don't look surprised or something. Anyway, let's have a drink now.
Nearly 30 yrs later we are still married, but the hosp times, D, and general weakness (mental and Physical) are still hard on him.

Some men are actually brilliant, not perfect, but who is?

Good luck Athena,
Love, Cas

Cas, thank you for your well wishes. You are so lucky to have found a stayer. Yes, no one is perfect but a stayer is pretty close, as it's not easy dealing with severe illness. I wish you the best in the future

[kristina]

Well, I told my now hubby, the 3' day we met (when he moved in.....) that I had my dad's kidney, that on average a transplant lasts 10 years ('80's) and besides the infection spells I'll spent in hosp being very sick, I'm going to be pretty ill, and mainly busy with my self when I'm back on D. I've had over a hundred ops, so don't look surprised or something. Anyway, let's have a drink now.
Nearly 30 yrs later we are still married, but the hosp times, D, and general weakness (mental and Physical) are still hard on him.

Some men are actually brilliant, not perfect, but who is?

Good luck Athena,
Love, Cas

Hello cassandra, the 80's seem to have been a lucky time for us ...
... my husband and I also met in the early 80's and have been together ever since
and were married in Gretna Green...
Best wishes from Kristina.

[Athena]

Well it seems that in the 21st century, things on the relationship front seems rather perilous and fragile at the best of times. The problem exists no more, he's gone and I didn't even get to tell him about the CKD. Living alone seems to be the natural destiny of some folks like me. I wouldn't normally comment on this but this now becomes yet another factor in my future medical situation to consider.

How does one survive D on their own I wonder? Seems to me like a most impossible situation. The renal social worker I have recently met has not expressed much interest in me until I become 'more advanced & closer to D". I couldn't actually ask her what she would do for someone like me, if I was in this situation ... Like most things with this disease, it seems better to not know 

[Deanne]

How does one survive D on their own I wonder? Seems to me like a most impossible situation. The renal social worker I have recently met has not expressed much interest in me until I become 'more advanced & closer to D". I couldn't actually ask her what she would do for someone like me, if I was in this situation ... Like most things with this disease, it seems better to not know 

Give yourself more credit! You sound very capable.

I'm single and don't have any interest in being paired. While I was only on dialysis for 6 months, I never questioned my ability to handle it for the long term. I own a home, work full-time, and have cats and dogs that need a lot of attention (think furry 2-year olds!). Many others on dialysis have the same lifestyle. Others have partners who walk out on them because they can't handle their spouse's medical issues. Those patients are suddenly put into the position where they need to find new ways to cope to with life in general and mourn the loss of a partner in addition to learning to live with kidney failure. I think they have it worse than those who have always experienced life as singles.

Granted, some people are sadly too ill to manage life on their own. It doesn't sound like you fit into this picture though.

[Michael Murphy]

I don't think you mad a mistake,  this is a intensely private thing having ESRF hang over up your head.  I never told any one till I told my wife when I had my fistula created.  As far as how one deals alone I drive my self to dialysis and my wife has never been to the center.  All but one of the patients around me are single.  And all are doing well the only advantage seems to be in having a spouse that check on your eating habits to make sure you are compliant. One of the patients on the other side has to bring home hos blood work and if it's not ok his wife raises hell it keeps him on the straight and narrow.  I know for me if I was in love with someone Dialysis would not matter.  You ex boyfriend obviously was not the right one.  Who knows you might meet the perfect guy at dialysis.

[Simon Dog]

I never told any one till I told my wife when I had my fistula created.

I got in trouble when I was first married (or just befoer getting married, not sure which) when my wife found out I had a renal ultrasound without telling her.   She knew about my elevated creatinine (1.4 then ... the good old days) and the fact I had an issue and was not amused at being kept out of the loop.

And all are doing well the only advantage seems to be in having a spouse that check on your eating habits to make sure you are compliant.

Another advantage is that most clinics require a care partner if you want to do home hemo, although I hear that the famous Bil Peckham once listed his dog.  Kind of tough having a care partner without opposable thumbs.

[Athena]

How does one survive D on their own I wonder? Seems to me like a most impossible situation. The renal social worker I have recently met has not expressed much interest in me until I become 'more advanced & closer to D". I couldn't actually ask her what she would do for someone like me, if I was in this situation ... Like most things with this disease, it seems better to not know 

Give yourself more credit! You sound very capable.

I'm single and don't have any interest in being paired. While I was only on dialysis for 6 months, I never questioned my ability to handle it for the long term. I own a home, work full-time, and have cats and dogs that need a lot of attention (think furry 2-year olds!). Many others on dialysis have the same lifestyle. Others have partners who walk out on them because they can't handle their spouse's medical issues. Those patients are suddenly put into the position where they need to find new ways to cope to with life in general and mourn the loss of a partner in addition to learning to live with kidney failure. I think they have it worse than those who have always experienced life as singles.

Granted, some people are sadly too ill to manage life on their own. It doesn't sound like you fit into this picture though.

Thank you Deanne for your reply. You really have put it in so much better perspective. Yes, I think anyone being dumped in their greatest hour of need would be probably the worst thing that can happen to anybody. And this apparently does happen quite a lot, according to a friend of mine who has an enormously wide circle of friends & acquaintances. It would be such a devastating crushing blow (The only saving grace of course would be if someone secretly wanted their partner gone!). Wow, I admire you for having both cats and dogs along with working full-time - that sure would be quite a lot of responsibility to have to handle.

[casper2636]

Unfortunately (probably fortunately looking back now) The demise of my 16 year relationship was ESRD. My boyfriend had had a fiance that died of cancer at 31. She never made it to their wedding. When my ESRD happened, it was quick (don't know how long I went undiagnosed for so long...had not a clue!). He thought that I was going to "up and die" on him, too. Just couldn't handle it. So, we physically split, but we still talk on the phone, text, email, and chat 2-3 times a day. He just can't physically be with me. I can't figure that one out. But, I'm glad I know where he stands. For all it's worth, he can go pound sand! I am very frugal with my heart, and that one hurt. I think  "if you never hold out your hand, you don't give some one the chance to grab it." My problem is that I feel like "damaged goods" and so Unattractive that I don't even want to try.

I had a Tech. who met and married her patient on dialysis. You never know where love lays hidden. Do it justice by being forward and honest and knowing where your ground is.

[Athena]

Unfortunately (probably fortunately looking back now) The demise of my 16 year relationship was ESRD. My boyfriend had had a fiance that died of cancer at 31. She never made it to their wedding. When my ESRD happened, it was quick (don't know how long I went undiagnosed for so long...had not a clue!). He thought that I was going to "up and die" on him, too. Just couldn't handle it. So, we physically split, but we still talk on the phone, text, email, and chat 2-3 times a day. He just can't physically be with me. I can't figure that one out. But, I'm glad I know where he stands. For all it's worth, he can go pound sand! I am very frugal with my heart, and that one hurt. I think  "if you never hold out your hand, you don't give some one the chance to grab it." My problem is that I feel like "damaged goods" and so Unattractive that I don't even want to try.

I had a Tech. who met and married her patient on dialysis. You never know where love lays hidden. Do it justice by being forward and honest and knowing where your ground is.

Casper, your post really struck a chord in me in view of my recent experience. I know exactly what you mean about being frugal with the heart. The likelihood of being hurt is just too great in my opinion when we are already vulnerable due to a serious chronic condition. If we were of the male gender, there might be a slightly better chance of finding a true companion who'd want to care for us. But as a female with a serious chronic condition, I think there is next to nil hope. I am most certainly 'damaged goods' and that was the issue in the past relationship (imagine if I had reached ESRD while he was pretending to care!).

However without a doubt, just having hope and keeping the hope alive is probably the best thing we can do for ourselves. The focus on getting through each day in the most joyful and peaceful way feels like a do or die mission each day!

[Athena]

Unfortunately (probably fortunately looking back now) The demise of my 16 year relationship was ESRD. My boyfriend had had a fiance that died of cancer at 31. She never made it to their wedding. When my ESRD happened, it was quick (don't know how long I went undiagnosed for so long...had not a clue!). He thought that I was going to "up and die" on him, too. Just couldn't handle it. So, we physically split, but we still talk on the phone, text, email, and chat 2-3 times a day. He just can't physically be with me. I can't figure that one out. But, I'm glad I know where he stands. For all it's worth, he can go pound sand! I am very frugal with my heart, and that one hurt. I think  "if you never hold out your hand, you don't give some one the chance to grab it." My problem is that I feel like "damaged goods" and so Unattractive that I don't even want to try.

I had a Tech. who met and married her patient on dialysis. You never know where love lays hidden. Do it justice by being forward and honest and knowing where your ground is.

Casper, your post really struck a chord in me in view of my recent experience. I know exactly what you mean about being frugal with the heart. The likelihood of being hurt is just too great in my opinion when we are already vulnerable due to a serious chronic condition. If we were of the male gender, there might be a slightly better chance of finding a true companion who'd want to care for us. But as a female with a serious chronic condition, I think there is next to nil hope. I am most certainly 'damaged goods' and that was the issue in the past relationship (imagine if I had reached ESRD while he was pretending to care!).

However without a doubt, just having hope and keeping the hope alive is probably the best thing we can do for ourselves. The focus on getting through each day in the most joyful and peaceful way feels like a do or die mission!