Boyfriend with Kidney Disease - Need advice

[rocketgirl]

Hi Everyone,
I posted on the intro section that I am here because my boyfriend is a type 1 diabetic and stage 4 Kidney Disease (GFR 23) We are both 35 years old.  This relationship is fairly new, we have only been together about 2 months... and I care about him a lot, he is just the most wonderful kind man I have ever met...I find myself extremely confused and scared though about the future and he seems to move very fast in relationships.  I am an avid outdoors girl...runner, biker, hiker,  I love to travel and I always have a trip planned.  There is also sexual problems as well....(and thats hard for me) because his health doesnt seem to allow it to happen... He seems non compliant with his diabetes....NEVER have I seen him check his blood sugar, he does take his meds, he just knows his body he says....has high blood pressure, sugar highs and lows, chronic nausea, diabetic retinopathy...all the stuff that comes a long with diabetes and hypertension and kidney failure I guess.. Now that the newness is wearing off I guess I am starting to panic about what the future will look like for me in a relationship with him.. he is on the kidney transplant list.  I dont mean to sound awful but lately I have started to feel down because I am scared my needs will never be met and I will be unhappy and I dont want to hurt him at all. I love being there for him and he says he is healthier and has learned more than ever since he met me....he is truly a wonderful person....I just had a dream of a partner that would be able to do the things with me that I love (or at least some).. and its been hard. I am worried it is just going to get harder and it is so new and we are soooo different.  We come from extremely different backgrounds but get a long so well....I just dont know what to do... I have expressed some concern to him...I just feel so selfish.  I welcome all thoughts, please.

[KarenInWA]

I don't have much advice to offer, but, I once dated a type 1 diabetic who also refused to check his blood sugar. I am surprised he is on the list when he doesn't do this one very important thing. The reason for his kidneys failing has to do with his diabetes, and if he doesn't take care of that like he should, how can anyone insure his transplanted kidney will last very long? Is he on the list for a kidney/pancreas transplant? That would make more sense. Usually, one isn't listed until their GFR gets below 20, but it may be different for diabetics.

It is imperative that he take care of himself the way he should. Once he has a transplant, his body will have a lot of changes, so he can't claim to "know" his body at that point! Also, kidney failure in itself wreaks havoc on a body, and things change as kidney function goes away. He really needs to step up to the plate and take care of himself!

Just my 2 cents. I don't think you're selfish for bringing these things up. I think he is selfish if he doesn't take care of himself properly.

KarenInWA

[rocketgirl]

Thanks Karen for the reply... He has agreed to start checking his blood sugar, but he really needs a big kick in the butt to do it... I think I will have to go buy the test strips and check it for him.  He just doesnt see the need in knowing the numbers because his hgb A1C was better this time so he thinks he is doing the right thing, although he battles low blood sugar all the time... highs and lows.  He was very non compliant with his diabetes in his 20s which is yes why he has kidney failure.  So not sure how or why he is already on transplant list but he does send blood every month for the donor match thing...so I know hes on it, and I saw his lab work results last week.  Anyway... I work as a nurse so I am always caretaking at work and now I spend time worrying over him. helping him get around at night. getting sugar when his blood sugar drops... being supportive when he feels like throwing up in the mornings...Like I said he is a wonderful great guy.. he has the best heart! I feel it.  I feel truly blessed to have him in my life but just tired and scared about what my future looks like. I have active kids from my previous marriage... I always wanted a partner that could help with them and be a part of our busy activities... like I said...I am crazy hooked on adrenaline pumping activities... He has a difficult time even walking  due to muscle pain and vision impairment.....just so hard to know what the right thing to do is... I want to be fair to both of us. Thanks for taking time to reply...I appreciate it!

[cattlekid]

I have some “tough love” for you…I’m sorry to sound blunt, but you really need to examine whether this relationship is something that you are going to be able to deal with for the long haul.  In your posts, you have mentioned that you are an active person and that being out and about doing active things is a big part of your life.  You will have to reconcile yourself to the fact that your new boyfriend will probably never be able to accompany you on these journeys in the way that you envision.  If this is something that you are willing to compromise on WITHOUT blaming him or making him feel inadequate, then go for it.  Otherwise, you may just want to part ways now before you start to resent him for holding you back from things that are important to you.

Secondly, I feel that you need to stop checking his blood sugar for him.  He is an adult human and should be able to chart his own path.  Again, if you keep doing everything for him, you will probably come to resent him and he will start thinking of you as his parent rather than a life partner. 

I say both of these things with the true hope that you will be able to work things out between the two of you.  I just want to make sure that you are understanding the other side of the coin from his perspective as well. 

[adairpete]

Hi rocketgirl, I think you are very wise to be thinking and asking yourself these questions in your new relationship.  You'd be asking yourself the "long-haul" question with any new relationship, but your boyfriend's medical complications make it complicated to end a relationship over a physical ailment especially when otherwise you're mostly compatible.  However, if you want my honest opinion, if I were you I would end it now before you or him become more involved.  Several things leap out at me to draw that conclusion.  One, is the imcompatible libido.  At two months in, it sounds like it's already an issue and it might not improve for him, in fact, it may get worse.  It may not seem like a big thing, but given enough time any "little" issue becomes a BIG issue.  I keep learning this lesson over and over again!  The second is his non-compliance with keeping track of his blood sugar.  If he has daily issues with blood sugar lows and highs then it is total bullshit that he "knows his body" and monitors it telepathically.  I would bet, too, that the transplant center is unaware of his lax approach with his blood sugar as that would throw up a huge red flag to them.  Every transplant center is very picky when it comes to compliance of medical treatments, they want to know the kidney (or whatever organ) is going to a good home to someone who will take care of it.  Also, his medical issues (vision, neuropathy, etc) is only going to worsen with his swinging blood sugar.  A new kidney and pancreas isn't going to fix the damage he's inflicting by ignoring his blood sugar.  However, the most important reason is the one you stated yourself.  You want a partner that "would be able to do the things with me that I love." I know from personal experience that you can really connect with someone but know that it won't work out in the long run.  That doesn't mean you don't care for him.  However, in the long run, you will be unhappy and resentful that you won't be able to do the things you enjoy and he'll be unhappy and resentful, too. 
That's my 2 cents and I truly hope that whatever path you decide to take you are happy at the end of it...

[drgirlfriend]

Hey rocketgirl! I understand some of your problems quite well. My boyfriend is the one with esrd. We were blindsided by that diagnosis February of last year. He started pd last August. Fortunately he only has the kidney disease to deal with and is very compliant. Another difference between my story and yours is I chose this relationship before the diagnosis. I didn't have the space for forethought. For me it was "Ok. What do we have to do?" and we just kept going. There has been anger and resentment and love, sometimes all mixed together. But back at the beginning of our relationship, I knew there were things about him that I had to be patient about and personality clashes that we needed to work on. See, he is 19 years younger than I am and, frankly, his mother did a piss-poor job of raising him. So there has been a lot of whining, tantrums and avoidance in ALL aspects of our lives from the beginning. I thought he would finish growing up and we'd get on with out lives. A wise person on this very board pointed out that there is no new bad behavior in the face of adversity/chronic illness, just WAY more of the same shit. So what I'm getting at, and can't believe I'm actually saying, is that if I had known he was going to come up against something this big before he figured out how to be fully responsible for himself, I would not be here. I love to eat and cook new foods and go out and travel and be spontaneous. Can't do much of that anymore unless it's for myself or by myself. It is very hard to be in my late 40's and doing less of what makes me happy, not more. Don't get yourself in a position to resent him and question where the years have gone/are going. Most of what you're saying seems to indicate it's time to end this. I'm sorry.

[looneytunes]

Rocketgirl, I read your post(s) several times and was not sure I should jump into this.  But to "chicken out" when I think you are in a real dilema and sincerely wanting input from others would be less than I would want from my IHD family, so here goes...

It sounds to me like you have already realized the resentments that may build if this relationship continues.  He is not able to live the active lifestyle that you are already accustomed to and that most likely will not change.  He may also require more care in the future than he does now and that could cause you to feel guilty when you pursue your own interests that he can not participate in.  The sexual issues are already a problem.  You have active children that are entitled to your full attention.   His failure to take care of himself has been a lifelong habit and you can not and IMO should not step in and do it for him.  That also can cause resentments. 

Is there any chance you can end the romantic part of the relationship and remain his friend?  Still willing to help him out and be involved in his life but free to pursue your own dreams, interests and maybe the type of relationship you could be happier in?  After only 2 months, it might be much kinder to end it now and remain friends than to allow all of the hurt that resentment causes to get in the way of the real connection you two seem to have. 

You will be in my thoughts and prayers.   

[Chris]

Surprised he didn't go for a kidney and pancreas transplant.
If he continues to be on the path he takes to take care of his diabetes, that kidney will not last. Knowing body is a bad excuse to control diabetes. If he knew his boody so well and controlled it so well with that knowledge, he wouldn't be having high and low problems (or as much). If he knows how to carbohydrate count, an insulin pump maybe a better choice, but again blood sugar testing is involved. I use to hate blood sugar testing, but the needles these days are a lot better then the ones when they first came out in the 80's when I was a kid.
 
It may get worse for a short time or a long time depending how he takes to dialysis, but everyone is different. Know your limit is all I can say.
 
Is he active at all, bike riding, walkking, etc.?

[Aarti]

Hi Dear,

I am in similar situation.I have juvenile diabetic sister at stage5.She is 29.About to start dialysis soon.We are contemplating between PD and HD.

All the best to you.

[rocketgirl]

Thank you all so much for your imput.... this is very hard for me because I dont want to resent him in any way and even after just 2 months I find myself, maybe not resentful, but stressed a lot about how I am not able to do the things I love if we spend time together.  I am a single mom, work full time and many semesters including fall coming up, I attend school full time too... It makes it very hard to balance my free time... ultimately I have been spending it with him and not doing all the things I love.  I find my body just missing the intense exercise I am used to and get irritated that I am just sitting around watching tv instead even though I love spending time with him.  He has really been trying to increase his exercise because it is obvious to him that he has to try and keep up somewhat...after even small walk though he is very very sore... has trouble walking.  His vision problems cause him much difficulty even hiking little baby hikes..(we live in the mountains), he has stated he is getting healthier with me in his life, but I feel unhealthier... I just feel so darn shallow...but I just feel like if I wasn't just so much of the person  I am  (hiker mtn biker, road bike, paddler, you name it)we could make it work... he is such an awesome person.  I dont know what to say...its so hard for me. Its scary to let someone go you care about...
Thanks again for everyones thoughts and opinions...I appreciate it so much!
RG

[Chris]

His vision shouldn't be an excuse, there are many visual aids and techniques out there to use to get around. He should get training to use a white cane to help him travel even on trails. An O&M instructor would be needed and possibly be in touch with a low vision/ blindness center. If his vision is bad enough, he may qualify for a guide dog. There are resources out there that he may not be awAre of that can help and possibly get him more active.

[Riverwhispering]

Rocketgirl I agree with what Looneytunes said. 

You must not feel guilty about backing out of this relationship because you will eventually feel the impact of being held back on doing the things you love to do.

[ChrisEtc]

It sounds like you know the right thing to do but you feel conflicted about doing it.  Ultimately you can't save him from himself but you can save yourself.  You have to do what makes you happy.  Best of luck. 

[MomoMcSleepy]

Rocketgirl, I wrote a big long reply Wednesday-- here's my attempt to abbreviate.
First, I'm bothered by the description "the most wonderful, caring person ever."   I worry that you're glossing over faults.  Also, I've only met about 4 SUPER-nice ppl who were genuinely good people. 

Second, non-compliance is a big red flag.  Oh, and, side note,  I am not on the transplant list, but have to send my blood in because I have living donors, maybe that's it?  And-- I don't know why he's so sick already.  How's  his pancreas?  Why is he puking?  If sugar and bp were good, and pancreas checked, might help. 
 
Third- he "moves fast." How do you mean? My husband said "I love you" after 4 weeks, and I considered dumping him. I didn't because we had known each other for over a year, so I figured that counted as "time served."  Otherwise, red flag-- control/abuse issues (documented, google red flags, abuse).  

Lastly, he said he feels healthier and more informed with you around.  Since you're a nurse, I can sort of understand, but in my experience, it's a form of manipulation.  Later down the line, they often say something ugly, like, "if you left me, I'd die/kill myself/hurt myself/can't care for myself," and then you stay in this co-dependent relationship out of guilt/fear.

To paraphrase a friend: You deserve a partner who can take care of your needs, keep up his end of the relationship bargain (and disabled people can do this, but it looks like he might not be able to, for other reasons). 

In short:
I would break up with him now before he comes to rely on you too much.  That's my gut, knee-jerk first reaction to your post. 

You seem incompatible.  Kidney patients are not helpless, but we do have limits, and he will not be able to do everything you want---even with a new kidney.  Think--if he doesn't check his blood sugar, how is he going to manage the new kidney meds, etc.?  Those meds raise bp, etc., does he even know how to check his?  If you and he have enough like interests and goals, and he is good at taking care of himself and not just looking for a live-in (and free) nurse, then stay.  If you can make compromises to adjust to his physical needs and limitations, and STILL feel that your needs are being met, then stay.  If he seems interested in hiking and stuff, you actually have SOME core hobbies and beliefs in common, and being with you encourages him to be more active, then MAYBE it's ok...but, there's nothing selfish about wanting someone active;  of course, anyone can get hit by a bus, but why START with incompatibility?

Think about the future.  You have already married one guy that wasn't a lifelong partner, don't spend more time on a relationship that isn't a good fit.  Also, what impact could your dating him have on your kids?  Can you emotionally and even financially support him and kids, if necessary?  I'm sure you've thought of this.
 
 Wouldn't it be worse to marry/go long-term with him, get him depending on you, see him get sicker, then dump him?  Perfectly nice, well-intentioned people leave all the time.  He might be great, but it doesn't mean you have to date him.  
It's not selfish to protect your future.  You haven't made any big commitments yet.

Good luck to both of you!
 
 

[monrein]

Others have pretty much covered my own reactions to your description of your feelings and of this relationship.  I don't see how this could really work out in any kind of satisfactory way...even teeny weeny resentments at the two month in mark are huge red flags that ought NOT to be ignored.  ESRD is a marathon and requires stamina on everyone's part.  If the patient himself is only partially  committed to his care and overall health no one else ought to feel obliged to step up to that plate.  You need to first think about your happiness in all of this and if you can't get your needs met you will inevitably become hugely resentful of him and that spells misery all around.

How you feel is not an indictment of your character and nor is it of his. 

[Whamo]

Move on.

[Chris]

I concour with everyone elses input.

[lmunchkin]

Im ole school here, so let me suggest ole school principles.  Back in the day, 2 months was just "Dating", getting to know at the start.  It is not enough time to form "character" traits of a person. Men are protecters & defenders of the flock, with his condition being what it is and worsening, I doubt he could do either, just saying!

I would get out and would not recommend you be friends and Hang out, IMHO. Yall will need time alone before that should take place, it will be too painful, that is if yall truly love each other.  Look, you gave it a try Rocketgirl and you discovered that it is not what you wanted, Period! Youv'e only dated 2 months.  Dont let this disease and the guilt of caring for it suck you in.  If you are having doubts, then your future depends on what your gut is telling you!

I don't think a member here will blame you whether they have this or not.  We are all logical people here and we know its a "2month relationship" not bound by the vows of marriage.  Pray about it if you must, but Im saying to leave before you & him get hurt even worse!  Who knows, you may have helped him by not being there and him to realize his own personal responsiblity.

We are here for you, so please take our advise with the love and concern that we give it.  Keep us posted Rocketgirl either way, we will support you.

God Bless,
lmunchkin

[conchman]

Most everyone here has the right ideas, and god knows I am no Dr. Phil.  That being said, I think you are in a very new relationship.  Big flags are being waved and because of your proximity you will not see them, trust me.  I think in every relationship there are things called deal breakers.  Things that happen, and only in my opinion are one way streets.  For the usual relationships without medical issues, cheating, excessive and regular reckless spending come to mind.  Not just a little excess spending I mean the racked up 100k in credit card bills kind of spending... (freakin twice!), yup I know someone going thru this.  With our issues, not taking an active role in your relationship, combined with the less then steller active role in his own health raises some HUGE flags for me.  Unlike some here I will not even suggest what you do, or do not do, I am not you.  However, if it were me, at this stage of my life, I would slow this thing to a crawl.  Not saying it won't work out in the future, but it will need a lot of work, yup, people forget that word in relationships, the actual work part.  Thats the part that comes after the warm and fuzzy, were "soulmates", everything is rosey part...

thats my 2 cents, and good luck...

[gothiclovemonkey]

Since Im entirely too lazy to read everyones replies, im sure alot will be repeated here. But ...

I personally think that if you are Already having these doubts, this early, then you need to tell him before he falls completely head over heals in love.
If it were me, Id want to know how you feel about all of this. Honestly is very important in ANY relationship, friendship companionship or otherwise.
Perhaps you two are only meant to be friends.
I always worry that my life will be to much for my boyfriend. I have a child, who is a handful, plus my own health is crap (im the d patient) But we are upfront and honest about our fears and worries.

Being that you are an active person, and he cant be at this time, that doesnt mean you cant be together. You just have to have "you" time. (which you need in a relationship reguardless of the situation!!)

Even if he was in perfect health when you met, this could happen 10, 20 years from now, would you leave him then? Just a thought.

Just be honest, and talk about it WITH him. Maybe hes feeling the same way. You never know unless you communicate!!

[RichardMEL]

I am catching up on a few posts here, but read this thread with some interest.... well that's not the right word, but it's the best I have right now....

How have you handled this rocketgirl?

I agree with many points others have raised here. I also think it's showing real wisdom and YOU understanding YOURSELF to identify these issues so early on and rather than ignoring them trying to find a way to deal with them or if you feel you need to end the relationship with him because of it - it's always a betrter idea to do that kind of thing sooner rather than later - I noted in you original post you mentioned he was quicker to jump into relationships, so sounds like he could be a whole lot more attached and thus hurt more - which no doubt is also a concern for you because as you say you really care about him.

I think it's good you've identified issues AND communicated some (but maybe not all) concerns with him - communication is vital...it also soyunds like from what you wrote that he's trying HARD to improve things... So even though the general picture you paint of him in some respects is a bit cavalier with his attitudes (ie: don't need no BSL checks, etc) he clearly values YOU in his life and is trying as much as he can to improve himself to get to your level.

I did read GLM's suggestion about "you time" - but I realised you covered that in your last post here - in that you said you're a mom, a worker, a student... what free time does it give you to exercise AND spend with him? that would be tough for sure.

I also agree with Chris' assessment - blunt as it is - if he knows his body so well etc he would have controlled his diabetes much better and potentially not be in this advanced kidney failure (maybe anyway)....

I think there are many things in a relationship couples can work through - like the sexual functioning issues you menttioned, which can be common (for both genders) with kidney failure - ie you can do other things than intercourse, and even the vision issues.. mine is very poor - not due to diabetes but for other reasons, but I try to not let it stop me. I am out there walking, I fly around th world, I work full time etc (and yes, I do have a transplant, but I was doing a lot of that stuff while I was on D anyway). Everyone's different though... I do also share some concern about potential tx for this guy - though you say he takes his meds (so vital!) so maybe that would be ok, but it could well be a concern.

I also read between the lines if your last post - you're v irtually a non stop caregiver - you care for your child/children at home, you care for your patients at work.. and now you're caring for your bf?!! where's the care for you??! I can see how much of an emotional burden that would be on you... I would think a rship for you would involve an aspect where you're NOT doing all the work in that regard, and you need some "stress relief" as it were - someone to share good times with, exercise etc....

As someone else said yeah it's not a reflection on you or your character or his even.. just that it seems the situation is not right for the two of you right now and you're aware of this. I think you know what to do and yeah wondering how you are now and what's happened in the last 3 or so weeks?

[bansix]

rocketgirl, this is a similar situation of me and my girlfriend (now ex as of saturday)
you sound exactly like her, likes hiking, biking, roadtrips. all thing i used to love doing, but limited now
she started to question how things would work out in the long run as well. we agreed to remain friends
i could have made counter arguments for us to stay together, she may have wanted me to do just that. we may possibly be a perfect match personailty wise, but she's right, i can't promise many things being in this condition, its hard to even promise tomorrow. i want her to be happy, so I'm hoping she finds someone that she can have a better future than i can give her

[RichardMEL]

That's tough Bansix - you're coming from the other side of this situation and your decision and priorities shows a lot of love for this person in your life that you value her happiness and wellbeing that highly - I hope she understands that and keeps that in mind.

I can absolutely understand your feelings on the situation - and hers.. and sounds like you have really been able to communicate in a mature way about it - though I am sure it was far from easy for you both!

I too can think of many arguments on both sides... it is difficult to compromise when you feel held back and some people will be able to do that, and others will not.. and perhaps, at the end of the day, the reality of the strength of the connection is tested by how far one will be willing to go.

When I think about rocketgirl's situaion and her conflicting priorities it's understandable considering her rship is so new. Again, you can say "Oh but you can work with this guy and find a situation that works for you both, or take 'you' time to do the things he can't easily participate in, or you can find mutual activities that you both can do together... " and so on.... and it may all seem too hard when everything is new and you're thinking longer term.

And of course a transplant, or even potentially change of meds, could really help change things to make things much more easy to do like the hiking and stuff.

AAll I can say bansix is that this woman is very lucky to have someone like you in her life who clearly cares so much for her and well.. who knows what the future holds... best wishes on that because it's obviously very hard for you.

[Whamo]

Bansix,   You are a class act.  God bless you.