I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: UkrainianTracksuit on March 02, 2018, 12:31:57 PM
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This is more for my husband than me. He’s the one already asking the questions so it shows his one-track mind. I haven’t even reached the point of consideration yet (big incision, soreness, a drain...)
My word, I am so embarrassed to even post this and more so to ask my team.
The post-tx handbook suggests 2 kinds of contraception. Their suggestions were a mix of condom or IUD with spermicide. My husband isn’t too pleased with either option. I mean, he understands well that getting pregnant on Myfortic is not good but he hates barrier methods. The success rate of spermicides on their own is too dangerous to consider. I’ve never had an IUD but if I have to, I will. What worked for you?
Are there forms of intercourse that should be avoided? My husband is concerned about performing oral. The team kind of got him concerned over the immunosuppressive stuff in stools/urine (so flush twice... etc etc) and how he can’t touch the anti rejection drugs. Besides vaginal and oral, you can deduce the other option and I am of the belief of no way, too risky.
Were any of you told you could get sick once you resume relations? They told me it is a possibility because of infectious disease concerns. (Things my husband doesn’t really have control over like EBV.) And did you get UTI’s soon after?
We are a fairly young couple and my husband is a healthy male so he’s wondering all these things.
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Wait a minute.
You've had major transplant surgery, are now on a cocktail of powerful drugs, and YOUR HUSBAND DOESN'T LIKE "BARRIER METHODS"?
What is wrong with this picture?
Can't he be a bit considerate and use a condom for at least the first year post tx?
I've never been told that my husband couldn't touch the anti rejection drugs. What does that even mean? He can't touch them? What?
Is being a "healthy male" synonymous with abdicating from his responsibility for keeping his wife safe?
This topic really annoys me, as you can tell. :boxing; I'm sorry you even have to ask, but I'm glad you did! But to answer his very valid question, use a condom, dammit! LOL! I wouldn't suggest any sort of spermicide just because it means subjecting your body to yet more chemicals, and IUDs mean yet more dr visits. A condom is so much easier.
And no, "the other option" is off the table. You're right...too risky for anyone who is immunosuppressed. Nope, nope, nope. Besides, if you are in the least bit concerned about that option, your body just won't allow it to happen, anyway.
Too bad if he doesn't like my answer. :rofl;
BTW, I'm glad you posted this. This is an important issue, and we look out for each other here on IHD. You don't have to be embarrassed with us, but I still do understand your embarrassment, so thanks for giving us the opportunity to discuss this. :thumbup;
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Hey. So I had a tx as a kid that is just now on its last legs so I have been in relationships my entire life with a kidney transplant. Personally, in my opinion condoms are a PIA. They are great for safe sex from stds esp when in a new relationship but as long term birth control they kind of suck.
I have a copper IUD which lasts for 10 years, no hormones, no thinking about it, no spermicides, nothing to put in or on, 99% effective. The guy can’t feel it during sex (tho he may be able to feel the strings when fingering you). Idk why more people don’t use IUDs. The putting it in part is kind of a bitch as in quite uncomfortable but by the time 10 years has passed and was time for a new once I had forgotten that it hurt to get inserted! My only side effect was somewhat heavier periods, but I actually got less cramps than before.
As for your husband being afraid of performing oral sex bc of the antirejection meds, unless you are taking them vaginally, that is totally ridiculous!! Is he equally afraid of being exposed to them in your saliva while on the receiving end of oral? Somehow I doubt it... My ex bf was very generous with giving oral and we never had an issue.
I think this is a totally valid concern to bring up. My personal vote for birth control would be an iud. It’s basically just a piece of copper that makes your uterus an inhospitable place for a fertilized egg to make its home. Whatever you decide, best of luck.
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Oh and I never got a UTI. I always made to sure to pee right after sex to prevent from getting one. I’m not sure where I heard that but it seems to work.
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Just to be clear, my post was meant to address short term "concerns". What sort of birth control best suits you for the long term is a different topic.
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I had an IUD a number of years ago, and it was horrible to get it inserted and then it got embedded and had to be surgically dug out. Not fun.
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My husband can be a little bit selfish at times but he acknowledges it. Well, once you remind him that he's being selfish. He spent a lot of time as an athlete which creates a mindset of me-me-me-me (my training, my food, my schedule, etc) So, yes, there is something wrong with the picture where I am the one that had a double organ tx and a cocktail of drugs and he's concerned about his ummm, preferences? Without being insulting and in no way an insult to my husband, but he is a bit of a pig. ::)
I admit that I know nothing about birth control in the first place. Transplant has opened all these questions I never considered before. And since I never expected to follow the transplant route, and everything happened so fast, I never had time to explore. My team is all male and Middle Eastern so we don't have that kind of rapport to broach the subject yet.
And yes, my concerns are for the short term or at least until I am stable. Really, I don't know. I don't know if things get better but right now the thought of intimacy scares me. Once patients are stable, do the rules or suggestions become less stringent? I see people that have gotten pregnant and had healthy children post-tx (once stable) but right now, I just don't know. It seems like a whole new planet now.
I explained to my husband that the condom market/selection??? is so vast and expansive now. It's not like the terrible things he is thinking of like Russian-produced ones. It is not the end of the world if he has to use one until something better is figured out. Honestly, I was kind of peeved off that he would bring this topic up now when he knows/sees I am in discomfort. (I must stress that he wasn't looking to do anything but just wondering when he can get back to business.) A part of it is cultural where he has to be big man in charge and I guess having a wife with a tx is a sign of weakness/failure. Don't get me wrong, he is very happy I got transplanted and excited for a future of more freedom, but there is that.
I wonder why my center stresses the use of 2 forms of contraception at once? I mean, I understand to be "double careful" but it just seems a bit overwhelming for me. While reading, I read how spermicides could cause irritation to the woman and the man, so, rather unappealing. At this point, I want to run off to a convent.
As for the "no touching" of the anti-rejection drugs, what happened was he wanted to help me pop them out of the package and they stopped him. They said because the drugs can be absorbed through the skin and the "dust" (no pill dust was present btw) inhaled into the lungs, he shouldn't handle them for the sake of his own immune system. Then, he really had an anxiety attack with all this "cytotoxic" warnings all over the place... especially the bathroom. So, it got him wondering, what other bodily fluids are to be avoided? Hence, he's concerned about oral. As for saliva and kissing, he hasn't kissed me (even a peck) at all. However, it is good to know and a relief to him to know someone (NayNay) has noted his concern never really was a problem.
He figures that this part of his life will go downhill now. Again, selfish thoughts. He believes that it is going to take a lot of sacrifices that "other people don't have to do" and as a result, things won't be the same. Obviously, yes, they are not the same! I remind him these are very early days and he is going to get to know a better version of me since he's only known me as the ESRD/dialysis patient. Think of things positively... but it goes back to his sex life.
Now, I am really not sure about the IUD route. One says good experiences and then I see the cons...
While I am glad that this discussion is appreciated, and something I am sure a lot of people question, I still feel pretty exposed!
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Wow. You have a lot of things that you are stressing about right now. Your post tx recovery should definitely be one of them. But while Its great u are being so responsible re pregnancy and thoughtful of your husbands preferences, don’t forget that sex is supposed to be fun! It should not be another source of stress!
I would imagine that becoming intimate again will probably take some time to feel comfortable, I know it would for me. I couldn’t even laugh or cough w/o pain for a while after my transplant.
I would agree w others that condoms r probably the way to go at least for now. U can always choose a longer term method later on. While I am pro IUD and have had only positive experiences Its clear from another poster that’s not always the case, so I guess look into it more later on and see if it seems right for u or not.
I had never heard anything about It being dangerous for others to touch antirejection meds. My mom filled my med cases my entire adolesce and she was fine. But I guess every center has its own specific concerns
And don’t be embarrassed- that’s why internet anonymity is so great- u don’t have to ask this in person to a uptight doctor! Best of luck to you! Congrats on the transplants.
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U-Track, I have never EVER heard of any sort of warning about avoiding kissing/saliva while on immunosuppressants because it may cause problems for the person you're kissing! If you can't kiss or be intimate with someone after tx, why have the tx? What kind of life would that be?
While it is true that immunosuppressants do just that...suppress the immune system...., it doesn't meant it is obliterated. I have a WBC differentiated done each month, and all of my blah blah phils are within perfectly normal ranges.
Speaking of cultural lenses, I just have to ask; since your tx team is made up of Middle Eastern men, do you think that if your husband had been the one transplanted that they would have told him that his wife couldn't help him fill his pill box because it would be dangerous for her to touch the meds? I bet not! I can't escape the feeling that this is a case of one group of men providing an excuse for another man not to do something as emasculating as helping his wife fill her pill box. ::)
And no, "this part" of his life can only get better because you will be healthier!
Could you possibly consult with a female gynecologist and discuss these issues with her? You'd most likely feel way more comfortable taking to her than to your all male, all Middle Eastern tx team! She could help you decide what method of birth control might be better for you and your husband both in the short term and in the long term. There is no one right answer. You may have to experiment a bit, once you can even contemplate having sex again, of course!
And yes, once a patient is stable, there are fewer restrictions. Of course, one could say this about ANY patient and not necessarily specifically about a transplant patient. You've just undergone major surgery and are on a medication protocol that will most likely not stabilize for some months to come, and that's entirely normal.
Keeping your wife safe while she is recovering from major surgery is a "sacrifice"? ???
I agree with Naynay! Sex should be fun, not an obligation. Being of a certain culture is no excuse for putting your wife in peril just because you have an itch to scratch.
(On an entirely different matter, U-Track, I was reviewing some of your early posts and found one about the 2014 Winter Olympics in which you talked about the Russian curling team. Did you know that the US curling team won the gold by beating Sweden? Isn't that something?!)
Oh, and UTI's are a definite concern, even in "healthy" women. Not that it WILL happen, rather, if it DOES, it can become a real danger in a kidney transplant patient. That's another thing you can discuss with a gynecologist.
If you don't mind, please keep us posted on your thoughts and decisions. Like I've said, this is an important topic. Tranplants are meant to make life somewhat normal again, and having sex with your husband is about as normal as things are supposed to get. Perhaps the most important thing right now is to try to be patient with your body, and tell your husband that, too!
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I havea poor record with condoms. Too many failures.
Spermicidal as a back up was a good back up, and it doesn't necessarily have to be inserted until immediately before actual penetration, so you both can go ahead an enjoy whatever foreplay you want before it becomes time to get serious.
Definately schedulae an appt with your Gyn to find out any other options available.
The failure rate of IUD's is actually not so many, but it does happen and can be very discerning to those affected.
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Thanks again to each of you for your posts and suggestions.
Yes, I think a visit to the gynecologist is in order once we go home. One would be in the know about all the relevant forms of birth control and what would work. I got absolutely frustrated with my GP because he kept trying to push pills when he was aware of my health issues. As for the whole other world of birth control, I don't know much.
MooseMom, I do think it could be a situation of males sticking together. While they are good, concise and on the ball doctors, I kind of get the feeling like they think I am a dumb girl. You know, I actually had an Israeli (male) home care nurse who told me, the patient, that I have to "take care of my husband." His words! As in once I am on my feet, he should be my priority.
My husband is just being paranoid it seems. No one said anything to him about saliva but it is like kissing would give him cooties now or something. The other thing NayNay quickly mentioned in a previous post.. let's call it "digital penetration." He said he guess he has to wash his hands really well and I said, shouldn't you always? ??? He thinks his hands will give me an infection... it is common sense at times to just keep things clean.
I have never had a UTI in my life but hearing my friends talk about them/reading about them, they seem horrible. And yes, my patient information has informed me how bad they are for tx patients. So, I do have this fear that one will show up...
I mean, everyone is different, but once a patient is stable, will birth control be so stringent? I know with Myfortic they want pregnancy tests regularly because the drug is so dangerous to the unborn. Further, I know, if we plan to get pregnant or think I am, there have to be drug adjustments and it must be discussed first. (Personally, I couldn't imagine that right now.) But, that would mean, at some point, patients are having sex without protection? I am sure my husband would like to hear that. ::) I won't get into the complex virus concerns...
To make matters worse, my husband hasn't had sex in over a month so he's getting edgy. Patience is key here. He has seen my incision more than I have (he's watched bandage changes), he knows I still have stents and a drain... where is his pea brain? Another thing that doesn't help is that his male friends think he is married to a science experiment now. As in there are so many healthy good looking women from our part of the world, why are you staying with a miscreation? Our church teaches that sacrifice is part of marriage, so this is his "sacrifice".... he doesn't want to get me sick, he wants me to be safe, but he is apparently a source of pity.
I need patience with my own body as well. Thanks for the reminder, MooseMom. I knew prior to surgery I would end up with a large scar but it still bothers me. And I have 4 drain holes that need to close as well as a 5th that needs to come out. My body in general has just taken a hit all over and I feel completely gross now. The high doses of prednisone (really high in the beginning because it was a double) dried me out so bad I had cracks on my face! My hair dried all out and I have lost a lot so far. I know this is temporary and will get better but it is still upsetting. So, at least for me, I don't think anything is going to happen for awhile and my husband is going to be crabby.
Edited to say: Yes, MM, I saw that the USA won curling gold which is pretty special! Your comment took me back to 4 years ago and how life was so different then. I am thankful the Olympics were on while I was hospitalized because I would have lost my mind. The last time, I was there and this time, I got a tx. Makes me wonder what will happen for Beijing! :rofl; ) My husband is going to the World Cup "just because" even though he isn't too concerned about football or has no faith in the Russian team. :P
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U-Track, is there any reason no one has mentioned oral contraception? (And that's a general question to any ladies out there of childbearing age.) Are they contraindicated for female tx patients because of the immunosuppressants? I really don't know! Or are you merely not keen on the idea, U-Track?
I don't understand how a man would be afraid of getting cooties from his wife's saliva but would be just fine with having sex with her. One would think that such a man, who is afraid of even touching the meds, would be eager to use a barrier method. What am I missing here? (I think I know, but I thought I'd ask, anyway!)
You know what? While I understand your concerns, why not give yourself a bit of a break and stop thinking about this for a while. Nothing's going to happen in the foreseeable future, anyway, and you have other things to be thinking about. Maybe set this one topic aside for the moment. Or, maybe suggest to your husband that HE talk to your tx team privately. Or, maybe he can talk to a gynecologist himself!!! If HE has all of these questions, let HIM to the asking for the time being!
He thinks himself to be a source of pity? Oh, that made me snort with derision! LOL!
PS. I'd love to go to a World Cup! I did go to a qualifying match several years ago, and it was really exciting!!
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Hi! My kidney transplant is nearly 6 years old and before I had it done hubby had a vasectomy. We had 2 kids a boy and a girl (now 10 and 6) and he thought this would be the best idea 😂. Which it is but he is so paranoid still wants to use condoms around my fertile time. He agrees about me not taking the pill again am on enough pills. To be honest his whole though process revolved around what was best for me post transplant not for him. So sorry can’t be a lot of help 😂
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MooseMom, oral contraceptives are off the table because they apparently cause an increase in Advagraf levels. At least, that is the situation in my case. The information also says there are no restrictions on sexual activity and can resume once comfortable. However, my husband has to split hairs and break it down to categories.
I hate to be so slow but could you explain what I am missing re: not touching pills, cooties but okay to have sex? You see an explanation but I don't know it. I chalk it up to my husband being a little egotistical.
Hehehehe, yes, it would be nice if he could go ahead and ask all the questions since it all so important to him. But you're right, I should not stress about this right now although he gives me stress. :o He doesn't mean to, or maybe he does, I don't know. I kind of feel that if I am not running on all cylinders, that he will find someone else. I don't appreciate his friends considering me to be a science experiment and saying they could "never do it." It's probably an overblown worry but you know, prednisone makes everything worse.
Hi! My kidney transplant is nearly 6 years old and before I had it done hubby had a vasectomy. We had 2 kids a boy and a girl (now 10 and 6) and he thought this would be the best idea 😂. Which it is but he is so paranoid still wants to use condoms around my fertile time. He agrees about me not taking the pill again am on enough pills. To be honest his whole though process revolved around what was best for me post transplant not for him. So sorry can’t be a lot of help 😂
Oh my gosh, if someone mentioned a vasectomy to my husband, his brain might explode! :o He takes great pride in his virility... and yes, he's had all that checked. It's just such a shame he fell for me and not someone to give him 20 kids! However, I am glad that it worked out well for you guys and your husband is so caring!
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Thanks for informing us about the pill and Adagraf levels. I did not know that.
I am sorry you are feeling a psychological burden of being seen as an experiment of some sort. I DO hope it's just the prednisone talking. And I'm more sorry that you have that feeling that if you're not good enough in some way, your husband will find you lacking and will leave you. Is this something you can talk to him about?
Sometimes my meds make me really shaky, both physically and emotionally. It's worse when I'm tired or hungry. If I am feeling this way, I warn my husband. He's very understanding once he knows what's going on with me. Perhaps if you share your concerns with your husband, he could reassure you. Only you can decide if this is a good idea, though.
:cuddle;
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No problem about letting people know about Advagraf and birth control.
As for talking to my husband, I could, but I am unsure I would get a sufficient answer. Let's face it: it is true that there are super-women from our part of the world seeking a stable man. They are very open in their behavior too so why come home to this mess? In such a case, he wouldn't have to worry about any of this and have all the barrier method free sex he wants without drugs and scars. As well, I am unsure how much weight the opinions of his friends have on him. They say how they could never do what he is doing. It was bad enough on dialysis but my prescriptions were few and tame. Now, with this treatment option, where I am able to live more normally, they think it is a turn off. I don't understand but acknowledge they are vastly uneducated. He is a grown man and capable of his own decisions but I wonder.
I haven't had many prednisone mood swings as of late but I usually end up crying and say, "It's a mood swing!", and he'll try to talk to me. I married the man so why complain now, I know what I got myself into, and that meant a lot of vanity. Not sure how to balance that with life's ongoing changes and transplant though. I had very little issues on dialysis (an easy patient) so I managed to be fairly inconspicuous. As I become more stable with tx and certain side effects subside, I am sure that inconspicuousness will return... as least when clothed. So, no wonder we are both on different pages on the intimacy part.
Anyway, he learned today that he should wait 4-6 weeks for intercourse or until the incision is healed. However, other forms are a go once comfortable. He was also advised that post-tx desire returns better than when patients are on dialysis. That made him chipper. Lastly, the social worker reminded him that sexuality includes hugging, kissing, general touching... and all of that is completely safe to do even right now.
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U-Track, now that you've seen this sort of mindset in your husband, do you see him in a different light? Have your feelings for him changed? Do you feel resentment?
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No, my feelings for him have not changed. I am still in love with/love him. And no, I don’t resent him either but rather am woefully sad at his lack of understanding in regards to transplant. Transplant is a complicated matter for patients and for families as well but he never really took the time to understand that it’s the treatment option that offers the most normal life.
He learned about dialysis, and became knowledgeable about it, but didn’t like the thought of it and tried to block it out. For transplant, he knew it offered more of a life but again, blocked out information.
I just don’t know how to balance his expectations of vanity and sexuality with all that is happening.
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*standing on soapbox, filled with righteous indignation*
U-Track, you know what? It is NOT YOUR JOB to "balance" his expectations about ANYTHING! NOT YOUR JOB!
He has made certain decisions in life, and now he has to live with them. He has chosen to block out information. He has chosen to be willfully ignorant. That is something you cannot change without his help. And you shouldn't have to work so damned hard to make his sex life easier for HIM.
You are a saint for not resenting him because I certainly do on your behalf. If that were my husband, I'd be seething. You have a generosity of spirit that I obviously lack. I would have skipped "sad" and would have fast forwarded to "resentful". :rofl;
Actually, transplantation is not really that complicated. It really isn't. It can be formidable. It can be scary. But it is not complicated. Transplantation is nothing new. The meds are nothing new. Sure, it is all a balancing act, but that doesn't make it complicated. So he cannot use "Oh, dearie me. It's all TOO COMPLICATED for my little man brain and my man bits!" as any excuse whatsoever.
He needs to man up and grab some courage from YOU. YOU have been through the wars of dialysis and the victory that can come from transplantation, and somehow YOU've been able to wrap your head around it just fine. Are you just smarter than him, or can he think with only one little part of himself? Or are you just BRAVER than he is? Smarter and braver. Yeah, that could be it.
*steps down from soapbox and apologizes for getting angry at a man I've never even met*
Have mercy upon yourself. For right now, don't offer to fight his battles for him. Remind him and yourself that this state is temporary. Things get better. :cuddle;
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MooseMom, I honestly don’t know what to say cause all of it is the truth. :rofl;
It is true that I really have no control on how he perceives these issues or how he has “managed” (or not) them. He needs his own examination of thought on how he wants to come to terms with the situation. Conversely, on my end, I am concerned he might not even find me attractive anymore. It is temporary but high dose prednisone did a number on me and after such a major surgery, I look chronically exhausted.
By the way, technically, I am smarter than him. :yahoo; It would be wrong to chalk it up to cultural blips but it does colour his thinking and perception of what a woman should be. Part of that is an attention to grooming which is lacking right now. (I groom but working with limited tools!) All of this is really temporary and can only get better in time.
You’re right I can’t fight his battles not only because it’s uncalled for but I don’t have the energy. I have other more important priorities such as a good recovery. I am developing some post-op complications now (both organs are working great though) so his sexual frustration has to wait.
However, he is back sleeping in the same bed as me and he touched my feet. So, I guess I’m not as dangerous as he thinks. A hug would be nice though.
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There is going to be TMI in this post but I have a medical concern so it is needed.
I thought it would take a lot longer to become intimate with my husband (as previous posts noted) but we started up again almost a week ago. To be blunt, once the last wound drain was pulled. We are in the 4-6 week window (5 weeks) where information said it is safe to resume.
1) The first time was terrible. My abdomen is still numb and I felt too tight. We tried again later (so 2x in one night) to see if it got better/felt better. I woke up with some pain all located in my groin but it felt like muscle strain.
2) Did it again twice in one night and things felt better....but still, groin soreness and muscle strain all localized.
3) Next, there was 4 times in one day. Now, at this point, the muscle strain was really obvious and I was aching a lot. We decided to give it a break for a few days to see if the pain/ache subsided and to be extra sure it was the physical activity that was causing it.
4) After a couple days, we became intimate twice and in a fairly short time period. At this point, I noticed my abdomen felt extra sore, hard and like a firm lump was on my kidney side. I am unsure if there is actually a lump but it sure feels as though it is that way because of the firmness. It feels tight there too.
Naturally, my mind flashes to a hernia, like they warn you about. Now, I am further worried about having developed a seroma around the site where the last drain was removed. Thank goodness I go to clinic soon but this is going to stress me out.
I wish I would have waited much longer like my original plan and was a bit more paced with myself. If I have caused problems due to stupidity, I will be so upset. Has this happened to anyone else or had similar symptoms? (Hernia or seroma?)
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Have you considered doggie style? It might put less strain on the abdomen.
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Remember that ALL muscles atrophy much quicker than we think.
'Soft' muscles can be over used and develop spasms much quicker than developed muscles.
Think of returning to an active sex life as more like addressing physical therapy, take it SLOW and easy. Try not to over exert yourself. If it hurts that is a sure sign you are doing too much too fast. Slow down. Take a day off in between 'sessions' to allow the muscles to rest and possibly heal from any excess exertion.
I'm sure that he is more than willing to have you return to your previous schedule, but you need to pace yourself. He needs to understand this.
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KAMASUTRA
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Thanks everyone for the advice, from change of styles to muscle atrophy.
I complained to my surgeon (yes, a Middle Eastern one) and he felt around but he was not concerned. Naturally, I am still concerned because my belly is really swollen and doesn't "feel" like it did before we got back to things happening. It is not uncommon to have a bit of a "distended" abdomen (so I read) post-tx but I didn't have it until this.
He said to stop "going at it like rabbits" and take it slow. This fell on deaf ears with the husband as again, 2x in the evening and 2x this morning. TMI, but a lot of the issue comes at climax with the muscles doing what they have to do. I agree with Charlie that at this point he has to understand that things need to slow down and take a break.
Still concerned that I did something wrong. I will be seeing my old renal clinic soon and if this continues, will ask for an ultrasound...
KAMASUTRA
:rofl; That is exactly what my husband is making a list of today.
Have you considered doggie style? It might put less strain on the abdomen.
Yes...
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Ok, so I'm 44 and have never had what I can even begin to call a "real" relationship, so I honestly have no idea what it is like to be in one. But OMG, what is up with your husband??? Why is it only all about him and his needs, and not even one bit about yours after having major surgery with not just one, but TWO organs from another person who DIED, no less?????
Sorry for my outrage, but your husband is less of a man to me to put his needs over yours in this obvious, blatant way. Please start putting your needs before his. Your health requires it!
KarenInWA
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KareninWA, when one puts it in the big picture (which is obvious, but sometimes we forget) it is really stunning. There is a major surgery, 2 organs and someone who has died. I think about the magnitude of this situation and it is really jaw-dropping that one person can make it about himself/his needs.
I don't know how to explain all this to him (besides the obvious no) without it turning out of me being a bad wife (culturally, socially, religiously) and then the whole chorus of "don't get involved at all with sick people" starts. He is the one that gets the pity and the gold star for dealing with me and not of me having a major operation... if that makes sense.
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U-Track, I am so sorry to hear that you are so helpless in this situation. It seems like you have given your husband full and complete control over your own body, and that is such a shame. I hope the two of you are at least enjoying your newly invigorated sex lives together.
We all make choices and have to live with the consequences. You knew that problems would arise from having so much sex so soon after such a big surgery, and it is too bad that now you are the one having to pay the price. I hope it has been worth it.
No, it doesn't make sense that he is the one getting the gold star, but it does look like that this is a mindset that you will just have to live with. It's obviously not going to change. None of the players in this little drama are going to change, unfortunately. You seem to be well and truly stuck.
The real surprise is that you saw this coming from a mile away, yet you were not able to avoid it.
I am sorry that you are stuck in a culture and with a husband that values a wife so little. I hope that sacrificing your body to be "a good wife" will have some value to you.
Good luck in your future with your husband and with your recovery. I hope your medical team will keep your body going well enough so that your husband will be happy, since that seems to be the priority here. The fact that you've had major surgery seems to be entirely irrelevant.
(It still might be worth talking to a gynecologist to see if there is anything you can do to protect yourself from the ravages of your husband's culturally aggressive sexual appetitie. If you do someday decide to a consult, make sure she is female. I am suspicious of all of the men who are in your tx team. My post tx team is all female.)
Take care! I hope things work out well for you!
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I don't think there is much written on this subject so I think this is a great thread. Evidently people with chronic diseases and old people are not supposed to have sex. And you're not supposed to talk about it if you do. I wonder if it would be helpful/possible for one of your doctors to talk to your husband. My guess is that it would be outside their comfort zone though. It's ironic that your health might require an even longer period of abstinence because he's not able to slow down now. Over the years in a marriage there may be times, such as immediately after childbirth, when it's not possible or advised to have sex as often, or in the same way, you may be used to. There are ways to have sex that don't have to put your health at risk. And as wild and crazy as it may seem, it's possible that at some point in your life together he may get sick and be unable to have sex or (if you can imagine) not feel like it. Karma has a way...
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(It still might be worth talking to a gynecologist to see if there is anything you can do to protect yourself from the ravages of your husband's culturally aggressive sexual appetitie. If you do someday decide to a consult, make sure she is female. I am suspicious of all of the men who are in your tx team. My post tx team is all female.)
Yes, that remains the plan once I am home. We are still not home nor released from outpatient care. (It will be 2 mos. here soon.) Once I am home, the appointment is a priority and most definitely a woman will be consulted. It is not as if this has been forgotten or left undone.
I am NOT making excuses for my husband's pigheaded behavior but (yes, excuses begin with but) we have been in this condo for this extended period of time. Yes, we go out some days and are not hermits but I think this plays a role in his piggish behavior. Once we return home, he can return to work, his own friends, hobbies and working out and his sexual focus will subside.
That does not dismiss the fact he has acted completely disrespectful towards my operation. I know this. It is not as if I say, "come on, let's go! I don't care about protecting my two gifts and accept the pain I know this will bring!" No, actually, I am VERY MUCH concerned about damage that could be done. It makes me a nervous wreck. He just doesn't listen. But, this is only complaining if no solutions are sought. I'm not going to divorce him.
I really do think if a man whom he respects slapped him and said, what are you doing, boy?, it would be eye opening.
And as wild and crazy as it may seem, it's possible that at some point in your life together he may get sick and be unable to have sex or (if you can imagine) not feel like it. Karma has a way...
Yes, exactly. I cannot explain how relevant this quote is. I remind him that health can be rather fleeting. Here today, gone tomorrow. While he is blessed to be in excellent health and athletic, this may not be the case tomorrow. I have asked him to consider how he would feel if the tables were turned. If he was bedridden, in pain, and I complained that my needs weren't fulfilled or did not take his condition seriously. He would undoubtedly think I was a warped female dog. Uncaring, unsympathetic and selfish. Some times, some are unable to empathize because they can't place themselves in a situation.. a situation that can happen to anyone! Being sick is not unique and it happens to all of us at some point... minus the lucky few.
Another good point is that his need of urgency now can cause problems later on that demand continued abstinence. He should be focused on abstinence anyway since it is Great Lent. ::) But that is secondary to the bigger picture overall. Haste makes waste.
When I complained of my pain (and told the doctors why), they told us to stop doing it so much. (My husband attends all my appointments.) I was grateful for that order. That just led him to find "easier" ways.
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Can't you just say "no"? ???
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Saying "no" only works for so long. I do say no and he will broach the subject later and then again. He doesn't do things forcefully so I don't want that idea out there but he will initiate after many "no's". (kissing and stuff) Other times, he wears me down with asking that I say yes in a huff. Prior to this, he went over a month without because I was rather ill. He never asked. Complained a bit, but didn't ask.
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In thar case, I do not think we can help you. I am sure you will be just fine!
Good luck, and take care!
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I do not seek to argue with strangers but truly, there is no need for dismissive or chirpy remarks. On that note, paka for how many ever years again. Good luck to you too and everyone else as well.
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With all due respect, fellow IHDers have spent quite a lot of time and effort in reading your posts, responding to them, agreeing with you, trying to support you and urging you to speak to your husband about your concerns. We all understand the magnitude of your surgery and the toll that it takes in the first year post-tx (any maybe beyond).
You, in turn, have been very open about your feelings, about feeling disrespected by your husband, by his friends and by your tx team. You have quite strongly voiced your opposition to returning to sexual activity for the time being, and that's very understandable. We have never disagreed with you and have only urged you to keep yourself safe, just as you've claimed you are trying to do.
But then you tell us that not only have you returned to having sex (which is wonderful if that is what you really want), but you're having sex so often that even your culturally male-priviledged doctors are advising you to cut back.
So, it looks to me that you are willing to put your wants, your concerns and your recovery to the side so that your husband can do what he likes, despite the fact that we all agree with you and are concerned for your health.
So truly, I do not think there is anything more we can help you with. I'm not sure there is anything left to say. If that sounds dismissive, I am sorry, but you've obviously made the decision to put your husband's "needs" first, and while we have tried to encourage you to put your own recovery first, you have chosen not to do so, and then you tell us all of the reasons you can't say "no". Again, you've made your decision as is your right; it is your life, and ultimately what we say to you is entirely irrelevant. So, I don't see what more we help you with.
Far from being "dismissive or chirpy", I am sad for you and am also feeling frustrated on your behalf. I've kept up with your story for days now, and I have very very often felt unhappy about your predicament. But I don't feel unhappy any longer because every time you give consent to sexual activity, I must assume that you are doing so with a view toward making your life happier. As you've pointed out, we are strangers, so I cannot let myself stay unhappy about your story. I've been a part of this community for over 10 years, and I find myself feeling sad when members post about things that are making them unhappy. I shouldn't allow myself to do that. After all, I don't know you. So, no. "Dismissive" is an unfair word to use.
Sometimes I wonder if what you really want from us is some sort of "permission" to yield to your husband's desires despite your fears.
I don't see anything changing in your situation. As you've said, you can't say "no", so on that note, I really DO wish you the best of luck, and I really DO hope you can find a way to take care of yourself. I hope your recovery goes well despite your husband, and I hope that one day soon, your life with get back to normal.
I personally do not have any more to contribute to this conversation, but once again I want to thank you for raising the topic. Perhaps other members will have something to say that will be more helpful to you. I'm sorry that I could not offer you solutions to your predicament. I did try, though.
(edited to add): I typed my post late last night from my e-reader which has one of those teeny tiny touchscreen keyboards. I find it hard to use so keep any posts as short as possible. Perhaps that's why my post came across as "chirpy".
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I don't know how to explain all this to him (besides the obvious no) without it turning out of me being a bad wife (culturally, socially, religiously) and then the whole chorus of "don't get involved at all with sick people" starts. He is the one that gets the pity and the gold star for dealing with me and not of me having a major operation... if that makes sense.
Dear Ukrainian Tracksuit,
I have been thinking about the above and I still can't understand it, however hard I try. What does it mean when you mention " a bad wife (culturally, socially, religiously) ? Are you not right now a vulnerable transplant-patient in need of great care and a bit of pampering and certainly no stress whatsoever ... and is a husband in such an extreme rare situation not becoming a sharing and understanding best friend ?
Best wishes and good luck from Kristina. :grouphug;
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I may be difficult for many to understand some of the differences in social-cultural regions other than our very own.
Male/Female relationships can be far different when compared to different regions of the world. While some of us may not agree, it is an elemental fact of life for those living in those regions.
We ARE what we learn. Growing up within a culture that is easily all that we know and it is simply a way of life.
The Female 'Rights' Movements within the U'S' and Europe are not necessarily the same as those in many other Countries. While we may Wish it so, it simply isn't.
Far too many places Women are still abused, consider little more than 'property'. Perhaps the men in those areas have never been taught to give consideration to Women's feelings. Change takes time and effort.
With time and lots of communication hopefully this Poster can get her Man to become more consider of her.
I certainly Pray so.
Take Care,
Charlie B53
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Dear Ukrainian Tracksuit,
I have been thinking about the above and I still can't understand it, however hard I try. What does it mean when you mention " a bad wife (culturally, socially, religiously) ? Are you not right now a vulnerable transplant-patient in need of great care and a bit of pampering and certainly no stress whatsoever ... and is a husband in such an extreme rare situation not becoming a sharing and understanding best friend ?
Best wishes and good luck from Kristina. :grouphug;
I will answer your question, kristina. Personally, I do not consider myself a bad wife but in those three spheres, I am. Socially and culturally, I would be considered "a bad wife" because my husband would not be taken care of sufficiently. Perhaps not a bad wife for my actions but a bad choice of wife. "Socially", people with chronic conditions or any form of disability are considered to be a bad choice of spouse for reasons of being unable to keep your household managed and have children. If my husband would make a complaint to his family or friends, they will tell him he made a bad choice of spouse/choose a bad wife mainly based on my illness. If I relayed my problems to even a professional from that region, I would be told my husband is a man and naturally doing what men do, what do I expect?
Here is an example of a cultural example. We Skyped with my mother-in-law yesterday. She has never liked me solely for the reason (at the time) I was on dialysis and cannot give her grandchildren. She will say I am a nice girl and such but she thinks her son lost his mind to marry such a woman. Anyway, I was explaining I have a lot of swelling in my abdomen, especially around the incision. (The question was how I was I feeling, so I said so.) She said rather abruptly, "We know you aren't pregnant so don't show me." Now, she blames me for taking her son far away.
I have changed my mind about being considered a bad wife religiously though. That is another story but to address this issue, I am bringing in the big guns: an Orthodox priest. At least, he agrees with me. As a result, I have a plan for when I finally return home... if I am ever released from outpatient care. However, if we were back home (as in homeland), the opinion of the clergy would be different as well. I would be considered an extremely bad choice. Yes, while I am the one with the major operation, and require some care, it comes down to "well, you made a bad choice of spouse" in each case.
Charlie B53, you are very right on with your reply.
I live in Canada now so I see everything going on with the women's rights movement but the way you were raised is the way of life in your household. In Eastern Europe, we do not have the Me Too movement and it is laughed at. Well, it has been until very recently when a high profile politician sexually harassed a young journalist before people became outraged. Sexual harassment is simply considered to be complaining and some women will say a variety of things in order to tolerate it, say it is okay or say "it is just men being men." It is considered a part of life.
Last year, a law that decriminalises some forms of domestic violence was passed. This was to ensure "our culture" in that family issues are a private matter and the state involved in such issues is a "Western invention".
In recent years, there have been rape cases where the young girls have been harassed by strangers online relentlessly and told to shut up. A big story last year was of a 16 or 17 year old girl who was raped and thousands of people supported the accused young man. Burger King even made an ad mocking her story. It is fair to say these are the sensationalised stories but they demonstrate glimpses of an old mindset.
Feminism is considered an extremely bad thing that turns women unbearable and repulsive. It is interesting to me to see how it is embraced by some countries and considered a major problem, or something to avoid, in others. I received one of those "No Means No" stickers once and my husband looked at it and said, "you are not talking with those gross women, are you?"
So, Charlie, you are right that sometimes some people do not learn how to treat other people. Only mother and grandmother are the good women!
All of this is not an excuse or a pass for behaviors but rather to illustrate it is complicated. It is also true that no one here can help me but I am also not looking for approval to say things are okay to do. Quite the opposite. When I am home and have my own support system, instead of being in a place where I know no one else, I have a plan.
As per the topic overall, no sex for 3 days, and my pain is significantly better. Thank heavens... but there is a seroma after all.
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I can only Pray that your Husband comes to understand. Would he read this thread without anger? It may possibly give him pause for thought, and become enlightened to your position. Finding other methods for 'release' without actual penetration could help you both through this time of healing.
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Charlie, I thought about him reading this thread now. There is a lot of good "emotional" outpouring and good reactions from others he NEEDS to read. I second guessed having him read it because I used some bad adjectives or descriptions of him. I counted 8...and spoke not-so-nice of his mom. However, at this point, if it is harsh, that is fine because look at my feelings.
He doesn't know about my plan though but that just means conversation time. :lol; And I also used the celebratory emoji to say I was smarter than him. Oops!
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Sadly yet today within some Cultures the Women are still considered little more than a 'Slave' to the Man. Treated much like property to be used and abused in any way the Man wishes. And some Cultures go so far as that the Man if he felt disgraced by the action of the Woman, may be expected to execute/murder the Woman in order to regain his honor.
Slavery in most cultures has been abolished. The sad treatment of Women not so much.
Although many so called progressive/enlightened societies are much improved in our treatment of Women, we still have progress to be made in that there is still a large disparity in wages paid by employers in that those wages of women, in the exact same positions as men, are still being paid less than the man.
I can't speak for the rest of the world, but for me, if my mate is not in the same 'mood', is not a willing enthusiastic partner, I cannot find any enjoyment if she isn't also. Where is the intimacy if she is not feeling the same as I?
As with any exercise, if it causes pain maybe you shouldn't be doing it. Pain is a sign that something isn't quite right yet. Whether a muscle is damaged or simply atrophied, it needs time and slow gradual exercise to become fully functional again.
Many many men have and continue to suffer from low back pain from even what others may think of as only a small slight injury. Pain is real. Rehab can take far longer than most people think. Very slow and easy use can take a surprisingly long time before full function can be regained, IF ever. I broke my back in 98,, I still have problems today.
Progress takes time. Your Husband really needs to learn much of this and perhaps then he will learn to become more patient with your recovery.
Take Care,
Charlie B53
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Back pain is definitely real. My wife and I were in a three car/one fatality accident (elderly person crossed centerline and ended up killing herself). My wife knew she was hurt, but it turned out to be worse that we imagined. She goes for C4/C5 spinal fusion tomorrow. Needless to say, I went on "inactive waitlist status" until she fully recovers.
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Dear Ukrainian Tracksuit,
I have been thinking about the above and I still can't understand it, however hard I try. What does it mean when you mention " a bad wife (culturally, socially, religiously) ? Are you not right now a vulnerable transplant-patient in need of great care and a bit of pampering and certainly no stress whatsoever ... and is a husband in such an extreme rare situation not becoming a sharing and understanding best friend ?
Best wishes and good luck from Kristina. :grouphug;
I will answer your question, kristina. Personally, I do not consider myself a bad wife but in those three spheres, I am. Socially and culturally, I would be considered "a bad wife" because my husband would not be taken care of sufficiently. Perhaps not a bad wife for my actions but a bad choice of wife. "Socially", people with chronic conditions or any form of disability are considered to be a bad choice of spouse for reasons of being unable to keep your household managed and have children. If my husband would make a complaint to his family or friends, they will tell him he made a bad choice of spouse/choose a bad wife mainly based on my illness. If I relayed my problems to even a professional from that region, I would be told my husband is a man and naturally doing what men do, what do I expect?
Here is an example of a cultural example. We Skyped with my mother-in-law yesterday. She has never liked me solely for the reason (at the time) I was on dialysis and cannot give her grandchildren. She will say I am a nice girl and such but she thinks her son lost his mind to marry such a woman. Anyway, I was explaining I have a lot of swelling in my abdomen, especially around the incision. (The question was how I was I feeling, so I said so.) She said rather abruptly, "We know you aren't pregnant so don't show me." Now, she blames me for taking her son far away.
I have changed my mind about being considered a bad wife religiously though. That is another story but to address this issue, I am bringing in the big guns: an Orthodox priest. At least, he agrees with me. As a result, I have a plan for when I finally return home... if I am ever released from outpatient care. However, if we were back home (as in homeland), the opinion of the clergy would be different as well. I would be considered an extremely bad choice. Yes, while I am the one with the major operation, and require some care, it comes down to "well, you made a bad choice of spouse" in each case.
Hello Ukrainian Tracksuit and many thanks for answering.
I still don’t understand, what your chronic kidney disease and current kidney transplant have to do with your social standing?
And your husband surely knew of the difficulty to have children with a chronic, most likely, genetically inherited kidney disease (as you were looking after your grandfather when he needed dialysis) ?
Your predicament makes me very sad, because I remember you from your posts in the past, when you appeared as a vivacious life-embracing girl and it is so sad, how “things” have developed for you since then. It is particularly sad to read, that you seem to be considered a “bad choice for a wife” because of your chronic kidney disease, which is there to stay with you for the rest of your life. Could it be that you have not fully discussed your life-long requirements and particularly since your double-transplant with resulting need of care and the fact that you not only have an obligation to your own well-being after the transplant, but also to the person who donated their organs to you when they died. Just imagine how very humanitarian and immense it is for a dying person to donate their organs ! Not many people donate their organs after when they die and you were so lucky to receive these donated organs and there is quite a responsibility involved to take the greatest of care after a transplant. I do hope your husband “comes around” very soon to comprehend, what you are actually going through right now and I do hope your own self-esteem won’t be inflicted by this current cruel situation.
I have been wondering about the mentioned cultural, religious and social matters involved. This has surprised me very much, because, for example, when Raisa Maximovna Gorbacheva became so unwell with Leukaemia, her husband, the former President Mikhail Gorbachev was instantly supporting her completely and he certainly was travelling with her to receive the best medical care for her. He also was always at her side when she was being treated by Professor Thomas Buechner, the leading haematologist in Münster,Germany. I only mention this to explain why I don’t understand, that social, cultural or religious matters should come into it, when two people love each other, marry and get together and do as much for each other as is possible in sickness and in health?
Best wishes from Kristina. :grouphug;
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kristina,
In regard to the question of CKD and social standing, many are of the belief that a person with chronic illness, such as renal failure, cannot live a full life. That is very far from the truth as I believe life is what you make it. As a result, such a person cannot be a complete partner and the spouse suffers in a variety of ways. It doesn’t make sense at all but this is a general attitude I have encountered. Secondly, since there is a lot of “macho posturing” in my husband’s field (think of how the president likes himself presented) so to have “settled” for a chronically ill wife means he is some kind of failure. It is small mindedness. Dating in very competitive in Russia these days (as I am sure it is in many places) but youth, fertility and beauty are in abundance, even for older men, so those of us with a chronic condition have rather impossible standards for a happy ending (this is the case everywhere, I imagine.)
My husband knew very well of my health situation from the beginning. I provided him with all the readable information I could. In turn, he learned a lot about dialysis, picked me up from every session (in clinic) and seemed rather supportive. This issue arose with his mother and grandmother who constantly nag him about him being such a handsome, strong, good-catch of a young man who should have children. It is a regular topic of their communication and though I do not want to get involved in “in-law drama”, I have told him that he needs to defend his own life choices as a man. Transplant is an area where he is vastly uninformed but knows it is a treatment, not a cure.
Your words concerning the deceased donor are especially relevant because I know that our Orthodox priest specifically said that my husband’s actions are disrespectful to the donor. As in, he is disrespecting the dead, which is a very very very very very serious matter. He has to answer for that himself. Personally, I think about my donor every day and remain in awe of the gifts I received from a stranger. Since these are gifts, they are to be treated with the utmost care and respect. That was my intention from the start.
My husband confuses “signs of improved health” with the ability to return to his needs and intimacy. He witnesses my improved energy (and this is fact, my energy since transplant has doubled or even tripled!), my test results in “perfect” range (except the ups and downs of the medications) and being within the window to return to intimacy. As a result, he assumed it was all systems go although I was uncomfortable with such a development. What he fails to realise is that it was a major operation (actually, he knows that, he was there during my hospital stay) and the healing requires time. The outside may look healed up but internally, that requires a lot more time. I think he understands that better now but he does have a selfish side that we all acknowledge exists. This morning, I could tell him I had no pain at all so it is rather simple arithmetic what caused it.
Thank you for the example of Raisa Maximovna. You have reminded me of another Raisa as well. Do you know the now famous story of Stanislav Yevgrafovich Petrov? His wife Raisa was diagnosed with cancer and he retired from the military to care for her. When she finally passed away, he was a shattered man. It was yet another example of devoted love. Perhaps I can compile stories of strong or admirable men that have taken on the role of caregiver.
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What ethnic group are you discussing? Why is this conversation going on and on? Several solutions have been offered but apparently none used. Find something that works for YOU! The concept of your having no personal say over what is done or not done with and to your person is insane.
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1) I think if you read the last post (and second last from kristina) that answer is really obvious. tl;dr? I understand that.
2) Why is this conversation going on and on? Ask those that make remarks or questions. People reply, so I reply. I will gladly stop replying and say Пока! which I did for a bunch of years because my dialysis life was great. As well, you don't really have to read this as there are topics that I overlook as well. For example, I know nothing about PD so I don't read those. Please do not assume no solutions have not been put into place. Obviously solutions have been used because we have come to an amicable detente.
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::groan::