Hello, I’m a girlfriend to my boyfriend who is stage 4. And a step mom to his 11 year old daughter who is my own.
My boyfriend was born with one kidney; took care of himself and now we are at the point where he needs dialysis. He’s already on the transplant list. It gets hard knowing how tired he is, losing weight, he doesn’t eat as much.
I feel sad because I feel obligated to give him my kidney. I don’t know what blood type I am, but I also do alot at home making sure he and our daughter is okay. It’s alot to take in.
I feel lost because I know I might have to get a second job to cover bills, I feel lost because should I get tested?
. He made a post on his social media about needing a living donor. I’m worried like if we are both out who is going to take care of the little one. I don’t know what to do, I’m worried. It’s hard seeing him like this.
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HopeAngel5
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you re a strong person if you re doing that by yourself.dont give up.me personally id get checked but thats me and it would be great if you could help that way.you will find support here and ready ears
It's a difficult one. I totally get where you are coming from. Sometimes on this journey the focus is get a kidney no matter what. However there is still a world out there , where bills need to be paid. I totally get it. I am on dialysis and still work. I despair when I have to go for appointments and it falls on a work day. It usually means i lose a day of pay. My medical team are usually quite blasé about it all. However it does worry me at the end of the month when bills and the mortgage needs paid. My husband got tested and to be perfectly honest with you, I was relieved when he wasn't a match. I don't know how we would have coped financially. Also what happens if further down the line, he developed kidney issues. Yes he would be put to the top of the list but on a day to day basis, it would have a real impact on our lives. You shouldn't feel this pressure but I understand, your predicament. Everything seems so black and white to some people on this journey. However sometimes just ticking boxes is not the answer. I really feel there is a total lack of support for patients and their families in the UK not sure about where you live. Sometimes you just have to make a stand no matter how unpopular it makes you. Do not bow down to pressure. Listen to what your gut instinct is telling you. Can you get tested without your partner knowing? Then it gives you time to digest the facts and then make your decision. I really feel for you. Sometimes the patient is the main focus, people forget the anxiety and worry their caregivers have. Keep us updated and sending you a big hug x
Talk to the transplant center. They can give you all of the accurate information regarding testing for donors, the surgical procedure, the down time for the donor I was told is approximately one week. There is no easy answer. You must do what you think is best for the overall family. Supporting the patient and a child and your own physical and mental health is no easy task. If you are in the U.S., he needs to apply for disability and medicare if he has not already done so. If you belong to a Church, talk to your Pastor. Ask him/her to announce in Church that he is in need of a Kidney and even if it is not a direct match they can do a Kidney swap. Post a notice at work, talk to your co-workers about needing a kidney and with the iformation you have you can discuss what it will take with them as well. Talk to your neighbors, and social groups you may belong to, and even your daughter's school. You never know where a kidney may come from. Do your research. Once you are armed with all of the information you will need, then you can make the decision that is right for you and your family.
No one is obligated to another person, no matter who, to do anything for them. OBLIGATE is a payment for something. Think about it. Why are you owing him something? Even married people do not owe another. Giving a kidney is a gift, and should only be given without guilt or pressure. It is a huge decision. And it will impact you both for the rest of your lives.
However, here are some things to think about. Check with your local transplant agency. You can give a kidney without being a match. But it will ensure your BF will get one. There are organizations that will help with finances for time lost at work, travel and daycare. There are ways to make this work.
No matter what you decide, your BF will do dialysis. Not sure where you are, but look into home hemodialysis or peritoneal dialysis. You can support him by getting trained to do it at home and on your schedule. It will be easier for you both than going to a center.
Get tested to see if you can donate a kidney. Then the two of you need to sit down and really talk it out. I bet he has worries too about you donating. Transplant in general is a big decision and has lots of pieces that go into it. Go together and talk to the social worker with your transplant center.
I agree with everything you’ve heard from the others. I’d also add that your BF can be listed for a deceased donor kidney. I received a deceased donor kidney last November. I was not comfortable seeking a living donor specifically due to the possibility that the living donor could someday find their renal function deteriorating. My new kidney is working very well. So, living donors aren’t the only option.
One other thought. After your boy friend receives a kidney, he will need your help with recovery. I’ve had to manage recovery alone as a single person with no family left. It hasn’t been easy. So, there are many ways you’ll be able to support your boy friend through this process.
Finally, I’m a strong believer in living in what I call the “No Guilt Zone.” (Like No Passing Zones on the highways.) We’re human. We do our best, but we’re not perfect. Fortunately God’s got this. Do your research. Search your heart. Talk with your boy friend and daughter about this. Reach a consensus. Then move forward with the plan. And no matter what, No Guilt.
How long did you have to wait for the donor? Yes that would be my worried, if I did donate my kidney who’s going to take care of him? I would need a family member or friend to stay with us.
They had told me they thought I’d receive a kidney in 2 to 2 1/2 years. It was 2 years and 10 months. But this was as COVID peaked. I was waitlisted just a few months before we were in lock down. I’m not sure how that may have effected wait time. Also, I’m in the region with the shortest wait time for deceased donor kidneys. And my blood type is A+ so not the easiest match but not the hardest either.
Those that become living donors are exceptionally courageous and compassionate. But no one should become one without examining all aspects of a given situation. When my hubby went into kidney failure, there was a lot of pressure for our adult children to donate. (I was too old.) I knew they had issues (autoimmune conditions, likelihood of diabetes, lifestyle issues) that over the long run could lead to kidney issues for them. They knew this too, I could see the fear and worry on their faces. Then, looking into it further, I also noticed that kidney donors may not see their remaining kidney completely "take over" the functions of their donated twin. This is one of the reasons why kidney donors are given priority when they, themselves, need a kidney. kffhealthnews.org/news/what... However, complete failure is rare - this is important to note. Yet I, as a caregiver, couldn't see myself living through the anxieties of kidney failure again with yet another family member, particularly since some of my adult children are the only ones providing for their family's income. So we focused on finding a deceased donor kidney and told the centers we would consider one with issues to increase our odds. My hubby received one shortly thereafter - at exactly one year after starting on dialysis. So there is a lot to consider - please take time to evaluate the situation carefully. If the stars align up properly, then you will feel peace and reassurance. If they don't, then there are deceased donor kidneys as well. Both paths are available to you - one can actually work on both avenues (living or deceased donation) if one want to do that - It's not black and white. Throughout, it's very helpful to know which centers have the best statistics for both areas - living or deceased transplants. I've listed two sites below in that regard. We knew we had along wait for a deceased donor at our local center, so we reached out to one further away with a higher number of placements. (If one is already listed at one center, it's quite easy to double list at another.) Sending you all the encouragement in the world that you see your way clear and find peace and acceptance in the process - whether it's donating your own kidney, finding someone else to donate theirs, or finding that deceased donor kidney. They are ALL valid approaches. Sending encouragement and hugs your way!
Please do that. It's very important both of you find a center that performs well. The SRTR site is probably the easiest to use but the other is more detailed. Some centers simply have more volume and higher skilled doctors who know how to "clean up" and preserve decreased donor kidneys, and probably better equipment and protocols to do that. I'm sure you will see your way forward soon.
As far as I am aware anyone donating a kidney is then also classed as CKD. My doctor is asking me to "put the word out" that i need a kidney. I could not do that to someone. At least that is my stance now. I can't say I will always be that brave but I would hope so. Also as Bassetmommer says there is certainly no obligation. It is the sensible decision I would think to look after yourself. You need to be healthy. You need to be there for your daughter and boyfriend. At some stage he will likely get a cadaver kidney. I don't like CKD, I accept it, but would hate to think that i could be responsible for someone else being at risk of it.
These truly are difficult decisions. They must be made individually. I always hope those faced with these decisions are able to reach a sense of peace with the decision the make.
So I’m somewhat confused if stage 4 why the need for a transplant? Not trying to be a jerk just wondering because I’m stage 4 and have been since 1996 with eGFR from 17-22 since and will forgo a transplant (too many comorbities). I understand the concept of preemptive transplant with a living donor, but not sure I understand the must?
Correct. Anyone who donates a kidney is then considered CKD for life. One kidney does not perform as well as two healthy kidneys. However, you don’t need super strength kidneys, just one is fine, unless something happens to make your strength falter. The surgery itself isn’t so bad that I personally wouldn’t endure it for a loved one. Nowadays, they even do them without a 9 inch slice! I’m not bitter as much about that as I was about the drs telling me I would live a normal life. I had a disease, I did not donate, but I really wish they weren't so adamant about my future. They were wrong, but my one kidney is still chugging and I am thankful for that! I do believe medicare in the usa covers dialysis if you should need, doesnt it??? It sure used to!
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