I guess I'm just looking for support and people to tell me they have been there and have come back. It really hit me yesterday when we were putting up the x-mas tree and all I could think about is this could be my last holiday with my family. I have very young kids 2 6 years and a 20 month old. I'm afraid of the toll its taking on my family both mentally and financially. my kids have a hard time wondering why mommy is sick all the time. I guess I just need to hear about people who have gone through dialysis and/or a transplant and their lives have gotten back to normal or as normal as it can get.
The following 2 users give hugs of support to: dallascartee meersee (12-07-2010), sweetfemale (12-05-2010)
Re: 30 year old mother of 3 in stage 4 renal failure
Hello! I'm so sorry you are going through this, I know how incredibly scary and stressful it can be. My husband went into renal failure earlier this year. He was on Hemodialysis three days a week for 5 hours at a time, then he tried peritoneal dialysis at home. Throughout this process it felt as if our lives would never be the same. Our lives consisted of dialysis and unanswered questions of what will be. He was tired all the time, achy, weak, and often felt sick. I worried about everything he did, ate, and drank. Then he got a transplant which went smoothly. Not too long after the transplant did he start to feel better. It is now December, and he is a new man. His energy level is back up, he feels good, he looks great. The only difference from before is that he must take his medicine everyday. He can eat and drink as he did before. Most days I don't even think about everything we went through, because it seems like a distant memory (or nightmare). It feels like a new lease on life. So hang in there, there is light at the end of the tunnel. Sending lots of love and prayers your way. Please feel free to ask if you have any other questions!
Last edited by meersee; 12-07-2010 at 05:39 PM.
The following user gives a hug of support to meersee: Divawriter (12-30-2010)
Re: 30 year old mother of 3 in stage 4 renal failure
Thank you for your response oddly knowing that other people have been through the same thing and made it to the other side in one piece gives me hope and a strange sense of comfort. I feel kind of alone there doesn't seem to be any chat rooms on this sort of thing I feel like a burden to my family when I try to talk to them the doctors never seem to have enough time so thank you for taking the time to tell me about your husband and I am happy to hear he is doing so well you guys have been blessed. I do have a few questions if you wouldn't mind me asking. Did your husband have a lot of pain in his back? I do some days are worse then others and they do give me meds for that along with all the other stuff I have to take but somedays nothing seems to help. Did he have days were he couldn't keep anything down? I have changed my diet the way the doctors told me to and I limit my fluid intake as well but I have days where I can't even keep a sip of water down and again they give me meds for that but they don't seem to help on those days. How did he get a donor so quickly? I was told unless I find a family member or friend who is a match and even being placed high on the list due to my age and need it could take a very long time. I have been doing a lot of research on donation and the stats are very depressing so many people on the list and not enough donors. 1 last question, after the transplant how long before he felt human again? Again thank you for taking the time to talk to me and I pray your husband continues to do so well it sounds like he has a great supportive wife who will make sure he does.
Re: 30 year old mother of 3 in stage 4 renal failure
I understand how you feel, i felt the same way going through this. It always helped to talk to someone who's been there. His renal failure was rapid, so his situation was a little different than yours. We had no warning that it was coming. Everything being fine then he was in acute renal failure...then end stage within a matter of weeks. A friend of ours donated to him. They were a match. If you have someone who is willing to donate to you, it may not matter if they are a match or not. If you have a live donor that is not a match, they can do a possible trade. For example, if you are a B and your donor is an A blood type you are not a match. They could find another kidney patient that is and A but has an B donor. (with everyone's permission) they can do a swap. It wasn't long after transplant that he started feeling better. He says felt almost completely back to himself after about 8 weeks. My suggestion would be to put yourself on that list asap, and in the mean time see who of your family and friends would be willing to at least get tested. I think people don't realize the severity of it because they decide that you can still live on dialysis. Explain to them that you will eventually need dialysis, and that life expectancy is double with a kidney vs. dialysis. Our donor was out of the hospital the next day. The donors other kidney will enlarge and take over the function for both kidneys. Also, if the donor ever has an issue with their other kidney in their lifetime (rare), they are automatically put on the top of the donor list. Good luck with everything, you are in our prayers.
Re: 30 year old mother of 3 in stage 4 renal failure
Dallas, I just read your post from a couple weeks ago- it is now Dec 30th. I hope the advice given my the other writer helped! Please check out peritoneal dialysis. I just wrote some comments about my experience on another thread entitled "Close to Dialysis and Scared." I urge you to read it. And I pray my experience will help overcome your fears.
May G-d bless and strengthen you in your time of need. It's gonna be allright! Believe it. (Ps. I can also relate to the throwing up part. I know that misery too well) But it has gotten much better now!! Hope you see this.
Re: 30 year old mother of 3 in stage 4 renal failure
Peritoneal Dialysis is supposed to be much easier on the body. It can also free up your day/time, because you could do it at night. There are wonderful benefits to PD, but it could also come with its own risks. Definitely do some research on both! If you are still around these boards, please let us know how you are doing!
Re: 30 year old mother of 3 in stage 4 renal failure
I was in stage 4 renal failure about 5 years ago, wondering if I'd ever work again. They assured me I wasn't going to die (I probably had something different from you). I know how tired and hopeless it feels. Fortunately they were able to reverse the damage, and now I'm permanently in stage 3, very stable.
The good thing about kidneys is that you can survive on dialysis for several years, and that gives you that much more time to find a donor. I've known people who've had kidney transplants and it changed their lives. There is so much hope for you - just hold onto that! And get plenty of rest. I predict you will live to see your grandchildren graduate from college.
Re: 30 year old mother of 3 in stage 4 renal failure
I have been living with kidney failure for 7 years now, without dialysis. My GFR has been holding at about 25 all this time, stage 4 as well. I am a parent as well, and your thoughts have all gone through my head a thousand times.
My advice to you is to focus on every day, and do all you can to enjoy your children and keep yourself feeling your best, whatever you have to do.
My kidney failure was brought on by 4 strokes, so I have been recovering from both for all these years. When the new year came, I celebrated that I have made it this long without dialysis, but when that time comes, I will handle it then.
Feel free to keep posting, it always helps to have others to relate to. You are not alone, and we are always here to listen and offer our support.
Re: 30 year old mother of 3 in stage 4 renal failure
I have a few questions about his friend that donated to him....My dad is in stage 5 kidney faliure...it slowly happened over 6-8 months...I am going to Try to donate him one of mine...and I was wonder what the recovery was like...well the whole thing really...I think out of the whole family it has been the hardest on me..I'm a daddy's girl...my mom beat me growing up, and my dad has always been the 1 to come save me, from everything, the only one that ALWAYS been there for me..I wouldn't be as far as I am now without him...And if I lost him I don't know if I would be able to function...At first, I didnt ask to many questions about it, because he either didnt know how bad it was or didnt want anyone to worry...but 1 day I was dropped my step mom off, and she was on the phone and I looked on the table and saw papers for dialysis...She got off the phone and I was just about in tears...I asked her, does my dad need to be on dialysis..she said..that's something your going to have to talk to your dad about..I stated balling.....The only person I ever knew on dialysis was my friends uncle, and he was only on dialysis for a year or 2 and he passed...I knew right then and there that I wanted to donate him one of my kidney's if I could...He has since told me that because I am his daughter that I am a 3/6 point match...and Ever since I brought him to the hospital...My stress has been outrageous...I can't lose him...but I am still a little scared about the transplant...he has 4 appts this month for tests to make sure he can go threw a transplant...then that's when they are going to start testing me...I am scared..I hate hospitals, I had C-Section with both of my kids and had complications after my 2nd.. I had needles and I am afraid my recovery will be very slow...My scar from the C-sections didnt fully heal for 4 yrs-still tender to the touch...and my son is almost 6...I just started school and I am just scared...I haven't really talked to anyone about it because I burst into tears when I even think that I might lose my dad...and I dont like crying in front of people... I know with out a doubt no matter how scared I am or How much pain it is going to cause me...I will give him my kidney of I am a match...But my dad told me...if I am not a 6/6 match that he doesnt want me to lose a kidney if it might not work...I don't know what I would do without him...The stress of not knowing if I am a match has been eating me up inside..I try not to think about it...but I go to school with my step mom, and she broke her leg, So i get a ride with her to school to push her to some classes, and my dad is normally the one driving us...and it is starting to get unbareable...he goes to dialysis MWF and works --he was workin 4 days a week, but SSI made him drop down to about 10hr/wk...but he is always drained and crabby cuz dialysis and he gets cramps in his hands and feet..he is on like 12 different prescriptions....he changed his diet.. his whole Life has changed in the last 6 months...And everytime I see him I want to cry, I hate to have to see him in so much pain..he doesnt take his pain pills, doesnt like them, I have had to go to his house a few times to go get his meds and cook him lunch because he was in so much pain he couldnt even get up...All of last year(and now) I have barely had any liquar, I have been making sure not to take pills of any kind..I don't want to ruin my kidneys anymore then I have in the last 10 yrs...before I have the chance to give him 1... ...Well thank all of you for reading..This was Really good for me to vent..It's been killing me ...So if anyone can give me some insight about Giving a kidney that would be Great..Thank you
Lauren
Re: 30 year old mother of 3 in stage 4 renal failure
Quote:
Originally Posted by dallascartee
I guess I'm just looking for support and people to tell me they have been there and have come back. It really hit me yesterday when we were putting up the x-mas tree and all I could think about is this could be my last holiday with my family. I have very young kids 2 6 years and a 20 month old. I'm afraid of the toll its taking on my family both mentally and financially. my kids have a hard time wondering why mommy is sick all the time. I guess I just need to hear about people who have gone through dialysis and/or a transplant and their lives have gotten back to normal or as normal as it can get.
I AM 59 & HAVE BEEN ON ALMOST 4 YRS. A GUY IN MY UNIT HAS BEEN ON ALMOST 20 YRS. I TOO AM ON A TRANSPLANT LIST. DON"T GIVE UP, JUST KEEP TAKING YOUR TREATMENT & TURN YOUR EYES TO THE LORD.
Re: 30 year old mother of 3 in stage 4 renal failure
Giggles,
It hurts to hear all the pain and fear in your words, I am so sorry for all that you are going through, while trying to do the best for your dad.
As hard as this may be, the best thing you can do for yourself and your family is to take one day at at time, and stay right in each minute of every day. Do your best to remain positive, as it is a powerful healing tool. I am sure the last thing your father wants is to have you falling to pieces about his medical problems.
Now, I know this is not easy, when you love your dad so very much. He is a lucky man to have a daughter like yourself on his side.
Make use of this board to vent your feelings, it is safe and usually very healing to just let it all out when you need to. We encourage that. You are not alone, and there is a big family here to support you and remind you of that anytime you need it.
I am sorry that I do not have the answers to your questions about the impact of kidney donation on the giver...you might try the American Kidney Foundation- they have a wealth of information about all aspects of kidney disease.
Re: 30 year old mother of 3 in stage 4 renal failure
I've missed most of this thread, but I will touch on Writeleft's reference to impact on the donor. I read the donor package for my cousin and it is quite a safe procedure. It is a surgery, I won't minimize that, but I can't remember the last time someone passed donating a kidney. 20 years or so maybe? What I can tell you is that studies have shown that donors are generally happier people than the rest of the population. A woman donating should either wait a year to have a baby or wait for a year after a baby to donate, but donation does not affect the ability to get pregnant or carry to term. I know many donors and all are fine and happy. Check with your transplant center and see what is contained in their donor information.
