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I would like to ask about experiences with the period of time right before dialysis/transplant is necessary. How was it decided that it was time for this? Were there physical signs? How high was your creatnine and GFR? Did you feel prepared? I know these are probably questions my neph should answer but I just don't feel like I'm getting any answers! Thank you!
Cancer Hysterectomy CellCept Surgery Cyclosporine Plasmapheresis Diabetes Anemia Suicide Dialysis Lasix Pain Edema Metoprolol Depression Stress
Hi! I am waiting for a transplant. I have been placed on the UNOS list and am having family members tested to become a potential donor. My GFR is staying steady at 17. You qualify for a transplant when your GFR is under 20. I am hoping to get a transplant prior to going on dialysis. Studies show better success with transplants for people who have never been on dialysis. My neph always talks to me about what type of dialysis I would prefer. Since I am leaning toward Peritoneal I don't have to worry about catheter placement just yet. However if I chose Hemo he would have my fistula placed now since it takes time to heal, just to be prepared. It is a roller coaster ride and my neph can't tell me how long until I go into stage 5. I am taking my meds and watching diet to try and maintain!
Good luck to you!
Murphy24,
My Dr. told me that I am at a stage 3 at this time. How long did you have from stage 3 to where you are now? Do you feel any differently physically?
Thank you so much for that info Murphy 24. Its really helpful! My GFR is 19 and my neph never talks to me about dialysis, types of dialysis, stages or transplant at all! This really bothers me. I didn't even know that I could be in the UNOS list right now! At least now I know some things to specifically ask my neph. I really appreciate you sharing!
Sometimes I don't know what to ask my neph inregards to my son. They haven't said what his GFR. His BUN got up to 127(creatinine was up to 2.7) and they decided to put him on peritoneal dialysis. He has the catheter in place but hasn't started the dialysis yet. They haven't even talked to us about possible transplants, etc. His tests are looking much better and I wonder if we have to go this far yet. I hope that you get the answers and by looking on this sight I hope we can all find good questions to ask.
Hi, I am at that point right now. My GFR is 13. I have an appointment on thursday to meet with a vascular surgeon to decide where and when to place my access. I am in the process of getting all of the testing done for for a transplant. I should probably meet with the transplant team at hopkin in the next month. They have already cleared my health insurance and we have corresponded back and forth a few times. I find it puzzling as to how much information you have to gather on your own. I practically had a breakdown this past friday because i am so tired and sick and i have to do so much. The past 2 months have been very busy and depressing. I would also like to know how people are feeling. I am so exhausted i can hardly stand my self. I find myself apologizing to my husband all of the time for being so tired.
I feel like i have to get everything perfectly in order at the house and i just can't seem to get it done. I try to set goals but i just am not able to achieve them. I cleaned my kitchen last week. You know the kind of cleaning that includes tearing the whole thing apart and then putting it back together!!! Well i was down for 2 days after that. Couldn't do a thing except shower and make diner. I think alot of this is depression because i honestly can't look forward to what is going to happen.
We saw the neph to-day and after 1 year on cyclosporine Steven's kidneys have gone downhill drastically. His last GFR was 18. She is taking him off the cyclosporine as his protein spilling is still the same. His kidney function just got worse. The next step is another biopsy and then we need to see what happens. In the meantime we are starting with EPO injections once a week as Steven has severe anemia. This will help his fatique. I hope to give him one of my kidneys. We need to be tested for compatability.
Hi SK1,
Please do not try to be cleaning your kitchen when you feel so tired. It only makes you feel worse. I see my husband so fatqued and he was such an active person all his life. It is not your fault that your kidneys don't work properly. Concentrate on getting better and do everything in your power to learn about your disease so you can ask pertinent question of your caregivers. Learn the pros and cons of dialysis versus transplant. We are doing this as well.
Good luck. Also ask if you suffer from anemia (not enough red blood cells) because you may need extra hormone shots (EPO) as well. That would make you feel less tired.
Good luck,
Amelie
Bird Legs,
I can't really tell you how long it took to reach stage 4. I pretty much went from having a 2.0 baseline creatinine at the beginning of this year, and now am around 3.2. I get blood drawn weekly (due to my high potassium) and I haven't been below 3.0 for my creatinine in months. I haven't been anemic however I do get tired quickly. also get nausea in the morning. I am on metoprolol, lasix, sodium bicarb and vit.D. That's it for now! I wish you the best! I do think that if you know where your at physically, do whatever you can with diet/exercise and take your medicine. I think if I knew what I was dealing with at an ealier period of time, I wouldn't be where I'm at now at 32 years old.
Hi Amelia,
Thanks for your post. I am pretty educate to my disease. I have been to several meetings regarding dialysis also. Right now i am gathering all of the information that the transplant center requested and getting referrals and appointments for any tests they need that i haven't had in the past 6 months to a year. The anemia is bad. I started getting ferretin infusions and i am suppose to get EPO shots but insurance has been fighting the whole time and right now i am getting nothing. My doctor just called in something but he doubts that it will help. Sorry to hear that your husband is going down hill. I seems that once that started and i hit the high end of stage 4 it has been very quick to get to the low end and then stage 5. I don't know if it is like that with everyone but that is what happened to me.
Keep in touch and have a good day.
sk1, I think you are correct in acknowledging that depression is a factor in how you are feeling physically. What you are going through is everyone's nightmare; I know it is mine. I am at stage 4 and have been so for at least 5 years; I was diagnosed almost 19 years ago but was never treated. It wasn't until I moved back to the states and went to a new doctor for insurance purposes that I saw how advanced my fsgs was. I was then treated aggressively and am actually doing well. At least I think so; I have my next set of labs next week and then my usual 3-month appt with the neph the following week to discuss the results. Each time I know I have to see him, I get so horribly frightened because I always wonder if this will be the time that he will tell me that it's time for dialysis. I feel fine and I have no edema or anything outwardly apparent that would tell anyone I had such a rotten disease, but I've been surprised by bad news before, and that is a feeling that you never forget.
My worst nightmare is having to go on dialysis. My 81 year old mother is on dialysis as the result of vascular surgery gone awry, and she deals with it far better than I think I ever could. But then again, at 3AM when she is unable to sleep, I imagine that she is depressed that this is her life.
I do not think that there is any neph out there who really thinks about a patient's emotional/psychological state as s/he fights fsgs. I will tell you that the emotional toll on me has been far higher than the physical toll. I feel like my future has been taken from me. My husband likes to talk about retirement plans (we are only in our early 50's), but I can't bear to think about a future that I may not even see.
Five years ago, my doc, upon seeing my test result, immediately sent me to Rush to talk with their pre-transplant team. Ultimately, I was not yet "sick enough" to qualify, but I spent three hours there (it was the day before Thanksgiving; I'll never forget that day), and I remember wondering why it all had to be so very difficult. People who need a transplant are ill and tired and do not need the extra bureaucratic burden. When you next meet with the transplant people, I would beg you to ask them if there is anyone who can help you with all of the pre-planning hooha. My mom has told me that everyone who is on dialysis at her clinic has the clinic's social worker to help sort out bureaucratic details, and I am wondering if a social worker may be a part of your transplant team. Please do ask.
A very important thing that you already have worked out is your insurance. That's a real sticking point for many people, so well done for already having addressed that problem.
I understand exactly why you want your house to be pristine and why you set goals. It's to snatch some modicum of control over your world that you perceive to be wildly lolling about. Having fsgs and having to contemplate dialysis and transplantation make you realize just how little control we often have over our lives, and it is a frightening thing. So you continue doing everything you can to make you feel a bit more in control of your life! It's healthy and natural and necessary. But perhaps you could scale back your ambitions just a tad because I can guarantee you that utter fatigue will exacerbate any depression you feel. Also, if you set goals for yourself that you know you cannot physically reach, you are setting yourself up for failure, and this will again strengthen your depression. So, the trick is to control your environment without adding to your exhaustion. Maybe you can make a list of domestic chores and just choose one to do each day.
You are in my thoughts.
MooseMom,
Thanks so much for your reply. I sobbed while reading it because you understand so well. I also relate to your feelings about when your husband talks about retirement. Mine does also (same age group as you) or he says i wish we could just win a portion of the mega millions and travel. I don't say anything out loud, not even now but i'm thinking maybe i should just set this man free. This is my second marraige and we've only been married 1.8 years and he is healthy as a horse, strong, and from what i know seems to come from excellent stock physically. Emotionally is another story!!! Believe me i have experienced his family and it has been a nightmare. Believe me disfunctional is an understatement.
My husband never quite undstood my illness and quite frankly i don't think anyone did. I didn't look sick, i didn;t feel sick, except for catching every germ i came in contact with which caused me to lose many jobs. That's an another emotional blow!! My eyes used to be pretty and they aren't, my skin used to pretty and it's not and it's aged so much in just a few months.
I meet with a vascular surgeon on thursday. My neph wants my port put in my chest. He says that's for short term because he believes i will get a transplant in 3-4 months. I don't know who he thinks he's kidding because it's not me!!! I have done my homework and the people that want to donate are my girls. I haven't come to terms with that. They have but i have not!!! I have had blood transfusions due to this illness and there are steps you have to take because of that. This is not going to be easy even if i do agree and i doubt very much that i will. FSGS can return and i can't take my childs or anyone else's kidney just to get at the MOST 5 years out of it. It doesn't make sence to me. Do i want to be on dialysis?? No!!
Do you know what i do want?? Is to not deal with this at all. But in the mean time i will try to deal with it the best way i know how.
Thankyou for understanding everything so well. You are so right when you say my home is about the only thing i have control over. But there is just so much to do. We just got done practically gutting portions of this house and re-doing. That has been halted because i have no more energy. Not even for clean up. What a mess my life has turned out to be.
Very long winded i know, but you got it on the nose!!! I am just having a bad day!!
My best to you and i hope your appointment goes well. Take care of yourself and your hubby. You guys will have a future i just know it.!!!!!!
sk1, please do not look to your husband or to anyone else for "understanding". No one who has not experienced fsgs can understand what you feel; that is no fault of theirs, it is merely outside of their experience. If you need loving support, you have your family. If you need "understanding", you have this website that houses many people who, unfortunately, understand all too well.
Dialysis/transplantation is not easy. You are correct that past transfusions make transplantation more problematic, but not impossible. Pre-transplantation strategies (like plasmapheresis) and transplantation techniques have been transformed and probably will continue to surge ahead by leaps and bounds. Unfortunately, the high incidence of diabetes in the US is leading to unprecedented numbers of people on dialysis, and the need for transplantation is growing. The pool of donors is widening quickly due to those new pre-transplatation strategies; donors can now be complete strangers!
You are right that fsgs can affect a transplanted kidney because fsgs is essentially an auto-immune disease, and a new kidney is simply a new target for your wonky immune system. But you know, (and I don't think I am essentially an optimistic person...) there is so much research now into anti-sclerotic medications that it is entirely possible that by the time you get a transplant, your new organ can be protected from the get-go.
You are feeling really overwhelmed, aren't you! I'm not surprised. Let's see....
1. You're sick and tired.
2. You are facing dialysis.
3. You are facing decision-making regarding transplantation.
4. You are facing decision-making regarding your daughters being your donors. There's an emotional minefield right there!
5. Your personal, private refuge (your home) is partially gutted, leaving you without a pleasant place in which to seek solace.
6. You are fighting depression because of items 1-5 listed above.
I'd like to be able to tell you to just take these things one at a time, but I don't honestly know how you can. Your gutted house isn't going to magically repair itself. You need to plan for dialysis and at the same time plan your strategy for future transplantation. Everything is happening so quickly that you must be reeling. But if there is a way to just take one day at a time...a way to break this miasma down into individual components, you might find life just a bit more bearable.
Try to keep your longterm goal in mind. What is that goal? It is to regain your health so that you have many more years with which to enjoy your girls. It will be a long road, no doubt. First, if you need to go on dialysis for a short while, then do it because without it, your life will be greatly shortened. THAT is not your goal. Do everything you can to keep yourself as healthy as possible so that transplantation is a viable option for you. If your girls want to and can donate, let them. Give them the opportunity to ensure that you will be in their lives for as long as possible. They share the same goal as you...to keep you with them for many years to come. A kidney is a small sacrifice to make if the payoff is having a mom who is alive and well. You want to be with them, they want to be with you...it makes all the sense in the world.
I am close to peritoneal dialysis. Went yesterday to vascular surgeon. GFR 17 . I am concerned and scared at the same time. Any one on the peritoneal dialysis for a while and how is it turning out. ?
God bless, Molly B
Again, thanks Murphy24 for your info. My GFR is now 16 and my creatnine 3.7. My kidney function has been rapidly deteriorating in the past few months because of my FSGS-collapsing variant. I'm 36 years old and was diagnosed just after I turned 35. Because I told your info to my neph, he is now referring me to be added to the UNOS list. And MooseMom, I really appreicate you putting into words how so many of us feel. I felt like you were writing from MY heart! It made me feel better to know that all of the feelings of fear for my future and my kids, helplessness, sadness, etc. are normal in this situation. I also need to start researching peritoneal dialysis and I just haven't been able to bear even thinking about it.
Smile213, glad to hear your neph agreed you need to be on the list. Like you, my GFR is continuing to decrease. I just found out this week that neither one of my sisters is a match. I think it is going to be awhile before they find a match for me so I am thankful I got on the list when I did. Now my husband, mom, both brother-in-laws and my father-in-law are in line to be tested. I am praying hard that one of them is a match. However, I have a lot of antibodies d/t pregnancies and previous blood transfusion. I am scared to death of dialysis. Neither one is pleasant and reading statistics about dialysis patients and their health is discouraging. I feel I am too young to be dealing with this! I am sorry you are going through this too but it is nice to talk to someone who can really relate! Would love updates on how you're doing.
I have been on PD since the end of August. The first month is overwhelming and difficult because of all the time in the clinic learning what you have to do and then the time doing it manually during the day. But once you get on the night cycler, it really isn't so bad. And I have to tell you, I went into this kicking and screaming. I did not want dialysis for the life of me. Now I am looking and feeling more like myself. People say that cannot believe I am even sick, I look and feel so much better than I have the past three years. I am still weaker and more fatigued than before my illness, but nothing like I was. Good luck and hang in there.
Well, i went to the vascular surgeon and he did sonagrams on both arms and said that my veins are to small for a natural fistilla. So, now this man that i never met before (as nice as he was) is trying to get me to do at home dialysis. I expressed that i did not want to do it and now i have people from the hospital calling and trying to get me to come in and meet with them so they can convince me to go that way. I Don't want to do that!!!! I am so fed up with nothing going right i could scream. I try to have a good out look on things but all i get is let downs. So now i have to try and decide where on my body i want this thing placed. Anyone have the plastic placed in their arm??? If so what does it look like and what are the chances of infection.
its crazy to hear sooo many different perspectives on the same thing. I agree with a lot that has been said here. I got diagnosed with FSGS in 1992 (noticed some ankle swelling and a few days later was getting biopsied ( a little scarey for a 12 year old) My fsgs progress slowly and i reached the point of dialysis or transplant in 1998 I was luckey enough to have a living donor (my mom) ready to go when the time was right. Unfortunatly, the fsgs started attacking my transplanted kidney within weeks of the transplant. Again i progressed slowly and after a few years once i little to no kidney function left, my neph started talking aboout dialysis. I was so scared and wanted nothing to do with it- my neph didnt push me too hard but i wish he did because by the time i gave in to doing dialysis i was feeling terrible. Also. because i waited so long i had to have a catheter (in the chest) because i had not had a fistula access placed, and didnt realize it took months to mature before it was usuable. I have battled depression for many years but felt too pround to take medication for it. I finally swallowed my pride and am so happy i did. The littlest thing used to bring me to tears, the emotions we uncontrollable, now i feel more positive and happy- and i feel hope instead of despair. No one arround you will never fully understand what you go through and you cant expect them to all they can do is give you love and support. I have been on dialysis for about 6 yearsnow and done all types. I favor home hemo dialysis which i do durring the night while i sleep. I have recently started the process of transplant again. I have always had the fear that the same thing may happen with reoccurence but i feel i'm ready to take that risk. Good Luck to you, nik
The vascular surgeon was talking about placing it in my chest. Where is this placed and what does it look and feel like???? Every bit of research i have done has said that the neck is done on an emergency basis. With any luck i have time for a fistila to heal if they will do the plastic one. What kind did you or do you have?
HI, My grandfather in law had a fistula and also a neck port. He had a lot of trouble with infection with the port. The fistula looks like you have a vein pooping under there but it doesn't look bad. THe catheter fro the peritoneal cather is a tube sticking out of the tummy. I challenge all of you, no matter how tired youare to look at the bright side of things. FOcus on the positive things you have. 100 years ago, people in this conditional suffered as much but with no chance of life. IT's difficult. My son is 5, will be starting dialysis, is on epo shots, and it's difficult. On the other hand, we have him, we love him, we have a home, a God who is carrying us. Let Him carry you too. Don't ask why is he allowing this, or why me? Why not you? Take this time as an opportunity to trust in Him better and know that you will make it. It is frustrating to hear all the different takes on what nephs do or don't do. What is the right way to handle everything? Educate yourself on what is out there. Know what your neph is talking about, and ask questions.
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