Hello all, I think I’m posting to seek comfort as I sit in my car filled with Un easy anxiety. My husband has a blood test on Thursday and then an appointment with nephrologist on Halloween. We have not had a lab draw since January and I’m scared of what the results of this one may bring. I’m scared his GFR will be dramatically down. He seems okay healthy working and active. He is 33 and has IGA nephropathy. Last visit resulted in gfr of 38. I’m scared that this number will shoot down. Any advice or comfort is welcomed. As a spouse watching your S\O health with no control over it is gut wrenching. We are at the beginning of our lives and I’m scared what the future may have in store. I think I’m reaching out to all you warriors because every time it’s appointment time I feel defeated I want to be positive I want to think that maybe this number can even improve but optimism is low. Thank you for the support.
Blood test on Thursday : Hello all, I think I... - Kidney Disease
Blood test on Thursday
I hope you have good results and waiting is so hard. I know I had 38 then few months later 42 and now last draw it was 51 ? I dk
I pray your anxiety goes away soon it’s not a picnic for sure … best wishes
Reading your post, I also felt your angst over this situation. It’s difficult to take care of ourselves, let alone someone we love. The best thing your S/O can do for himself in the meantime is to devote time to good nutrition and suitable exercise. Your support will mean everything. I increased my GFR from 24-25 to 32 in 3-4 months time, following guidelines to keep sodium, potassium and phosphorus levels in check. I also lost quite a bit of weight, because I needed to. I have a lot of empathy for you both, and wish you the best!
We have all been there. Sometimes the worry just consumes us. You are having one of those days. It's okay to be frightened and worried, you are both human. My advice to anyone on this blasted journey, is to take it one day at a time. Fingers crossed it is good news and his results have improved. If its not, then have a good cry and feel sorry for yourselves. Then you pick yourselves up and get on with what needs doing. Sorry if I sound brutal but it's the only way. Many things on this journey resembles big mountains, which seem impossible to pass. However you always workout a way to get up or around the dam thing. Usually it's small but determined steps. I totally get where you are coming from regarding your age. I was diagnosed in early 40s, although I have been ill for many years before..just didn't realise 😳. Do not let this illness defy your plans. It might not be the journey you were hoping for. It can still however create a good life. It's okay to have down days but keep going. You are stronger than you think. Keep going and sending you a big hug xxxx
I'll echo ziggy's post...I used to do ultramarathons and have "Relentless Forward Progress" tattooed on my arm. It reminds me when I ran to just keep moving forward. It works ever so well for daily life.
Brief overview of my life so far. I'm 59, turning 60 in December so quite a bit older than you but I feel younger. I had uncontrolled high BP and used NSAIDS and that caused my kidney failure. In Jan 2023 I had a catheter for peritoneal dialysis placed. That worked well and I continued working. Until it didn't in July. I spent Aug and Sept in the hospital and ended up with a chest catheter for hemodialysis.
At first I hated it but it cleared up the problems PD was causing and I got my appetite back. I go in center 3 days a week and feel so much better. I'm back working again. I lost a lot of weight in the hospital so I need to gain 10-15 pounds to get back on the transplant list. Since I'm hungry all the time now I'm hoping it doesn't take long.
I tell you this so you can understand while there are challenges in life your attitude determines whether you have rainy days or sunshine. It's the unknown that is scary so I'd suggest you research and learn all you can. Ask for help and this is a great community.
I, too, am spouse to a wonderful man. I, too, am the anxious one in the relationship. So my interest is in how you can help yourself, in particular, and your man to handle outcomes. FSGS is an autoimmune disorder and, other than medical treatments, the outcome is difficult, if not impossible, to influence at the personal level. I pray your doctor(s) have access to the latest and greatest medical treatments available. My husband, a diabetic, managed to slow progression for a bit, then lost the battle. He went on dialysis and later received a transplant. There was a point when I suddenly realized that people can indeed live without kidneys! Relief! Modern technology has made that possible. I also had a one-on-one discussion with my primary doctor who listened sympathetically and offered me a sleep aid and therapists. (Didn't use either, although I skill keep the sleep aid med in my cabinet-just in case.) I found that all of this settled me to come up with a "game plan" to address the boogeymen hiding in the lab reports. I researched everything - from dialysis treatments to transplant centers. When I received word that dialysis was a possibility - I already knew the types. When I was told the best option for living well was a transplant, I worked on finding the best cancer centers. I also began going to doctor's appointments and asked question. (Yes, the doctors will welcome you.) Interesting, my husband was very relieved and appreciative and thankful for my support in this way. All of this happened over a period of four years or so - a few years of late stage CKD, a year of dialysis, followed by transplant. He's doing very well now and still working part time - as a retiree. Your husband is young. You and he have a promising future ahead of you. Please keep in mind that if his eGFR falls to 20, he can start the process for getting a transplant early and possibly bypass dialysis completely. (Some, over a lifetime, receive multiple transplants.) You and he can continue with interests, careers, and more - when there are things in place. And, in your hubby's favor, he and you will benefit as science and technology moves forward - sometimes at a startling quick pace. Please reach out if/when you want information on various subjects - personal experiences and links are available. In the meantime, remember to live each day fully -it's important keep a firm hand on one's mind so it doesn't rule over one with fearful projections. Hugs from me to you! We're all in this together!
Just “PRAY” 🙏🏻 God has this, turn it over and do your part. Worry does not help and just steals your joy. I know it is easy to say and hard to do.
You are young live your life and enjoy it everyday. Think of this as a reminder so many take for granted to appreciate everyday. Turn it to a gift instead of a burden. Nobody really has control or good health. It is a mind set and for anyone it can change at any point in time. None of us know when we will be called to our new home with eternal life.
So live in the moment EVEERYDAY is the gift!
I am really on the edge now.
Has any one had this test before Cystatin C /Cystain 3
Has anyone waited for dialysis with a gfr if 6
newly diagnosed
