Husband is 35 and might have kidney problems

Thank you. We dk what to do. We have heard both side on the biopsy. Some say do it some say dont. We are very nervous. We will be doing the 6month check up regularly. Praying dkr the best. If it gets worse we will eventually do it but as of now we want to wait.

We want to go back and check in Feb. I'm very scare of the unknown. We will definitely do if it contiunes to drop over the 3-6 months. Im very scare. We had some fam memberd who gone through dont recommend it either.

It is definitely scary and stressful when your kidneys start deteriorating. It has helped me a lot to participate in this forum and learn from others who are living with chronic kidney disease.

I'm single and the last person living in my family. So although I have strong support from friends I find that I navigate much of this by myself. Your husband is so fortunate to have you and your support.

But it is still stressful. Please stay in touch. Pose questions. We're all willing to share from our experiences. Your husband's nephrologist and medical team will be your best source for specific information about your husband's condition and treatment. I think of my nephrologist and his staff as my medical team. They're my people🐶

So between your husband's medical team and what you can learn about daily life from those living with chronic kidney disease in forums like this, I'm sure you and your husband will start to adjust to his specific situation. And at this point he does have plenty of renal function.

Thinking nothing but good thought for you both!

Marj

Thank Marj. Idk you but your words of encouragement has helped me. These days Im secretly crying by myself. Thoughts of losing him is too much for me. Crying by myself a lot these days. Can you share your story with me? How you discovered yours? And what keeps you postive and motivate each day? Thanks. I apperciated.

Sure--I'm 64 years old. I was diagnosed with chronic kidney disease (CKD) in November of 2011, about 7 years ago. I was certainly in shock. My father had CKD so I had grown up around this. He actually felt and functioned well for decades. He did what his doctors told him to do and he enjoyed his job and his family. So my earlier impressions of CKD as a child growing up were really fairly positive.

Eventually he was placed on in-home hemodialysis. My mother and I both served as his care providers for the dialysis. Unfortunately he did not have a good experience with dialysis. So my memories of that are very bad. Those memories are very likely Kelly what has caused most of the stress I've experienced with my diagnosis.

I developed Type II diabetes which was not diagnosed. And yes, I have seen a doctor every year of my adult life. But the doctor I was seeing when I developed the diabetic condition turned out to be a bad doctor. He has since lost his license and his practice due to medical negligence malpractice and legal fraud. 

While many patients who encountered him are having more trouble than I am, I'm certainly having some serious problems due to his neglegence. Anyway, I developed CKD as a complication of type II diabetes that was not under treatment. And the real irony is that I control my diabetes with no meds, just diet and exercise. My A1C is consistently well within the normal range none. So had my diabetic condition been diagnosed shortly after it developed I would very likely have minimal difficulty with my kidneys although there is no way to know for sure.

Of course learning about the diabetic condition was a huge shock for me. My first question yo my current primary care physician was, "How are my kidney?" That turned out to be the critical question.

At first my kidneys were still testing alright. I got my A1C into the normal range in three months. Things were going fairly well. Then I had a major gall bladder attack; my first. It was a month before they removed me gall bladder and close to 25 gall stones. During that time I was very sick. I couldn't keep good down nor could I drink water or anything else without vomiting. It was after the surgery that Kemal function deteriorated.

My nephrologist has talked a lot about the extensive vomiting and the electrolyte imbalances it caused for me and the severe dehydration and the extreme low BP it created. He thinks both in combination with what the untreated diabetes did to my kidneys likely lead to the deterioration in my renal function.

Anyway, my creatinine was 1.1 at that point and my eGFR was 51. I was in Stage IIIA. My nephrologist thought I'd be alright as I aged but we'd need to keep an eye on my renal function.

18 months later they were showing more problems. My creatinine was not much worse. My eGFR was also not much worse. My potassium was elevated. I was experiencing fairly severe anemia. And my BP was bouncing around sometimes very low, sometimes very high, and iften suddenly plummeting.

My current nephrologist began working with me full time by August of 2013. By that time my creatinine had deteriorated considerably and my eGFR had deteriorated to 15. And my anemia had become severe and required regular EPO injections. With regular treatment my nephrologist was able to improve my renal function. My creatinine improved from 3.2 to 1.7 and my eGFR improved from 15 to 32. I was back into low Stage IIIB. My nephrologist was able to stavleize my renal function at that level for several years.

LAST November I developed walking pneumonia. By the time I recovered there had been another major deterioration in my renal function. I was suddenly in Stage V renal failure. I have been in renal failure ever since until I saw a university nephrologist last Aug who figured out what to do to improve my really low BP.

Again my renal function has improved some. My creatinine is now back up to 3.2 with an eGFR of 15. So I'm now back to very low Stage IV.

I'm finally last all the anger I've experienced regarding the malpractice, negligence, and fraud. I'm also finally able to trust my current medical team. But perhaps most important, I've finally decided exactly what I want to do for treatment as I move into renal failure. I'm going yonputlrsue PD dialysis. I hope it will work for me. And I'm thankful that there is a treatment option I can administer independently at home that will also allow me to keep working. (I'm a university professor and want very much to keep teaching.)

So, I've gone a long way with the stress and anxiety but it has taken me some time. I appear to be in fairly good health otherwise as strange as that may seem. My treatment plan has me feeling and functioning well. I'm thankful for all of this.

Most importantly, I'm at peace. In many ways this has changed me. But fundamentally I'm still the same person.

So that's my lengthy story🐶

You and your husband will get this figured out. You'll make your decisions and write your own story🐶🐶

Marj

Thanks Marj. Your story is so inspirational. You gone through so much by yourself. That proves how strong you are. I just dont know if I have lived such a comfortable life that I have taken everything for granted. I'm just very afraid of the timing. Idk how rapidly things can change. Thats my biggest fear. My husband is taking everything well not panicking. Im the only one whos going crazy here. Since he dont have hypertension or diabetes he's been exercising and eating more healthy. Just dk if we need medications to help the protein from leaking too much. Just dk if the specialist will give us any since we say no to the biopsy. We dk what else more we can do to improve his chances. His mom just started medications for diabetes and hypertension for a couple years now. His dad passed away from heart attack 10 years ago. Idk why theres proteins just dk dk why it like this.

The specialist will definitely still do what he or she thinks is in your husband's best interest whether he chooses to have the biopsy or not.

I have found that it helps me a lot to learn as much as I can about all of this and how CKD is presenting in me specifically. That helps calm me down.

So o ho to appointments with questions. I ask them to help me understand my data, etc. I've also reached out to reputable attention support groups like the National Kidney Foundation. I do some research online but only reputable web sites like the Mayo Clinic web site.

However, it is my nephrologist and his medical team who are my primary dorce of information. When they seem to be stuck or confused about my case I ask if it's time to seek out another opinion. Reputable doctors are always supportive of that--they too want to be sure their patients are getting the best care possible. My regular nephrologist wasn't able to get my really low BP up into a better range. So he referred me to a nephrologist with expertise specifically in low blood pressure and sodium imbalance situations. My BP is now in my better range.

My current nephrologist is as excited about this improvement as I am.

From this discussion forum I get ideas from others regarding how they're managing all of this. I learn a lot about how they keep working. It becomes clear that life does go on and it can be a very good life. They are honest and share the challenges they've encountered and what their medical teams have done to resolve those challenges.

CKD is part of my new normal. So it is really good to see how others are coping. It helps all to seem more more doable to me. Clearly there will be challenges. But I'm sure I'll be able to resolve them. I just have to work with my medical team.

I've only hit an eGFR of 15 with severe anemia. And yet I'm feeling quite well. I'm still working at full speed which for me is s 50 hour a week job that involves a fair amount of travel to present findings from my own research studies, grant meetings, etc. I'm also a professor in a graduate special education program as well as an administrator,department chairperson.

I wouldn't be able to do this job without effective treatment. I'll be tested after the New Year to see if I'm eligible for s kidney transplant. I'm just taking this one step at a time. First see if I even qualify for a transplant. Then decide if I'll pursue that treatment option. 

I've made the decision about which dialysis I'll try when the time comes. So information has been critical for me--and working with my nephrologist until we got an effective treatment plan in place.

But this has been going on for me since November of 2011. It's taken me several years to get to this place emotionally. Consequently I'm really relieved to finally be st peace with everything.

One step at a time--small steps. Gradual learning about your husband's renal situation. Work with his medical team--ask what, specifically you and your husband can go to supporand preserve his renal function as long as possible. And then try no to worry too much. Right now he has lots of renal function. So take time to enjoy life--that's part of what his nephrologist will want you both doing too🐶

Marj

We left the appt saying we will let her know what we thought about the biopsy. So we currently have no schedule going back. She just told us if we dont trust her then go to a different place but its just that we need time to think and let it sink in. We did ask her if we dont do the biopsy whats our next choice. She just told us that she will start us on some kind of high blood pressure medicine (even though no hypertension) to help the protien from leaking so much. I guess if we did ever go back it would be for that only for now. How rapidly did your egfr go down on its own other than the other factor? I really appericate you sharing your story with me. We have small children and one on the way so Im trying to cope and enjoy life. But I often find myself online looking for answers sometimes it does more damage then help.

It's my understanding that the deterioration of renal function can vary considerably from case to case. She likely wants to do the biopsy so she can know exactly what's happening in your husband's case. Without that information it will be difficult for her to accurately answer many of your questions.

Since your husband doesn't have either hypertension or diabetes, the two most common causes of renal problems, she's trying to verify what is causing the change in his renal function.  That's why she's recommending the biopsy.

It is fairly common to put patients with renal problems on a blood pressure medication even if they don't have hypertension. In cases like that it is usually a low dose of BP medication, I think.

What does your husband's primary care physician recommend at this point? Also, I'm sure this nephrologist would be willing to see your husband again if he would choose to pursue that option. And, you can ask your primary care physician to refer you to another nephrologist (if there is one in your area) for a second opinion. My health insurance allows me to seek out specialists without doctor referral but that often means a longer wait time than would occur with a doctor's referral.

In the meantime it is always a good idea to follow a low sodium and low fat diet, eat a healthy diet and exercise--which it sounds like your husband is doing.

I definitely had major issues trusting doctors after running into the malpractice, negligence, and fraud situation. So I understand gompletely how difficult it can be to trust the doctor. And it is imperative to find a doctor you can trust.

Some of what your describing seems to be related to not understanding what's going on--it sounds like you just need answers and a clear course of action. You may need to seek out another doctor. Hearing the same information from 2 specialists helped me begin to calm down. It also helped me begin to learn more about my CKD and what I could do, specifically to try to support my remaining renal function. 

The rest has just taken time; time for me to wrap my brain around my situation; time to move past the anxiety related to the medical malpractice and negligence; and time to get a workable treatment plan in place. It's just a major adjustment.

Marj

Marj,

Since youe egfr is at 15. How do you feel daily? Do you feel tired? Or do you feel normal? Honestly we are so young that I feel like why do we have to worry about it now. Why not 50 years from now???? I mean why cant we live until old age then worry about this. I feel like its unfair. Our dr just say she agrees with the nephrologist too. The dr say the creatinine levels also depends on how hydrate you are so Im thinking my husband gfr might be higher than 84. Idk just feel lost. Trying to keep positive but its also eating me alive.

I'm feeling much better now than I did when my eGFR was at 30 and my creatinine was much lower--about 2.0.

My nephrologist wasn't sure why I was feeling so poorly when I was in very low Stage IIIB.

It has become clear over the past 6 months that I was feeling very poorly due to my very low BP which is now in much better range and my severe anemia which was under treatment but it was not treated as effectively as it is now.

So incredibly enough I'm actually feeling considerably better now with much less renal function that have have since the summer of 2013.

It has just taken wuite a lot of time to get my treatment plan figured out. This CKD foes present differently across patients. So it can be tricky to get an effective treatment plan in place.

I do think that getting myself totally calmed down has helped a lot yoo. I'm finally at peace with all of this. Frankly, that took many years o think in great part because I was one of numerous patients who was worse off medically due to the legal negligence, malpractice, and fraud I encountered with that physician who has since lost his license and his practice.

Unfortunately there is nothing my current doctors can do to reverse the damage that poor doctor created. But I want to be clear here; I'm sure I would be dealing with Type II diabetes regardless of the poor medical care. I just realize that I would very likely not be dealing with these other complications. Given my family history I would very likely have easily developed CKD as a completely cation of my diabetes. But it would like be much less severe--Stage II. And I very likely would reach and of life without dialysis.

So in my case the very poor medical care--really no medical care--just greatly worsened my case and significantly decreased my quality of life. It will probably also shorten my life.

I've had a real problem trusting other medical care providers. Thankfully I seem to finally be past that. And I'm finally past being do angry-/anger was such a constant companion for me for the first several years of this mess.

Do I wish this hadn't happened? Of course I do! Do I think it's fair? Of course I don't! Do I realize that I would be dealing with manageable chronic conditions had I not encountered the doctor who lost his license? Of course o do. But I can't change any of these issues. It goes me no good to dwell on them.

So I've focused on what I can control. I've learned as much as I can. I'm definitrly in charge of all my medical care. I've become quite the expert in regard to understanding both my medical insurance and how to navigate the maze of our medical community. The more I understaood the calmer o became. The more I got involved in my medical care the calmer I became.

I finally reached a point where I realized that while this has changed me dramatically, I'm still, at the most fundamental level, who I have always been. I've re-engaged I. The research I do as s university faculty member. I'm gradually regaining the strength I've lost.

Basically, I'm rebuilding my life within the context of severe renal failure. I'm finding I can live with this and live well with it. I just need to make accommodations. I'm a special education profesdor--my entire professional life has focused on developing teaching strategies and teaching activities that accommodate the ways children with autism learn. 

It's now time for me to make these accommodations, with the help of my medical team members, to maximize what I can do. Is it different? Absolutely! Is it possible to live well this way? I'm convinced it is! Will this shorten my life? Very likely so. But can my life be worthwhile? Absolutely--that's a mental battle. That's something I intend to run. (Although I will say that when my potassium elevates snd/or my anemia gets bad, is foes effect my thinking🐶

I've no doubt that you and your husband will find your way. You need to give yourselves some time to adjust.

Marj

Sorry for all the typod🐶

Are you able to work regularly like you use to?

Yes, just a little slower pace. So it takes me longer to grade your students papers, for instance. I don't give as many research presentations. But I was able to serve as a delegate from the United States at an international autism Congress in September of 2017. I travelled to/from with just a little help navigating the surports. I was pretty weak at that point. Today o vouldbprobsbly hanfle the airports without help.

I've had to make a lot of accommodations at home. I now cook onlynon the weekends. I have to be sure I spread my home chores out throughout the week. Work takes priority during the week. Laundry and stuff like that is a priority on the weekend.

For me, living alone, I just find myself having to balance everything--really stick to a schedule. And I have back-up plans I use when I'm not feeling well, e.g., I have a house keeper who will come on call when I'm not feeling well. My pharmacist will deliver meds if I'm not feeling well--the grocery store is the same. I also have a group of friends who jump in as needed.

The international autism Congress was in Scotland.

I've also written and am currently directing a large federal grant to prepare graduate level special educators. I'm still writing and publishing. I'm still lecturing and so forth. Fortunately my job isn't very demanding physically. That has helped a lot.

What does your husband do?