Update--better or at least less bad - Kidney Disease

Kidney Disease

11,038 members4,776 posts

Update--better or at least less bad

Uke_it_up profile image
5 Replies

A couple of days mentally processing stuff has calmed my mind some. Not totally, but some. It's easy to slip back into denial when I'm feeling fine (no symptoms, which is often the case). There's some kind of balance that I'll need to find between denying things completely and an appropriate level of disconnectedness to allow less emotional thinking. Obviously this is a bad time to make big decisions and I'm fortunate to have a stable job, family, awesome girlfriend, etc.

Definitely ongoing death anxiety, which is a real shock to me. I've pretty much been happy-go-lucky and not worried too much about that stuff. I'm not that old (40's) and IGAN diagnosis makes the idea that my remaining years are limited much more real and at the same time impossible to believe.

Like many I'll be seeing family during Thanksgiving holidays and can give them updates. It's all so new and there are plenty of friends who know nothing at all and I'm not sure how to best update people. I don't feel like a public post on Facebook or similar is a good idea at this time at least, for fear of things like future job or other discrimination. Having/keeping medical insurance is paramount, obviously. My work is office-type and I haven't had any issues that would require sharing more details with my boss than "I've got an ongoing medical issue that will mean long lunches for appointments every few weeks" and I think that will do for now. Again, I'm extremely fortunate and lucky to have that flexibility

Written by
Uke_it_up profile image
Uke_it_up
To view profiles and participate in discussions please or .
5 Replies

Sounds like you have some things under control and a plan for other things. However, the death anxiety comment leaves some questions. Is your concern about death related to this other ongoing health issue? I hope it's not because of the CKD diagnosis. If it is, you have been misinformed. CKD is not a death sentence. While there is no cure there are many things you can do to slow the progression. How diligent you are will determine to a large extent how successful you will be and therefore how long you will be able to put off either dialysis or transplantation or both.

This time of year can be difficult for some folks because of family gatherings and the emphasis on food, (big meals) and binge eating. You need to begin immediately to get control of your eating and not put things off until the new year.

Inform your family that you are limited to what you can eat and they should understand. The physician who gave you the diagnosis should have given you some idea as to what foods to avoid. Smoking is out and if you drink alcohol, cut way back. Initially, what needs to be controlled is your intake of sodium, phosphorus, potassium, protein, and calcium.

You can go to the davita.com website and register for a free, 90-minute Kidney Smart class in your area. If you aren't in the USA, go to kidneyschool.org and watch the modules and learn what you need to know to contain the issues.

If you don't have a nephrologist, ask for a referral to see one to help determine the cause of your CKD and the other steps you need to take to stay healthier longer. The kidney doctor will be able to provide you with a referral to meet with a Renal Dietitian. Bring your last years' worth of labs with you and together you can develop a kidney-friendly meal plan.

This isn't a diet, but rather a lifestyle change. Take this seriously and don't put it off.

Bassetmommer profile image
BassetmommerNKF Ambassador

Hi Uke,

I want to congratulate you for being a Kidney Warrior. And just like any one who is this battle, we do not have to wear our shields every day. So I would not recommend you posting something public on Facebook, or other social media. First of all, you could be hacked and there are people who you may not want to know your business. And speaking of business, I would not disclose to your employer about your health...just yet. In the future, if you need to, you can file FLMA for protection if you need to take a lot of time off. FLMA can be filed even for appointments and medical treatment even if you are not take large clumps of time off. It just ensures you cannot be fired.

People react to the diagnoses differently. And just like you, you may find people will be confused and upset. Once you say I have chronic kidney disease, many people jump to dialysis. I am selective in who knows about my condition. I am retired, so I do not have to deal with work. But I am active on many Boards and so I keep a low profile on social media. It is not that I am embarrassed or ashamed, just the opposite. I feel strongly that my condition does not define me and so I do not use it as a descriptor about myself. (Unless I am working or socializing with other kidney patients.) When dealing with my family, I share with who I know can handle the information. I also do not get upset when I am telling anyone. I am matter of fact that this is what is going on and people react much calmer. And as far as explaining my diet to people, in most cases I do not. I do not ever feel I need to explain to people what I eat and being a large woman, I am very defiant about my food consumption not being open to public discussion. I have been like that my whole adult life.

So good luck with all of this. I hope this was helpful.

orangecity41 profile image
orangecity41NKF Ambassador in reply to Bassetmommer

Agree with your statement that kidney disease does not define us. Admittedly it is shock to get the diagnosis. Once we get past it and accept it, we can modify our diet and life as needed.

WYOAnne profile image
WYOAnneNKF Ambassador

Mr_Kidney offers a lot of good advice and for you to learn more about CKD. Knowledge is powerful and makes this whole journey less frightening.

Yes, please don't think that a CKD diagnosis is a death sentence! I was in my 40's when I was diagnosed with FSGS. I had a transplant 6 years later and here I am 20 years later living strong.

There is so much more they know today about your diet and how it can stabilize your disease. Also make sure your blood pressure is kept under control.

With family gatherings this time of year, I would advise you to tell them of your new health issue. I come from a large family and I told a couple of relatives I am close to. Sometime later, I think they all knew. 2 of my cousins, along with a niece and nephew had told me they would give me a kidney.

Be diligent with learning more about your CKD and changing your lifestyle/diet.

A positive attitude makes this all easier!

We are here if you have questions.

Jayhawker profile image
Jayhawker

I, too, am still working full time. Like you, I’ve chosen not to tell my employer about my CKD. I’m in Stage V renal failure at this point. I’m still not on dialysis (I’ve been in renal failure since January of 2017 but my creatinine has improved to 2.8-3.0 with eGFR of 15-17; although, I’ve not been restated to Stage IV).

My medical team has worked hard to keep me up and running. They know how much I enjoy my job as well as how critical it is for me to keep my medical insurance in place. Since I work primarily from home, I’ve been able to navigate the numerous appointments related to my health without the need to miss work-related activities. I realize that I’m incredibly fortunate to have the job I’ve got.

However, having chosen to handle my CKD this way, I definitely don’t post anything about it on social media. In my case I’m fairly sure I would experience job discrimination related to my health at my place of employment. Of course, I would be able to counter that with help from the state ADA office. However, I don’t need that additional stress in my life. Consequently, I’ve chosen to keep this quiet until such point in time that I will need to inform my employer. And, when that day comes, I’ll work through our HR department with a case manager overseeing my case from our state ADA office to “help” my employer confirm with federal laws and so forth.

And for me, I needed time to wrap my brain around the diagnosis, adjust to my new reality, before I shared much with others. When I was comfortable, I began sharing my situation with close friends. (I’m the last person living in my family...) I’ve found that some friends more or less run for the hills upon hearing information like this while others step up to the plate and are all in to support me. The remainder fall in between.

It’s terribly important to me to have a support team. I so appreciate those who are there for me; perhaps even more so as I have no family left at this point. But I do find that others traveling this same road often provide the best support. They absolutely understand what I’m going through.

On a personal level, I refuse to give up. In spite of everything, I find that I remain optimistic overall. I’m just guardedly optimistic these days. I work hard to learn as much as possible. I certainly do my best to work with my medical team and take care of myself at home. I find that I hope for the best even as I prepare for any outcome.

But it took me some time to adjust to the initial shock of the diagnosis on an emotional level. I focused on taking care of myself appropriately immediately. As I began to pull out of my initial shock I began reading and researching, I also began actively working with my medical team. Today I see myself as one of my team members... I’m definitely past the initial shock. I’ve become very proactive. And I’ve learned to cherish each day. I’m still the person I was before learning I that I have CKD. I’m still able to do the things I love, albeit with accommodations for my CKD when needed. In other words, my life continues. I no longer focus on length of life. Instead, I now focus on quality of life. I have specific things I’d like to accomplish over the next five years of my life. I share those goals with my medical team and then ask, “Can we do this?” They always say, “Absolutely!!” And then we work together to keep me feeling and functioning well enough to accomplish those goals.

Jayhawker

You may also like...

It's official! Update on transplant!

to go through the donor process and I'm very fortunate and lucky that she changed her mind to go...

Post Transplant: An Update

of shocked at how large it is, but given I'm so small, I'm not at all surprised. I was upgraded to...

Help with eating better.

filling up on rice/bread type foods? Are you pretty much eating the same things every day? I eat...

UPDATE: Should I be concerned about a 23 (or 10 ) point drop in gfr in a year?

for any replies. UPDATE: I finally got my blood work and thought I would share some numbers. First...

Bad news...

about 9 months now, so, I'm hoping (really hoping) that in the next 9 months I'll get that call...