Feeling quite depressed, worried about my kidneys & hearing

[Athena]

It's a really cold winter here and I'm really feeling down. I've suddenly developed unexplained anemia (but with plentiful iron stores & high transferin saturations levels due to an iron infusion in Nov 14). I've also developed metabolic acidosis and now need to increase my daily sodium bicarbonate intake. Those 2 things are bad enough but I've noticed lately that my hearing seems worse. I could not hear all of the dialogue in a film I watched at a cinema over the weekend & today I put my hearing aids on for the first time in a long time & it didn't seem to improve things.

My Chinese naturopath today said that my pulse feels weaker than it did 2 weeks ago & my "Yang" energy is down. I've got a new herbal formula to try and I've been told to soak up the sun as much as possible for the few hours that we have sun (my Vit D levels have dropped). I am also well stocked on Aranesp injections & sodium bicarbonate tablets. And winter will eventually pass I guess. But my mental state has really taken a beating in the face of all these health concerns.

All I have to look forward to in more lab tests, another hearing test if I insist on one and just speaking to more people who can't do a single thing to help me (aka nephrologists, ENT, audiologist, endocrinologist).

I am really getting tired and depressed. The more doctors I see, the more it is reinforced that there is nothing anyone can do to help me. All that's left for me is to do is to go on another mission to find possibly another better Nephrologist, another ENT specialist, another endocrinologist etc, but I already see the best in their respective fields & they just don't have the answers. I can't stand doctors anymore and I have to see 2 doctors this week!

I'm trying to write a book but I find that I just can't concentrate on finishing it. I am like a piece of driftwood in the sea.

[Zach]

 

[Deanne]

You have a lot to deal with at once. I'm sorry.

If you're already seeing the best doctors in your area, would seeing others help you, or would it only cause you greater frustration and anxiety? If you think they're giving you bad information, change doctors, but if you think the information is correct and you just aren't hearing what you want to hear, then changing doctors will only create additional appointments for you and might cause anxiety over differing answers.

Are your current doctors aware of the herbal supplements you're using? 

[obsidianom]

TO ATHENA : AKA "THE PRINCESS"  .    I have known you longer then anyone else here as you know . We go back to another place .  Winter in your part of the world is a bummer as it is summer in most populated areas. The short cold indoor days are hard on anyone. Many of us will be feeling the same in 6 months.
Hang in there.  Better days will come.   Your anemia will improve in 4 to 6 weeks.  You should feel better then.       I am with you on doctors. Many are jerks and a pain to deal with. my wife agrees.        We all sympathize with you here.       

[Athena]

TO ATHENA : AKA "THE PRINCESS"  .    I have known you longer then anyone else here as you know . We go back to another place .  Winter in your part of the world is a bummer as it is summer in most populated areas. The short cold indoor days are hard on anyone. Many of us will be feeling the same in 6 months.
Hang in there.  Better days will come.   Your anemia will improve in 4 to 6 weeks.  You should feel better then.       I am with you on doctors. Many are jerks and a pain to deal with. my wife agrees.        We all sympathize with you here.       

Thank you so much Obsidianom for your kind support.

[iolaire]

I can't stand doctors anymore and I have to see 2 doctors this week!

One thing you should find under dialysis and as your health stabilizes is that you see a doctor (nephrologists) fairly infrequently.  Here in the US the nephrologists are paid for something like four in center visits per month, but I really think they do less, and its just stopping by your chair to ask if everything is ok. 

Otherwise its the center's staff that you deal with most frequently, a very quick visit from the nurse to listen to your lungs and check your feet for swelling, and then the technicians who you deal with constantly.  A few times a month the dietician and social worker might stop by.  Unless your needs are higher then you might get checked in on more frequently.

[Athena]

You have a lot to deal with at once. I'm sorry.

If you're already seeing the best doctors in your area, would seeing others help you, or would it only cause you greater frustration and anxiety? If you think they're giving you bad information, change doctors, but if you think the information is correct and you just aren't hearing what you want to hear, then changing doctors will only create additional appointments for you and might cause anxiety over differing answers.

Are your current doctors aware of the herbal supplements you're using?

Thanks Deanne for your reply. I see 2 nephs already as it is and the differing advice I receive does cause a little uncertainty and confusion at times. Nothing too dramatic though, just differences in medication advice and slightly different angles about what could be happening with my kidneys. Because I am driven to do all I possibly can in combating my medical problems, I find that it is beneficial to be always seeking second opinions. Medical advice can vary depending on the individual doctor I find.

The other thing that I seek from Nephs is to be educated and informed about my condition. However doctors are notoriously overstretched for time & will spend the minimum amount of time possible with a patient. That is one other reason why I need 2 Nephs to seek advice from. To get more information.

So in essence, I just don't feel that each Neph is doing enough for me. It's a horrible feeling to have but the nature of CKD is to remain unhappy because while it remains incurable, how can we be anything but dissatisfied with established medical advice? 

As for the herbal medicine, I have informed my Nephs about this & have informed them of the qualifications and identity of my herbal practitioner. This has been discussed in some detail with Neph 1 who has reluctantly approved this in the past. I have asked for expert academic opinion on Chinese herbs earlier this year and need to follow up in with this. There's a lot more work to do on this front in terms of contacting researchers and pharmacology experts.

Feeling better today but I am looking after a sick sibling who has a severe chest infection! I'm praying I don't catch anything myself. I'm really feeling a bit nervous about this.

[ramlamb57]

Regarding hearing loss, check all of your prescriptions. I used to take Lasix, and it caused ringing in the ears. Good luck, and feel better. Unfortunately, "modern" medicine still needs a lot to be desired: treat one thing, another thing pops up.

[MooseMom]

Dear Athena, I am so sorry that you are buckling a bit under the weight from the anxiety that comes from having CKD.

Just to remind you, I spent 10 years at stage 4.  That's a decade of emotional and psychological suffering about which I still have nightmares.  I've learned a little bit about how to cope with this uniquely painful stress with the good advice and wisdom from many IHD members.

Understanding full well that we all of us have varying ways of coping, I will share with you a few thoughts that perhaps may help you.

When my only child was suspected of being on the autistic spectrum, I spend an inordinate amount of time learning about the condition.  And do you know what?  About 98% of what I learned turned out to be completely irrelevant when it came to my son.

I found the same to be true when researching CKD.  It took me several years to realize that I was drowning myself in information that I quite simply didn't need.  I was adding to my own anxieties, and I don't want the same thing to happen to you.  But I wanted to be "educated", and while I was indeed "educated", I was also miserable and hopeless. 

I believe that there is only so much education and information that will be truly helpful to you.  I confess to not quite understanding how one could have two nephrologists and still feel like there is a lack of information.  What is it exactly that you feel you do not know?  Going by what you posted, having 2 nephs seems to result in only more confusion, thus more anxiety. 

While a second opinion can be helpful, if you get different advice from every doc you find, how do you know which advice is the best? 

I was FAAAAAR from happy while I was pre-dialysis, but I don't believe that it is "the nature of CKD to remain unhappy."  My unhappiness was due to the nature of ME.  The only thing that would make you and me happy is knowing that there's a cure.  And if there is no cure, then there is a tendency to be "dissatisfied with established medical advice."

I know your situation is complicated by diabetes.  I have FSGS, and it was pretty straightforward.  The "established medical advice" is to keep the native kidneys working as long as possible.  Mine lasted from diagnosis in 1992 until tx in 2012, so I can't complain about what my neph did for me.  Established medical advice served me well.

It was monrein who, many years ago, told me that she had found that the pre-dialysis period was far more stressful for her than the time she actually spent on dialysis.  For a lot of people, I have no doubt that her words ring true. 

Athena, I would ask that each time you feel compelled to "educate yourself", please wait for just 3 minutes before you begin your research.  Ask yourself if this particular line of inquiry will be really worth it.  Somebody suggested that to me some years ago, and it was an extremely valuable piece of advice! 

I hope your sick sibling is doing better today and that you have not caught anything nasty!

Be good to yourself.

[Athena]

Regarding hearing loss, check all of your prescriptions. I used to take Lasix, and it caused ringing in the ears. Good luck, and feel better. Unfortunately, "modern" medicine still needs a lot to be desired: treat one thing, another thing pops up.

Thanks Ramlamb. I'm not on Lasix but am beginning to feel suspicious about all of my meds, in particular the ACE & now ARB medication.

However, I have also discovered a link between CKD and hearing issues that has been recently uncovered by researchers. I don't know how conclusive this study is though but it would appear there is a causal link between the kidneys and our cochlear.

https://www.kidney.org/news/newsroom/nr/HearingLoss

[KarenInWA]

I second everything MooseMom wrote!

KarenInWA

[Athena]

Moosemum, thank you very much for your reply. That was beautifully expressed and the wisdom of hard experience is very evident in everything you have written. It is only advice from people who live with kidney disease that has any real value to me. I now no longer have time for the psychological advice nephs, renal nurses and the various hordes of people that earn a living from the suffering of CKD may provide. My Neph told me to live a relaxed happy life. That all sounds good in theory but how does one actually do that when they feel like a wounded animal that is slowly being sapped of life? I'm not surprised that you remember the trauma of your pre-dialysis days. It's inconceivable that anyone can actually feel blissfully happy while they're waiting for kidney failure. It seems to me the best way to go is to not even know you have CKD & to just be found out at the dialysis stage. Surely that's better than just fighting this long drawn-out losing battle? I truly admire how you were able to get through that phase Moosemum. It's not easy to just watch your health declining & not be able to prevent it in spite of one's best efforts.

I realise that my mental health is taking a bit of a beating and that I will snap out of it. I usually do, it's kind of cyclical. The Aranesp shot I took a week ago now feels like it's working as I appear to have more colour in my face today & I feel better.

In other good news, my sister seems to be finally getting over the chest infection and is now back at her place. I do not seem to have caught anything. Hooray!

Thank you again for your help MM
 

[Deanne]

Living in limbo is hard. For me, it was harder than the actual event itself. I spent years wondering when my kidneys were going to fail. I was diagnosed at 9 and spent my whole life wondering when the other shoe would fall. It can be psychologically devastating.

My suggestion is to do things you enjoy. Choose *not* to feel like a wounded animal. I know how hard that is - I've been there and learned that it *is* a choice. My family used to constantly ask me how I was doing. I stopped letting them ask. It wasn't doing me any good. I didn't want pity or reminders, and I definitely didn't want to be treated like a "broken" person. I've learned that almost everyone you talk to has something wrong. The person next to you in line might be suffering from life-long back problems after a car wreck that happened when she was just a child. One of your neighbors might have a heart condition, the guy on the next block might have bipolar disorder. The woman a mile from you has been struggling to get pregnant for years. It seems like almost everyone has *something* wrong.

Focus on having fun. If you have hobbies, do them. If you don't have hobbies, find them. Try to make those hobbies as active as possible (ie, not sitting by yourself in front of the TV or Internet). You said it's winter for you. Do you live near snow? Try snowshoeing, skiing, or just go build snow creatures. Do you like crafts? Try a weaving class, make jewelry, try a fused glss class, take a class in welding, woodworking, or whittling. Do you like to cook? See if you can convert existing recipes into kidney-friendly equivalents. Use your friends and family as guinea pigs - sounds like an excuse for a dinner party. If you can afford to travel, learn the language of a place you want to go and then go there.

Once I finally learned to live (not until I was in my 20s), I decided I would excel at my career. I knew I could support myself then, but I still wasn't really having fun. I needed more adventure and ways to challenge myself, so I picked up my life and moved across the country to try living someplace new. I decided I didn't like it there, so I did it again and landed where I am now. I kept finding new ways to challenge myself and found out I didn't have time to think much about being sick. I found out failing kidneys really didn't slow me down that much. In the end, my kidneys failed, of course, but instead of being that worried about it anymore, I learned it still didn't really stop me from doing almost anything I wanted to do.

[MooseMom]

Deanne, I wish you had been on IHD years ago to give me all of that good advice!  It took me years to figure it out; if you had been around, I could have read your post and could have sussed it all out in about 30 seconds!

Athena, I'm glad you are feeling a little bit better today.  The only thing I can think of to add is that there were days when nothing I did could bring me out of my pre-dialysis funk, so I'd just allow myself to have a bad day and to know that the next day would be better.  I wouldn't beat myself up for letting myself feel sad.  It is exhausting trying to keep your mind focused on only good things!  On a bad day, I'd pamper myself.  I learned to love winter because then I could do girly things like have a cup of tea and a biscuit and sit down with a good book and let the snow have it's way.

[kristina]

Hello Athena,
I am very sorry how you feel and I can quite understand it because I have been there as well...
... I do hope that you can stay pre-dialysis for as long as possible, but please don't stretch it for too long
because then it could eventually backfire on your generel health and other organs might get involved  ...
... The most important point for me was to check-up my regular blood tests and rely on my instinct to figure out when it was time ...

TO ATHENA : AKA "THE PRINCESS"  .    I have known you longer then anyone else here as you know . We go back to another place .
     

P.S. Am I right in thinking what I am thinking because it has been documented that part of "The Family" went to the USA ?

Best wishes from Kristina.

[Michael Murphy]

Personally I dealt with predialysis stress by Denial the only thing I did was to have a fistula created.  Other than that I simply would go to the nephrologist listen to him tell me it was time and simply ignore him.  When the time came that I knew it was time I called the nephrologist and to his surprise I asked him to schedule my first dialysis.  There was nothing I could do to stop the disease so why worry about it.  It was a great three years looking back that time was a gift that would have been ruined by worry. 

[Athena]

Hello Athena,
I am very sorry how you feel and I can quite understand it because I have been there as well...
... I do hope that you can stay pre-dialysis for as long as possible, but please don't stretch it for too long
because then it could eventually backfire on your generel health and other organs might get involved  ...
... The most important point for me was to check-up my regular blood tests and rely on my instinct to figure out when it was time ...

TO ATHENA : AKA "THE PRINCESS"  .    I have known you longer then anyone else here as you know . We go back to another place .
     

P.S. Am I right in thinking what I am thinking because it has been documented that part of "The Family" went to the USA ?

Best wishes from Kristina.

Thanks Kristina for your advice. In relation to 'The Family' question in your post, I do not have a clue about what you are alluding to. I have no family in the USA that I know of.
Be well

[Athena]

Living in limbo is hard. For me, it was harder than the actual event itself. I spent years wondering when my kidneys were going to fail. I was diagnosed at 9 and spent my whole life wondering when the other shoe would fall. It can be psychologically devastating.

My suggestion is to do things you enjoy. Choose *not* to feel like a wounded animal. I know how hard that is - I've been there and learned that it *is* a choice. My family used to constantly ask me how I was doing. I stopped letting them ask. It wasn't doing me any good. I didn't want pity or reminders, and I definitely didn't want to be treated like a "broken" person. I've learned that almost everyone you talk to has something wrong. The person next to you in line might be suffering from life-long back problems after a car wreck that happened when she was just a child. One of your neighbors might have a heart condition, the guy on the next block might have bipolar disorder. The woman a mile from you has been struggling to get pregnant for years. It seems like almost everyone has *something* wrong.

Focus on having fun. If you have hobbies, do them. If you don't have hobbies, find them. Try to make those hobbies as active as possible (ie, not sitting by yourself in front of the TV or Internet). You said it's winter for you. Do you live near snow? Try snowshoeing, skiing, or just go build snow creatures. Do you like crafts? Try a weaving class, make jewelry, try a fused glss class, take a class in welding, woodworking, or whittling. Do you like to cook? See if you can convert existing recipes into kidney-friendly equivalents. Use your friends and family as guinea pigs - sounds like an excuse for a dinner party. If you can afford to travel, learn the language of a place you want to go and then go there.

Once I finally learned to live (not until I was in my 20s), I decided I would excel at my career. I knew I could support myself then, but I still wasn't really having fun. I needed more adventure and ways to challenge myself, so I picked up my life and moved across the country to try living someplace new. I decided I didn't like it there, so I did it again and landed where I am now. I kept finding new ways to challenge myself and found out I didn't have time to think much about being sick. I found out failing kidneys really didn't slow me down that much. In the end, my kidneys failed, of course, but instead of being that worried about it anymore, I learned it still didn't really stop me from doing almost anything I wanted to do.

Deanne, thank you so much for your wonderful advice. Boy, you sure do know all the ropes about how it is like with this disease. You are so right in everything you have said. I'm kind of going through a phase where I'm now starting to reveal my health status to others. I have up till now really been keeping it a secret. It does help that people close to me now know. So far, I'm not getting the 'how you are feeling' questions too much but there is a danger of being seen as a 'broken' person and being treated like one. I am on guard with that. But right now, it's a bit of a relief. My "dark secret" is out! 

But you touch on all the essential things that need to be considered and I am truly in awe of your experience and knowledge. As Moosemum said, IHD is truly invaluable as a great resource and reservoir of support for people with kidney disease. Thank you and best wishes to you as well.