Pre-D rambling

[MooseMom]

Please do not feel obligated to either read or comment on this.  It is just me, rambling.

I've never been forcefully aware of my CKD.  It's just a lot of numbers, a lot of pills, a lot of anxiety, but physically, well, I've probably felt the effects but just didn't recognize them because I've had CKD for so long that it is hard to differentiate those symptoms from the signs of just getting butt-older.

I like to walk.  It's my way of keeping fit.  I've been walking for years.  However, this past winter was particularly harsh.  It was very icy.  I live at the end of a cul-de-sac, and the city doesn't have enough money to salt my end of the road.  Just walking out of my driveway became dangerous.  So, for most of the winter, I didn't exercise as I had done in the past.

I don't know if it is CKD, age, winter blues or lack of exercise, but I am really feeling the fatigue.  At my last neph appt, my hemoglobin et all were just ever so slightly below normal as they have been for years; there has been no substantive change in my numbers to warrant this fatigue.

To combat it, I'm thinking that I must recharge my battery, so now that the weather is better, I've been walking again, but by the end of the evening, I'm wiped out.

Today I did some gardening, the first gardening I've done since November, and it was bloody hard work.  I had to really pace myself and not allow myself to do everything all in one day.  Almost immediately upon starting, I barely grazed my right arm against a spent siberian iris stem, and the skin broke and started to bleed.  So before I even got started, I had to drop everything and attend to my bloody arm.  I take lo-dose aspirin each day and have done for 6 years, so it's no great surprise, but my skin seems to be suddenly so much more fragile.

I feel like my body is starting to succumb.

My husband has 4 kids, all either in college or about to go.  The youngest comes to us every other weekend.  He has been working for the past year so does not spend all weekend with us, but he has just gotten a leave of absence so that he can get a prodigious amount of school work done.  This means that for the next couple of months, starting tomorrow, he will be with us the whole weekend.  This kid is great, he really is, but he is a 17 year old boy, and like all 17 year old boys, he creates domestic chaos that causes more work for me.  Normally I don't mind, but I just don't have the energy for it anymore.  Yes, I could say something to him or to my husband, but they really do not understand the profundity of my fatigue, and I'm afraid of coming off looking all whiney.  I figure I can just suck it up and enjoy the few weekends we have left with him before he goes off to college.

My husband's eldest daughter is coming in from college for the weekend.  We have not seen her in at least 2 years.  I've never been close to her.  She's very nice, but we've never had the opportunity to even have one private conversation.  She is friendly but emotionally aloof.  We are meeting her for lunch on Sunday, accompanied by the above mentioned stepson.  I don't want to go.  I don't have the energy for it.  I don't have the energy to engage in conversation with someone I don't know well.  She has hurt my husband, unintentionally I am sure, through her casual indifference, but she is in college and that's what a lot of college kids do...forget their parents.  I know my husband feels bad, and I don't want to see his sadness.

It's hard going through life knowing that your body is under assault and that there is nothing more you can do.  It takes every bit of energy I have to get out of bed in the morning and continue on; I don't have extra energy for anything else.

That's my pre-D ramble.  I feel a bit better now.

[monrein]

I know so very, very well this place you're coming from at this point in time MM.  I used to feel like a piece of blank paper that wanted to fold itself over and over until it was very small and could be hidden somewhere.   

[MooseMom]

I know so very, very well this place you're coming from at this point in time MM.  I used to feel like a piece of blank paper that wanted to fold itself over and over until it was very small and could be hidden somewhere.   

One of the very first things you ever told me was that you believed that this was the hardest part of the CKD/ESRD journey.  I'll always remember your words.  On this journey, you always have to adjust to a new reality.  I am noticably more fatigued today than I was this time last year, although my labs wouldn't support that sentiment.  Maybe my fatigue has been hidden by the adrenaline rush you get with fear.  Maybe I am not quite so fearful anymore, and maybe that means I require less energy to get through the day.  Is this "acceptance"?  I don't know.

I like the "blank paper" analogy.  I hate to think you ever felt like that, but I'm happy that that is in your past, not in your present.

You've always been so kind to me, and I appreciate that so much.

[MooseMom]

UPDATE...here's something that made me feel even worse today:

My husband and I were in the car this evening; we had decided to go out for a cheap and cheerful dinner.  I explained to him that I wasn't sure that I wanted to go out for lunch on Sunday and that he and his kids should just go.  I explained about my energy drain and also added that it had been a long time since I had seen his daughter and that I believed that I had just lost my vitality and that I looked sick.  After the obligatory, "You don't look sick to me.  You're still attractive," he said that his daughter knew I hadn't been ill but was probably unaware that I was "seriously ill".  He had never called me "seriously ill" before, and I guess that it is true.  But hearing your spouse SAY it...well...It's not like I'm denial (soooo totally far from THAT), but still...hearing the words really shook me.

Can't run away from that...

[rsudock]

moosemom it can be hard to see yourself in the reflections of other people's perseptions. I overheard Aaron talking to his mom on the phone when I was napping, and something to the effect, "...I have a lot going on in my life right now. I have a sick girlfriend who needs me and I don't have time for all this..." Even though sometimes we feel as though we bare this disease burden alone, we sometimes get a awake up call that those closes to us bare it as well.

At least the hubs seemed understanding about how you were feeling. I am sorry you are feeling tired. Do you think maybe it could be mono?

[AguynamedKim]

Well, MooseMom, at least your seriously smart to combat the illness part.  I'm sorry that shook you up.     It sounds to me like your husband is really understanding and after reading about all of the posts where families don't seem to get how tough and serious this illness can be, I'm glad to hear your husband so far seems to get it.  You deserve that and a whole lot more.  I wish we knew what is causing your faitgue.  Unfortunately there are so many causes for fatigue.  It does sound like you're taking steps to pace yourself and work around it.  I hope the visits aren't too stressful.  Hopefully you can set aside a little bit of time just for yourself.  Let people know that's what you're going for so they can honor your time.

[billmoria]

The months and days leading to D are (or where for me) the worst. D has been a relief. One thing you must do is make it clear to everyone in your family that there are going to be days when you just CAN'T! My loving partner Dave would always push me to do a bit more than I wanted to do. He has learned (it is a learning process for everyone) that no amount of will or desire will allow me to do what I just can't do. I do what I can, when I want. I still sometimes do things even thought I feel tired with no energy. We are partners and I want to please him as much as he pleases me. I am so lucky to have him.

[MooseMom]

billmoria, those are all good points.  My husband says I don't look sick, so to him, well, I guess he understands in theory but not really in reality.  When I talk of fatigue, he thinks a nap is all I will need.  I tell him that there really is no adequate word for the fatigue that accompanies chronic illness.  I don't really need him to understand, it doesn't matter.  I will do what I can do and I will not do what I cannot do.  He works hard and is often tired himself, so it's not like we are missing out on action-packed activities just because of my CKD.

But I know about wanting to push yourself so that you can please your partner.  And you're right...it's a learning process for everyone.  But part of the learning process is figuring out what you CAN do instead of constantly contemplating what you CAN't do.  It's not always easy to recognize the good days when you are expecting them all to be bad.  I have to be careful not to let CKD be my default excuse for everything, you know?  "No, I can't do that because I have CKD" or "No, I won't get pleasure from this because I have CKD" or "Life is crap because I have CKD" (which is a refrain that is sounding all too familiar these days....must stop that!)

I'm glad your partner is so supportive.  Again, it doesn't really matter if he doesn't UNDERSTAND.  Actually, the fact that he stays with you and loves you DESPITE not always UNDERSTANDING is wonderful.  You don't have to have walked in someone's shoes in order to offer love and support.  You are indeed lucky!  Hugs to your partner!!

[WfMonkey]

I'm also struggling with fatigue. Be thankful your partner is supportive, even if he doesn't understand. My wife got confused and angry with me that I didn't want to do things when I looked fine. She knew I was sick (came to all my neph appts) but couldnt process it. The onset of my disease coincided with the only period of unemployment I've ever had in my life. I got depressed, which made me more tired and withdrawn. The stress of my illness coupled with   strained finanaces was too much; my wife left (actually persuaded me to leave). She says it wasn't about my illness but she had an affair with a personal trainer. It doesnt take Freud to figure that one out.

On the silver lining side, it has made me realize that I need to fight a little harder, push to get what I want. Previously I was very reliant on her to do things like argue with the insurance company and book medical appointments. Now I'm forced to do that myself, as frustrating as it is it has it's own rewards. Often (usually) I don't feel like going out with friends or exercising, but I force myself to do it. Sure, I've fallen asleep in a couple of restaurants, and that's embarrassing, but it's better than staying home feeling sorry for myself (been there, done that).

I'm trying to erase the word "can't" from my vocabulary. It may be difficult, it may be unwise, it may be expensive, but I can still do anything I want to do. Sometimes I choose not to, but that's my choice, not ESRD's.

[woodsman]

I also find myself growing wary quickly. I sometimes get up tired. I do my thing drive to work work drive home and by then i am shot. My drive is 61 miles each way and 8hrs at work adds up quick. I am finding it harder to get things done at home during the week. Today i mowed almost 4 acres and just riding around made me tired???. I took a cool shower to wake up and left for work. I stopped at th pistol range and shot some then came in here to work and i feel like a nap right now!!!. Ohy well it's all part of it i guess.   hang in MM and a cool shower does help motivate....

[Dannyboy]

I know this thread is a bit dated, but it sure "speaks to me".

I'm having ups/downs dealing with getting fatigued, having trouble concentrating sometimes, and all of the rest.    When i signed up here at IHD I thought I had gone through all of pre-D emotional upheaval, but I find that it is still coming up now and then.   I read about the many people here on IHD who (unlike me) have been undergoing the big "D" for YEARS, (and MANY around here have had LOTS of other medical issues in their life to deal with as well) and I'm feeling guilty for feeling sorry for myself for (merely) facing up having to start D.

I do not like the "unknowns" (hah-what a shock), how much longer can I get by without D, can I realistically hope to just "hold steady" where i'm at, will I be able to continue working and feeling like I'm contributing to Society afterwards,  will the transplant team approve me?    I know I'm guilty of worrying about too much, and need to let each day come as it will, but, well it just gets too me sometimes.

Been having lots of trouble sleeping through the night for the past couple of months.    Like anybody, I do my best after a good night's sleep, and it really is hard to do a full day (like a day like today) when I'm both sleep deprived and dealing with whatever fatigue is due to CKD.

Just whining.
---Dan

[MooseMom]

Dannyboy, I have been "pre-D" for 20 years; it has been for the last 7 years that I came to see just how serious my situation is.  Please allow me to ramble back to you; it's possible that my blathering may give you a grain of solace.  I have learned a few things over the past 7 years, and maybe some of these lessons learned will help you out.

First of all, in my very humble opinion, guilt is self-indulgent and puts a further burden on your shoulders.  You have enough on your plate as it is, and you don't need to willingly add a serving of guilt.  There will always be someone who you feel has it harder than you do, but their suffering doesn't make your own less painful.  I personally don't feel better when I see someone hurting more than me, and I'm sure you don't, either.

If you have periods where you feel sorry for yourself, well, so what?  I know there are times when I have the biggest pity party known to man;  I just let myself feel what I feel, and then I get bored with the self-pity and move on.  Allow yourself to feel what you feel, and then you can move on, too.  It's just too much like hard work to always keep your feelings submerged because you think you have to in order to "suffer nobly."  I think you will know when self-pity starts to corrode your entire life, and that's when maybe it is time to adjust your thinking.

Knowing that you are headed for dialysis is fraught with its own terrors.  As rotten a prospect as dialysis is, at least once you have started, you have some modicum of control over your treatment (if you so choose), and the fear of the unknown is largely passed.  If you get good dialysis (especially when you are on nocturnal or frequent hemo, for example), then you can actually feel BETTER than you did when your egfr was at its pre-D lowest.  Pre-D people have the most restrictive diet of all renal patients, so being pre-D is a very tough proposition.

As most people on IHD know, I have had real trouble coming to terms with my situation.  I have consulted psychiatrists, psychologists, therapists, naturalists, bio-feedback specialists and even a hypnotherapist.  Nothing that any of these people had to say has ever eased my anxieties.  The only thing that will really help me is a cure, and that's not going to happen.  I don't know if I will fare well on D...that's another unknown.  I tell you this because what you are feeling is normal and common.  You will have good days and you'll have days where all you feel is despair.  It's exhausting.

Please don't try to quantify your fear.  Please don't worry about how much you are worrying.  Please try hard not to look too far ahead (difficult to do!).  Please try not to let yourself be overwhelmed.  Use your worry to learn as much as you can about your condition and your treatment protocol, both pre-D and post-D.  Start learning about transplantation.  USE your worry to your benefit.  Don't allow it to paralyze you.

Many people in our situation find the use of anti-anxiety meds to be very helpful.  If you feel that your anxiety is leading to depression and/or inertia, this is an avenue you might like to explore.

I know for a fact that anxiety is exhausing.  Anxiety will deprive you of good sleep, and the exhaustion continues.  I find that a swim or a long walk outdoors revives me and, most importantly, improves my mood.  If CKD has made you anemic, that will cause fatigue but can be treated. 

You just come onto IHD and whine all you like.  Everyone needs a safety valve, and IHD is tailor-made for that.

[AguynamedKim]

Dan, I'm glad you revived the thread to share your feelings as well as allow for another incredibly well stated reply by Moosemom.  I wish I could add more but I just wanted to thank you both for helping me sort through the very same feelings I have been having recently. 

[malaka]

I'm approaching dialysis time.  Nephro sent me to vascular surgeon for fistula work up.  Better to do it early and never need it than to delay and need it now, I guess.  But I went to nephro as I'd gained about 10 pounds in little more than a week and he jumped up my lasix dose from 40 mg/day to 240 mg/day which has solved the nephrotic syndrome problem for now.  I can wear my old clothes again and don't need a whole new wardrobe after all!

GFR is down to 18, and the trend is headed more or less regularly down. 

Am I happy?  No.  But given the alternative, I can accept dialysis and the waiting list for transplantation. 

The thing my nephro told me was that dialysis would regulate the fluid balance (if I was good and followed directions, that is) without all the ups and downs of chronic medication adjustments.  With nephrotic syndrome, I've had DVT, so I'm on Coumadin whose dose goes up and down depending in part on how much water I've taken on.  Ditto for insulin, although to a lesser extent.  In a way, I'm fortunate that I have to stick my finger 3 or 4 times per day since if it bleeds too easily, I know my blood is too thin.  If I have to squeeze a drop of blood out, its too thick.  And, I'm told it will also help regulate blood pressure so maybe I'll be able to drop some other meds I take for that problem. 

I'm guessing I'm in for lots of medication adjustments if and when I start dialysis' but that I have a decent chance of stabilizing once the adjustments are made.

MooseMom, I know about tired.  And sleeplessness. And the crazy itching.  And the restless legs.  There is no upside to CKD at all.  I know being hooked to the machine will suck, too, physically as well as lifestyle alteration to the max.  My wife has just started to realize that things may change soon for the worse. CKD hasn't been too much of a problem for her except those days I was hospitalized with out of control blood sugar (thank you, corticosteroids!) and that we've changed roles as far as who is cold and who is warm.   Like your husband, she's never had a chronic illness so can't really understand that my point of view differs from hers.  Often it seems like I'm 25 years older than her now, even though we were born the same year. I've realized I can't do anything about it, however.

[MooseMom]

Malaka, I don't know why, but (*finding wood to knock on) I've not yet been bothered by fluid retention.  I've never had lasix.  I am not sure about the difference between the way membranous nephritis syndrome manifests itself from that of fsgs.  Since fluid regulation does seem to be a particular problem for you, have you given any more thought to nocturnal or home hemo?  Those two modalities seem to be more effective than thrice-weekly D when it comes to the more efficient and less traumatic regulation of fluid.

I've been on a hill of pills for 7 years now, and all in all, I haven't had to readjust things that much.  But I can imagine it must be really frustrating to have so many med alterations.  And yeah, dialysis will mean even more changes, but perhaps those changes will be more permanent as you've suggested.  Medicine is an art, and we just have to be flexible, I guess, and tinker until we find what works for us.

[Dannyboy]

I know it's been said many times before, heck I've said it:   It's great to be able to interact with others who are dealing with same/similar issues.   So THANK YOU to all of you.
Moosemom:  Thanks for your observations (and "permission" to whine LOL).     

Kim:  Yeah Moosemom (and others) are good listeners 'round  here.

Malaka:  I've had water retention for quite a while, too.   Lately it's getting much more of a PIA.    Legs are swelling so much sometimes close to not being able to slip Levi-type pants off (I have a muscular calf though, so that doesn't help).   My dieuretic doesn't seem to be working as well these days.

Vein mapping coming up soon, followed by "plumbing" in my arm.
---Dan

[rsudock]

DANNYBOY have your tried Ted hose/Compression socks to help with the fluid retention in your legs?

xo,
R

[Dannyboy]

No, never heard of them (compression socks).   How do they help?
Is "Ted" the brand?
--Dan

[Dannyboy]

Ok, found 'em online DUH, checking them out.
Thank you.
---Dan
Edited to add:  Wow, the things I never heard of!  LOL.   An article I read just now mentioned being sure they fit properly and having one's ABI [Ankle Brachial Index] checked prior to get the right type, compression-wise.     I realize that I have some tighter-fitting regular socks that are apparently doing the same sort of "compressing", cause after wearing them most of the day, there is a HUGE "notch" where the sock is and the leg gets "fatter" from being swollen.    My Diabetes doctor told me to wear *less-tight fitting* socks, but now I see there's probably a better solution.   Will check with my Neph next visit.   I keep asking them if the swelling is a MEDICAL problem, or merely just an unsightly deal, sounds like it can be a medical issue if it gets bad enough?
--Dan

[rfranzi]

Well put. I've never heard it said that way before.

I know so very, very well this place you're coming from at this point in time MM.  I used to feel like a piece of blank paper that wanted to fold itself over and over until it was very small and could be hidden somewhere.   

[malaka]

It is a medical issue when you are prone to development of blood clots which are often Deep Venous Thrombosis (DVT) which, if the clot breaks loose, can go to the lungs causing pulmonary embolism which can be life threatening.  I had that last year and was given the choice to stick myself with a med Lovenox using a fairly long needle in the belly or sit in the hospital and let the hospital staff do it for me.  Being on insulin for Type 2 diabetes (Metformin doesn't work any more) I chose to stick myself.

Today is vein mapping day.  That's the easy part, of course.

[rsudock]

Hi Dannyboy glad you found the Ted hose stockings. yeah the swelling is a sign that your kidneys can no longer get rid of the fluid in your body so it starts to collect in places like the ankles, hands, face, abdomen, and lungs!!! Be careful b/c the extra fluid in your body starts making your heart pump harder to get the fluid moved around. If it was me I wouldn't want to keep putting the strain on my heart. My brother ended up getting paracarditis (fluid around the heart) and he had to be admitted and get the fluid drained. Better to get on D and keep your heart safe I say!!

The Ted hose are pretty long they will go up to your knee. It helps keep the fluid into the vascular system. I have heard that sometimes the fluid in the ankles can start to drain out of the skin and that could be another infection that us ESRD do not need!!!

Take care,
R

[Dannyboy]

Thank you rsudock.   A portion of the swelling seems to be coming from by BP meds, I've cut back temporarily on the Norvask and the swelling seems less after a short time, not a very scientific test of course.   My BP is ok (so far), go figure.   Gonna get into details about this with Neph on next visit for sure.

BTW, glad you are doing good.
---Dan

[MooseMom]

malaka, let us know how the vein mapping goes.  My vascular surgeon was very experienced, but he had an extremely thick Korean accent, and I had a hard time understanding him as he explained just how my blood vessels would work after the surgery.  So he got out this large purple marker and started drawing all over my arm, but he kind of changed his mind during his drawing, and my arm ended up more purple than flesh-toned.  We both just sat there, looking at my arm, giggling.

I'll be interested to know where exactly your fistula will be located.  Good luck!

[Dannyboy]

@moosemom, re: purple marker and accent.

I know it's serious, but picturing that scene cracked me up.

@malaka:  How'd it go?
I've got vein mapping scheduled in just over 2 weeks.  Not sure how soon after that they'll do the surgery.

---Dan