Just sharing

[The Wife]

I'm sorry to hear your doc didn't take you seriously Psim.  This is why we need to learn as much as we can and keep at them.  Sometimes, their lack of follow-up could be a case of the number of patients they have to deal with and as you know, the doctors in this province are swamped.  LL's neph has something like 1500 patients.  The other problem could be a pride thing. I know we're not trained like they are but don't they realize that we might just have something to offer sometimes?  Good doctors won't allow their pride to come before the health of their patients.  The information you provided is exactly the same thing I've been reading.  It certainly is a good site!  I think I need to be the advocate here and see if I can get LL's doc to read the information on the site.  I think I'm going to call his office, get his email, let him know about my concerns and send the link this week. 

[The Wife]

When LL first began dialysis, there was an improvement, but then he started to decline.  Was it when he switched from hemo to PD, or is it his PTH levels?

Yesterday morning, he woke up with leg cramps AND his feet were sore all day because of the fluid he was holding.  He's not had the problem with fluid in his feet since he began dialyisis and I'm wondering how it's possible that he can cramp because too much fluid has been drawn out while having too much fluid in his feet? 

Any answers would be appreciated.

Oh, and in regards to the PTH levels...is 3.1 the same as over 300?  Since there are different ways of recording these levels, I'm left totally confused.

[Joanniebop]

TW, I do believe that the 3.1 is the same as being over 300 because one of Chucks PTH levels was 394. Chuck also has had fluid in just one foot for a few months.
 Just a thought :
Maybe LL's leg cramps are actually due to the PTH being so high  that it's sucking the calcium from his bones.
I don't know, but maybe after Chucks visit at the clinic tomorrow I can pass on some useful info.
Just wondering, did they prescribe anything for LL when they discovered his high PTH levels?
The medication  that Chuck has been taking was almost $ 500.00, just for one month supply, at the Pharmacy yesterday. We just fell into the da** gap. I didn't take it because we have enough till Friday and I will discuss it with the Dr. tomorrow. Hopefully, with the recent increased dosage, his PTH levels have come down. If not, they had better find another drug for him, because we can't afford $500.00 a month just for one drug.
Don't mean to complain, actually looking forward to our visit tomorrow.

Have a great day!

Joannie

[The Wife]

Thanks Joannie.  I'm also thinking 3. whatever is the same thing as 300.  Our system is a bit different since we're in Canada, and as far as LL getting any drugs for his high PTH, the answer is no. They're refusing to recognize that it's even a problem because his calcium numbers are okay.  However, he's not and now that you've mentioned that you have to pay $500 per month for one drug, I'm wondering if this is why.  We are so fortunate because LL doens't pay for any medications.  The kidney foundation covers all of them and the pharmacy delivers.  I don't know how anyone can pay that kind of money for one drug.  Perhaps, the doc here is refusing to give him something for this because of money.  Who knows, maybe that's the true reason they won't give him pain killers either.  As far as the system goes, I know they don't always tell the truth.

LL's going to try a 2.5 bag for his last bag tongiht.  His feet are still swollen, he's in pain and can barely walk, and hopefully, this will solve the problem and not cause him to have the severe leg cramps tonight.  Let me know how your appointment goes and what the doctor says.  Good luck and a big hug to the both of you!

ps.  I don't think you're complaining-just stating the facts.

[The Wife]

I hate making assumptions about why a doctor does or doesn't do certain things.  There may be doctors who are only in it for the money or prestige, and doctors who care.  Unfortunately, they're working in a system that often has their hands tied or in a system where there are more patients than they can properly deal with.  They have to follow the rules, the budget, and everything else that might go against with what they wish they could do, and the patient and their families get caught in the middle of it. 

Sometimes, I become angry with the medical staff, and when I stop and contemplate this, I realize that my anger is toward the illness that has robbed so much from my partner's life.  From my life. 

But here we are, dealing with what we thought we'd never have to deal with.  We do it day after day, month after month, year after year.

How I wish we could return to the time when my partner was still healthy but we can't.  This is it, our life, and the only thing I can do is to honour my feelings as they come forth.  Mostly, I'm okay and in a state of acceptance of what is.  Other times, emotions jump out of nowhere and I find myself asking what in the world we did to deserve this. 

When I'm feeling down, I think about the seasons of nature.  I listen to the crows as they yell at those who walk too close to their nests.  I watch the buds as they begin to blossom, the leaves that fall in autumn, and the waves that crash against the shore.

We are no different than nature, and as nature, experience the different seasons of life.  There are summers where sunshine warms us, winters when cold harsh winds seem to knock us over, and springtimes when flowers wave hello in warm and gentle breezes. 

As each season expresses itself, a deeper appreciation for those I love and for the experience of life itself, emerges.  While the sun brings light into my room, I just want to let you know how much I appreciate all of you. 

Thank you.

[Joanniebop]

TW, you have a delightful way of putting our challenges in perspective.
Today while visiting the PD clinic the Dr. decided that Chuck needed to be hospitalized because of a toe that has not healed properly. He fell a few weeks ago in the shower and his toe had a big blister/bubble  and the toe turned black. We had a visiting nurse coming in a few times a week and she said that is was OK and healing . However, the toe turned black where the blister/bubble was and he might need an amputation. We'll know more tomorrow when he is seen by a podiatrist and a vascular surgeon. They might be able to treat him with antibiotics if the necrosis is not too bad.
Anyhow, last month he  had a partial penectomy due to necrosis of the penis. I told him that if he was able to handle the penectomy, he can handle anything.
I just hated leaving him in the hospital. He is blind, he can't get around ,if the button slips out of his hand, he has no way of getting anyone to help him. He's in a strange place with surgery hanging over his head. In the past, he'd have a tray of food delivered and noone there to help him eat. Can you imagine a tray of food and not being able to see anything and no one to tell you what or where anything is on your plate?
I am sorry, I just needed to get that off my chest. I feel a little better now.
Of course I'll be there for lunch and dinner and I will gladly feed him and make sure that he gets whatever he needs. It just when I'm not there to help him that makes me crazy.
It's been a long day.
By the way TW, I asked the neph if the high levels of PTH could be sucking the calcium from his bones and she said that's a possiblity, but with Chuck and maybe LL it is that and more.
Gotta go.
Joannie

[ODAT]

Joannie, I so agree with you that TW has a great way of expressing herself that can help even the most down-hearted person feel better.

I wanted to reach out to you about having someone in the hospital that needs help for the simplest things. My dad was in the hospital for two months and during that time he needed so much help just to eat. Thankfully most times someone was helping him eat and I would take over. We have to depend on others in situations where our hearts are out there and our expectations are very high as to what needs to be done. It's very hard to leave. Some days, I didn't. I just called work and told them that there was too much going on, too many tests that were being done. We can all just pass around because a support system is the BEST - and I've found one here in IHD. Take care.

[The Wife]

Oh Joannie, never apologize for sharing what is taking place in your life, or for any feelings you may have about it.  I can't imagine what it must be like for Chuck but I do feel for the both of you.  I'm exhaling a big breath of love for the two of you.

Have you ever noticed how it's acceptable in this society to speak about a trip you've taken or are planning to take, the house you're buying, or the new car you've purchased?  Have you ever noticed how easily people listen when you describe the wonderful meal you've eaten during an evening out, the live show at the theater you attended the night before, or the new pair of shoes you've purchased?  

Start talking about dialysis, the details of the illness, or the feelings that go with it, and watch as people walk out of your lives.  People ask how our spouse's are but when we start to tell them, they drift away.  They give little signals, clues -  and you can't help but feel they don't really want to hear.  Or are they just afraid?  Maybe they only asked because they're curious, or to be polite, like the clerk at the grocery store when she asks you how you are.

Sometimes, we give the standard answer.  We say we're fine but we're not exactly telling the truth.  We've learned.  We've learned who we can talk to and who is willing to listen.  Truly listen.  And sometimes, we are fine but still, we have things in are lives that aren't.

Why is it okay to share the details of the things that are labeled positive and not with the things labeled negative?  When we do share something that is seen as negative, why is it looked upon as venting, instead of simply sharing what is taking place in our lives?  And why should we ever feel the need to apologize when we share how much our loved one's are suffering or how our own heart breaks with all we witness?  Or how relieved we are that the latest crisis didn't end the life of our loved one?

Do we feel we are burdening others with our pain?  Or do we believe that what we say will be seen as complaining?  

We don't want to bring anyone down.  We don't want them to feel sorry for us either.  As far as complaining goes, we're not.  We're just stating the facts of what we deal with every single day.  If we could, we'd love to talk about a trip, or a fancy meal we had on our evening out, or how we're planning to go for a walk after dinner, but we don't do those things.  

Our trip evolves around tubes, blood pressure and dialysis machines.  Meals are eaten inside hospital rooms and for some of us, our spouses just don't have the energy to go out for even a simple cup of coffee.  We wish they did, just like we wish they could take out the garbage.  But we don't want to tell you that.  If we do, you might think we're complaining.  "Oh, you should see what my husband won't do," someone tells us.  But they don't get it.  They don't get that our spouses aren't doing something because they don't want to, no, they don't do something because they don't have the energy.  Can't see.  Can't move without pain.

We try to explain but there's no use.  People just don't understand.  Sometimes they try but really, how can anyone understand what something is like unless they experience it?

Along with all of the challenges we have to face, there are gifts.  Like the time the doctors told us they didn't think our spouses might not make it through the night, and they did.  Or the appreciation and peace we found when we sat and observed the tulips in the park after visiting the hospital.  Other gifts come in the form of seeing how our lives have impacted the lives of our children, of how, through our experiences, they have come to recognize just how precious life is. 

We see the gift with every day our spouse stays alive, the moments they do find laughter, and the way the human spirit picks up whenever someone does come over to visit.  We find gratitude in having a meal to eat, the moments when our loved ones do have enough energy to cook it themselves, and the joy we see on their face when they find the strength to step outside and watch a child play.

I can't understand what it's like for someone who lives with ESRD and is blind, someone who lives with ESRD and has a part of their body amputated, nor can I understand what it's like to remain inside for three years because of illness.  But I do know what it's like to live with someone who goes through so much and the best thing I can give anyone who is experiencing any kind of suffering, besides a helping hand, is love.  

Love - and to truly listen.  To listen to what it's like to live with ESRD and to listen to just how much it means to have those who love you and listen without walking away.

[The Wife]

Odat - I was writing at the same time you were.

A big to you.

[The Wife]

And to the moderators of this site -  THANK YOU! for allowing me this space to express myself. 

This is a gift.

 

[paris]

Joannie, I can't imagine being in that situation.  And I know how hard it is on you.   Sending you good thoughts

TW, you give us all comfort and peace.  Thank you for sharing your thoughts with all of us.  You are good at calming the soul.

[monrein]

Joanie, I feel so badly that you and Chuck are facing yet another awful challenge.  Just as LL is blessed to have The Wife, Chuck is very fortunate indeed to have you in his corner.  My thoughts are with all of you and my wishes for less pain and more peaceful times.
Gail

[Joanniebop]

How very nice to come home from a long tiring day at the hospital, grab a bowl of microwaved leftover food, and sit at my computer and read all the wonderful posts by the most caring , kind and compassionate  IHD posters.
You make me fell so good inside that I am at peace with our present situation.
Although, I did just call the nurses station to make sure that they are aware of Chucks needs. I left the hospital as they were changing shifts and I wasn't able to talk to anyone. Michelle ( his nurse) assures me that he is in good hands.

Tomorrow they will do an angiogram to check for any blockages and if so will try and correct the blood flow. If not, probably amputation. But we'll cross that bridge when we get there.

Chuck is in good spirits but I know that he is worrying about the surgery. I tell him that we are going to tackle it and get through it and keep on  conquering our challenges.

Again, thank you all for your support. It's like you are here with me in this quiet home without Chuck. Not that he makes a lot of noise or anything.
Just a little lonely, but than I think of him in the da** hospital .

Joannie

[paris]

Joannie, my friend is always telling me "don't cross that bridge until you come to it. God isn't finished building it yet".  You have a good attitude and spirit.  After you get the results of the angiogram, you will know what path you will take.  The bridge will be built and ready if you need to cross it.  Tell John we are all praying for him.   And take care of yourself, too.   

[xtrememoosetrax]

I'm thinking good thoughts about you and Chuck and hoping things get better soon.   

[The Wife]

Good Morning Everyone, 

I hope you all slept well.  How was your night alone Joannie? 

I'm sitting here with a cup of coffee, thinking of you, and remembering the lonely feeling and all of the other feelings we get when our loved one is in the hospital.

I think we've all become really good at taking things one step and one day at time.  This illness has taught us that. 

When we stop to think about it, taking one day at a time is a good thing.  We could jump ahead into the future and worry about what may or may not happen, but the fact is, we're not there.  We're here, now, and this moment is what we have.

In this moment, the robins are singing outside my window.  A breeze blows through as a crow caws.  I can tell she's sitting near or on her nest of the tree that is now turning green.  It's a new nest and one that wasn't there last spring. How I love to see the lushness of all the different trees as they come into full bloom.  How I love to be woken by the melodies of the robins nearby.  As I sit back in my chair, I drift on their song, into a land of peace and beauty.

I take a breath, inhale life, and join you in this moment.  May your day be filled with peace.

 

[ODAT]

Odat - I was writing at the same time you were.

A big to you.

Ya know TW, I am just gonna grab a tissue before I open this thread. Your words are so moving and meaningful that you make me cry! A good cry, no worries. Crying is cleansing. I remember a movie with Holly Hunter (not the title though) where she would go somewhere far away from people and SCREAM and cry. Sometimes you just have to grab a pillow though - who has time to run when you need a good cry?

I bow to the word master  . Love ya TW

[The Wife]

Have you ever noticed how the colours of the trees and flowers seem to be more vivid after a good rain?  Or how the scent of flowers expand and reach deeper into our senses? 

It removes the dust from the leaves and opens petals of softness.

Tears remove the sorrow that weighs us down and after they have fallen, we are lifted into the melodies of an expanded heart.


I love you too Odat and want you to know that you and your mom have a special place in my heart. 

[Joanniebop]

Thank you all for your well wishes and your support.
TW, I slept OK last night and it's just funny how I feel safer and more secure when Chuck is here even though, I know that he would not be able to protect us but I still think of him as the tough, yet gentle, strong man that he was.
Won't know how they are going to treat Chuck until tomorrow. No blockage from the angiogram but they still have to address his toe and a few fingers.
Thanks again.
Joannie

[The Wife]

I'm glad you slept okay Joannie and glad to hear there are no blockages.  I know what you mean about feeling safer when our men are at home with us.  LL could spend all day in bed and not make a sound but when he's at the hosptial, it's too quiet.  Keep us posted about the toe and his fingers.   

Lots of love to the both of you.

[Joanniebop]

Just a quickie..I'm beat

Chuck came home tonight.
The Dr. will be able to treat his toe in his office.
He is absolutely delighted to be home in his own bed.
Sorry for hijacking this tread.
Thanks for all your prayers....They worked!!!

Good Night,
Joannie

[The Wife]

  Yay!  Chuck's home.   

You didn't hijack this thread Joannie.  I'm glad you're here.   

Here's a gentle song to soothe you while you get some rest. 


 

[monrein]

Glad you're home Chuck

[paris]

So glad he is home.  Hope you both get a good nights sleep

[okarol]

  Glad he's home with you Joannie!