Just sharing

[Joanniebop]

kidney4traci, you have expressed an issue which most people  assumed that if the Dr's say its OK then most people don't question the effectiveness or the possible disastrous side effects.

Chuck had a kidney transplant less than 5 years ( from his daughter) and for 5 years I made him refuse to get the shot, then, we were in the Dr's office last year and they assured us that there was no live virus and convinced us to get the shot. Now I don't know if this is a coincidence or not but shortly after the flu shot his transplanted kidney began to reject which is why he is on PD today. He had not had any signs of rejection until that time.
If I had to do it over I would have continued to refuse the shot, but thats just me.
Thanks kidney4traci for this info.
Very enlightening!

Joannie

[MyssAnne]

TW

I am so concerned for the two of you.  You have such a burden on your shoulders, a willing one,
of course, but I so wish I could be there, or nearby to take LL to the hospital for his  testing
and clnics.

I think of you daily, and feel hlepless that I cannot DO anything for you  All I can do is love both
of you as sister and brother, and hope that it turns out well for the two of you.

Love,
Annie

 

[kidney4traci]

Joannie

I am sorry that happened to you.  Unfortunately doctors offices around the country do and say the same thing.  I believe the pharmacudical rep tells them what they want to hear.  Like there is no mercury in shots anymore.  But that's not true either.  It was for awhile about 3 years ago when the topic came up.  But since 2004 mercury has made a comeback when the CDC decided to refuse to give mercury free flu shots to infants and women.  THe government's stand on this has allowed mercury to come back into other vaccines as well. 
Better off not getting the shot in my opinion.  And doctors are not always right.  (Except my husband of course! But he's a chiropractor and he doesn't give shots)

[The Wife]

Joannie,  I am so sorry to hear the flu shot caused your husband's kidney to reject.  When they gave LL the flu shot last year, he caught the flu. Sometimes I wonder if the medical proffession really cares about their patients, or do they just do what they do to make money and support the pharmaceutical companies, which in turn, support them. 

But here we all are, supporting each other, doing the best we can in our own homes.  LL didn't cramp last night but he's not in good shape.  He was moaning off and on through the night and I was jumping out of bed every couple of hours to check on him.  He complained of stomach pain and had the chills.  For awhile, I thought that maybe he's so weak because he's using all 1.5's but I'm thinking differently now. 

I know he doesn't want to go the hospital and I don't blame him but something has to be done.  He says he's going in on Tuesday but what if Tuesday is too late?  Oh, the worry sometimes. 

He's now up.  We'll see how the day unfolds.  When I told him my concerns, he said "it's just dialysis."  I don't know about him but I'm certainly looking forward to Tuesday when his doc will see him.  Do I worry too much?

Thank you Annie for your hugs and love, and to all of you.  I don't feel so alone as we go through this. 

Yes, we're all strong.  We have to be.

 

[Joanniebop]

TW, we were up last night as well with problems with fibrin in the tubing. I finally took him off the machine and just did a manual drain and called it a night. I saved the drain fluid just in case they want to check it for infection. He just got over a bout with peritonitis.

Have you checked LL's temperature? You know for possible signs of infection. With the stomach pains, it could be peritonitis. Not to get you nuts or anything but for Chuck, although he didn't have any stomach pain which could be because of his neuropathy all thru his body, usually stomach pain is a symptom. Chuck didn't have to go in the hospital for the treatment. I was able to do it at home. But, I wouldn't hesitate to get him there if the pain continues.

 Chuck also is too weak to walk and has been for a little over a month, but try and get the PD nurse to understand that, is not easy. Was going to call the nurse put have decided to call the DR.

Hope all goes well for you and LL.
Keep us posted, and try to rest whenever you can.  I know it's hard, but it is so important for you to stay healthy and strong.

Joannie

[The Wife]

LL had pain in his stomach last night and the chills.  When I told him I need to take fluid to the hospital so they can check if it's an infection, he told me it was pain from filling.  I placed my hand on his forehead last night and he was warm but today, he's picked up a little.  He  says he'll be fine while I pace around at night. 

Do the symptoms of an infection come and go?  He's been having a harder time during the past couple or so weeks, and last night wasn't the first time I thought about calling the ambulance.  It's just so hard to know sometimes.  Going to the hospital is not only a difficult task, it's a worry.  There are so many germs going around.  God, I hate this.  The place to go to get helped is a place that can make things worse.  The ole 'caught between a rock and a hard place.'

I'm doing okay...taking slow deep breaths when I need to and resting when I can. Sorry to hear you also had a bad night. Hope all goes well for you and Chuck, Joanie.  All of us caregivers need to stay well.

I'll keep you posted and please do the same. 

I think a few of us could use a hug today so here's a bunch for all of us...

 

[petey]

Wife and Joannie -- Bless your hearts, both of you!  As a caregiver, too, I know what you're going through.  Go with your gut feelings on what to do now -- I've found that mine are usually right.  And, when the nurse or doc looks at me like I'm too overprotective of my Marvin, I just shoot back a "what would you do if this were your husband/wife?" look.

You two take care of yourselves, too.  You're no good to your husbands unless you're in good shape.  Thinking about you both.  Worrying about you both.  Praying for you both.  Let us know.   

[Joanniebop]

WT, our last conversation more than likely just saved Chuck's life.
Let me explain.
When I replied to you and suggested that maybe you should take L's temperature at the same time I told you that I was going to call the DR., because of the problems that we had last night.  
So while waiting for the Dr. to call back I thought that I should take his BOP and his temp so that I can try and talk to the DR intelligently.
 When I went to take his temp the first time ( he is upstairs sleeping ) I couldn't get him to wake up and the reading I did get I didn't think was really accurate.
 So after a little I thought it's really important to take his temp so I went back up and it dawned on me that when I tried to take his BOP, his PK was soaked and his brow was full of perspiration I tried to get him to stay wake for the temp reading , which was normal.  DUH, then I thought I'd better take his Blood Sugar and sure enough, he was headding for a coma. His reading was 37.
To make a long story short, I did the whole OJ/Soda/candy etc.etc and his last reading was 59, which is good because it is coming up. But It took forever . Slowly the numbers were 38/47/49 and finally 59.

The Dr. finally called back and just said to wait until tomorrow so they can do culture.
After the BS episode, everything else doesn't seem so terrible.

But I know what you mean about not wanting to be in the hospital and not having a lot of confidence in your loved one's treatment. I'm not really that informed about the symptoms of the infection other than stomach pain, temp and fibrin in the tubes or bags.
Maybe someone else can clarify.

Well, for now, I can her Chuck snoring away upstairs and when he does get up, I'll have to change the sheets, caused they are soaked and get him in the shower and back into dry PJ"S.
I might just do the same thing.

Thanks for the hugs and right back at cha.      

[Joanniebop]

I don't know why but a few of my abbreviations didn't come across so in case you are perplexed, a few corrections.

WT should be TW.
L's should be LL's
BOP should be BP ( Blood pressure)
PK should be PJ ( Pajama)

Guess I was a little  kookoo

Joannie

[paris]

To the caregivers--a question?   Do women caregivers "get it" better than the men caregivers?   You are all so caring, full of worry, and spend your days doing what you can to make your spouses days easier.  I feel I spend my days (as the one with kidney failure) caring for everyone else; cooking, cleaning, keeping up with every day tasks.  There are days I don't even want to get out of my pajamas, but dinner needs to be made, bathrooms cleaned, floors scrubbed.  Then when, everyone is at work, I collapse, hurting from head to toe- too tired to move.   I know mine worries and he asks everyday how I feel.  I would like to scream how I really feel, but know that doesn't help anyone. 

It is so good to see the bond you all are forming here.  And isn't it amazing how much you can care for someone you have never met?   Sending you all peace and calm today and lots of hugs

[Joanniebop]

Paris,  emotionally it sounds like you are were I was just a few weeks ago ( with Chucks  peritonitis and his immobility, besides he is blind ) I was really a mess. But you've got the added burden of being the "sick" one.
 Is there some way you can get someone in to help with the chores even once a week or every other week ? Maybe a teenager ?
I know that sometimes family, just doesn't get it!
How tired you are...how you just have had it with everything and everyone and how you need a little time for Paris.
 Tell the family you need help.
Don't be so strong in front of them. It doesn't do you and your health any good.
I wish you some relief and soon!
We are all here for you only wish I can help you in person.
       

Joannie

[MyssAnne]

TW, I am so sorry to hear about LL, I'm glad there is no cramping, sounds as if it's finally
gonna settle down with it. Unfortunately, yes, we do have our aches and pains.  As Paris
says, we sit or lie down and just hurt all over. There are days I come home from work and
just lie down, it hurts so much.  This thread has really helped me, not feel so alone as well,
TW, between all of us, we have a hand out to someone else, and others are helped because
of that. 

Joannie, I am so glad Chuck is feeling better. That's a scary thing, but what a wonderful example
of how it all works together somehow!!

lAnnie

 

[The Wife]

Joannie, I got goosebumps reading that our conversation saved Chuck from going into a coma.  I'm so glad you were able to turn things around.  In regards to your codes, you're not kookoo, just a bit stressed.  I do the same thing...make mistakes, then come back and edit. 

And Paris, even though I'm sure there are men who are great caregivers, woman are known for their nurturing qualities.  We give birth, we breastfeed, we care for our children and homes.  I agree with Joannie.  Speak up, don't do so much, let others know you need help.  LL doesn't like to ask for my help but I always remind him that I need to know the details so that I can do the best I can for him.

Petey, Bless your soul.  You know, we know, and we're all together.

Annie, I'm glad you don't feel so alone.  It is good to come here, isn't it?  And yes, us coming together all works together somehow.

Love to all of you,
Joie

[MyssAnne]

  Paris, please, as TW says, ASK for help.  I wish I could. I would love to hire someone, I tired
hiring my niece once, my sister ended up doing the work!  I can only do so much housework AND
work 40 hours outside the house AND make sure my Dad is okay. Plus my two cats for some odd
reason DEMAND to be fed and watered. Heck, they even want a clean kitty box.  The bums.
And now my girl is pregnant (cat).  As TW says, women are nurterers. Doesn't matter if we're
sick or not, we worry and care for others.

Annie

[kidney4traci]

Sorry I keep butting in - I am not the caregiver but I tend to agree with you Paris.  I think I am strong for one part - I have to be! Three kids one in high school and two in elementary and a husband who is running our own business,  I don't have time to be sick.  My kids do care, they are angels.  My little boy and I were just singing on the hammock out back and snuggling.  He brought me my tea and book to read.  Such a doll!  But my hat goes off to you ladies, it sounds like there is alot going on in your lives too.  Your men must be very greatful.  You are all Superwomen!

Joanie, I am glad Chuck is doing better!  TW you too, glad LL is seeing the doctor this week.  Petey, glad Marvin is stable now.  Bless you all.

Paris, I recommend the help.  I have a helper doing cleaning and laundry.  It has helped me a great deal.  Now if I could only afford someone to cook for me too...

[rose1999]

Oh Paris I do feel for you.  I think that as women we are programmed to be the nurturing ones, but have you asked your family to help? They are probably so used to you doing it all that it just doesn't occur to them to offer to help.  If they just did little things like running the vac round or making the beds it would be a start.  It's hard to ask for help but they love you and I'm sure they will help you if they know how hard it is for you.  We love you too,  please try to take it a bit easier.

[petey]

As Marvin's caregiver, I always feel like I have to be the strong one.  I'm still working, physically taking care of the house and the yard, paying the bills on time, feeding and loving the canine baby, maintaining the contact with Marvin's family and with my family, questioning the doctors and nurses, researching kidney disease and everything else that Marvin's going through right now, cooking all the meals, cleaning all the bathrooms, making all the beds, washing all the clothes, and worrying about Marvin every second of every minute of every day.

I have never been the type of woman who could ask for help -- even when I needed it.  There are days when my body (and it's healthy) wants to stop, but somehow I keep going.  There are days when my brain is tired and I don't think I have the emotional, mental, or spiritual strength to keep going -- but I always do.

Yes, as women, we tend to have an awful lot to do to keep our families going, but we also put a lot on ourselves.  I have always believed that women were the stronger sex (don't mean to offend the guys here), and perhaps we were given the stronger urge to nurture and care for our loved ones because we're the ones who can handle it best.

So, ladies, what are we going to do?  I can't speak for you, but I'll say this for me.  I'm going to keep keeping on.  I'm going to do the best I can (best I can -- I'm not living up to anyone else's standards or expectations right now).  I'm going to be thankful for what I do have (and not regret what I don't have -- hey, to me, Marvin and all the high-maintenance that he requires is much better than the healthiest husband in the world and I wouldn't trade him for any other man).  I'm going to do what I can today (prioritize my list of things I have to do) and put the rest off until tomorrow.  I'm going to keep checking my mail box for that purple boa I've ordered...because a woman with a purple boa can do anything!!!

[The Wife]

I don't know how you ladies that aren't the caregivers do it.  I really don't and I hope that all of you can get help.

This morning I thought LL was doing better but I was wrong.  He was having a hard time staying awake and looks like hell.   With all of this going on, there is good news.  Two angels recently immigrated to Canada and moved into our building.  We met a few months ago and instantly connected .  A real sweetheart.  Her and her husband.  Anyway, when they asked how my hubby was doing, I told them he wasn't doing so great and I was glad he was going in for bloodwork and to the hospital to meet with the Kidney Care team on Tuesday.  When the husband asked how he would get there, I told him by bus.  Immediately, he told me to take his car, and that he would walk to work. And his wife said she would cancel her plans, "not to worry", and stay to let the Baxter delivery man into our apartment with LL's supplies while we go to the hospital.

When people like this step up, I bow my head in gratitude.  Sometimes I don't know how I'm going to manage what has to be managed but the one thing I've learned is to let go and trust.  Everything we need really does come when we need it.  And angels really do appear.

Bless my neighbours and all of you.

[kidney4traci]

Wow, TW, That is awesome work of God on your behalf!  How cool!

[paris]

Thank you sweet ladies for your replies.  It seems like when I was first diagnosed, everyone rallied--friends, relatives, etc.  Now, people have backed off---I jokingly say that I didn't die soon enough for some!  My children are great--they have very busy lives of their own and help when they can.  Of course, my sweet Beth is here right now, and she is quick to do things.  It is hard to give up the role I have played my entire life. I love taking care of people. The day Susie died, I started cooking everything in the house; cakes, chili, soups--I needed to feed people to make them feel better. Instinct.   It is so hard to accept help. I much prefer to give help. It has always been my identity. I have spent my life taking care of others.  I hate being the one who needs help.  This is becoming a rant---sorry.  I do hope your husbands understand how much you are improving their situations.  I also applaud you for being by their sides---many in your position have left.  You are all heros.

What kind neighbors you have.  There really are good people in our world.  I am glad Tuesday will be easier now for you.

[The Wife]

Monday and Tuesday!   

I have learned that giving and receiving go hand in hand.  When we give, we allow the other person to receive.  When we receive, we allow another to give.   When I think of the word, give, I think, gift.  When I give, it comes from my heart.  If someone were to refuse my gift, they would be refusing the love attached to the gift.  If someone refuses my gift, they would be asking me to close off my heart.  If I refuse the gift of another, I am asking them to close their heart.

It took me years to realize this.  In fact, I couldn’t accept help from anyone, nor could I ask.  I still don’t ask for help.  Yet, whatever is in my heart is heard, like a prayer, and I don’t even have to speak a word.  Yet, I speak, by sharing or by answering questions asked by another.   Or I speak in the silence of my breath.  When I do, a solution arrives, a question is answered, and what I need the most arrives in unexpected ways.

The first thing I do each morning is give thanks.  I give thanks for another day of breath, another day with my loved one, and for everything I have.  I even give thanks for the challenges because without them, I wouldn’t have discovered how letting go and trusting brings what I need.  By trusting, I allow life to unfold as it needs. 

[MyssAnne]

TW, what angels!!! I am just thrilled you have them, that will be so much easerer on LL to get to
the hospital via car than by bus. Bless them!!!!  Seriously, I am just trhilled!!!

I know what you ladies mean, about not asking for help. I can't. I have such a hard tme. I have NO
problem offering help, feeding people (LOVE to do that!), but I can't ask someone to take my trash
to the bin in the alley, to come to my house and move the boxes into my house (I work 40 hours
and am at work when they come).   I AM working on it though.

Paris, you have a wonderful daughter there with Beth!!!  Obviously she takes after you!!!

Ladies, I gotta go back to work.. fill is almost done.  I just wanna commend you for being so strong
and nurturing. 

I love you all!!

 

[The Wife]

Oooo...was it ever nice to drive again.  So much easier on LL too.  They drew seven viles of blood today and tomorrow we'll both head to the hospital.  It was more than they usually draw but this is a good sign.  The nurse must have gotten ahold of the doc and they're checking whatever needs to be checked.  Tomorrow we'll find out more.  And yes, my neighbours are angels!

When someone asks me to help with something, I feel honoured that they feel comfortable asking me.  There's a woman's group at the community centre and the leader hates cooking.  Because she said something, I offered to do the cooking.  I'm happy to do this and in turn she's grateful.  All around, there is joy. 

Because this group was larger than anticipated, I asked for help with the cooking.  In turn, I was granted a cooking assistant that just happens to be a student social worker.  It was great.  She plans on working in the hospital once she gets her degree.  While we cooked, I told her about some of the things we've had to deal with - the social workers that weren't helpful, and the ones that were.  In the end, she thanked me because she was learning from my experiences.  So you see, one person asks another, another receives what they need, this passes on to another, which in turn helps others. 

If I hadn't had come here to ask for help in regards to LL, Joannie wouldn't have thought to take Chuck's temperature.  As Annie says, somehow it all works together.  Yep, giving and receiving go hand in hand.

[rose1999]

If I hadn't had come here to ask for help in regards to LL, Joannie wouldn't have thought to take Chuck's temperature.  As Annie says, somehow it all works together.  Yep, giving and receiving go hand in hand.

As we say here - what goes around comes around.  Glad things are going in the right direction for you. 

[Joanniebop]

TW, so glad to hear that you and LL had a good day.
About time yeah!

Hope that tomorrow is fruitful and that LL can soon get some relief. ( You too)

Have a great night!

Joannie