Just sharing

[annabanana]

The Wife, I've missed you!  Our paths are so hard. But like Petey says, we just find the strength. We just do. We have to. Even when we don't know where the hell it's going to come from. It's so hard fighting the disease, the doctors, the whole system, the hunger, but we have to. Couldn't do it any other way. You have something inside you that I need...maybe it's because you and I are on the same (HepC) path. I don't know. But you speak for me in so many ways and for others on this site, too. Is it possible to gain strength through the understanding of others that are in so much pain? This sounds so very sad...when all I want to do is wave a magic wand over everyone to take away all the pain. Much love and hugs to you and LL.

[The Wife]

You are all so beautiful.

My strength returns as I find the courage to express myself.  And because you are all who you are, I would like to share a chapter from the book I am so close to finishing.  I wouldn't usually post this anywhere but it expresses what I'm sure so many of us go through.

Love to you all. 

[The Wife]

chapter removed ...it was just a peek for those who read it...

[Joanniebop]

Absolutely 100% " PHENOMENAL" writing.
Thank you for sharing.

Joannie

[ODAT]

Awesome TW. Chills, and sobering thoughts brought to the surface. Hope you are still writing your book. I've been lurking more than posting lately. Been kind of quiet and I was on vacation last week. Mom had her kidney appointment today - I put that in a separate post. Hope LL is doing good today. It's amazing how good sunshine can make you feel in spite of everything. 

[The Wife]

Thank you Joannie and Odat.  I was also thinking about the two of you and your loved ones.

I haven't been writing.  Sunk into a bit of a depression I guess.  This spring has been hard on me emotionally and I needed to go within.  But here I am again. 

I need to finish this book and sometimes need a nudge to push me forward.  The feedback all of you are giving is, ummm, wow!   

Sometimes I just want to crawl into bed and stay there but the sun is shining, LL's at the hospital and hopefully, they'll listen to him today.  I wanted to go with him but I had to stay back and wait for the Baxter delivery. 

He's been having a hard time with just about everything and it's time he tells them exactly how he's feeling.  Really tell them, perhaps raise his voice so they can truly hear what he has been telling them. 

[The Wife]

My friend has a young son who has cystic fibrosis. The long term prognosis is not great, and a lung transplant is hopefully an option. Anyway, she told me he was in the hospital having surgery a few years ago, I think he was 7 years old at the time. She got in bed with him to cuddle in his hospital room and they had the TV on. The news coverage on every channel showed the world was in shock over the tragic death of Princess Diana. She watched as the lines of people were shown bringing flowers and leaving cards and crying in England and France and the US. She couldn't help but be overwhelmed with what seemed strange - this outpour of emotion for a woman that most people really didn't know. Yet here next to her was a little boy suffering, and no one paid any attention. Had the world gone mad, she wondered.

Sending love to this boy and his mom.

[kitkatz]

You know your writing touches the soul.

[annabanana]

Thank you for posting part of your book. I cried. It's beautiful and real. Esp. the part about checking on his breathing. I hope you publish this book and let us know about it.

[Bajanne]

I have just read all 13 pages of this thread and am tremendously moved by the experiences and expression of those of you who have posted here.  TW, I am honoured that someone with your literary talent is part of our family.  I am looking forward to reading your book someday.  I salute all of you who are caregivers.  Just your coming to IHD speaks volumes of your care, concern and commitment to your loved one.  May you continue to find daily strength.  I love you all. 

[paris]

TW, your words are always so inspiring, calming and full of compassion.  Thank you for sharing.

[The Wife]

I woke up this morning wondering if telling how it really is scares those who are headed for dialysis.  It is never my intention to hurt anyone or cause another sadness.  And then I came here to read your responses.  Thank you.

There are many in this world who suffer with illness, the frustrations of dealing with government agencies, the medical system., and those who just don't get it and say things that are so inappropriate, it feels insensitive.  There are many who experience poverty...
my voice is just one voice and if it can bring awareness to what so many can not speak openly about, then I feel that all that I have and continue to go through is for a greater purpose.

When I was nine, I told my mom that I would one day write a book.  I didn't know that the journey I had found myself on would be the story.  One day I hope to publish my book.  In fact, I hope that it's a best seller and brings not only awareness of what many have to endure every day but money so that I can help when others find themselves in need of something.

I know I don't respond on many posts here but even though I don't, please know that I think of all of you.   

[annabanana]

The Wife, it's scary NOT knowing.

[The Wife]

I'd have to agree Anna.  I'm a person who wants to know as much as possible, what to expect, what everything means, and when I need too call 911.

Just so everyone knows, the visit LL had at his kidney care clinic yesterday went well.  I've just gained a lot of respect for his doctor because he admited they really didn't know what a person's blood pressure should be while on dialysis.  LL also told him about his state of mind and how he's been thinking about quitting dialysis.  From what he told me, his doctor truly heard him and showed compassion.  Sometimes there's nothing another person can do but a gentle and loving heart can help move one out of despair and into a place of feeling like others care about what they are going through.

LL suffers a lot of pain and they won't give him anything for it.  I think it's because they're afraid of the addiction it can cause.  His doc told him he needs to walk more.  Here's the catch:  Every single joint in his body hurts and walking increases the pain.   I guess all he can do is try and he has on the occasion but afterward, he seems to cramp all night.  Sometimes, you just don't know what to do.  And sometimes you just need someone to listen, even if they can't ever really understand.

As a caregiver, I often feel helpless but as I caregiver, I can show just how much I care. 
When I think of what a hero is, I think of all of you have to endure this disease.  How some of you work, amazes me, how some of you do it alone, amazes me, and how you continue with life even though it is filled with pain and difficulty, well...I thank you for showing me what the strength of the human spirit is all about.

With love always.

[MyssAnne]

Oh TW. What a horror for LL.  If only. If only you were close to a pool that was accessible AND warm. That would be so much help
to LL's joints. 

I AM glad his doctor listened to him. But at this point I would not worry about addiction, for heaven's sake, or rather, for LL's sake.
He NEEDS something.  I'm thinking of the two of you, so hoping that more miracles drift your way, to ease your heart, and to ease
LL's pain. 

love,
Annie
 

[del]

TW if the pain is so bad that its unbearable sometimes why don't the docs give him something.  if he gets addicted big deal at least he won't be in pain. Just my 

[The Wife]

My thoughts exactly.  What's worse?  Being addicted to pain pills or being in pain all of the time, so much that you remain a shut-in because it's too painful to walk?

Unfortunately, he was told he can't soak in a tub because he has the stomach catether. 

I'm okay...just concerned for LL and wishing there was something I could do.

[petey]

Wife --
My feelings of helplessness to make Marvin better are some of the toughest emotions I go through.  They just have to give LL something for the pain!  Don't they understand?  Oh, goodness, my heart hurts for LL and for you.  Hang in there!  I thinking about you two, and I'll say an extra prayer for you both tonight. 

[The Wife]

Thanks Petey.

LL's blood results from a few days ago just came back.  His PTH levels have increased again!  This time, it's by nearly twice...

okay...here's numbers.

On the test it says it needs to be less than 6.4.  When I spoke to the nurse last about this it was 18.3 or something like it.  I asked them why they weren't concerned about this and she told me it's because his other levels that go with this were in the normal range.  Now it's 31.9.  I've read up on what high PTH levels do and I am concerned!  AND...I'm seeing how the pain has increased for him.

Can someone please explain this to me.  I've gone to the link in general disscusion about PTH but I'm still confused.  Somewhere on the net, and I wish I had saved the link, I found that it doesn't matter if your calcium and phosphate levels are normal.  If your PTH is high, you should be concerned.

I don't understand these numbers but I can see how exhausted LL is in and how much he hurts.

[Psim]

Wish I had words of wisdom about the PTH for you, but all I have is a  Your writing is stunning. I hope today goes better.

[Joanniebop]

TW
Chuck also had elevated numbers on his PTH tests and the Dr.s put him on hectoral. Recently they increased his dosage. Too high is hyperparathyroidism.

When I did my research on the PTH here's is how I understand it to be:
The PTH hormone is what controls calcium and phosphorous levels and due to dialysis the parathyroid glands produce too much of the parathyroid  hormone which increases the amount of calcium in the blood. That calcium is removed from the bones and the intestines and release less calcium in the urine.
 SO, the result can be:
constipation...nausea..vomiting...fatigue
Therefore I believe that as far as Chuck is concerned his muscle weakness , which is not improving even with Physical therapy, could be the depletion of calcium in  his bones.
Don't know if this helps, but thought that I'd just let you know that maybe with LL's level being high it could explain the pain , weakness
 and some other problems?
We go to the dialysis clinic on Wednesday and I am anxious to see his numbers on all his blood tests.
Need to get to the bottom of his problems.
On a lighter note, we are throwing an engagement party for my middle daughter Elise next Sunday at my house. We are expecting over 50 guests.
It's going to be outside so we are praying for nice weather. We are doing everything ourselves. It's kind of exciting. I must be 

Have a great day!

Go Flyer's!!
Go Phillies!!

Joannie

[The Wife]

Thanks Psim and Joannie.

I found the link I believe on general discussion, thanks to the person who posted it on IHD.  It's now a part of my desktop.

When I read up on PTH before, I thought it had something to do with LL's pain.  I called the nurse at the clinic and told her my concerns but they're not concerned because his calcium level is okay.  From what I understand, you don't have to have high calcium levels to be concerned about the PTH levels.  The site says most doctors are wrong but try to tell them that, especially when you're not medically trained. 

How do I get them to listen and take his pain and everything else seriously if they don't think it's a problem?  I live with him and have seen the changes.  I also see how hard it is for him to walk just around the apartment on his bad days.  If they don't do something about this, he could end up in a wheelchair, have a heart attack or stroke, or worse. 

Is there a test that measures bone loss, calcification of the joints, etc, and if so, what are these tests called?  I know I would feel better if they could confirm what I suspect.  With confirmation, we could then deal with it. 

On a better note...

I was hoping for a sunny day but it's cloudy.  This is actually a good thing because I can have a puttering Sunday.

Congrats on your daughter's engagement Joannie.  Wishing all of your family members lots and lots of joy.

[Joanniebop]

It's cloudy here too!

For bone loss there is the bone density test. Don't know about calcification of the joints, but I'm with you and also worrying about Chuck getting closer and closer to being confined to a wheelchair , stroke or worse.
What is it that you suspect is causing LL's pain, weakness etc.?
I'd like to ask the Dr's at the clinic on Wed. to explore any and all possibilities for Chucks weakness and immobility.

Well, although the suns not shining and we have to face these challenges I believe that we are given them to restore us, as we struggle in faith.

Joannie

[The Wife]

What is it that you suspect is causing LL's pain, weakness etc.?
Joannie

I suspect the pain is caused from his high PTH levels.  The doctor has mentioned, before dialysis, that he did have some osteoperosis.  I imagine this was caused by the prednisone they had him on.  I also think he has gout because his big toe can become quite painful at times.  From what I understand, PD causes more weakness in patients than Hemo, plus, with high PTH levels, a machine that only does 10-14% of what healthy kidneys do, it's no wonder he doesn't have energy. 

I think we're given this to make us tired.   That, and to appreciate the good things in life.  To appreciate life itself.

[Psim]

I really hope you find some answers. Trying to get complete, reliable medical info has got to be one of the most frustrating, difficult and scary things.

I'm really feeling for your struggles with this, maybe in part because my kidney failure was cause by hyperparathyroidism that went undiagnosed for years. Even after it was clear I had ESRD, my neph ignored the slightly high calcium levels on my blood tests. I outright asked him and he said it was nothing to worry about. He even recommended I get eat more dairy products. Three months later I got a 10 pm phone call from the blood lab saying I had dangerously high calcium. So yeah, docs ignore the wrong things sometimes.

So anyway, thinking about LL's situation, I googled hyperparathyroidism and "normal calcium" and the things I read sure sounded like you can have all the symptoms without having really high calcium levels. Here's some of what I found. Best of luck in figuring this out.

http://www.surgicalroundsonline.com/issues/articles/2007-06_03.asp  is a very technical site, but might be interesting.

http://parathyroid.com/diagnosis.htm  is more plain English. Here are a few quotes from there...

"It is NORMAL for patients with hyperparathyroidism (parathyroid disease) to have calcium levels that are high one time it is checked, and normal the next time it is checked. ALL patients with hyperparathyroidism will have calcium levels that change from day to day, week to week, month to month. MOST patients with hyperparathyroidism have calcium levels that FLUCTUATE from high to slightly high, to high-normal."

<snip>

"In cases where the calcium is normal or intermittently slightly elevated and the PTH is high normal, we rely on lots of other information (for example, do they have significant osteoporosis?, do they have kidney stones?, do they have symptoms of hyperparathyroidism?, do they have excess calcium in their urine?) "

<snip>

"Well it turns out that only 32% of the last 7000 patients we operated on EVER had even ONE calcium level that was 11.5 or higher. So if you are waiting for this "magic" number, your tumor will continue to grow, you will continue to feel bad (see our symptoms page), you will continue to get worsening of your osteoporosis, and you will lose the joy of life.  And... while you are feeling bad and your bones, heart, and kidneys slowly get destroyed by the high calcium, chances are that you will never get to the "magic" number of 11.5. Most people will never get calcium levels that high, and if they do, they have more damage done to their bodies. The severity of hyperparathyroidism CANNOT be measured by how high the calcium levels are. The size of the tumor cannot be predicted based upon how high the calcium levels are. You either have parathyroid disease or you do not. How high the calcium is doesn't matter... you have a parathyroid problem or you do not. It is a yes/no question. It is not a question of "mild" or "severe". "