Re: [CMLHope] why are you on dialysis?

[Marty Gartenberg]

Hi Susan,

I have also tried doing that but it didn't work. It is called peritoneal
dialysis and a catheter is placed into your abdomen and you infuse special
bags of glucose based dialyses.

It was able to go into but it didn't come out and I had to get another
round of surgery to remove it. My abdomen is full of scars from all of that
because they tried doing it three times but it just didn't work.

Since I also had my spleen removed because of having CML that also left a
big scar in my abdomen so that was probably another problem for not being
able to do the peritoneal dialysis at home.

Believe me if is out there then I am going to find out about it. I even
tried stem cell therapy to try and help my kidneys, but it also didn't
work. However, what it did do was to get rid of my diabetes.

I used to be on insulin but now I don't need any more of that, and my sugar
levels are around 98 to about 110 in the mornings. Since insurance didn't
cover it I had to pay, and it was very expensive to say the least.

If I do get a kidney transplant I will have to be on immunosurpressive
drugs for the rest of my life and they usually but not always cause
diabetes.

So, that's about it and I am just  like Pop Eye the sailor man... I am what
I am.

It's all about attitude and most of all, hope. I would like you to read
something that was posted by someone about me.

Go to:

http://talkbloodcancer.com/content/window-martin-gartenberg

Or simply Google my name Marty Gartenberg and look for something called The
Window.

I wrote this over twenty years ago and I have seen it plagiarized several
times. Some were not very nice but I can't stop people from doing what they
do...

18's and have a wonderful and most of all a very HEALTHY and happy holiday
season.

And by the way, GOD has blessed me. Out of transplant going on 23 years
this May 21st. It was actually on my 45th birthday that I received my bone
marrow transplant, and I'm still here. Some birthday gift, huh?

However, this really isn't about me because as I previously stated, I am
finished with my CML, it is about all of you. I know what each and every
one of you is going through and it breaks my heart just because I know.

But you know something? You are also blessed by GOD because your still
here. Even though you have some difficulties in your life from having to
take these TKI's you are also here as well.

How I would have wished that they would have been there for me at the time
rather having to go through that bone marrow transplant... Water under the
bridge, and I still go on.

Again, 18's

Marty

On Tue, Dec 11, 2012 at 10:19 AM, Susan Zimmerman  wrote:

> It’s always so good and uplifting to hear from you, Marty!!!  God bless.
> Hope you can take dialysis in your home as the new wave of care is
> happening.  My friend does that and she is so much happier because of it.
> It works while you sleep during the night.
>
> ** **
>
> 18’s,
>
> Susan zimmerman
>
> ** **
>
> *From:* cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] *On
> Behalf Of *Marty Gartenberg
> *Sent:* Tuesday, December 11, 2012 9:34 AM
> *To:* cmlhope@googlegroups.com
> *Subject:* Re: [CMLHope] why are you on dialysis?
>
> ** **
>
> Hi Jeanie,
>
> I'm not the warrior here because I have already gone through all of this.
> If anyone is a warrior here it is you and Millie and all the rest of the
> people with this disease. You are fighting and winning, and that is what
> this is all about isn't it?
>
> I read through all of the posts here and on other sites as well, and every
> one of them are warriors.
>
> I had to start on dialysis a little over one year ago. My kidneys have
> been failing for several years because of several factors. One being all of
> the radiation and chemotherapy I had almost twenty three years ago for my
> bone marrow transplant. Also as ageing comes about your kidneys become less
> effective. Not that I am an old "fart" but non the less it just happens.
>
> Who really knows, it could have been caused by many things but that is
> what I have, and I will just have to deal with it just as all of you have
> to deal with your problems. The trick to dealing with anything is to just
> accept it and simply go on with your life. No one ever said that life is a
> bowl of cherries.
>
> What actually brought my kidney failure was that my community puts down
> mulch around the houses here and there are always some bags left over that
> they leave in front of the garages. Since I have some property behind my
> home I decided to take and put that extra mulch there. Two days later I had
> a 104 fever and had to go to the hospital. I had double pneumonia and had
> to be in the hospital for three weeks. It was at that time my kidneys said
> "good bye" and I was started on dialysis while in the hospital.
>
> Maybe it also had something to do with my job and the fact that when I
> lived in Staten Island and there was an explosion of a benzine storage tank
> across the 

RE: [CMLHope] why are you on dialysis?

[Susan Zimmerman]

It's always so good and uplifting to hear from you, Marty!!!  God bless.
Hope you can take dialysis in your home as the new wave of care is
happening.  My friend does that and she is so much happier because of it.
It works while you sleep during the night.

 

18's,

Susan zimmerman

 

From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf
Of Marty Gartenberg
Sent: Tuesday, December 11, 2012 9:34 AM
To: cmlhope@googlegroups.com
Subject: Re: [CMLHope] why are you on dialysis?

 

Hi Jeanie,

I'm not the warrior here because I have already gone through all of this. If
anyone is a warrior here it is you and Millie and all the rest of the people
with this disease. You are fighting and winning, and that is what this is
all about isn't it? 

I read through all of the posts here and on other sites as well, and every
one of them are warriors.

I had to start on dialysis a little over one year ago. My kidneys have been
failing for several years because of several factors. One being all of the
radiation and chemotherapy I had almost twenty three years ago for my bone
marrow transplant. Also as ageing comes about your kidneys become less
effective. Not that I am an old "fart" but non the less it just happens.

Who really knows, it could have been caused by many things but that is what
I have, and I will just have to deal with it just as all of you have to deal
with your problems. The trick to dealing with anything is to just accept it
and simply go on with your life. No one ever said that life is a bowl of
cherries. 

What actually brought my kidney failure was that my community puts down
mulch around the houses here and there are always some bags left over that
they leave in front of the garages. Since I have some property behind my
home I decided to take and put that extra mulch there. Two days later I had
a 104 fever and had to go to the hospital. I had double pneumonia and had to
be in the hospital for three weeks. It was at that time my kidneys said
"good bye" and I was started on dialysis while in the hospital.

Maybe it also had something to do with my job and the fact that when I lived
in Staten Island and there was an explosion of a benzine storage tank across
the Author Kill River in New Jersey that carried burnt benzine across the
water way and deposited it om my house and cars. About two months after I
was diagnosed with CML, and I later found out that several of my neighbors
were also "catering" to this disease called CML.

I am now on three waiting kidney transplant lists just waiting for something
to come about. I also have two potential live donors but even with that it
is still a very complicated waiting game. They may or may not be a match for
me but it takes a lot of time to get everything in order.

One of my problems is that I was born with O+ blood type, and when I had my
bone marrow transplant my donor had B+ blood type. So, now my blood type is
B+. I am what is called a Chimera. Two different "people" living in my body.

I always try to look at some humor in my life, it just keeps me going I
guess... So, what will happen if and when I get that kidney transplant? Do
you think there will be enough room in me for another "person" living inside
of me or am I just going to explode? 

I would like to wish you and everyone here a very HEALTHY and happy holiday
season. May your upcoming year be better then it has been.

I also add my usual 18's to everyone.

Marty

On Mon, Dec 10, 2012 at 4:43 PM,  wrote:

Happy Holidays Marty,

Can you tell us again about your dialysis and why you are on it?  Good luck
to you in the coming year; you are truly a warrior; and Millie also.

Jeanie<3

 

In a message dated 12/10/2012 11:10:40 A.M. Eastern Standard Time,
ho...@ptd.net writes:

Hello again, Marty,

 

I'm taking a short break from decorating for the season.  I am about done.
It takes me a while to do little things, but in the end, I accomplish it.

 

Yes, I know that you're on dialysis and are a very strong individual.   I
have always tried to be, but we all have our days when it doesn't work.  I
always say that I kick myself in the rear when I get depressed, but it's
getting impossible for my legs to do that.:>)))  I do try very hard to
look at the bright side of life.

 

Today I have work to finish up for our quilt guild, so I plan on doing that.
I just keep plugging along like the turtle and in the end surprise myself at
what I can do.

 

You have a wonderful day and know that you are admired by many CMLers. Your
attitude is always uplifting.

Millie

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Re: [CMLHope] Tasigna and skin disorders

[Teepee710]

Hello there, its been awhile.
Has anyone found any skin color disorder  or rash problems from  Gleevec.
Thank you for all you help
   Teepee
 
 
In a message dated 6/15/2012 3:51:34 P.M. Eastern Standard Time,  
kellyeli...@aol.com writes:

Hi ladies and gents!
 
I thought I posted my current status but am having trouble finding it,  
maybe it didn't post or maybe I'm just not finding it :)  So, 4 months of  
Tasigna and I am in complete remission (Hurray!). Also, saw my pulmonologist  
and they are going to try to wean me off the pulmonary hypertension pump  
(Remodulin) Hurray, hurray, hurray!!
 
So...now for my current whiney little woes - I have developed Herpes I  
rashes on my back, it comes and goes. My GP told me that it is common in  
leukemia patients. A cold sore on my back...sheesh...doesn't hurt, seems to  
run 
along the nerve pathways and itches like the dickens. My GP prescribed a  
cream that eliminates the rash within about a week. So, no big deal, just  
annoying. At first I thought it was spider bites, WRONG. 
 
Now...within the last 2 months I have developed 4 boils. This last one  was 
a doozy - doc had to cut it open today and drain the funk out and then  
pack it. Not fun. I have never in my life had a boil, now I seem to be plagued  
with them!!  My GP does not know what is causing them. He initially told  
me to use an antibacterial soap like Dial or Lever 2000, I do, daily. Doesn't 
 seem to be working. He did take a culture from my nose today stating that 
I  could be a Staph carrier (ewww). Possibly my immune system is compromised 
and  that's why I'm developing these skin problems? He also said I 
developed  cellulitis from this last one - my leg is HUGE. I told him I think 
I'm  
incubating an alien in therehard as a rock and hurts like hell!
 
Bleh...so there's my boo hoo baby cry story. Just wondering if anyone  else 
has developed "new" problems like mine. Taking Keflex 4x a day and I go  
back to the doc on Monday. Good thing I didn't put it off, sepsis is  deadly!  
I tend to put things off because my medical bills are  overwhelming and I 
can't pay themjust can't worry about it, right?
 
Happy Dad's day to all you great fathers out there!
 
Bless you all - 18s
Kelly
-- 
[CMLHope]
A support group of _http://cmlhope.com_ (http://cmlhope.com/) 
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Re: [CMLHope] why are you on dialysis?

[Marty Gartenberg]

Hi Jeanie,

I'm not the warrior here because I have already gone through all of this.
If anyone is a warrior here it is you and Millie and all the rest of the
people with this disease. You are fighting and winning, and that is what
this is all about isn't it?

I read through all of the posts here and on other sites as well, and every
one of them are warriors.

I had to start on dialysis a little over one year ago. My kidneys have been
failing for several years because of several factors. One being all of the
radiation and chemotherapy I had almost twenty three years ago for my bone
marrow transplant. Also as ageing comes about your kidneys become less
effective. Not that I am an old "fart" but non the less it just happens.

Who really knows, it could have been caused by many things but that is what
I have, and I will just have to deal with it just as all of you have to
deal with your problems. The trick to dealing with anything is to just
accept it and simply go on with your life. No one ever said that life is a
bowl of cherries.

What actually brought my kidney failure was that my community puts down
mulch around the houses here and there are always some bags left over that
they leave in front of the garages. Since I have some property behind my
home I decided to take and put that extra mulch there. Two days later I had
a 104 fever and had to go to the hospital. I had double pneumonia and had
to be in the hospital for three weeks. It was at that time my kidneys said
"good bye" and I was started on dialysis while in the hospital.

Maybe it also had something to do with my job and the fact that when I
lived in Staten Island and there was an explosion of a benzine storage tank
across the Author Kill River in New Jersey that carried burnt benzine
across the water way and deposited it om my house and cars. About two
months after I was diagnosed with CML, and I later found out that several
of my neighbors were also "catering" to this disease called CML.

I am now on three waiting kidney transplant lists just waiting for
something to come about. I also have two potential live donors but even
with that it is still a very complicated waiting game. They may or may not
be a match for me but it takes a lot of time to get everything in order.

One of my problems is that I was born with O+ blood type, and when I had my
bone marrow transplant my donor had B+ blood type. So, now my blood type is
B+. I am what is called a Chimera. Two different "people" living in my body.

I always try to look at some humor in my life, it just keeps me going I
guess... So, what will happen if and when I get that kidney transplant? Do
you think there will be enough room in me for another "person" living
inside of me or am I just going to explode? [?][?][?]

I would like to wish you and everyone here a very HEALTHY and happy holiday
season. May your upcoming year be better then it has been.

I also add my usual 18's to everyone.

Marty

On Mon, Dec 10, 2012 at 4:43 PM,  wrote:

> **
> Happy Holidays Marty,
> Can you tell us again about your dialysis and why you are on it?  Good
> luck to you in the coming year; you are truly a warrior; and Millie also.
> Jeanie<3
>
>  In a message dated 12/10/2012 11:10:40 A.M. Eastern Standard Time,
> ho...@ptd.net writes:
>
> *Hello again, Marty,*
> **
> *I'm taking a short break from decorating for the season.  I am about
> done.  It takes me a while to do little things, but in the end, I
> accomplish it.*
> **
> *Yes, I know that you're on dialysis and are a very strong individual.
> I have always tried to be, but we all have our days when it doesn't work.
> I always say that I kick myself in the rear when I get depressed, but it's
> getting impossible for my legs to do that.:>)))  I do try very hard to
> look at the bright side of life.*
> **
> *Today I have work to finish up for our quilt guild, so I plan on doing
> that.  I just keep plugging along like the turtle and in the end surprise
> myself at what I can do.*
> **
> *You have a wonderful day and know that you are admired by many CMLers.
> Your attitude is always uplifting.*
> *Millie*
>
> --
> [CMLHope]
> A support group of http://cmlhope.com
> -
>
> You received this message because you are subscribed to the Google Groups
> "CMLHope" group.
> To post to this group, send email to CMLHope@googlegroups.com
> To unsubscribe from this group, send email to
> cmlhope-unsubscr...@googlegroups.com
> For more options, visit this group at
> http://groups.google.com/group/CMLHope
>
>  --
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>
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