Hanging on by a thread

[kitkatz]

I have had my inter medicine doctor for sixteen years now.  He knows me.  He called me today! The X-ray results were back.  Congestive heart failure and possible pneumonia. Wants me on antibiotic.  Well now we know why I am coughing a lung up.
No Barry Manilow concert in LA for me tomorrow night. I gave my tickets to a friend of mine who is my age. She is taking a date. I asked her to get me a program and a T-shirt or CD from the concert.
I cried.  My daughter is coming over tomorrow to keep me company and take me to lunch somewhere.  I have to call dialysis center and redo schedule in the morning. Damn it!

[Sugarlump]

Thinking of you hope you get to go out for a nice lunch
Haven't heard Barry Mannilow for years ... but I remember singing Mandy!!! in my youth 

[willowtreewren]

I don't know what to say, dear KK.

I am thinking of you daily. I wish I could fly out there and fix you up a wonderful meal (or several to put in the freezer!).

Sending love.

Aleta

[monrein]

So sorry to read this KK. I hope you feel better soon and the antibiotics can work some bit of magic. Thinking of you with my very best wishes.

[MooseMom]

I hope a visit from your daughter and a nice lunch out have made you feel a bit happier.

Have you started the antibiotics yet?  I hope they will help.

What will your docs do to treat your CHF?

Love to you, along with a lot of prayers and happy thoughts. 

[kitkatz]

Dialysis will work on pulling the excess fluid from me as much as possible to treat the CHF.
The antibiotic should kick in over the next few days I hope.
Plus- my girls who have not spoken to each other in ten years a re speaking to one another. Hurray!

[okarol]

Dialysis will work on pulling the excess fluid from me as much as possible to treat the CHF.
The antibiotic should kick in over the next few days I hope.
Plus- my girls who have not spoken to each other in ten years a re speaking to one another. Hurray!

  Hope they get you more comfortable.
Yes, having the girls speak is PRICELESS! 

[PrimeTimer]

B-u-m-m-e-r about the CHF. Sorry to hear that. Guess no dancing at the Copacabana for a while...Hopefully the antibiotics will dry up the pneumonia and keep you out of the hospital. Maybe your daughters are talking because they're worried that you might be crazy since you GAVE AWAY your Barry Manilow tickets. GET WELL SOON!   

[jeannea]

I hope you can feel better soon. Pneumonia is awful. CHF can't feel good either.

[kitkatz]

Me not going to the concert I waited on for two months and wanted to go to so badly really got Danielle worried enough to Facebook my younger sister who got a hold of my youngest daughter in Oklahoma. The girls then Facebooked each other and then had an hour's phone call at my house yesterday afternoon.  Now whether it was bullshit or not it makes me happy these two are at least talking again.

I missed the concert but my daughter let me put Manilow onCD in her car when we went to lunch yesterday. I had him playing on my computer until I went to D last night.


Oh how I hate this damn dialysis and all the shit that comes with it!!!!

[angroid]

I was once told by a very wise man that things bother us, any things, only so long as we allow them to bother us.
I feel or have felt every single thing you are feeling. The more I meditate on my "plight", the more it all hurts.
When I am with friends, doing something, living life - it doesn't bother me as much.

Get angry, and do not despair, the worst is death, and it stops for no one.

angroid

[jeannea]

Barry Manilow is fabulous! I'm so sorry. At least you can listen to your CDs.

[kitkatz]

Update: I down from 98 kilos to 93.4 kilos, almost 11 pounds taken off in two to three weeks. Fluid overload I would guess.  D doctor thinks I am losing weight and we just did not catch up with it.  I am really careful with fluids and then try to take an extra kilo off in addition to what I bring in. 
Pulmonary ordered Pulmonary function test and a CT chest xray.
I see cardiologist on Wednesday.

[jeannea]

I hope taking that fluid off helps you. It's great to have a doc who works with you.

[MooseMom]

I'm eager to hear what the cardiologist has to say on Wednesday. 

[okarol]

I'm eager to hear what the cardiologist has to say on Wednesday.

me too 

[kitkatz]

The cardiologist says my coughing is related to dialysis and fluid overload lately.  I must be losing weight and not known it until fluid overload landed on me.  He says the aortic stenosis related to the heart valve is not any worse than it was a year or so ago.  Just keep keeping on and see him as needed.  He will order and echocardiogram for next year.  He says dialysis will make the aortic stenosis worse with time as calcium lands in there.  One day they will have to go in and fix it, but not now.  He was not worried.
On another note he did tell me my nephrologist has left Kaiser.  Kaiser has done nothing to give me  a new nephrologist.  For someone on dialysis for sixteen years they seem to not care for giving me appointments.  I had to call nephrology and get my own damn appointment today.  They did not even inform me my old nephrologist left.

[kristina]

Helllo kitkatz,
I do hope you can consult with your new nephrologist soon and I am glad
that the echocardiogram turned out with a manageable explanation.
The question is now: why are you losing weight? Are you on a slimming diet
or is there another explanation for your sudden weight-loss to be found?
Best wishes from Kristina.

[PrimeTimer]

The cardiologist says my coughing is related to dialysis and fluid overload lately.  I must be losing weight and not known it until fluid overload landed on me.  He says the aortic stenosis related to the heart valve is not any worse than it was a year or so ago.  Just keep keeping on and see him as needed.  He will order and echocardiogram for next year.  He says dialysis will make the aortic stenosis worse with time as calcium lands in there.  One day they will have to go in and fix it, but not now.  He was not worried.
On another note he did tell me my nephrologist has left Kaiser.  Kaiser has done nothing to give me  a new nephrologist.  For someone on dialysis for sixteen years they seem to not care for giving me appointments.  I had to call nephrology and get my own damn appointment today.  They did not even inform me my old nephrologist left.

You can probably expect to have an echocardiogram every year from now on to monitor your heart. Hope your symptoms improve soon with fluid removal. Can't believe you weren't informed about your nephrologist! WTH?!! It's things like that that anger AND scare me! Geez, we really do have to stay up on everything ourselves. I've had my share...from being incorrectly told that I needed surgery when come to find out, it was another patient who happened to have the same name as me who was actually the one who needed surgery. Glad I had them "triple check" their records! Another time, several months had passed by before someone realized that no one had called me about some suspicious lab results and to be retested. Thank goodness it wasn't cancer. Anyway, I know medical offices are overwhelmed but that is no excuse for them to not assign staff to notify patients when their doctor has left, no matter how busy they may be....as if the patients themselves don't already have enough to deal with! I wonder how long they would have let you gone without an appointment before realizing they had not set you up with a new nephrologist. Well, you're right...just gotta keep on keeping on and seems you are very good at that. Next time you go in, give ''em "a look".     

[okarol]

The cardiologist says my coughing is related to dialysis and fluid overload lately.  I must be losing weight and not known it until fluid overload landed on me.  He says the aortic stenosis related to the heart valve is not any worse than it was a year or so ago.  Just keep keeping on and see him as needed.  He will order and echocardiogram for next year.  He says dialysis will make the aortic stenosis worse with time as calcium lands in there.  One day they will have to go in and fix it, but not now.  He was not worried.
On another note he did tell me my nephrologist has left Kaiser.  Kaiser has done nothing to give me  a new nephrologist.  For someone on dialysis for sixteen years they seem to not care for giving me appointments.  I had to call nephrology and get my own damn appointment today.  They did not even inform me my old nephrologist left.

Is there no neph in your clinic who checks you once a month? I thought that was required? Are you still doing nocturnal?

[kitkatz]

There is a neph at dialysis clinic and yes, I am still on nocturnal. The neph and I at dialysis are having a great time with blood pressure meds.  My body does not like anything.  So we try all sorts of stuff. 
I am down from 98 kilos to 90.4 as of last night. That puts me around 200 pounds.  I have not weighed that little in twenty years.  I saw the Kaiser neph.  SHe recommends trying for transplant again. Sigh. We shall see what happens this time.  I supposed to hear from transplant coordinators sometime soon.

[willowtreewren]

 

What a story! I can't believe they didn't tell you your neph had left and didn't set you up with a new one!!!!! 

Are you trying to lose weight? That is alot of weight loss if you aren't trying! But at least you know why you were fluid overloaded!

I'm pulling for you.

Aleta

[Rerun]

That is positive that they want you to try for a transplant.  I'm praying for that. 

           

[kitkatz]

Several years ago was heartbreak city for transplant when they said no unless you get serious back surgery for a mass I have always had and has not done anything for years but sit where it is.  She said she would look into my files.  I wished her luck. She said yes you have a large medical file. No kidding.  She seemed pretty postive about it. We shall see. I am going to be proactive and see my dentist and get clearance already in hand. 

[kristina]

Hello kitkatz,
I wish you good luck and send you all my best wishes,
Kristina.