need some prayers

[CTDisneyfan816]

Disney will always be there. Better to have the continuity and make sure all is going well. It may have been fine to go, but if things weren't going smoothly you may be stressing out as the trip got nearer.

I am sure things are different elsewhere but currently mom is getting dialysis at the hospital and am sure there are more restrictions. If all goes well, mom will have dialysis in the AM at the hospital and then be transferred to rehab.

Where I go is at the hospital as well. Tonight they are moving me up to the large (the size they prefer to use) needles so that should help my clearances.

 

[maxaroni]

Where I go is at the hospital as well. Tonight they are moving me up to the large (the size they prefer to use) needles so that should help my clearances.

Good luck with the move up!!!!! It should help you and you are already doing well.

It must be different as in this hospital only patients in the hospital can use the center. My mom is being transferred this evening to the rehab center which also has dialysis. Not all facilities offer dialysis. As a matter of fact, dad wanted the rehab center right next to the hospital, figuring it would be easy for her sessions. No can do... It is a separate entity and can't go to the hospital for dialysis. She had dialysis today and the plan is to go until Tuesday, if possible, and have a session then. The plus is that her renal doctor goes there and will see her. This will eliminate that visit at her office. Moms PD cath was flushed today and all is good. She may be on the neck access until home.

Continue to do well!!

 

[CTDisneyfan816]

Good luck with the move up!!!!! It should help you and you are already doing well.

It must be different as in this hospital only patients in the hospital can use the center. My mom is being transferred this evening to the rehab center which also has dialysis. Not all facilities offer dialysis. As a matter of fact, dad wanted the rehab center right next to the hospital, figuring it would be easy for her sessions. No can do... It is a separate entity and can't go to the hospital for dialysis. She had dialysis today and the plan is to go until Tuesday, if possible, and have a session then. The plus is that her renal doctor goes there and will see her. This will eliminate that visit at her office. Moms PD cath was flushed today and all is good. She may be on the neck access until home.

Continue to do well!!

Thanks. Last night I hit my dry weight which is also the weight I wanted to be at. (Lost 135 pounds over the past few years). I am surprised as the place I go to encourages visitors as they believe interaction with others is a valuable part of treatment.

 

[maxaroni]

Thanks. Last night I hit my dry weight which is also the weight I wanted to be at. (Lost 135 pounds over the past few years). I am surprised as the place I go to encourages visitors as they believe interaction with others is a valuable part of treatment.

You are inspiring. You are doing so well and so happy to hear that you are feeling well. It is not easy to be at the point of needing dialysis, yet you are doing well and feeling better. Congrats!!!

I totally agree with you as far as having people with you during your treatment. I went with my girlfriend during her chemo treatments when her DH wasn't available. It gave us time to catch up, she had a shoulder to cry on, or sit in silence but knowing I was there was a comfort to her. It seems to be more of of the stance of bringing in germs to others….at this point, it isn't a huge deal for us as mom will be doing PD at home. She's only doing this until her catheter is ok to use. Not sure if the transition will be during her time in rehab (she's there at least until 11/15), or once she is released.

 

[CTDisneyfan816]

You are inspiring. You are doing so well and so happy to hear that you are feeling well. It is not easy to be at the point of needing dialysis, yet you are doing well and feeling better. Congrats!!!

I totally agree with you as far as having people with you during your treatment. I went with my girlfriend during her chemo treatments when her DH wasn't available. It gave us time to catch up, she had a shoulder to cry on, or sit in silence but knowing I was there was a comfort to her. It seems to be more of of the stance of bringing in germs to others….at this point, it isn't a huge deal for us as mom will be doing PD at home. She's only doing this until her catheter is ok to use. Not sure if the transition will be during her time in rehab (she's there at least until 11/15), or once she is released.

I think once she gets into the dialysis, overall she also will have much more energy. I sit at a computer for 8 hours at work and every day, several times, I would sit and start closing my eyes because the fatigue would start in. But the last week because of the treatment and the epogen/iron injections, the last week I've had no problems at all. In about 3 weeks they are going to start in with the button holes which is establishing a same point of entry into the fistula. Once established (it takes three weeks) they will move to a blunt needle so placing the needles into start will be painless. I've come to a point in my life where I make the best out of the situation. The situation is what it is, so make the most of the time I'm am NOT on dialysis (and feeling better because of it).

 

[CTDisneyfan816]

Some good news. Blood work back that was taken last week. After one month of dialysis, my hemoglobin (anemia) is up to 10.1 (from 7.0 last month). 13-17 is normal. So I am now just somewhat anemic as opposed to critically anemic. My energy level is much better now. And my clearances are now above normal. Clearances means how well they are dialyzing me. So they lowered my time down to 3 3/4 hours.

 

[maxaroni]

Some good news. Blood work back that was taken last week. After one month of dialysis, my hemoglobin (anemia) is up to 10.1 (from 7.0 last month). 13-17 is normal. So I am now just somewhat anemic as opposed to critically anemic. My energy level is much better now. And my clearances are now above normal. Clearances means how well they are dialyzing me. So they lowered my time down to 3 3/4 hours.

Very very good,

Not sure how my mom is doing as far as numbers and such. As of Saturdays treatment she was put on fluid restrictions. Saturdays session was late in the day and my dad didn't go back. She was to have dialysis again today and may know more.

Glad to hear you are doing so well. This is not an easy road to travel, yet you are responding so well.

 

[CTDisneyfan816]

Very very good,

Not sure how my mom is doing as far as numbers and such. As of Saturdays treatment she was put on fluid restrictions. Saturdays session was late in the day and my dad didn't go back. She was to have dialysis again today and may know more.

Glad to hear you are doing so well. This is not an easy road to travel, yet you are responding so well.

Not surprised about the fluid restriction. I am limited to a quart and a half of fluids per day. That also includes soups, ice cream or anything that would be liquid at room temperature. I am finding the restriction to be tougher mentally than physically. I have been used to having a large water bottle filled with ice water all day at work so it's more mentally challenging not having it.

 

[CTDisneyfan816]

This was the week I was supposed to be in Disney and of course what does it do here yesterday and today? Ice storm, snow storm.

 

[Kerrio929]

This was the week I was supposed to be in Disney and of course what does it do here yesterday and today? Ice storm, snow storm.

I am supposed to be in Vegas but due to the weather I couldn't make it out until late last night. Was supposed to leave at 6am tomorrow. I wasn't flying all the way there (I live in NY) for 1 day...

Stupid weather

 

[CTDisneyfan816]

I am supposed to be in Vegas but due to the weather I couldn't make it out until late last night. Was supposed to leave at 6am tomorrow. I wasn't flying all the way there (I live in NY) for 1 day...

Stupid weather

That stinks, sorry about that. Yes I can definitely understand not flying that long distance just for one day.

 

[maxaroni]

How are you doing?
My mom passed 3/5 from ESRD and had a very hard last few months. She is now pain free and went peacefully

 

[CTDisneyfan816]

How are you doing?
My mom passed 3/5 from ESRD and had a very hard last few months. She is now pain free and went peacefully

I am sorry for your loss. I can fully understand.

Haven't stopped by in awhile as when Disney isn't an upcoming trip, I tend to stay away. I am doing good. Dialysis going well. And a viable donor has been found! She has to go through the same testing I did but if that passes, I will be all set. She has agreed (if it is not a match) to go through the kidney swap program which would trade kidneys with a donor somewhere else. In the meantime, a planned trip to Italy fell through as they don't have a facility with openings. I just got back from Myrtle Beach, SC and since after surgery I can't go on any rides for over a year. And with just trying dialysis away from my home unit and having no issues, I am going to Disney/Universal in July! I have a friend moving there in June 25 minutes north.

 

[maxaroni]

I am sorry for your loss. I can fully understand.

Haven't stopped by in awhile as when Disney isn't an upcoming trip, I tend to stay away. I am doing good. Dialysis going well. And a viable donor has been found! She has to go through the same testing I did but if that passes, I will be all set. She has agreed (if it is not a match) to go through the kidney swap program which would trade kidneys with a donor somewhere else. In the meantime, a planned trip to Italy fell through as they don't have a facility with openings. I just got back from Myrtle Beach, SC and since after surgery I can't go on any rides for over a year. And with just trying dialysis away from my home unit and having no issues, I am going to Disney/Universal in July! I have a friend moving there in June 25 minutes north.

Thank you. Mom had many other health issues, therefore, had many challenges to face.

Happy to hear you are doing well. Wow, a possible donor? That is wonderful news. My girlfriends mom was actually a donor for her dad. All went well and hard to believe a spouse being the donor. Happy to hear you are going to Disney, something wonderful to look forward to.

 

[CTDisneyfan816]

Thank you. Mom had many other health issues, therefore, had many challenges to face.

Happy to hear you are doing well. Wow, a possible donor? That is wonderful news. My girlfriends mom was actually a donor for her dad. All went well and hard to believe a spouse being the donor. Happy to hear you are going to Disney, something wonderful to look forward to.

Provided I can get dialysis lined up but I think I will. I have a friend moving 25 miles north of Disney next month so I will have a place to stay. I went to Myrtle Beach, SC last week so I am comfortable now with going away.

 

[CTDisneyfan816]

Well it's official. I am going back to Disney one month from today. I am going down July 19-27. Have a 4 day pass to Disney, 2 at Universal and we will do Cape Kennedy another day and a baseball game (the hated Red Sox at Tampa Bay on either the 25th or 26th). My contact at my dialysis facility is setting up dialysis for me while I am down there. I went to Myrtle Beach and got a time of 4:35 am. Which meant I was done by 9. I hope for the same!

 

[Storeyann]

Well it's official. I am going back to Disney one month from today. I am going down July 19-27. Have a 4 day pass to Disney, 2 at Universal and we will do Cape Kennedy another day and a baseball game (the hated Red Sox at Tampa Bay on either the 25th or 26th). My contact at my dialysis facility is setting up dialysis for me while I am down there. I went to Myrtle Beach and got a time of 4:35 am. Which meant I was done by 9. I hope for the same!

Happy to hear you'll be able to make it! Yay!

 

[CTDisneyfan816]

Just as I have a friend going on the kidney paired exchange program (they will look to arrange a trade of kidneys between my donor and someone else's as my friend is not a match for me) and it looks possible a new kidney could come in 4-6 months time (hopefully) I just booked another trip to Disney for December (when I usually go). So two trips in six months? I think I can handle it!