# need some prayers



## CTDisneyfan816

Just last week I booked my December trip to Disney. Today I found out my Stage 5 kidney disease is worsening to the point where I will likely need dialysis in 3 weeks. This will mean being at the hospital for 3-4 hours a day, 3 days a week. He said that I could have dialysis down there but that will really cut into my time.


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## mom of four

I just wanted to let you know that I am praying for you.  I hope things will change and you will gain a little more kidney function so you don't have to go on dialysis.  If things don't change maybe you could arrange treatment for the evening while on vacation, so you can have the day to do fun things.  Praying!!!!


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## wiigirl




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## Auntie L.

Please take care. Something will work out. You're in my prayers.


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## CTDisneyfan816

Thanks all. IF I have to start soon (already had the fistula put in place which is how the dialysis is administered) it would be 3-4 hours a day, 3 times a week. I know most dialysis places are open at night to accommodate those who work. So if I went to the parks at rope drop (which I do anyway) and stay until around 3-4 each day, I could go get something to eat and then go for dialysis after. Not optimal but at least I would still be able to go.


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## mommasita

Thoughts and prayers..


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## 1GR8DISNEYFAN

My prayers are with you. Even if you must start dialysis before Dec., I hope you will still go on your Disney trip. Maybe you will find that having your treatments while on vacation is manageable, and you will be able to continue with future trips. If you have to have treatments, it is better to be at Disney. Being such a lover of Disney, I would hate to see you have to give up your trips. Please hang in there and know that many people are praying for you. Stay positive and try to continue enjoying Disney no matter what!


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## maxaroni

Sending prayers and 

What are your numbers if you don't mind me asking and how are you feeling, in general.  

My mom is at stage 5 kidney disease but not quite ready for dialysis.  She is still eating fairly well.  She eats breakfast and dinner....her appetite has lessened and eats because she has to.  Lost taste for meat.  She has a multitude of other health problems and not a candidate for hemodialysis or a fistula in her arm or leg.  Therefore, peritoneal dialysis and my dad will be doing it at home.  The access port isn't done as far ahead as the fistula is, so she hasn't done that yet.  Due to her other health issues (many strokes, blocked brain artery, etc, etc, she is nearly homebound and is in a scooter or wheelchair.  She can walk a tiny bit with a walker but is very unsteady.  

At any rate her creatinine went up at her last renal visit but thinking it was due to the lasix, they took her off of that for 2 days and lowered her dosage.  Her creatinine went up again and without her usual dosage of lasix, she was retaining fluid and got a cough.  She does have some fluid around her heart that is monitored.  Once back on the proper lasix dosage, the fluid lessened as did her cough.

She is not a candidate for surgery, so when it is time, we worry about if she can make it through surgery.  She also has a nodule on her lung that is increasing and enlarged lymph nodes in her chest but the nodule isn't large to biopsy but probably won't do anything anyway, so why put her through that.

The renal doctor told my dad to look for loss of appetite, as in not really eating and/or vomiting.  Those would be good indicators of the timing of dialysis.

Wishing you all the very best and you will go to WDW...it will happen.


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## old lady

My prayers are with you. I hope you still can go to Disneyworld so you can enjoy yourself for Christmas.


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## CTDisneyfan816

maxaroni said:


> Sending prayers and
> 
> What are your numbers if you don't mind me asking and how are you feeling, in general.
> 
> My mom is at stage 5 kidney disease but not quite ready for dialysis.  She is still eating fairly well.  She eats breakfast and dinner....her appetite has lessened and eats because she has to.  Lost taste for meat.  She has a multitude of other health problems and not a candidate for hemodialysis or a fistula in her arm or leg.  Therefore, peritoneal dialysis and my dad will be doing it at home.  The access port isn't done as far ahead as the fistula is, so she hasn't done that yet.  Due to her other health issues (many strokes, blocked brain artery, etc, etc, she is nearly homebound and is in a scooter or wheelchair.  She can walk a tiny bit with a walker but is very unsteady.
> 
> At any rate her creatinine went up at her last renal visit but thinking it was due to the lasix, they took her off of that for 2 days and lowered her dosage.  Her creatinine went up again and without her usual dosage of lasix, she was retaining fluid and got a cough.  She does have some fluid around her heart that is monitored.  Once back on the proper lasix dosage, the fluid lessened as did her cough.
> 
> She is not a candidate for surgery, so when it is time, we worry about if she can make it through surgery.  She also has a nodule on her lung that is increasing and enlarged lymph nodes in her chest but the nodule isn't large to biopsy but probably won't do anything anyway, so why put her through that.
> 
> The renal doctor told my dad to look for loss of appetite, as in not really eating and/or vomiting.  Those would be good indicators of the timing of dialysis.
> 
> Wishing you all the very best and you will go to WDW...it will happen.



Sounds similiar to me. In July my edema was high so he upped my lasix (to 240 MG morning and night). I lost the weight but my creatinine level went to 5.62. He lowered the lasix back down to 160 MG. I go for blood work this week. I actually still feel good. I still have a moderate appettite for protein. My only real physical issue is fatigue from anemia but that is also being treated. No vomiting at all. I am hoping that I can hold it off until after my trip. I am still planning on taking trips in the future but am hoping for one last unencumbered visit before I start.


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## maxaroni

CTDisneyfan816 said:


> Sounds similiar to me. In July my edema was high so he upped my lasix (to 240 MG morning and night). I lost the weight but my creatinine level went to 5.62. He lowered the lasix back down to 160 MG. I go for blood work this week. I actually still feel good. I still have a moderate appettite for protein. My only real physical issue is fatigue from anemia but that is also being treated. No vomiting at all. I am hoping that I can hold it off until after my trip. I am still planning on taking trips in the future but am hoping for one last unencumbered visit before I start.



It is not a fun journey.  My moms nephrologist wants her to get to 10-12% if possible before starting dialysis but if she starts feeling bad it could be any time. She said some people are upwards of a creatinine # of 10+ and others much lower.   She does get restless legs at times, has leg cramping, arm tremors, edema and has been hospitalized when things go out of whack. Congestive heart failure and obstructive sleep apnea needing a cpap.  Her nails have changed colors as has her skin.   We will see in October where her numbers are

Wishing you long while before you need to proceed and a me to go to WDW unincumbered.  You seem to have a good frame of mind and saying prayers for you


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## CTDisneyfan816

maxaroni said:


> It is not a fun journey.  My moms nephrologist wants her to get to 10-12% if possible before starting dialysis but if she starts feeling bad it could be any time. She said some people are upwards of a creatinine # of 10+ and others much lower.   She does get restless legs at times, has leg cramping, arm tremors, edema and has been hospitalized when things go out of whack. Congestive heart failure and obstructive sleep apnea needing a cpap.  Her nails have changed colors as has her skin.   We will see in October where her numbers are
> 
> Wishing you long while before you need to proceed and a me to go to WDW unincumbered.  You seem to have a good frame of mind and saying prayers for you



Thanks. Other than occasional edema which I am able to largely control with my diet I haven't had any issues. I am hoping I am able to (but I"m not going to if it will jeapordize my health) hold off until after Disney. Now I was just invited to spend two weeks with my Goddaughter's family in Italy next July. They rented a place right outside of Venice for the whole month of July. I woud love to last until then but I doubt it. We will see.


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## CTDisneyfan816

I just found out that I will be starting dialysis next week.


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## maxaroni

CTDisneyfan816 said:


> I just found out that I will be starting dialysis next week.



I am sorry to hear this.  However, you've got tons of prayers from me and hoping that with the 2 months prior to your trip, your body will adjust. Yes, you will have a different trip than you planned but you will be in WDW and The Happiest Place on Earth.....lots of 

What is your creatinine level and kidney function?  My mom goes back to the doctor the end of October, unless something happens before that.


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## CTDisneyfan816

maxaroni said:


> I am sorry to hear this.  However, you've got tons of prayers from me and hoping that with the 2 months prior to your trip, your body will adjust. Yes, you will have a different trip than you planned but you will be in WDW and The Happiest Place on Earth.....lots of
> 
> What is your creatinine level and kidney function?  My mom goes back to the doctor the end of October, unless something happens before that.



Thank you. Creatinine is 5.20. That wasn't the part that alarmed the doc, my BUN was up to 101 which means the toxin level is real high. I asked my doctor again about Florida and he said to let them know when and where I'll be going and they will assist me in setting up the times.


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## maxaroni

CTDisneyfan816 said:


> Thank you. Creatinine is 5.20. That wasn't the part that alarmed the doc, my BUN was up to 101 which means the toxin level is real high. I asked my doctor again about Florida and he said to let them know when and where I'll be going and they will assist me in setting up the times.



Not sure where my moms BUN is falling.  I get info from my dad and being nearly 78 and her primary caregiver, he is overwhelmed.   It seems as though your doc has a good handle on things and understands your goal for WDW. Once you've traveled once, you will know what to expect and it may not be the ideal situation, but it may not be as worrisome.  My friends dad did quite a bit of traveling on dialysis and seemed to do ok. 

Saying prayers all goes well for you.


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## CTDisneyfan816

maxaroni said:


> Not sure where my moms BUN is falling.  I get info from my dad and being nearly 78 and her primary caregiver, he is overwhelmed.   It seems as though your doc has a good handle on things and understands your goal for WDW. Once you've traveled once, you will know what to expect and it may not be the ideal situation, but it may not be as worrisome.  My friends dad did quite a bit of traveling on dialysis and seemed to do ok.
> 
> Saying prayers all goes well for you.



Thanks. My hope is to have the dialysis late afternoon so that way I can get to the parks at rope drop. I normally do what I like to do by 3 pm anyway so that will leave me time to go for dialysis and a late dinner. I am a very determined person and plan on living as normal of a life as I can.


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## maxaroni

How are you doing?   Thinking of you


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## CTDisneyfan816

maxaroni said:


> How are you doing?   Thinking of you



Thanks!  I had to have some unplanned surgery Thursday to have a partial blood clot removed from the arm I had my fistula (where they do the dialysis). It isn't an uncommon complication. First dialysis was on Friday and I have to say I haven't felt this good in years. But until the fistula is fully matured (January they hope), they can't place the permanent entrance for dialysis. Unitl then it is tricky and painful. For that reason I decided to cancel my December trip to Florida. I am also planning a trip to Italy next Summer that by then things should be smoothed out and then hopefully a return to Disney the following December.


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## maxaroni

CTDisneyfan816 said:


> Thanks!  I had to have some unplanned surgery Thursday to have a partial blood clot removed from the arm I had my fistula (where they do the dialysis). It isn't an uncommon complication. First dialysis was on Friday and I have to say I haven't felt this good in years. But until the fistula is fully matured (January they hope), they can't place the permanent entrance for dialysis. Unitl then it is tricky and painful. For that reason I decided to cancel my December trip to Florida. I am also planning a trip to Italy next Summer that by then things should be smoothed out and then hopefully a return to Disney the following December.



Sounds as if you have a good attitude and are going to do well with dialysis. Glad to hear you felt better after your first time.  I have heard some feel better and don't realize how bad they had been feeling as it is so gradual in declining. There will be ups and downs and complications but if the good outweighs the bad and the complications held to minor and few, you will be fine.  I am sorry you had to cancel your December plans but another thing to look forward to next year.  WDW isn't going anywhere. 

My mom is not a candidate for a fistula and has other serious health issues.  Her renal doc does not feel a graft  is right for her either. She had a consult with the surgeon and he concurs Therefore, doing peritoneal dialysis at home. My dad will need to do it all for her. A huge complication will be infection. 

Saying prayers for you and hoping things go well for you.  I had surgery last week as I fractured my wrist after falling in Barbados. I keep thinking how much I am limited and then think of my mom.  I have no right to whine.


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## CTDisneyfan816

maxaroni said:


> Sounds as if you have a good attitude and are going to do well with dialysis. Glad to hear you felt better after your first time.  I have heard some feel better and don't realize how bad they had been feeling as it is so gradual in declining. There will be ups and downs and complications but if the good outweighs the bad and the complications held to minor and few, you will be fine.  I am sorry you had to cancel your December plans but another thing to look forward to next year.  WDW isn't going anywhere.
> 
> My mom is not a candidate for a fistula and has other serious health issues.  Her renal doc does not feel a graft  is right for her either. She had a consult with the surgeon and he concurs Therefore, doing peritoneal dialysis at home. My dad will need to do it all for her. A huge complication will be infection.
> 
> Saying prayers for you and hoping things go well for you.  I had surgery last week as I fractured my wrist after falling in Barbados. I keep thinking how much I am limited and then think of my mom.  I have no right to whine.



Hope you feel better!

They brought up eventually doing it at home. I'm not sure I could do that myself. 

Second dialysis was even better. Lost 10 more pounds of water last night. Once my fistula is fully matured they will place a permanent entrance into it which will make it much easier. They estimate mid-winter so by the time I travel again I will feel much more comfortable than I do now.


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## Luv0fDisney

i am sorry to hear that. i will be sending prayers.


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## DisneyFairytale

That is great news! hope you continue to do well with it. Sorry to hear about the Disney trip tho. You never know when you might be able to book a trip last minute perhaps. Lets start the countdown until your next trip!


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## maxaroni

CTDisneyfan816 said:


> Hope you feel better!
> 
> They brought up eventually doing it at home. I'm not sure I could do that myself.
> 
> Second dialysis was even better. Lost 10 more pounds of water last night. Once my fistula is fully matured they will place a permanent entrance into it which will make it much easier. They estimate mid-winter so by the time I travel again I will feel much more comfortable than I do now.



Thanks!  Post op today...stitches out, new splint and start mild PT.  Still 6 weeks to go but past the worst.

So glad to hear that your second dialysis treatment was even better.  It will all fall into place and you will have your routine and feel better.  I know it takes awhile for the fistula to fully mature  With the graft, my mom can't have it placed too early, however, you can use it sooner.  The other downside to the graft is that it doesn't last as long as the fistula.  However, mom has so many major health issues....who knows.  

Sending prayers and


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## maxaroni

Thinking of you. Hope all is going well and you are adjusting. 

My mom landed in the hospital Tuesday morning, diagnosed with congestive heart failure and pneumonia. It's not the first time we've been down this road, however, she had an echocardiogram and her heart is now functioning at 35%. With that and her kidney numbers, she will be having her catheter put in for peritoneal dialysis on Tuesday.  She is frightened, rightfully so, but I am very nervous as she is not a candidate for surgery.  She has other major health issues and we don't know how well she will tolerate dialysis.  

Please say a prayer for her.


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## CTDisneyfan816

maxaroni said:


> Thinking of you. Hope all is going well and you are adjusting.
> 
> My mom landed in the hospital Tuesday morning, diagnosed with congestive heart failure and pneumonia. It's not the first time we've been down this road, however, she had an echocardiogram and her heart is now functioning at 35%. With that and her kidney numbers, she will be having her catheter put in for peritoneal dialysis on Tuesday.  She is frightened, rightfully so, but I am very nervous as she is not a candidate for surgery.  She has other major health issues and we don't know how well she will tolerate dialysis.
> 
> Please say a prayer for her.



I'm sorry to hear that, she definitely will be in my prayers. They can do dialysis at different levels, they may very well at first start her at a lower level to see how she aclimates. I am fortunate in that so far my heart is fine. In the two weeks I've been on dialysis, I've lost 48 pounds in water weight which has made me feel a lot better. And they have me on a lower level due to the fact my fistula isn't fully mature. I am going next month for extensive testing to see if I can be placed on the transplant list. The reasons they gave for not going on, I do not believe apply to me so I'm anticipating I will be on it. 

I hope things work out for your mother!


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## maxaroni

CTDisneyfan816 said:


> I'm sorry to hear that, she definitely will be in my prayers. They can do dialysis at different levels, they may very well at first start her at a lower level to see how she aclimates. I am fortunate in that so far my heart is fine. In the two weeks I've been on dialysis, I've lost 48 pounds in water weight which has made me feel a lot better. And they have me on a lower level due to the fact my fistula isn't fully mature. I am going next month for extensive testing to see if I can be placed on the transplant list. The reasons they gave for not going on, I do not believe apply to me so I'm anticipating I will be on it.
> 
> I hope things work out for your mother!




Thanks!

Glad to hear you are feeling better after losing all of that fluid.  Still more to go?
Wishing you all the best with the transplant list.  

The PD catheter takes 2 weeks to heal and they need to go for lessons. However, if not running into an emergent situation, she should be on dialysis soon.  

Prayers to you that things keep on going well, you continue to feel better and you are able to get on the transplant list.


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## CTDisneyfan816

maxaroni said:


> Thanks!
> 
> Glad to hear you are feeling better after losing all of that fluid.  Still more to go?
> Wishing you all the best with the transplant list.
> 
> The PD catheter takes 2 weeks to heal and they need to go for lessons. However, if not running into an emergent situation, she should be on dialysis soon.
> 
> Prayers to you that things keep on going well, you continue to feel better and you are able to get on the transplant list.



Thanks, up to 50 pounds off now. I am almost to my dry weight as the amount of fluids each time is less. Two weeks isn't that bad. For a fistula which I have, it takes 4-6 weeks before it can be used. And because I had to have that blockage removed a few weeks ago, they don't think it will be fully mature until mid-winter. At that point, once they put the button holes in (meaning same entry each time), I'll be comfortable traveling.


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## maxaroni

CTDisneyfan816 said:


> Thanks, up to 50 pounds off now. I am almost to my dry weight as the amount of fluids each time is less. Two weeks isn't that bad. For a fistula which I have, it takes 4-6 weeks before it can be used. And because I had to have that blockage removed a few weeks ago, they don't think it will be fully mature until mid-winter. At that point, once they put the button holes in (meaning same entry each time), I'll be comfortable traveling.



Sounds as if you are well on your way to feeling well again, your new "normalcy" and being able to travel. Mid-winter seems as if it is a long time right now but it will be here before you know it.  You will continue to feel better and that is a huge plus.    I thought you were able to use your fistula now, am I confused?  If not, do you have neck access?

My mom was a "fit in" with the surgeon yesterday and wasn't called for surgery until nearly 5:00 pm.  We stayed with her all day until she was settled back in her room.  It was about 9:00 when we were leaving and went to have a bite to eat.  She did well through surgery.  However, her kidney numbers skyrocketed...my dad found out yesterday morning, will know more today. However, what I know is her creatinine went way up, as did her potassium....dad didn't recall the numbers.  Her creatinine on Sunday was at 5.  The number he remembered was her BUN, which was "way over" 100.  So, the PD catheter takes 2 weeks to heal and can't be used.  The docs are talking neck access in the meantime.

Continued prayers for your health and getting your life back....


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## CTDisneyfan816

maxaroni said:


> Sounds as if you are well on your way to feeling well again, your new "normalcy" and being able to travel. Mid-winter seems as if it is a long time right now but it will be here before you know it.  You will continue to feel better and that is a huge plus.    I thought you were able to use your fistula now, am I confused?  If not, do you have neck access?
> 
> My mom was a "fit in" with the surgeon yesterday and wasn't called for surgery until nearly 5:00 pm.  We stayed with her all day until she was settled back in her room.  It was about 9:00 when we were leaving and went to have a bite to eat.  She did well through surgery.  However, her kidney numbers skyrocketed...my dad found out yesterday morning, will know more today. However, what I know is her creatinine went way up, as did her potassium....dad didn't recall the numbers.  Her creatinine on Sunday was at 5.  The number he remembered was her BUN, which was "way over" 100.  So, the PD catheter takes 2 weeks to heal and can't be used.  The docs are talking neck access in the meantime.
> 
> Continued prayers for your health and getting your life back....



I am able to use the fistula, but because it isn't fully matured, they have to be very careful where they insert it. Once it is fully matured (mid winter), they can do the button holes (same entry point).

That sounds like where my numbers were. My creatinine increased from July to August from 4.5 to 5.9. It decreased in September to 5.2 but my BUN was at 111. That last number is what prompted my doctor to start me on dialysis. Potassium was what started me with kidney disease but it is now under control. My doctor had me get my fistula installed back in February, but because of the recent surgery, it prolonged the fully mature point.


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## maxaroni

CTDisneyfan816 said:


> I am able to use the fistula, but because it isn't fully matured, they have to be very careful where they insert it. Once it is fully matured (mid winter), they can do the button holes (same entry point).
> 
> That sounds like where my numbers were. My creatinine increased from July to August from 4.5 to 5.9. It decreased in September to 5.2 but my BUN was at 111. That last number is what prompted my doctor to start me on dialysis. Potassium was what started me with kidney disease but it is now under control. My doctor had me get my fistula installed back in February, but because of the recent surgery, it prolonged the fully mature point.



Gotcha. Now I understand.  This is so overwhelming that we try and take one step at a time.  Since mom is having PD, the catheter only takes 2 weeks to heal and be usable. She was scheduled for her renal appt this past Monday and most probably would have been told its time for the catheter. However with her landing in the hospital for congestive heart failure it was decided to do that during this hospital stay.  However things went downhill this week. She will have the catheter placed in her neck tomorrow.  Hopefully no complications. Friday they want to do a cardiac catheterization to see if the CHF is all kidney or if there are any blockages. She does have a totally blocked artery to her brain so anything is possible.  A combination of kidney and blockages won't be good. Doubtful she'd be able to have major surgery but they want to know how to treat the heart.


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## CTDisneyfan816

maxaroni said:


> Gotcha. Now I understand.  This is so overwhelming that we try and take one step at a time.  Since mom is having PD, the catheter only takes 2 weeks to heal and be usable. She was scheduled for her renal appt this past Monday and most probably would have been told its time for the catheter. However with her landing in the hospital for congestive heart failure it was decided to do that during this hospital stay.  However things went downhill this week. She will have the catheter placed in her neck tomorrow.  Hopefully no complications. Friday they want to do a cardiac catheterization to see if the CHF is all kidney or if there are any blockages. She does have a totally blocked artery to her brain so anything is possible.  A combination of kidney and blockages won't be good. Doubtful she'd be able to have major surgery but they want to know how to treat the heart.



I hope for the best possible results. Thankfully, (so far) my heart is sound. I got my first blood test results back last night. My BUN ballooned to 129 on Oct. 1 but is now at 49. My creatinine which rose to 5.9 in August and 5.5 in September is now 4.25.  And up to 53 pounds off.


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## maxaroni

CTDisneyfan816 said:


> I hope for the best possible results. Thankfully, (so far) my heart is sound. I got my first blood test results back last night. My BUN ballooned to 129 on Oct. 1 but is now at 49. My creatinine which rose to 5.9 in August and 5.5 in September is now 4.25.  And up to 53 pounds off.



Thank you.  You had a bump in the road with the blood work but looks as if you have it under control and doing well.  

Mom had the neck catheter (PICC line??) put in yesterday. She went from the recovery room to a 2 hr session of dialysis.  Her arm yesterday had ballooned from fluid and today that has come down a bit.  Today she had a 4 hour session of dialysis.  She is now anemic and given shots last night.  She is none too happy at the moment.  Her cardiac cath was postponed until Monday as she had a bad day yesterday.very lethargic.  I don't know what road we will be facing, as I've said she has other health issues besides ESRD but praying for better days ahead.


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## CTDisneyfan816

maxaroni said:


> Thank you.  You had a bump in the road with the blood work but looks as if you have it under control and doing well.
> 
> Mom had the neck catheter (PICC line??) put in yesterday. She went from the recovery room to a 2 hr session of dialysis.  Her arm yesterday had ballooned from fluid and today that has come down a bit.  Today she had a 4 hour session of dialysis.  She is now anemic and given shots last night.  She is none too happy at the moment.  Her cardiac cath was postponed until Monday as she had a bad day yesterday.very lethargic.  I don't know what road we will be facing, as I've said she has other health issues besides ESRD but praying for better days ahead.



I am anemic too with my hemoglobin ranging from 7-9. I get shots of epogen and iron at each dialysis. Helps me a lot. Tell her after she's on it for awhile the fatigue should lessen. If she can go on dialysis successfully for a few weeks I think that in itself will make her feel better.


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## goofeygirl

CTDisneyfan816 said:


> Just last week I booked my December trip to Disney. Today I found out my Stage 5 kidney disease is worsening to the point where I will likely need dialysis in 3 weeks. This will mean being at the hospital for 3-4 hours a day, 3 days a week. He said that I could have dialysis down there but that will really cut into my time.



Praying.


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## maxaroni

CTDisneyfan816 said:


> I am anemic too with my hemoglobin ranging from 7-9. I get shots of epogen and iron at each dialysis. Helps me a lot. Tell her after she's on it for awhile the fatigue should lessen. If she can go on dialysis successfully for a few weeks I think that in itself will make her feel better.



Haven't heard much more about the anemia as other things are going on.  She had dialysis Thursday, Friday and Saturday and was pretty beat up.  Could not stay awake and out of it.  When we went Sunday, she turned the corner so assuming it's the dialysis and perhaps coupled with everything else.  Mom had the cardiac cath and blockages in 4 arteries.1 - 100%, 1 - 93%, the other 2 in the 80% range.  Bypass surgery is out of the question.  She had a stent put in the 2 arteries in the 80% range.  Opened up the 100% with angioplasty but a little tear so no stent was possible.  The 93% was not able to have a stent either.  This transpired today and we were with her until she went to dialysis to have a treatment to get the dye out.  She will have another session tomorrow.

Hopefully, in the next couple of days she will be out of the hospital.  However, can't come home yet as dad can't care for her the way she is.  She will go to rehab to build her strength and dialysis.  She is 1 week into recovery of her PD catheter, so once home they will soon beginning training for that.

Hope all is going well for you.


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## CTDisneyfan816

maxaroni said:


> Haven't heard much more about the anemia as other things are going on.  She had dialysis Thursday, Friday and Saturday and was pretty beat up.  Could not stay awake and out of it.  When we went Sunday, she turned the corner so assuming it's the dialysis and perhaps coupled with everything else.  Mom had the cardiac cath and blockages in 4 arteries.1 - 100%, 1 - 93%, the other 2 in the 80% range.  Bypass surgery is out of the question.  She had a stent put in the 2 arteries in the 80% range.  Opened up the 100% with angioplasty but a little tear so no stent was possible.  The 93% was not able to have a stent either.  This transpired today and we were with her until she went to dialysis to have a treatment to get the dye out.  She will have another session tomorrow.
> 
> Hopefully, in the next couple of days she will be out of the hospital.  However, can't come home yet as dad can't care for her the way she is.  She will go to rehab to build her strength and dialysis.  She is 1 week into recovery of her PD catheter, so once home they will soon beginning training for that.
> 
> Hope all is going well for you.



I am betting they are injecting epogen with iron while she is going through the dialysis as they are doing me. My fatigue is at a minimum now. Once she does the dialysis for awhile, I bet she will start to feel better. I have incredulously. I had my first monthly progress meeting yesterday. All numbers are good (for where I should be). Creatinine is still a bit high which it will be. One issue is since the fistula is not fully mature, the clearances are not optimal so they increased (for now until it does mature) my time on dialysis from 3 1/2 hours to 4 hours.


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## maxaroni

CTDisneyfan816 said:


> I am betting they are injecting epogen with iron while she is going through the dialysis as they are doing me. My fatigue is at a minimum now. Once she does the dialysis for awhile, I bet she will start to feel better. I have incredulously. I had my first monthly progress meeting yesterday. All numbers are good (for where I should be). Creatinine is still a bit high which it will be. One issue is since the fistula is not fully mature, the clearances are not optimal so they increased (for now until it does mature) my time on dialysis from 3 1/2 hours to 4 hours.



They probably are giving her the epogen and iron. When other issues of the magnitude of what she has been through, the anemia took a backseat. Dad can't go into the dialysis area at the hospital so he goes home and then back when she is finished. Looks like she is going to rehab tomorrow. 

You seem to be doing so well!  There will always be bumps in the road but as long as the good days outweigh the bad.  You were nervous about starting dialysis and now you are doing it and doing it well.


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## CTDisneyfan816

maxaroni said:


> They probably are giving her the epogen and iron. When other issues of the magnitude of what she has been through, the anemia took a backseat. Dad can't go into the dialysis area at the hospital so he goes home and then back when she is finished. Looks like she is going to rehab tomorrow.
> 
> You seem to be doing so well!  There will always be bumps in the road but as long as the good days outweigh the bad.  You were nervous about starting dialysis and now you are doing it and doing it well.



Yes. Part of me wishes I didn't cancel the trip but it is better though to keep the care to the same people until things are set. 

Where I go, visitors are allowed in dialysis, but just not when we are getting set up or taken off at the end. The worst part about the extra half hour is my tail bone lets me know about it!


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## maxaroni

CTDisneyfan816 said:


> Yes. Part of me wishes I didn't cancel the trip but it is better though to keep the care to the same people until things are set.
> 
> Where I go, visitors are allowed in dialysis, but just not when we are getting set up or taken off at the end. The worst part about the extra half hour is my tail bone lets me know about it!



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.


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## CTDisneyfan816

maxaroni said:


> 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.


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## maxaroni

CTDisneyfan816 said:


> 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!!


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## CTDisneyfan816

maxaroni said:


> 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.


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## maxaroni

CTDisneyfan816 said:


> 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.


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## CTDisneyfan816

maxaroni said:


> 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).


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## 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.


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## maxaroni

CTDisneyfan816 said:


> 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.


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## CTDisneyfan816

maxaroni said:


> 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.


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## 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.


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## Kerrio929

CTDisneyfan816 said:


> 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


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## CTDisneyfan816

Kerrio929 said:


> 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.


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## 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


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## CTDisneyfan816

maxaroni said:


> 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.


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## maxaroni

CTDisneyfan816 said:


> 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.


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## CTDisneyfan816

maxaroni said:


> 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.


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## 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!


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## Storeyann

CTDisneyfan816 said:


> 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!


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## 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!


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