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.

 

[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!!!!

 

[wiigirl]

 

[Auntie L.]

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

 

[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.

 

[mommasita]

Thoughts and prayers..

 

[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!

 

[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.

 

[old lady]

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

 

[CTDisneyfan816]

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.

 

[maxaroni]

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

 

[CTDisneyfan816]

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.

 

[CTDisneyfan816]

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

 

[maxaroni]

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.

 

[CTDisneyfan816]

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.

 

[maxaroni]

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.

 

[CTDisneyfan816]

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.

 

[maxaroni]

How are you doing? Thinking of you

 

[CTDisneyfan816]

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.

 

[maxaroni]

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.