need some prayers

[CTDisneyfan816]

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.

 

[Luv0fDisney]

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

 

[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!

 

[maxaroni]

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

 

[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.

 

[CTDisneyfan816]

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!

 

[maxaroni]

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.

 

[CTDisneyfan816]

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.

 

[maxaroni]

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....

 

[CTDisneyfan816]

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.

 

[maxaroni]

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.

 

[CTDisneyfan816]

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.

 

[maxaroni]

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.

 

[CTDisneyfan816]

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.

 

[goofeygirl]

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.

 

[maxaroni]

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.

 

[CTDisneyfan816]

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.

 

[maxaroni]

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.

 

[CTDisneyfan816]

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!

 

[maxaroni]

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.