Well, it was a bit unsettling. My first battle had to do with the room itself. It reminded me of the chemotherapy room where my wife received treatment before passing away due to breast cancer. Once I made peace with that, I did much better. What a lifestyle adjustment it's going to be! One hour drive time [round trip], 3.5 hours in the chair— it's quite a time commitment! However, if dialysis does what it is purported to do, if it restores my energy and strengthens my body, I'm good with it.
Well, it was a bit unsettling. My first battle had to do with the room itself. It reminded me of the chemotherapy room where my wife received treatment before passing away due to breast cancer. Once I made peace with that, I did much better. What a lifestyle adjustment it's going to be! One hour drive time [round trip], 3.5 hours in the chair— it's quite a time commitment! However, if dialysis does what it is purported to do, if it restores my energy and strengthens my body, I'm good with it.
I can imagine that reminder was unsettling. The time commitment of dialysis is a big one, but you’re quite right that it is for the better. How do you pass the time while driving and in the chair? How often to you have to go?
Well, it was a bit unsettling. My first battle had to do with the room itself. It reminded me of the chemotherapy room where my wife received treatment before passing away due to breast cancer. Once I made peace with that, I did much better. What a lifestyle adjustment it's going to be! One hour drive time [round trip], 3.5 hours in the chair— it's quite a time commitment! However, if dialysis does what it is purported to do, if it restores my energy and strengthens my body, I'm good with it.
@stevewyatt You've had a bit more than a full week on dialysis, now. How are you feeling? In time you will figure out what projects you can safely do while in hemodialysis. I am being evaluated for peritoneal dialysis in a few weeks. Do you have a co-driver to help you in case you are feeling a bit under the weather for the return trip? Someone I know used to reward herself after a hemodialysis appointment, by getting a cheeseburger and fries! Not saying to go to such an extreme, but maybe a small reward is on the books?
Ginger
@stevewyatt You've had a bit more than a full week on dialysis, now. How are you feeling? In time you will figure out what projects you can safely do while in hemodialysis. I am being evaluated for peritoneal dialysis in a few weeks. Do you have a co-driver to help you in case you are feeling a bit under the weather for the return trip? Someone I know used to reward herself after a hemodialysis appointment, by getting a cheeseburger and fries! Not saying to go to such an extreme, but maybe a small reward is on the books?
Ginger
I've found a rhythm during dialysis. I do about an hour and a half of driving, then I either rest or watch some podcasts. I had my first surgery for a fistula yesterday. This is gettin' real.
I can imagine that reminder was unsettling. The time commitment of dialysis is a big one, but you’re quite right that it is for the better. How do you pass the time while driving and in the chair? How often to you have to go?
I've found a rhythm during dialysis. I do about an hour and a half of driving, then I either rest or watch some podcasts. I had my first surgery for a fistula yesterday. This is gettin' real.
@stevewyatt You seem to have found your pattern quickly, good for you! I don't go many places without taking my "activity bag" as my husband calls it, with a few different options to keep me occupied. Seeing that they are just giving you the fistula now, does that mean they did a chest catheter to get you started on your dialysis?
Ginger
Steve I read your post and see you have been on dialysis since around October. I am scheduled for my fistula placement on February 10th. I am scared of course. Scared of the surgery, scared of starting dialysis. Trying to be upbeat for all family around me. I don’t know how it will feel. So many questions. How will I feel after each time ? Some people I read have gone on special practically vegan diets to improve their numbers. My nephrologist told me my diet would. It change anything. I don’t know if that is good information from him or not. Hope you are doing well with your dialysis. Thanks for letting me vent my fears and questions to you. I am not a spring chicken…74 years old. Wishing you the best. Peggy
Steve I read your post and see you have been on dialysis since around October. I am scheduled for my fistula placement on February 10th. I am scared of course. Scared of the surgery, scared of starting dialysis. Trying to be upbeat for all family around me. I don’t know how it will feel. So many questions. How will I feel after each time ? Some people I read have gone on special practically vegan diets to improve their numbers. My nephrologist told me my diet would. It change anything. I don’t know if that is good information from him or not. Hope you are doing well with your dialysis. Thanks for letting me vent my fears and questions to you. I am not a spring chicken…74 years old. Wishing you the best. Peggy
@pegalini Welcome to Mayo Clinic Connect! I just had my fistula placed on 12/27/21, at age 68 1/2. As a left-handed person, I was lucky to get it on my right wrist. One thing I didn't stop to think about, was how much I use my non-dominant hand! They have told me it is a 3-4 month healing process for this fistula. It was placed as a "backup" since my intention is to do peritoneal dialysis.
As my nephrologist told me, you watch yourself carefully, and enter dialysis in as good a health as possible. Follow what a renal dietician will tell you, keeping your protein levels up, as dialysis will deplete your system. Pay close attention to your fluid intake, and how you spend your energy.
Peggy, do you have a support system in place, family and friends? Is there a support group nearby to you? I suggest you take a look at rsnhope.org. They host a Zoom support group twice a month, and the website is a great source of information. Let me know if I can answer any questions for you? What is the cause of your kidney disease?
Ginger
@pegalini Welcome to Mayo Clinic Connect! I just had my fistula placed on 12/27/21, at age 68 1/2. As a left-handed person, I was lucky to get it on my right wrist. One thing I didn't stop to think about, was how much I use my non-dominant hand! They have told me it is a 3-4 month healing process for this fistula. It was placed as a "backup" since my intention is to do peritoneal dialysis.
As my nephrologist told me, you watch yourself carefully, and enter dialysis in as good a health as possible. Follow what a renal dietician will tell you, keeping your protein levels up, as dialysis will deplete your system. Pay close attention to your fluid intake, and how you spend your energy.
Peggy, do you have a support system in place, family and friends? Is there a support group nearby to you? I suggest you take a look at rsnhope.org. They host a Zoom support group twice a month, and the website is a great source of information. Let me know if I can answer any questions for you? What is the cause of your kidney disease?
Ginger
Hey Ginger….Thank you for responding to me. I had endometrial cancer back in 2000. I had a hysterectomy followed by extensive internal and external radiation. The radiation caused the damage to my kidneys, urinary tract and bladder. All was fine until about 2012 when I started having frequent uti’s and then in 2016 was when everything really went bad. One kidney is totally gone (damaged ) the other barely works, my bladder is non functioning. I have had a catheter since 2016 and a suprapubic catheter (one that comes out the side of my abdomen ) since 2018. My kidney disease has gotten worse to the point of now the fistula is needed to start dialysis.
I do have a good, supportive family but I really need a group that understands the diet and what I am going thru. I will check into the site you sent me and see about the Zoom group. I really do not know much about the diet. My nephrologist is not into the nutrition aspect of it. I don’t know…sometimes I wonder about him. Other than that I feel I do get good care.
Thank you Ginger for the information. Thank you so much for reaching out. Peggy
Connect
Connect
Like
Helpful
Hug
Hi Steve, how was your first day of dialysis? Any tips for others, like anything you wish you had known before getting started?
-
Like -
Helpful -
Hug
1 ReactionWell, it was a bit unsettling. My first battle had to do with the room itself. It reminded me of the chemotherapy room where my wife received treatment before passing away due to breast cancer. Once I made peace with that, I did much better. What a lifestyle adjustment it's going to be! One hour drive time [round trip], 3.5 hours in the chair— it's quite a time commitment! However, if dialysis does what it is purported to do, if it restores my energy and strengthens my body, I'm good with it.
-
Like -
Helpful -
Hug
3 ReactionsI can imagine that reminder was unsettling. The time commitment of dialysis is a big one, but you’re quite right that it is for the better. How do you pass the time while driving and in the chair? How often to you have to go?
@stevewyatt You've had a bit more than a full week on dialysis, now. How are you feeling? In time you will figure out what projects you can safely do while in hemodialysis. I am being evaluated for peritoneal dialysis in a few weeks. Do you have a co-driver to help you in case you are feeling a bit under the weather for the return trip? Someone I know used to reward herself after a hemodialysis appointment, by getting a cheeseburger and fries! Not saying to go to such an extreme, but maybe a small reward is on the books?
Ginger
-
Like -
Helpful -
Hug
1 ReactionI've found a rhythm during dialysis. I do about an hour and a half of driving, then I either rest or watch some podcasts. I had my first surgery for a fistula yesterday. This is gettin' real.
-
Like -
Helpful -
Hug
1 ReactionI go 3x per week, with a 40 minute drive each way. While in the chair, I try to use half the time for writing messages.
-
Like -
Helpful -
Hug
2 Reactions@stevewyatt You seem to have found your pattern quickly, good for you! I don't go many places without taking my "activity bag" as my husband calls it, with a few different options to keep me occupied. Seeing that they are just giving you the fistula now, does that mean they did a chest catheter to get you started on your dialysis?
Ginger
-
Like -
Helpful -
Hug
2 ReactionsSteve I read your post and see you have been on dialysis since around October. I am scheduled for my fistula placement on February 10th. I am scared of course. Scared of the surgery, scared of starting dialysis. Trying to be upbeat for all family around me. I don’t know how it will feel. So many questions. How will I feel after each time ? Some people I read have gone on special practically vegan diets to improve their numbers. My nephrologist told me my diet would. It change anything. I don’t know if that is good information from him or not. Hope you are doing well with your dialysis. Thanks for letting me vent my fears and questions to you. I am not a spring chicken…74 years old. Wishing you the best. Peggy
@pegalini Welcome to Mayo Clinic Connect! I just had my fistula placed on 12/27/21, at age 68 1/2. As a left-handed person, I was lucky to get it on my right wrist. One thing I didn't stop to think about, was how much I use my non-dominant hand! They have told me it is a 3-4 month healing process for this fistula. It was placed as a "backup" since my intention is to do peritoneal dialysis.
As my nephrologist told me, you watch yourself carefully, and enter dialysis in as good a health as possible. Follow what a renal dietician will tell you, keeping your protein levels up, as dialysis will deplete your system. Pay close attention to your fluid intake, and how you spend your energy.
Peggy, do you have a support system in place, family and friends? Is there a support group nearby to you? I suggest you take a look at rsnhope.org. They host a Zoom support group twice a month, and the website is a great source of information. Let me know if I can answer any questions for you? What is the cause of your kidney disease?
Ginger
-
Like -
Helpful -
Hug
2 ReactionsHey Ginger….Thank you for responding to me. I had endometrial cancer back in 2000. I had a hysterectomy followed by extensive internal and external radiation. The radiation caused the damage to my kidneys, urinary tract and bladder. All was fine until about 2012 when I started having frequent uti’s and then in 2016 was when everything really went bad. One kidney is totally gone (damaged ) the other barely works, my bladder is non functioning. I have had a catheter since 2016 and a suprapubic catheter (one that comes out the side of my abdomen ) since 2018. My kidney disease has gotten worse to the point of now the fistula is needed to start dialysis.
I do have a good, supportive family but I really need a group that understands the diet and what I am going thru. I will check into the site you sent me and see about the Zoom group. I really do not know much about the diet. My nephrologist is not into the nutrition aspect of it. I don’t know…sometimes I wonder about him. Other than that I feel I do get good care.
Thank you Ginger for the information. Thank you so much for reaching out. Peggy
Sent from my iPad
-
Like -
Helpful -
Hug
3 Reactions