MAY IS LUPUS AWARENESS MONTH - A STORY FOR YOU!
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MAY IS LUPUS AWARENESS MONTH - A STORY FOR YOU!
A young lady on Facebook is writing a paper for a class she is taking. She asked the following questions and I responded. I am writing to share my story with you in the hope that we highlight KIDNEY DISEASE.
May is LUPUS AWARENESS MONTH
The following are the responses given to the young lady for more information.
1. How old are you and where are you from? 61, Athens AL
2. How long have you been on dialysis and what made your decision to take this treatment? 5 years, 3 months. Kidneys failed due to lupus kidney disease. Started failing in 1989.
3. Describe the process you have to go through when going in for dialysis? I went to a training class. I started in clinic. Then started home hemo training and now dialyze at home.
4. Describe the level of care you are receiving when getting treatment? Is there anything you would change about the care you're receiving? I did not like in center. Go strictly by weight. At home I manage what I take off, slowly over a couple of days.
5. Do you have a good support system? (e.g Family, Medical Team etc.) Please describe your support system and how they help you. I have a great support system. My husband is an RN and dialyze me. My mom who lived with me at the time was an LPN. She's gone home to the Lord. One sister ( lives in Beaumont TX) and my daughter (lives next door) are CNAs. My son took off work to do training with me because my husband was in a wreck at the time of my training. My other sister (lives in Iowa LA) was a healthcare worker. My family comes when I need them. My brother and his wife comes from Dallas to see about me. My nieces and nephews also visit me from LA and TX. There isn't anything I would change. The level of care I receive is great. Love my doctors and nurses.
6. How would you describe your first experience with dialysis? It was an emergency. I had a fistula about a year before dialyzing. The doc went in to do a fistulagra and nicked my vessel coming out. I was put in the hospital and started dialysis the next. The room was cold and we had to wait a long time for Dialysis.
7. How did you feel when going to your first dialysis treatment? Was it a good or bad experience? I was exhausted after each treatment. And was still workinb. Dec 2012. I retired in Feb 2014. Hard to walk from my car to desk. The good part was talking to the others in clinic. But was COLD.
8. What type of dialysis treatment are you on? HomeHemodialysis. If you had a choice between treatments why did you choose that treatment? I choose this mode because of flexibility. I want to do perotenile But had a hysterectomy and other surgery on the abdomen. The precluded mr from do that mode of dialysis.
9. What are some side effects or symptoms you have had or having after treatment? How do you deal with these symptoms? The biggest problems are weakness, brain fog, and inability to get good night sleep.
10. What advice would you give to others that may need dialysis? I would suggest they take charge and learn all they can about dialysis, go through training, get fistula ahead of time so it's ready when they start dialysis's .
11. Do you have to follow any particular diet due to being on dialysis? If so what kind and is it hard to follow? I really don't follow a diet. I thought I would have a problem with limiting water. I drank a lot of water before Dialysis. Not I have to force myself to drink water. inhad a problem controlling phosphorus but on top of it now. Biggest problem is protein. I really don't eat but 2 meals a day. Have to get more protein in me. Message me for with additional questions or email info@janiceisbell.com
2. How long have you been on dialysis and what made your decision to take this treatment? 5 years, 3 months. Kidneys failed due to lupus kidney disease. Started failing in 1989.
3. Describe the process you have to go through when going in for dialysis? I went to a training class. I started in clinic. Then started home hemo training and now dialyze at home.
4. Describe the level of care you are receiving when getting treatment? Is there anything you would change about the care you're receiving? I did not like in center. Go strictly by weight. At home I manage what I take off, slowly over a couple of days.
5. Do you have a good support system? (e.g Family, Medical Team etc.) Please describe your support system and how they help you. I have a great support system. My husband is an RN and dialyze me. My mom who lived with me at the time was an LPN. She's gone home to the Lord. One sister ( lives in Beaumont TX) and my daughter (lives next door) are CNAs. My son took off work to do training with me because my husband was in a wreck at the time of my training. My other sister (lives in Iowa LA) was a healthcare worker. My family comes when I need them. My brother and his wife comes from Dallas to see about me. My nieces and nephews also visit me from LA and TX. There isn't anything I would change. The level of care I receive is great. Love my doctors and nurses.
6. How would you describe your first experience with dialysis? It was an emergency. I had a fistula about a year before dialyzing. The doc went in to do a fistulagra and nicked my vessel coming out. I was put in the hospital and started dialysis the next. The room was cold and we had to wait a long time for Dialysis.
7. How did you feel when going to your first dialysis treatment? Was it a good or bad experience? I was exhausted after each treatment. And was still workinb. Dec 2012. I retired in Feb 2014. Hard to walk from my car to desk. The good part was talking to the others in clinic. But was COLD.
8. What type of dialysis treatment are you on? HomeHemodialysis. If you had a choice between treatments why did you choose that treatment? I choose this mode because of flexibility. I want to do perotenile But had a hysterectomy and other surgery on the abdomen. The precluded mr from do that mode of dialysis.
9. What are some side effects or symptoms you have had or having after treatment? How do you deal with these symptoms? The biggest problems are weakness, brain fog, and inability to get good night sleep.
10. What advice would you give to others that may need dialysis? I would suggest they take charge and learn all they can about dialysis, go through training, get fistula ahead of time so it's ready when they start dialysis's .
11. Do you have to follow any particular diet due to being on dialysis? If so what kind and is it hard to follow? I really don't follow a diet. I thought I would have a problem with limiting water. I drank a lot of water before Dialysis. Not I have to force myself to drink water. inhad a problem controlling phosphorus but on top of it now. Biggest problem is protein. I really don't eat but 2 meals a day. Have to get more protein in me. Message me for with additional questions or email info@janiceisbell.com
Also.
I started being involved with LUPUS FOUNDATION - Missouri Chapter in 1976, eventually being president. My Lupus Kidney Disease is the reason I am on dialysis. All the literature at that time said I would not be able to have a child. I married my college sweetheart in 1981 and we had our only son. Through his and his lovely wife we have 7 beautiful grandkids. My family considers me a miracle. At the time of my diagnosis (Feb 1976) no one had heard of SYSTEMIC LUPUS ERYTHEMATOSUS. Because I did not have insurance I received my medical treatment by being Research a patient for the early drugs used for Lupus (1976 - 1980). My school, WASHINGTON UNIVERSITY- ST. LOUISE. gave me a $300 scholarship each year for medications. I would share my experience monthly with other Lupus patients, but have not been involved since moving hear in 1997.
Now I would like to share my experiences living with Lupus and being a dialysis patients so others may know they are not alone.
I would go to the local nursing schools in St. Louis, annually, to share my stories as what we expect from nurses as a patient. It made them more compassionate and educated nurses.
I now live in Limestone County and would like to start a "Lupus Support Group & a Dialysis Support Group" in this county.
The clubs currently in Alabama can be found at this site: https://www.lupus.org/midsouth/pages/alabama-service-area
The clubs in Alabama for support groups for support groups in Alabama can be found at this website: https://www.liverfoundation.org/alf-southeast/local-resources/#support-groups-in-alabama
I have a go fund me page. First to raise money and next to inform families of the costs to support their love ones of the journey ahead. Most people are noncompliant because of the cost associated with a transplant. My cousin, who is a diabetic, had one leg amputated, was on Dialysis and is now in hospice in Beaumont Tx because of his noncompliance. I have to do something to make our people understand and become aware.
Fundraising for Transplant Surgery Helps Cut Costs - Compassionate Crowdfunding Blog
https://www.youcaring.com/blog/2016/fundraising-for-transplant-surgery
Some additional articles for your review
White/Black Racial Differences in Risk of End-Stage Renal Disease and Death https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2749005/
African Americans and Kidney Disease | The National Kidney Foundation https://www.kidney.org/news/newsroom/factsheets/African-Americans-and-CKD
African American women develop lupus at a younger age with more complications | Lupus Foundation of America https://www.lupus.org/georgia/news/entry/african-american-women-develop-lupus-at-a-younger-age
Below is the information posted on my go fund me page for your review.
https://www.gofundme.com/Share4Janice
My JOURNEY TO NEEDING A KIDNEY TRANSPLANT!
In 1975 I was diagnosed with Systemic Lupus Erythematosus.
I have had many ups and downs with this disease.
Lupus affects the connective tissue in the body and sometimes organs.
In my case, I was diagnosed with Lupus Kidney Disease in 1989.
In 2001 I had a full hysterectomy an d appendectomy.
In 2007 I had right foot bunion and knee surgery.
In 2009 I had a colon resection for colon cancer.
In 2010 I had a fistula installed in my left upper arm in preparation for dialysis.
In 2011 I had a hernia repaired in my lower left abdomen.
In 2012 I started dialysis.
In 2013 I had my aorta heart valve replaced. I also had my gall bladder removed.
I share all of this to give information of what I have gone through as a Lupus patient.
For more information on LUPUS: http://www.lupus.org
I retired in 2014 because of health issues. I walk with a smile on my face because of the love of my Lord! Living this long is remarkable. Thank you Jesus.
I'm on the Transplant List at University of Alabama - Birmingham & Vanderbilt University - Nashville, TN.
Through all this I have been able to pay for my medical expenses. Now that I am retired, the costs are rising and becoming prohibitive. I am currently taking 14 medications. The more the kidneys fail, you need another pill for something else. Like other Lupus and Dialysis patients I have tried natural remedies, and different diets. I am allergic to 15 medications and chocolate. Go figure.
Also, now that I have been dialyzing for 5 years it is also time for me to raise money for life during and after transplant.
*Medical costs include:
Insurance deductibles
Insurance co-pays
Pre-transplant evaluation and testing
Fees for surgeons, physicians, radiologist, anesthesiologist and lab tests
Fees for the recovery of the organ from the donor
Surgery
Follow-up care and testing
Additional hospital stays for complications
Anti-rejection and other drugs, which can easily exceed $2,500 per month
Rehabilitation
*Non-medical costs could include:
Food, lodging and long distance phone calls for you and your family
Transportation, to and from your transplant center, before and after your transplant
Plane travel to get to your transplant hospital quickly
Lost wages if your employer does not pay for the time you or a family member spends away from work
Lodging close to the center before and after surgery.
For more information on projected costs: http://health.costhelper.com/kidney-transplant.html
Cost of a kidney transplant. https://www.youcaring.com/blog/2015/cost-of-a-kidney-transplant
I did not start this go fund me account until I was on list 5 years. I'm now receiving exams in case a kidney becomes available and I want to be ready for life during and after the transplant.
These funds would tremendously help with my medical expenses.
I know some may be unable to donate. I am asking for your help with scheduling and setting up fundraisers. You may also purchased CVS gift cards and mail to 17811 SEVEN MILE POST RD, ATHENS AL 35611. Any help you can give would be most appreciated.
*****If you would like to be tested as a live donor, if not for me, maybe for someone else.
My blood type is O+.
Vanderbilt University, Nashville TN.
https://www.vanderbilthealth.com/transplant/50306
University of Alabama - Birmingham.
https://www.uabmedicine.org/patient-care/treatments/living-donor-navigator-program
I will post updates on a regular basis to inform each of you of my journey.
I try to always keep a smile on my face to share the light of Christ with all in my life. I pray daily my walk matches his my actions, thoughts, and words!
The following is my personal mission statement to keep my mind off my chronic illness and it does keep me focused to move forward at all times. I have tutored so many people in my efforts to give back and share.
My care giver since he has married to me is my husband, Irvin Lee Isbell, Sr. He met me in college and learned as much as he could about Lupus. He later became a nurse. Currently he is my nurse that helps me dialyze Monday through Friday nights. I love him to death!
In 1975 I was diagnosed with Systemic Lupus Erythematosus.
I have had many ups and downs with this disease.
Lupus affects the connective tissue in the body and sometimes organs.
In my case, I was diagnosed with Lupus Kidney Disease in 1989.
In 2001 I had a full hysterectomy an d appendectomy.
In 2007 I had right foot bunion and knee surgery.
In 2009 I had a colon resection for colon cancer.
In 2010 I had a fistula installed in my left upper arm in preparation for dialysis.
In 2011 I had a hernia repaired in my lower left abdomen.
In 2012 I started dialysis.
In 2013 I had my aorta heart valve replaced. I also had my gall bladder removed.
I share all of this to give information of what I have gone through as a Lupus patient.
For more information on LUPUS: http://www.lupus.org
I retired in 2014 because of health issues. I walk with a smile on my face because of the love of my Lord! Living this long is remarkable. Thank you Jesus.
I'm on the Transplant List at University of Alabama - Birmingham & Vanderbilt University - Nashville, TN.
Through all this I have been able to pay for my medical expenses. Now that I am retired, the costs are rising and becoming prohibitive. I am currently taking 14 medications. The more the kidneys fail, you need another pill for something else. Like other Lupus and Dialysis patients I have tried natural remedies, and different diets. I am allergic to 15 medications and chocolate. Go figure.
Also, now that I have been dialyzing for 5 years it is also time for me to raise money for life during and after transplant.
*Medical costs include:
Insurance deductibles
Insurance co-pays
Pre-transplant evaluation and testing
Fees for surgeons, physicians, radiologist, anesthesiologist and lab tests
Fees for the recovery of the organ from the donor
Surgery
Follow-up care and testing
Additional hospital stays for complications
Anti-rejection and other drugs, which can easily exceed $2,500 per month
Rehabilitation
*Non-medical costs could include:
Food, lodging and long distance phone calls for you and your family
Transportation, to and from your transplant center, before and after your transplant
Plane travel to get to your transplant hospital quickly
Lost wages if your employer does not pay for the time you or a family member spends away from work
Lodging close to the center before and after surgery.
For more information on projected costs: http://health.costhelper.com/kidney-transplant.html
Cost of a kidney transplant. https://www.youcaring.com/blog/2015/cost-of-a-kidney-transplant
I did not start this go fund me account until I was on list 5 years. I'm now receiving exams in case a kidney becomes available and I want to be ready for life during and after the transplant.
These funds would tremendously help with my medical expenses.
I know some may be unable to donate. I am asking for your help with scheduling and setting up fundraisers. You may also purchased CVS gift cards and mail to 17811 SEVEN MILE POST RD, ATHENS AL 35611. Any help you can give would be most appreciated.
*****If you would like to be tested as a live donor, if not for me, maybe for someone else.
My blood type is O+.
Vanderbilt University, Nashville TN.
https://www.vanderbilthealth.com/transplant/50306
University of Alabama - Birmingham.
https://www.uabmedicine.org/patient-care/treatments/living-donor-navigator-program
I will post updates on a regular basis to inform each of you of my journey.
I try to always keep a smile on my face to share the light of Christ with all in my life. I pray daily my walk matches his my actions, thoughts, and words!
The following is my personal mission statement to keep my mind off my chronic illness and it does keep me focused to move forward at all times. I have tutored so many people in my efforts to give back and share.
My care giver since he has married to me is my husband, Irvin Lee Isbell, Sr. He met me in college and learned as much as he could about Lupus. He later became a nurse. Currently he is my nurse that helps me dialyze Monday through Friday nights. I love him to death!
Janice Mitchell Isbell
His Servant!
The Tutors' Tutor
Facebook: http://www.facebook.com/JANICEISBELL
Cost of a kidney transplant. https://www.youcaring.com/blog/2015/cost-of-a-kidney-transplant
His Servant!
The Tutors' Tutor
Facebook: http://www.facebook.com/JANICEISBELL
Cost of a kidney transplant. https://www.youcaring.com/blog/2015/cost-of-a-kidney-transplant
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