Tuesdays With Donna

Tuesdays With Donna

Good morning. Got a call from the Transplant Coordinator yesterday. She said all tests look good except my liver enzymes were too high. Had an appointment with my Primary Doctor yesterday so he ordered the bloodwork. Now to wait for results. Also the 6 minute walk is scheduled for June 19th. Time to walk again. Pool cover is off and my son is getting it ready. Maybe I can walk in it each day. Was out to the mall with my daughter so walked there.

I am still looking for a live donor. If you or someone you know would like to donate one, I would be very appreciative. Think about it. Talk about it. Learn about it. Ask questions. Ask how you can help spread this information. Help me find a donor.
To learn more about my situation, contact me on Facebook (Tuesdays With Donna) or visit the website, WWW.BarnesJewish.org/kidney-transplant or call the Transplant Coordinator at 314-362-5365 for more information. Give them my name and birthday when you call to donate to me. I thank you in advance. Please share!

Kidney Transplant | Barnes-Jewish Hospital Our kidney transplant specialists are experts in their field, performing more than 200 transplants each year – more than any other center in Missouri.

Tuesdays With Donna

Good evening!
Well, I am sorry to say, I did not pass my 6 minute walk yesterday. I got into about 1/3 of it and suddenly I felt so tired and exhausted that I really could not finish it. I sat and rested but what walking I did was entirely too slow. First I had a chest x-ray, chemical stress test which gave me an instant headache. It was done at the Nuclear Medicine Department. I was already worn out. Then bloodwork, ekg, and dental panorex. Then I saw the Nephrologist for the transplant. Lastly, I had my walk. Not good.
I know I will have to redo that test. I will ask for a morning appointment so I can be fresh and have more energy. I will also be able to eat breakfast and have some coffee before the test. I wasn't to eat or drink anything with caffeine except sips of water before the stress test.
When I got home I ate a small supper and went to bed.

Today, my daughter and soon to be daughter-in-law picked me up and we went to lunch. Went shopping and drove around looking at cars to possibly buy. Busy but nice day. My new brace allowed me to walk without pain for the fist time since last summer. It doesn't feel cumbersome at all. Tomorrow I go to the Infusion Center at the hospital close to me for my shot if my hemoglobin is too low.

I know you might be getting tired of reading this part but I am going to type it again. Yes, I am still looking for a donor. A live donor can make another person with CKD live about 10 years long than a kidney from a deceased person. The doctor said yesterday that I most likely will have to do all these tests over again next year according to the way my blood type is going. Will you please donate a kidney? Help me find a donor.

To learn more about my situation, contact me on Facebook (Tuesdays With Donna) or visit the website, WWW.BarnesJewish.org/kidney-transplant or call the Transplant Coordinator at 314-362-5365 for more information. Give them my name and birthday when you call to donate to me. I thank you in advance.

Kidney Transplant | Barnes-Jewish Hospital Our kidney transplant specialists are experts in their field, performing more than 200 transplants each year – more than any other center in Missouri.

With Donna

I know I missed posting on Tuesday but I was getting my new knee brace and glasses. I go tomorrow which is Monday, May 1st to Barnes Hospital for my yearly evaluation to stay on the waiting list for a kidney transplant.

My first appointment is at 9:00 am which is the Stress Test. At 1:30 pm I have to have a physical exam with Nephrology. 3:00 pm I have my 6 minute walk. Need to get 1,000 or more steps during the 6 mins. My last appointment is at 4:00 pm for bloodwork, chest x-ray, and an EKG. When I get done there, I go for dental panorex. Whew, another long day.

For my stress test, I can't have anything with caffeine after 9:00 tonight. Water only. I can eat after that so my son and I will have snacks and water with us. For my 6 minute walk I can use the walker with my brace on. My niece calls me bionic woman. Lol. They strap leads around my head which are hooked up to a meter. The person walks by me carrying the meter, marking if I stop to rest (how long) and counting the steps.
I will let you know how the walk goes on Tuesday.

I still am looking for a donor. If you or someone you know would like to donate one, I would be very appreciative. Think about it. Talk about it. Learn about it. Ask questions. Ask how you can help spread this information. Help me find a donor.
To learn more about my situation, contact me on Facebook (Tuesdays With Donna) or visit the website, WWW.BarnesJewish.org/kidney-transplant or call the Transplant Coordinator at 314-362-5365 for more information. Give them my name and birthday when you call to donate to me. I thank you in advance. Please share!

Kidney Transplant | Barnes-Jewish Hospital Our kidney transplant specialists are experts in their field, performing more than 200 transplants each year – more than any other center in Missouri.

Things They Never Tell You About Chronic Kidney Disease

By Diane Talbert
6 days ago
2 min read
Last updated: April 2023

Before my mother left us, I was her caregiver for a few years. She had developed several illnesses over her 88 years on this earth. I used to take care of her appearance when she was no longer able to do so. She liked looking “sharp” and dress up every day.
Side effects from CKD
I would do her toes and nails. On one of her doctor appointments the healthcare professional told me it was dangerous for me to do that because she had diabetes along with CKD. So, he suggested I started taking her to a podiatrist to get her feet done.
He told me that her toenails were looked a different color and the shape had change. I asked if the changes were happening because she was getting sick. He said this was normal for someone with chronic kidney disease. She had this illness for years but none of us had ever heard of this before. I was told that the kidneys were not functioning properly.
She also had an outside caregiver that would rub her feet at home daily, and she always said how good they felt afterwards. His skin was always very dry and felt rough. We had to put some sort of oil on her at least twice a day.
She had a beautiful head of long natural hair. It started breaking off and when I would comb it. I could see the bald spots from where it was falling out. So, I started buying wigs for her. I was shocked at these things that were happening to her. She wasn’t on dialysis, and I wasn’t told about these side effects. I was told there was a waste that builds up if you have chronic kidney disease. This is why the fingernails, toenails and hair were affected.
One of the things I noticed was that she didn't like food anymore. She was provided with different vitamins and special drinks. I was told that this was normal. She also had several illnesses and was on many medications. We had to work very closely with her doctor to keep things straight. At one point, she was taking almost 20 pills a day.
Advice for others
My advice would be if you are a patient with chronic kidney disease or caregiver, speak with your health care team when you notice any changes in the body. Your doctor might need to order blood work too or change medications.
My doctor said my mother's long luxurious hair would grow back. At this point in her life, she no longer was concerned about long hair she said she didn't want to want her hair back. She kept her hair cut very, very short and wore wigs.
Of course, I thought this was a little extreme, but I wanted her to be happy. But if you want to keep your hair, do what's best for you. I would suggest not using perms or colors. Changing your diet might help also.
I realized that chronic kidney disease was a part of her life, but she never let that define who she was. When she would talk to the family, she said that having long hair, painted nails, pretty feet and clothes didn't define who you are. You must find things that add value to your life. We all must know what our self-worth is. Hers were family.
Read Chronic-Kidney-Disease.net for more information

Chronic-Kidney-Disease.net Learn about Chronic Kidney Disease (CKD) including symptoms, diagnosis, treatment, patient stories, & more from a rare disease community perspective.

I have been with my daughter for a second week. We have been very busy. I have had several lunches and dinners with friends. Since being here, I am so tired. Dr. tells me that is the one complaint most people have about CKD. I still try to stay active which I am told is important. My knees are feeling good since the gel injections. I think I actually will pass my 6 minute walk for my re-evaluation to keep me on the waiting list. I am scheduled for May 1st. It will be an all day process. In the meantime, I have dental work to have done, shoe fittings, bloodwork and dr appointments. Please take time to read my other posts. I am still looking for a donor. Think about it. Talk about it. Learn about it. Ask questions. Ask how you can help spread this information. Help me find a donor.
To learn more about my situation, contact me on Facebook (Donna Fluharty Dale ) or visit the website, WWW.BarnesJewish.org/kidney-transplant or call the Transplant Coordinator at 314-362-5365 for more information. Give them my name and birthday when you call to donate to me. I thank you in advance. Please share!

Kidney Transplant | Barnes-Jewish Hospital Our kidney transplant specialists are experts in their field, performing more than 200 transplants each year – more than any other center in Missouri.

This is the last Tuesday in March which is Kidney Disease Awareness month.
I apologize in advance if I upset anyone about what I am going to say.
Death: Most people who have CKD don’t usually die from it. Yes, it is a disease but it damages other organs of your body. It can cause problems with blood pressure, weight, appearance, swelling in hands or feet/ankles/legs and lungs, difficult breathing, anemia, difficulty passing waste, skin dryness, rashes and irritations, fatigue, dizziness, brain fog, poor memory, poor sleep, fainting, poor concentration, toxins in the body that can’t be filtered out, nerve damage causing numbness and these are not all it causes. Cardiovascular Disease (heart attack) is the leading cause of death for people with CKD.
I am not saying this to scare anyone but to make you aware. Sure, diet can help slow the process down as well as medications, good weight and staying active. There are 3 things that can be done. 1) nothing, 2) dialysis or 3) Transplant. Long discussions with the Nephrologist.
Nothing will end in death.
Dialysis is done 3 times a week at a center/home or done nightly at hohome.It can add more years to a person's life.
Transplant is from a live or deceased donor which can add several years of life. Anti rejection medicine must be taken the rest of the patient’s life.
I choose transplant! I am looking for a donor. Think about it. Talk about it. Learn about it. Ask questions. Ask how you can help spread this information. Help me find a donor.
To learn more about my situation, contact me on Facebook (Donna Fluharty Dale ) or visit the website, WWW.BarnesJewish.org/kidney-transplant or call the Transplant Coordinator at 314-362-5365 for more information. Give them my name and birthday when you call to donate to me. I thank you in advance. Please share!

Kidney Transplant | Barnes-Jewish Hospital Our kidney transplant specialists are experts in their field, performing more than 200 transplants each year – more than any other center in Missouri.

I have started my Gel Injections for both knees. I have bone on bone in both knees and one knee has bone spurs. The doctor will not do knee replacement until I have the transplant or be on dialysis for awhile. March 28th I go get fitted for knee brace. The brace that the doctor gave me falls to my ankle when I walk, making it funny to see people's faces when they see it. I just laugh.
On May 1st, I have to go back to Barnes Jewish Hospital and do more tests to see if I can remain on the waiting list for a kidney transplant. I will have a chemical stress test, several vials of blood taken, chest x-rays, fancy x-rays of my teeth (panorex), ecg, and the dreaded 6 minute walk. I have to make 1,000 or more steps in six minutes. Fun to do with these knees!!! I also still need to stay active.
My kidney function is still down to 8% and I am feeling well enough to not go on dialysis now. The Nephrologist told me some of the symptoms to watch for that will tell us I am ready are: 1) my skin will get very, very pale 2) I will hardly get out of bed (won't be active) 3) just the thought of food will make me feel nauseous and I will not eat.
When I do start dialysis, I will have to do it in a pet free bedroom. This means my son and his wife have offered to change bedrooms with me so I can have a private bathroom. I dread all that work.
It is getting close to pool season again which I love spending time initially. However, I will have a port in my stomach for the dialysis and won't be able to go in the pool. Not much fun!
March is Kidney Disease Awareness month. Reminder...I am looking for a donor. Think about it, talk about it please. To learn more about my situation, contact me on Facebook (Donna Fluharty Dale ) or visit the website, WWW.BarnesJewish.org/kidney-transplant or call the Transplant Coordinator at 314-362-5365 for more information. Give them my name and birthday when you call to donate to me. I thank you in advance.
You have my permission to share this text.

Kidney Transplant | Barnes-Jewish Hospital Our kidney transplant specialists are experts in their field, performing more than 200 transplants each year – more than any other center in Missouri.

Well it's that time again. How is everyone? This is Kidney Disease month and I have been letting everyone know how I live with Chronic Kidney Disease (CKD).
I am still not on dialysis. According to the Nephrologist, my labs still look good. I am still active, not overly pale, and don’t spend days in bed.
There are dialysis where people go to the centers for hours 3 times a week. I choose the dialysis where I have it at home every night while I sleep.
A port is surgically inserted into the stomach lining. It takes a couple of weeks to heal before they can use the port. Training at home is done to learn how to use the dialysis machine.
My bedroom can not have animals in it as it could get into the machine and mess it up. I will be able to walk and use the bathroom while hooked up. The lining of the stomach has fluid which is where the solution will go into and cleans the toxins out. Then it drains out into the toilet or bucket. Doctor decides how many cycles it does through the night. The machine is portable so visiting anyone is ok..
If I visit, I will need to send off a text to the coordinator of the transplant team letting her know how long it will take for me to get to the hospital.
I am still looking for a kidney donor. To learn more about my situation, contact me on Facebook (Donna Fluharty Dale ) or visit the website. WWW.BarnesJewish.org/kidney-transplant or call the Transplant Coordinator at 314-362-5365 for more information. Give them my name and birthday when you call to donate to me. I thank you in advance.
You have my permission to share this text.

Kidney Transplant | Barnes-Jewish Hospital Our kidney transplant specialists are experts in their field, performing more than 200 transplants each year – more than any other center in Missouri.

Today I want to talk about diet. Yes, that nasty 4 letter word!

Since I am diabetic and CKD, I have to be on a diabetic/kidney (renal) diet. That entails watching the daily limit for potassium, phosphorous, salt, calcium, protein, sugars, dairy and carbs. Not to eat processed foods, dark sodas, canned food (fresh or frozen only), no more than 2 cups of coffee daily, tomatoes, bananas, only 1 slice of white bread, very very little red meat. I can have 8 oz of dairy a day, 12 oz a day of protein and no more than 64 oz water daily.
There are several foods I can have occasionally. I get tired of not eating foods I like. My son and his wife (I live with them) remind me I can't "have that". I do admit that it gets rough at times but I tell myself "they love me and want me around".

Bloodwork has to be done monthly before I see the Nephrologist (kidney dr). People with CKD frequently have low hemoglobin where we have to get a shot that has to be given at the infusion center. Mine is done every 2 weeks. Bloodwork has to be done prior to the shot. Anemia is another area affected by CKD. So it is important to keep that up so iron pills here we come and we all know what they do to a body! I also have blood kits that comes from Barnes Hospital. I take that kit with me when I get my monthly bloodwork done and they send it back to Barnes.

When we see a Dr, they have to watch what CKD patients can have as in medication so they don't hurt the kidneys. Drs don't want to do surgeries because they are afraid healing might not happen. Pain continues. But, we still need to stay active. I get tired. SO VERY TIRED. It takes very little to tire me now.

I am seeing the Nephrologist on Thursday and we need to have a heart to heart conversation about going on dialysis. My kidney function is at 8% now.

To learn more about my situation, contact me on Facebook (Donna Fluharty Dale ) or visit the website. WWW.BarnesJewish.org/kidney-transplanor call the Transplant Coordinator at 314-362-5365 for more information. Give them my name and birthday when you call.

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I am so sorry for not being online the past couple of weeks.
March is Kidney Awareness month and with that, I would like to share some facts about Chronic Kidney Disease (CKD).
The main causes of kidney disease are diabetes and high blood pressure. Being overweight is also an added factor.
There are 5 stages to Kidney disease. I am at stage 5 which is not good. Last month my kidney function was at 9%.
Let's talk about the waiting list for transplant. I didn't just get put on the list. Barnes Jewish Hospital is where I plan to have the transplant. I had to be sure I was under 205 lbs. Then a bunch of tests were scheduled. I had my first test at 7:00 am. Bloodwork consisted of them taking 16 vials. There were x-rays, ekg, dental x-rays, heart stress test and my favorite (NOT) 6 minute walk. I had to walk 1,000 or more steps in 6 minutes. Meetings with social worker, financial person and doctors. We ate lunch on the run. We left the hospital around 3:00 pm. I have to report medical changes to the transplant team. I need to redo several test each year until transplant. Each month a vial of blood is sent to Barnes to check my antibodies.
I am actively seeking a kidney donor.
To learn more about my situation, contact me on Facebook (Donna Fluharty Dale ) or visit the website. WWW.BarnesJewish.org/kidney-transplant or call the Transplant Coordinator at 314-362-5365 for more information. Give them my name and birthday when you call.
You have my permission to share this post.

Kidney Transplant | Barnes-Jewish Hospital Our kidney transplant specialists are experts in their field, performing more than 200 transplants each year – more than any other center in Missouri.