Sikcell: People living with Sickle Cell

We still Hope

Kidney failure

Hello,

Is there anyone dealing with or has dealt with kidney issues? Is anyone currently on dialysis or has been? Can you share your experiences?

Thanks,

Alex

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Permalink Reply by candace brinker on November 4, 2015 at 11:51am

I've had just stones.....I'm really sorry your dealing with that! I pray you get better!

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Permalink Reply by Alex on November 5, 2015 at 2:32am

Thank you, Candace

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Permalink Reply by Ebony Ravenell on November 4, 2015 at 12:34pm

Yes, I have.

Actually My dad gave me his kidney in April. I've dealt with this for 4 years on meds but to be honest when I was younger (22) I didn't want to take it seriously because I didn't want to believe it. Everything was starting to pick up by the time my 24 birthday came around I was in and out of the hospital for different reasons but still getting treatment to slow down the progression. I was on Dialysis for 3 months before the surgery happened For those 3 months I was in and out of the center, major headaches everyday took a lot out of me and I did nothing but sleep. After the transplant I felt great though I am still dealing with Anemia issues with levels of 4.2 every month and a half but now im on a shot for that and hoping like hell it works. I don't want anymore issues because it does get hard, but you have to find that one light that makes you happy and keep living daily life.

Best wishes -Ebony AKA Wolf.

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Permalink Reply by Alex on November 5, 2015 at 2:36am

Thank you for your response, Ebony. Congratulations on your new kidney. I heard that going to the center for dialysis is hard on people without sickle cell, so I can't imagine how awful it must have been for you. Keep taking care of yourself. I hope your levels improve soon.

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Permalink Reply by Willette Thompson on November 4, 2015 at 3:20pm

Started peritoneal dialysis (home dialysis) in Aug. My nephrologists monitored my blood work for the past 2 yrs and decided to start dialysis when my levels were appropriate. I never felt any physical symptoms of my kidney failure but my doctors kept a close eye on my blood test. Getting monthly transfusions made that easy for them. I decided to do my treatment at home because I didn't want to get stuck anymore than I already do and didn't want to be scheduled at a center 3 or more days a week. I want to work a few more years and doing dialysis at home every night seems to be better for my lifestyle. It is a lot of responsibility and it is completely in your hands. There is a lot of supplies to keep on hand so if you don't have room inside your home for about 40 boxes I would not recommend it. You do all the work and a dialysis center monitors you and teaches you everything you need to know. If medical procedures make you nausea, peritoneal dialysis is not for you.

I don't feel any different than I felt before I started dialysis. You may need to adjust the dosage if you feel drained afterwards. It depends on your weight and blood pressure fluctuations. Your center will show you how to monitor that.

Check with your nephrologist for centers in your area. Unfortunately, there are plenty to choose from. Once you start with a center they will walk you through all the financial, medical and dietary needs. You may also qualify for renal Medicare which will be a big help with the cost. Let me know if you have more specific questions.

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Permalink Reply by Alex on November 5, 2015 at 3:07am

Thank you for your response, Willette. Seems my situation mirrors yours. I am very apprehensive about starting dialysis. I am also not feeling any symptoms however the dreaded creatnine keeps going up and GFR keeps going down. I am working and would also prefer to do the PD. I do have some questions.

When you say it is a lot of responsibility, what exactly do you mean? Is it difficult managing the machine by yourself? I am already on desferal 5 nights a week, for 4 years now and I am really hoping it is not much more than that.

Is your machine noisy?

Is it a hassle dealing with the tube hanging out of your stomach. How do you manage it? Is it baggy clothing from here on out?

Have you traveled away from home overnight while on PD?

Since you don't feel different, besides the lab numbers, how do they tell that it is working?

Is it really for 8 hours every day?

Does it bloat you or make you puffy?

Thank you again for sharing.

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Permalink Reply by Willette Thompson on November 7, 2015 at 12:09am

The machine is not noisy at all, unless there is an alarm. There is an instruction booklet that explains everything, It is really simple to operate. You are completely responsible for administering the dialysis which is more involved than driving to a center and sitting down, however you do it all while you are asleep so it is possible to maintain a job.

I have not traveled yet but the supplies can be shipped anywhere you go and the machine is portable and can fit in an overhead compartment. It has a carrying case but is does weigh 30lbs. I have heard that there are even dialysis cruises available. If you do PD, it makes travel easier but my sister in law traveled this summer and went to dialysis centers in other cities for her treatments. She does not do PD so her dialysis center made arrangements for her to be treated where she went.

The dialysis center I use has test that they do each month to make sure all is well. It had only been a couple of months so far and they say I am not getting worse.

I am doing 3 rounds of dialysis that each take 3 hrs but it is done at night. I don't feel that much bloating because I don't carry any fluid. Since I am usually asleep, I don't really feel it. The catheter is usually taped down so it is more comfortable. I would recommend that the Dr be aware of where your waistline is so the access site is not underneath the waistband of your pants. That is a little issue I am having but my waist is a little high. Again it has only been a few months. I don't think anyone can tell the catheter is there in a pair of jeans, I think it could be more of a problem for women than men. You can keep a bandage over it if you want more cushioning and you can swim in salt water or a pool but no hot tubs or baths. Wish I had know that before but my knees are so bad these days, getting in and out of a bath tub is pretty impossible. I will miss the occasional hot tub though. Since I have maybe been in a hot tub less than 10 times in my 56 yrs, it is a small price to pay for my health.

Your Dr is going to want to start your dialysis before things get out of hand. You want to get things going before you feel any of the effects. I imagine it is a lot less traumatic. Folks have been living with dialysis for years so it is just another thing we have to learn to incorporate into our lives. Look at your life and decide which method will be best for what you want to deal with in the coming years.

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Permalink Reply by Alex on November 7, 2015 at 2:55am

Thank you very much, Willette and thank you for being very detailed in your answers. I am working closely with a Nephrologist and have been for many years now. I already have the catheter embedded but have still been dreading the actual start in part because where I live, sometimes I feel like I am the only person who has sickle cell and is dealing with kidney issues.

Good to know about the clothing issue. Sorry about the hot tub loss on your end.

If you don't mind me asking more questions, since you are on a monthly transfusion schedule, are you having issues with too much iron? If yes, is that being dealt with in the fluid you are using?

Thank you again for your reassurances, I appreciate it. At least I know now that I am not going into it blind despite what the doctors say. At least I have the perspective of a fellow patient.

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Permalink Reply by Willette Thompson on November 7, 2015 at 5:11pm

I do have a high iron level. They are not adding anything in my fluid at this time. I know how you feel about being the only person with sickle cell. I don't think I met anyone in my generation that had sickle cell until I was in my 30's, long before social media existed. I was the only person in my family with it. I grew up feeling like I was the only person in the world with sickle cell. Lucky you now have social media. Others are just a few keys away!