Kidneys on way out - dialysis experience anyone?

[strugglingwaps]

Hi,

Posting for my poor younger brother ravaged by APS over decades.

Kidneys are on way out. Transplant is too risky with his current situation with prior blood supply bocks in various organs and limbs, past stroke and so on.

Dialysis is the only option. Peritoneal dialysis is out due to existing internal hernia and other issues.

Does anyone has any experience with fistula and dialysis?

His nephrologist is suggesting stretching out the kidneys as long as possible, and then doing permcath - and then fistula. They consider fistula to have low chance of success due to low blood pressure and supply in the arms and want to defer it out.

Our concern is doing that when already under the stress of dialysis is less desirable than doing it now.

Thanks for any insights and experience.

[MaryF Administrator]

Hi there, you are not the only one on here that has had dialysis in the equation and also transplant, it sounds like the team around your brother is working towards the best solution, I am sure you will get some other replies. MaryF

[Tofino5]

I’ve not experienced any of this, but I wanted to offer support for your brother’s rough situation. Wishing him all the best. He is lucky to have your help and caring.

[HollyHeski Administrator]

Hi, read your brothers story with interest, as I have been told my APS will go the renal route.Your brother is not only lucky to have you support him but for you to understand his APS and his options with his kidneys is truly wonderful. He is not so lucky to be going through all this, I'm so sorry.

Sounds like your consultant is also weighing up the options - can you both talk through with him/her? Maybe they can put you in touch with dialysis team, as they would have so much experience.

I have read on our forum others experiencing similar issues - hopefully they will reply soon.

[Momba49]

i have APS and a dialysis RN for over 20 years. His nephrologist sounds like giving good recommendations, have perm cath and wait for fistula.

[strugglingwaps in reply to Momba49]

Thank you   Momba49 !! My concern is that by the time dialysis starts with perm cath, the body would have already gotten further stressed and it will have to deal with dialysis as well as the creation and healing of the fistula.

The infection risk with perm cath + now the care needed for fistula to mature. So, while his kidneys are still operational even if barely - it feels like it is less stress to take one hit at a time. If fistula is anyway needed, then why wait for preparing it?

Another concern I have is perm cath itself is intrusive - one end of it getting into the heart chamber. From what I have read about APS, it is not limited to clotting factors and it is not well understood fully. It may have impact on the endothelium health as well. If his limbs are already in low blood supply situation with past clots, then I just wonder how a physical catheter snaking through his veins will avoid potentially dislodging any clots + would it not impact the endothelium (lining of the vessels academic.oup.com/rheumatolo...? He also has hypertension and and elevated triglycerides - perfect combination for potential non APS driven stenosis

His doppler this week shows only collaterals supplying the forearm area. It is already worry whether fistula itself will succeed - but one can not find out without trying to make one.

His nephrologist has agreed to initiate the fistula creation now and not wait the next couple or more months for dialysis need to truly kick in.

  Momba49 will you be kind enough to answer some questions about your situation to help us? I am new here and do not know if there is a way to do one on one conversations in case you feel questions may be too personal/intrusive. Let me find that out.

I want to know more about specifics of your situation and if possible bring my brother in - just to get the psychological support - nothing works as good as knowing someone else who has been on the same/similar road.

[strugglingwaps in reply to strugglingwaps]

Darned - the hematologist says fistula not possible with already low blood supply in the limbs from past APS hits. It will have to be Perm cath. 😔 Anyone has been on perm cath or knows someone who has been for more than 1-2 years and with APS?

[strugglingwaps in reply to strugglingwaps]

Or transplant! I do not understand with all the risks and existing blocks how transplant can even be a consideration? Has anyone undergone successful transplant despite past impacts of APS such as multiple strokes, 10-15 percent blood supply left for several organs and limbs?

[KD2605 in reply to strugglingwaps]

Bro it is the vascular surgeon said not possible due to irregular blood flow . Even a graft he is not confident. So permcath is the best solution at this moment.

[Bloodredroses]

🙏🏻🙏🏻🙏🏻

[strugglingwaps]

Some rays of hope - there is someone who has a cousin who has been managing with permcath for last 10+ years!

I feel fortunate to have come across inspiring persons.

By the way my brother is in India.

Kamal (blog: kamaldshah.com/) who runs the largest dialysis network in India is one of the inspiring persons.

[KD2605]

I am your brother who is replying.It is too much of psychological pressure as can't live a normal life, or living with plenty of restrictions.

How to face them present all at same time. Why not better opt for respectful death

[strugglingwaps in reply to KD2605]

A lot of folks here suffered/suffer physical and psychological impact from APS and they are all trying their best to support each other in their struggles. You are certainly far from alone with your situation in this community.

People have lost pregnancies, have lost loved ones, have had life turned upside down more than once.

I suspect more than one person here has had anguished and low feelings about their life and quality of life. Perhaps some of them will share their stories or you can just browse the posts for yourself.

I hope you will find it supportive to explore the forum. Maybe you will make some new friends and connections. May even be a support and connection for others.

[lupus-support1 Administrator]

Wishing your brother a speedy recovery. He is in my thoughts and prayers.