Some newbie questions!

[runedog]

Hi all and thank you for allowing me to join. I do have one or two questions which I hope you guys can help with:

I was diagnosed with Poly-cystic kidneys several years back and my latest blood test showed my GFR at 10. Both my sons had the same kidney disease and (luckily) have had successful transplants. They both opted for PD and I was going to take this route myself but now am considering having a fistula due to the following: My youngest son had no issues with PD but my eldest son had many complications which has left the poor lad with an extended tummy after his transplant. He ended-up having to have a line fitted in his neck.

Before I make my mind up regarding a fistula, can I ask the following: Is this operation done under a local and are you only at the hospital for a day? I'm retired now but still walk and train my dogs (I have three GSDs), can I still carry-on doing this between dialysis days? I also attend Yoga classes three times a week, can I carry on doing this, even though I may need to only attend one or two classes? Can I still take a bath with a fistula in?

As anyone here successfully tried any alternative treatment; herbal medicine, acupuncture etc, etc? If so, did this raise the GFR or alleviate the need for dialysis altogether?

Thanks so much for any/all replies.

[Grey]

I am in the middle of dialysis waiting for a transplant. I too have PKD. I started out with APD, machine at night which worked fine for me. Then my two kidneys got so big they decided there was no room for a transplant so recently decided to remove one. It turns out that kidney was 12kg. So a comment on his swelling, most PKD patients look like they are pregnant simply because of the size of the kidneys. Now after the operation because they cut the peritoneal sac I could not do PD for up to 6 weeks so have been on a neckline doing hemo dialysis. I will start back on APD tomorrow and to be honest cannot wait to get rid of this neckline and the 3 weekly hospital visits each week that with travel included takes the better part of 6 hours a day.

So for my part having done both the freedom you get by doing APD at night is so much better than visiting the unit 3 times a week.

Now on the fistula side, unfortunately my veins are very week, if I actually need to do Hemo one day heavens help me, I have already been told there is only one chance in my right are in the inner bicep area. I spoke to a chappie at the unit who also has bad veins and his stories were horrific. His fistula burst one night and he said the room looked like an abattoir.

Anyway if your veins are strong and you don't mind 18 hours a week at the hospital, ten it is simply a choice you can make depending on how you feel about everything, but if you have bad veins, think very carefully about it, ask as many patients as you can on here and elsewhere, get advice then what will be will be.

[runedog]

Thanks Grey, very informative.

[runedog]

Any more input please?

Thanks

[rheaybou]

It is impossible to say how you will react or feel on either type of dialysis until you start doing it.

I was all for PD, it was sold on freedom by the nursing staff. The reality is that you are stuck at home if you decide to hook up to the machine overnight and need to stay connected for eight hours. So you can go out with friends on an evening for a meal etc, but need to allow for 8 hours connected. This all also depends on how the peritoneum reacts to the treatment. At 33 I would have thought I would be fit and healthy and it would work well....however I was wrong!

I was classed as a fast transporter, the would mean that the excess fluid and toxins would be quickly removed during my treatment cycles....but I would then reabsorb fluid and toxins before new fluid could replace the toxin filled fluid. So doing dialysis for 8 hours each night was making me sicker! At one point I had a creatinine level of over 2000, yet the Dr's and nurses wanted to continue on PD - (Its lower cost to the hospital)

My change to HD saw my creatinine fall to around 300-500 and things such as excess fluid raised BP drop - I had a BP of 220/120 on average on PD and took a cocktail of BP meds. Sure four hours connected to a machine is not the best way to spend a morning - I got an early slot to allow me to continue working FT and would take my laptop to keep the mind active.

Veins are never too small or weak, a fistula or graft is always possible to allow HD access. I continued to play golf/walk while having a PD line fitted and also while I had my neckline in(never had a fistula) Life is what you make of it and we are amazing at adapting to our situations and finding life hacks.

Good luck with your decision and also treatment when you start

[Dotty]

Hi

I too started on PD, although I did CAPD and did 4 manual exchanges each day. I loved the freedom that it gave me and I had loads of energy. It did mean being a bit organised and pre planning but I loved it.
Sadly my catheter failed, and due to the amount of abdominal scar tissue I wasn't able to continue with it.

This has meant a forced change to hemo, which I really didn't want. I'm lucky in that the hospital is only 15 mins away and that I'm able to do the twilight shift so I can continue to work. But, I do find it tiring and hate the fact that I HAVE to spend so much time at the hospital. I resent the time it takes me away from my friends and family.

Good luck with whatever you decide.

Dotty xx

[runedog]

Thanks very much you two - your posts are much appreciated. I had an appointment with the renal team today including the pre-dyalisis nurse. She sadly is the person who tries to use what can only be described as 'bullying tactics' and scaremongering as if she gets bonus points for getting her own way. Also, the main renal consultant is off ill so I saw one of the registrars who was a timid creature who relied on the PDN to try and bully me into submission although I had taken a list of requests and questions which were not gone through at all!!!

[rheaybou]

Thanks very much you two - your posts are much appreciated. I had an appointment with the renal team today including the pre-dyalisis nurse. She sadly is the person who tries to use what can only be described as 'bullying tactics' and scaremongering as if she gets bonus points for getting her own way. Also, the main renal consultant is off ill so I saw one of the registrars who was a timid creature who relied on the PDN to try and bully me into submission although I had taken a list of requests and questions which were not gone through at all!!!

Stick to your guns and don’t be forced into anything you don’t feel comfortable with, the nurse may well think she knows what is best.....but it sounds like she hasn’t judged you right. I managed to have a great relationship with my PD dialysis nurse and also the two original renal consultants who cared for me pre transplant, so much so I have just had a message from my PD nurse asking me how I am doing.

Have you thought about contacting your local kidney patient association, they will be able to offer help/advice/support outside of the hospital

[wagolynn]

PD, on average gives a better clearance but there is a risk of infection at the tube entry site. The peritoneum has to be in good condition (not too many scars from previous ops) and you must have sufficient volume available (excess fat or enlarged kidneys reduce volume), cost does not come into the equation. APD machines are quit portable so you can stay away from home. People on PD do travel, Baxters will arrange delivers for you almost anywhere.

Hemo - again a neck line has a high infection risk at the entry site. A fistula has a lower risk of infection, also visiting the unit brings you into contact with other patients, at least they understand the problems... Hemo can be done at home, here cost does come into it, the costs are higher for patients at home, so if the budget has been used up the patient has to wait until next financial year.

Good luck.

[hotashel]

Grey,

Please can I ask have your kidneys grown due to PD or due to your PKD?

[Grey]

PKD is polycystic kidney disease. It is a genetic malfunction. The kidneys become consumed by large fluid filled cysts that eventually destroy all the matter of the normal kidneys until total function failure. Absolutely not down to PD. I have just finished a stint on hemo (neckline) and can say it is harsh. Most of the rest of the group in my batch each day were all sadly depressed and not well. Makes sense that if PD works for you, it is much better to have daily treatments removing poisons etc over the whole week than trying to do it all in 3 x 4 hour sessions on hemo. APD is altogether a much gentler process. Well as you can tell for me there is no debate especially because my veins are so bad to start with.

[hotashel]

Hi,

Thank you for that (I have just noticed that you live in Chester Grey, not too far away from me along the 483 and up a few mountains) PD is the one I will choose first when the ever approaching time comes. It doesn't scare me this whole renal failure process, why worry about something you have no control over. The hospital can't believe how matter of fact I am about things and how I am not phased. I see no benefit in stressing about the situation, myself and my live donner discuss the process in the same way. I think it shocks a lot of people when they tell my friend its a massive thing, she simply says "I want my friend here with me alive"
My thoughts are there are people a lot worse off than me for example terminal cancer - I have a chance if its transplant or dialysis its a life line. I may get some scars on the way, but I will be proud to show them off as they will tell a story.

[suz]

Hi Runedog

I also have poly cystic kidneys and was on HD for coming up to 5 years prior to receiving a transplant earlier this year.

I don't see any reason why you shouldn't be able to continue to attend your yoga classes and train your dogs. Two of the men who attended my dialysis unit one in his mid 70's and the other in mid 50's both played ten pin bowling at a competitive level and another man in his 70's rode his bike up to 40 km most days even to and from dialysis which wasn't recommended.

I found having dialysis at a unit was a good thing for me as there was a good connection with other people in a similar situation to myself and I met some amazing people. It was a friendly, happy unit and we celebrated birthdays and other special occasions etc. Once my treatment was completed I didn't have to think about dialysis again until my next session and I lived a fairly normal life as much as possible.

Regards Suz

[runedog]

Thanks very much Suz, that was a very encouraging post and makes me feel a whole lot brighter. Besides my family, my dogs are my life and seeing I have lived with GSDs for 46 years and dogs all my life, it would be a blow giving them up now. Luckily my better half does love dogs and she also walks them but training them is my great love.

Thanks again Suz

[knittygritty]

You got some really good advice from everyone but I just wanted to add that I've been doing APD since May this year and it hasn't stopped me. I'm still pole dancing and doing yoga and skiing etc etc. You just have to listen to how you feel, if you feel capable to do something etc.

Do what's best for you. Ask all the questions you can even if they seem stupid (I entertain my kidney specialist with my daft questions like can I eat blue cheese after a transplant haha!!).