My time has come?

[Mr. B 123]

I have not posted much lately, just reading and learning from others on this kidney journey.  But my time has come, 2 months ago went to doctor for check-up to go to Boy Scout summer camp with my troop and kidneys were at 17%.  Went to nephrologist 1 week later and at 13%.  Then things started to move fast, PD catheter operation on August 13 and now attending classed at dialysis center to do home PD.  Lots to learn along with my Son  who is my "wingman" in all of this and my wife is also attending as a backup.  Thank God for their support!  Some problems with the PD plumbing, blocked, so flow was slow, but working thru that hope to be going full speed by end of the week.  All of this is scary and life altering but with support of family and knowing my God is helping me thru this I will "Do my best".  That is my rant for know, continuing to learn about kidneys from all the information and experiences on this forum.  Thanks for being there!

[Kathymac2]

Mr B,

Best of luck to you as you start on PD. It's a journey many of us have taken successfully.  Allow yourself plenty of time to get used to the process. What seems overwhelming now will be routine when you look back at this time in a couple of months.

My best advice is believe your nurse when she tells you "constipation is the devil".  Eat well and use laxatives prescribed by your doctor as needed. My doctor prescribed lactulose and it's a lifesaver. I take it with a small glass of water every other morning and I have never had a slow draining problem. 

I made up medium-sized plastic food storage containers without lids to keep my supplies together for hooking up to my cycler, for adding heparin to my solution bags and for my daily dressing changes. It makes it easy to grab the needed supplies and go. You can also see when you are getting low on supplies. 

Kathy

[MooseMom]

Gosh, it HAS been a long time since we've seen you around these parts.  I don't really want to say, "Welcome back", but I think you know what I mean.

Have you thought at all about transplant?

Take good care of yourself, hugs to your wife and son, and keep us posted on how PD is going for you!

[Mr. B 123]

Kathy, Thanks for the tips, I will get a plastic storage container for all my "stuff".  I spend 15 minutes finding everything just to get started.  Yes I have found out about laxatives and have been taking them 2 times a day.  The nurse thought at first it might help with slow drain,  but still had issues so a trip to hospital for x-ray showed the catheter moved and was too high and was not draining completely.. So now back for surgery to fix that issue next Wednesday.  Not looking forward to more surgery but I need to get things going.  Thanks for the tips. 

MooseMom,  It has been a while since I have posted anything but I have been reading the posts.  My eGfr was stable for 5 years but crashed this summer, so here I am.  Yes we have discussed transplant but I realize that can take time to happen.  So PD for now and see where we are in a few months.  I was set to do hemo, in fact first fistula quit so I had a 2nd operation to have it ready but it is embedded in my arm so that will be another operation to bring it to the surface to have as a back up if PD has issues.   Good to hear from you, my family still talks about the Chicago lunch we had a few years ago, we should do that again.  Take care!

 

[MooseMom]

You know, every time I pass that place where we had the IHD lunch, I think of you.  The restaurant has changed ownership several times since then.  It is now a "modern" Mexican food place, having moved from a great location elsewhere in St. Charles.  I'm not sure why they moved, but we still go there from time to time as they have really good tacos and great salads.  My husband and I would be pleased if you and your family could meet us there again some time when things are a bit more settled with you.

It must have been a shock to see your gfr suddenly decline.  Mine was stable for many years, too, and then suddenly tanked to below 20, at which point I got on the tx list.  I wonder why our gfrs just suddenly would decline like that!  I guess it's like a clogged filter; it can take the increased pressure for only so long before it finally clogs up to the point where it is basically useless.

Anyway, I hope PD works for you long enough to serve as merely a "bridge" to transplant, if that is what you wish.  In the meantime, I am hoping that the really smart boffins out there can devise better dialysis systems.  We've talked about that for years on IHD, and we have yet to see anything really mind-blowingly new.

I'd be most interested in following your progress should you care to post about it!

[Mr. B 123]

MooseMom,  It would be good to see you again, maybe lunch after I get settled into place.  My wife has family in the Elgin area so we still head in that way to visit but it would be fun to get to see you for lunch, no problem taking a short trip.  I will let you know how things progress with this new journey.  Good to hear from you again, take care.

[MooseMom]

That sounds great!   

How is your wife handling all of this?  It must be a real challenge for both of you. 

Thank you for reminding me about your fistula; on reading your post, I'd wondered why you had decided on PD because I remember you telling other "newbies" that the surgery wasn't so bad.  Now I know.  When I had my fistula created, the surgeon made it so that it was brought to the surface like you've said that your surgeon will do should you decide to do hemo in the future.  Hopefully, PD will be very successful for you (despite the clutter).

Have you been on dialysis long enough for you to be able to feel physically better?  I know you've had trouble with getting a good access (which is the real bug bear of dialysis; the body is not built to have a permanent outside access to the cardiovascular system).  I hope any surgery you undergo to fix that problem goes well and that you'll soon begin to feel the benefits of PD.

[Mr. B 123]

Actually I haven't started dialysis yet, like I said the catheter was too high to drain so I am sitting hers now ready for surgery tomorrow at noon.  I hope all goes well so I can get started on dialysis.  My skin is itching like crazy and my skin is extremely dry.  Had a foggy brain and blurred vision back month ago but that has improved.  With this delay and the second operation tomorrow they canceled 3-5 training sessions so it will probably be October before I get going and will feel better.

During the training we have been working on exit site daily cleaning and hooking up to the machine.  They will bring the machine when they feel I am ready to start.  Today they delivered 130 boxes of supplies to get things going, had to make room on the sun porch for everything.  3000 pounds of stuff the delivery guy said

Better head to bed, long day tomorrow!  Take care and I will kep you posted how things go.

[MooseMom]

Oh, OK, thanks for clearing things up for me.  I apologize for having misunderstood.  I knew the catheter was too high, but for whatever reason, I thought they had fixed that.

I hope your operation today goes/has gone well and that that particular problem is now solved.

I've often heard PD patients talk about the sheer quantity of STUFF involved! 

Best of luck to you, Mr. B!

[Mr. B 123]

Well it has been 3 weeks on PD, I am getting the hang of the entire process.  Lots of stuff to get ready to start and to disconnect from the machine.  Takes about 9 hours connected to the PD machine but then you have to load the solution wait for it to warm up and then do all the things to disconnect and put everything away so right now it takes a total of 11 hours from the time I get on the machine until I can walk out of the house to go to work, a doctor appointment or church.  Had a 7:30 a.m. doctor appointment last week and I had to be on the machine at 8:00 p.m. to give me time to shower and everything and then drive to the doctor's office.  I am learning to plan my time ahead so I can be ready to go, I am not complaining just have to make adjustments to get out of the house on time.  Over all the dialysis center says everything looks good, weight, BP and all of the other tests.  Have to do the P.E.T. test next week, that will be an all day event as I need to be at the dialysis center every 2 hours, it will be a full day.  I thank God and my family for being there with me thru this process.  That is my latest update on my PD saga, thanks for listening to my rant.  Take care!

[Riki]

You can set up the machine ahead of time, so that when it's time for bed, you just connect and you're done.  My mom used to do it for me when I worked nights.  She'd come into my apartment in the evening and set up my machine and go back home again (though sometimes she'd stick around for a while and play on my pogo account, cuz mine was paid and her wasn't).  When I got home around 4am, it was all ready for me.  When I moved home, we would take turns every night, setting it up.  We even timed each other, to see who could do it faster.  Mom could get it done in 4 minutes.  I couldn't get it below 7 minutes.

[Mr. B 123]

On my 7th month of PD, like everything in life you get used to it.  I am happy my kidney doc said to go with PD even though I have a fistula for HD, I still want to remain active and many folks I have talked to HD really slows you down.  I sit in my room right now looking at 60 boxes of supplies hoping this will keep me going with the supply company, they seem to be on top of things with all the virus stuff going on.

Was in the hospital for 6 days at the end of February for a leg infection, glad I got out before things got busy with other health issues.  I was interesting doing PD in the hospital, the nurses and the dialysis nurses saw that I was good on my own to set things up and just let me do it on my own.  One nurse said she learned a lot about dialysis just talking to me, glad I could help out!  Even brought some supplies from home that they didn't have, like a 22 foot patient instead of the 10 foot one I got the first night.

Went to the dialysis center for my twice a month appointment and now they are going to do visits on my smart phone so everyone stays healthy and to reduce exposure time for staff and patients, good idea.  Just 1 visit per month for blood work.

Just an update for now, hopefully all will be well and the world can get back to normal, if there is such a thing?  Be healthy, be safe & Be Prepared!

[Simon Dog]

I've often heard PD patients talk about the sheer quantity of STUFF involved! 

The way I described it to people was having my prescription order delivered by fork lift.

[MooseMom]

Thanks for the update, Mr. B 123!  Gosh, it seems like you're quite the pro, now!  Look at you, teaching those nurses a thing or two about dialysis!  Well done you!

[Mr. B 123]

Simon Dog, you explained it exactly!  And it comes in a truck!

Moose Mom, yes it just takes getting used to things.  Once everything get settled down we will have to do a lunch with the gang!  That was fun.

[Mr. B 123]

Well my friends, my journey on dialysis continues on.  Seems my membrane is slow and my kidneys have stopped working, they say it might be from antibiotics I was on while in the hospital 2 months ago to fight off an infection in my leg.  So now PD has to do all the work and they are trying different solutions to get enough treatment to do the job.  I have changed my cycler 4 times in the last month, more time, more exchanges, more bags, different solutions, etc.   Starting a new solution tonight, etraneal to see if that helps.  They are even talking about going to hemo, which I really don't want to do if I can avoid it.  Oh well as they say, "I don't like it but I guess things happen that way".  got to go with what works, hope this new program helps.  Everyone be safe, be healthy, Be Prepared!

[Simon Dog]

Back when I was on PD I did a daily exchange at work, and would occasionally take a half dozen or so cases of solution for my office.  Got really strange looks at the loading dock when they wanted to know what I was self -delivering .... I just told them prescription medication.

If you do have to go to hemo, you don't have to lose the benefit of home treatment.   The technical demands are greater, but you don't live in constant fear of peritonitis.  If you take an attitude of "I will prevail", you can learn to follow the protocol and avoid the entire clinic experience.  You also will be drawing you own labs and shipping them off.  I had two shipments to make - one to the Fresenius lab and one to the regional tissue typing lab for the final test for when I became a candidate to make a withdrawal from the organ bank.

[Mr. B 123]

Simon, thanks for the advice. Hopefully I won't have to do HD.  Still working to increase the treatment to avoid HD.  Did more testing today to see where PD is at so I hope I get a good report.  Take care!

[Mr. B 123]

Got bad news yesterday, PD is out, have to go for operation to raise fistula so I can start hemo dialysis.  Two more surgery's next month, one to raise the fistula and another to remove the PD catheter.  Not looking forward to these, four operations in 11 months.  I am hoping to do home hemo if I can get my son to be my wing man, otherwise in center, no choice.

I guess life goes on.  It is a great to be alive.

[Simon Dog]

I am hoping to do home hemo if I can get my son to be my wing man, otherwise in center, no choice.

The NxStage system is now FDA approved for solo (no partner) dialysis, except for the nocturnal protocol.

[cassandra]

Seriously Mr. B 123, Nxstage is the way to go. I did in-centre hemo for 16 years, 5 years PD before getting the chance to get Nxstage (UK) and am doing that now for 8 years solo. Like simon says: not only same independence without the Peritonitis drama/trauma. You’ll feel better for it too ( I have no kidneys/function either) Never give up hope, life is the only way to be, I find 


Good luck, Cas

[MooseMom]

I didn't know that the FDA had approved solo NxStage!  That might be a real game changer, Mr. B.  I'm sorry you've had this drama, especially in these viral times, and wish you the best.  I don't like it that you have to have these ops, but I want you to stay alive! 

Would you mind updating your news as time goes by?  I'd like to know more about your thoughts regarding NxStage/home hemo, although I realize said thoughts might change from day to day.  I'm sorry to hear that PD didn't work for you.  I know you really wanted to avoid hemo, so I'm really hoping that ultimately you can give home hemo a try.

Best wishes, Mr. B.  Keep us posted!

[Simon Dog]

I know that as of 2 years ago before my xplant that Fresenius had something like 80 solo patients on NxStage (info from my MD).

[Mr. B 123]

Thanks for the support Cas, Moose Mom & Simon, I am doing my best to stay on top of things and I hope this goes well for me.  Talked to the home hemo nurse and went over a quick rundown of the machine and I have checked a few videos of how to set up the machine and start dialysis, lots to learn.

I am doing vein mapping this Friday then I see the surgeon next Wednesday to get things rolling for the 2 surgery's.  I can only place all of thin in God's hands and ask for his guidange and blessing.  Thank you all for listening.

[kristina]

... I had a chest-catheter for a few years and I feel very fortunate, that I never had any problems with it. There was no pain and no bother. But I must point out, that I was dedicated to always adhere to all the rules involved : no bath and no water ever near my chest-catheter.

I also used a Dialysis Centre three times every week, each time for four hours and the reasons for that were as follows : our home  would be too small for all the medical equipment necessary for home-dialysis and furthermore, if I would have been having dialysis at home I would – directly or indirectly – have caused stress to my caring but non-medical husband and I don’t think that would have been fair. Also, our home is our home and it would not be right to change it into a semi-hospital, because then we would allow my dialysis-treatments not only to take over our home, but also our life.
One very positive point in using a Dialysis-Centre is the fact that the nurses and doctors are always there and can be approached at all times for whatever question, blood-check-up etc., whereas being at home there are two non-medical people who could get into all sorts of medical difficulties i.e. how much weight to take off/low blood-pressure or hypertension etc. etc. 

I am very grateful that I had the opportunity to go to a Dialysis-Centre, where the nurses and doctors were not only very professional, but also very kind and approachable and I am very grateful for their kind medical care and  - to be honest – I am not sure if I would have done so well up to my transplant without them ? 

I wish you good luck with whatever suits you best and I send you my best wishes from Kristina.