What's your experience with dialysis? Give & get support here

@kamama94, Well, my Irish is in full rant too! I'm ready to write Fed-Ex, your mayor, USPS, Homeland Security, and the Easter Bunny in Protest! That is simply an outrageously unfair, unconstitutional and unholy reason to be having to go the permacath placement and 3xs/week dialysis clinic route because deliveries are not made on time !!!!

My daily cyber pal who lives in Queens, NY, in a large secure multi-family bldg has written how she couldn't get food and medical deliveries because the carriers would Not follow the instructions posted on how to deliver within the bldg. It became a serious issue for her as well during the city mandated lock down.

And yes, one kidney patient about to start home dialysis did share at our local qtrly kidney support group that the supplies required for home dialysis were taking up so much space that her guy had to make a path for her for fear of her falling. She said he was in charge of lifting and storing the supplies because they were too large and cumbersome for her to manage. She also said her guy was very nervous about helping her carry out the procedure. But that is still not the point! At all!!!!! And No! I'm not feeling better yet about this travesty! Where are the cookies, the cigars, and the bourbon when a gal most needs them???? May be up past 8pm making large picket protest signs for FedEx. Anyone else want to join me???

@kamama94, My parents told everyone the story that age three, I came stomping into the kitchen saying I was really mad at God. When asked why, I said: Because He put more sunshine in the neighbor's yard...perfectly understandable, yes?

Still, I was well into adulthood before realizing that women, particularly, were less likely to express anger which came so naturally for me. While I'll go to the mat over injustice for another, I do not rise to the occasion as well for myself. I think anger can be a good tool like others and can sometimes prompt an action for a better result.

No need to apologize, imo, you are simply stating the deplorable truth that the "haves" live much differently from the average, hardworking American. While expressing anger comes far easier for me than tears, my daughter is horrified and embarrassed that spontaneous tears occur for her when she becomes angry. I'm with you 100% in choosing anger over tears over the disparities between those with more vs those of us with less. Some days are just too much for even the best of us and then another day arrives and we feel better. Hoping you find some comfort in remembering that others are rooting for you and want to share your journey.

@fiesty76, I laughed so much at this I almost forgot to tell you there won't be enough bail money for you.

@fiesty76 @kamama94 Asked a friend (76) if she would join my Over 70 Protest March, which I am planning on organizing because I'm so frustrated over what I see as wrongs being unattended to. Why over 70? Because this group, it seems to me, are the only ones left with any common sense. She declined, as would probably most everyone I would ask. I grew up with Wonder Woman, though, and like to see wrongs righted. Haven't got over the AMA acquiescing in the denial of care (care not COVID19) to Chemo patients. I shall complain on your behalf to our local FedEx guy, who is also a neighbor. Maybe if FedEx discovers that unflattering publicity is more than local, something will change. Also, do you suppose your doctors warned you about calling emergency because doctors are notorious for making sure you've been told the absolute worse - no sugar-coating here? Think they dread the "why didn't you tell me?" question, but maybe it would help a bit if doctors put it in perspective! Feel like venting here at 3:00 a.m., please do so. Listening is maybe one small way we can help!! Take care.

@trishanna, I'd march with you if I could walk, LOL! No worries about FedUp, er, ah I mean FedEx, there should be no doubt in their minds as to my opiniions about their poor service, having already communicated this to them in no uncertain terms. Please try to stay out of trouble the rest of the night! It's closing in on my 8 PM bedtime here so I won't be able to bail you out.

Wed Aug 26 update - tough day, very tired and tummy definitely not happy. Uremia is no fun!

Radiology didn't take long. I saw pretty small veins, perhaps too small to withstand the pressure of a fistula or a graft?

Will know more after talking with surgeon tomorrow morning. Stay tuned.

@kamama, Hope you tummy settles down and that you have a much deserved restful night.

@kamama94 How are you feeling today? I hope your anxiety has been alleviated by info from the dr.
Ginger

@gingerw, thanks for asking!

Feeling a bit better after a very rough morning of headache, dizziness, nausea.

I have known my surgeon for years, he's one of the best. He wants to do a right-sided permacath next Tues so I can have dialysis the next day. Then a week later he'll do a left arm AV fistula for longer-term dialysis. He explained his techiques in detail and said he wants me under general anesthesia while he stitches vein to artery. I was right, my veins are very small but he's evolvd a technique to compensate for it.

I saw him early this morning then had to go to the hospital for pre-op stuff - ekg, more lab work, anesthesia consult, etc. I'm wiped out but less anxious.

I finally found out why the runaround and the delays in treatment - Medicare won't pay for hospital dialysis, only for dialysis at an approved cllinic but because there are hoops to jump through before Medicare will pay for the pre-dialysis surgery, it takes awhile to get everything in place. I told my surgeon I hoped I was still alive by then. He laughed then got serious and said it was his opinion and the nephrologist's opiniion that I was stable enough for now but if I started feeling worse to go to ER and page him.

I reminded him of some of the pranks he pulled on us during my student nursing days and he pled guilty. I told him I forgave him, LOL, but he owed me one.

I feel a nap coming on soon. . .

Neph just called, is sending out compazine for the dry heaves and says I'm on the schedule for dialysis next Wed AM after next Tues PM perma-cath placement. Assured me I'll feel better soon.

Phew!