PD Dialysis - Week 6 - Houston we have a problem

[RonZone]

NOTE: THE FOLLOWING EXPERIENCE IS MINE. DO NOT ASSUME YOU WILL HAVE THIS EXPERIENCE! DO NOT TAKE IT AS NEGATIVE TOWARD PD DIALYSIS. I wanted to post this addendum at the top to let folks know that doing manual PD revealed an issue with my back that had been hiding in the wings. I doubt any of you will have my specific issue. It is mine alone. I still have full confidence in PD and found the experience (without the pain of course) very doable! I wish I could've continued for a longer period. I very much look forward to switching to the cycler and work with my team to come up with a solution for cycler PD that will work for me without the associated pain reported below. Watch for future posts concerning this experience and my cycler PD experience.

____________________________________________________________________

So exactly one week after starting PD training, I woke up Monday morning and made the executive decision that I was going to call my Primary Care Doc and get his take on things. I also made the decision to drain my PD solution and NOT refill, and ask for forgiveness from my PD nurse later. I got in my car and drove to my doc's office. When getting out of the car, a pain seizure hit in my back that dropped me to my knees. I spent 10 minutes crawling around on the pavement before I could pull myself up using the mirror on my car and get into his office. Once there I could not sit. So I stood while waiting my turn and then in the small exam room. When the doc came in, I told him what was going on. He gave me a prescription for some pain medicine, and had his office to call and schedule me for an epidural in my back. I asked him if I could postpone PD until I got the pain in my back taken care of since it was dangerous if an attack happened during connection or disconnection I could drop my catheter and get a ton of germs on it from the floor and give myself a major infection. He said to start back as soon as I could.

So I went home, climbed in to bed after another excruciating experience getting out of the car, and stayed in bed on the hot pad other than to "roll" out of bed to go to the bathroom or get a bit to eat. But I had little appetite. I took the pain medicine he gave me. The hospital called and said they could schedule me for the epidural Sept 2. I explained to them I had stopped dialysis and they then found an opening or today (Thursday). I basically was bedridden from Monday until this morning.

I noticed night before last that I was able to turn over in bed without as much pain, and last evening, I could get up out of bed easier. So this morning, I tried sitting in a chair for the first time since Saturday evening. I was scared to death that when I got up the pain would hit like a freight train. But alas, it did not. I could get up out of the chair with very little pain. So I sat on the couch, for a bit longer period, same good result. So I called the pain center where i was going to have the epidural and asked if I could have a consult with the physician doing the procedure before they actually did it. They said sure.

So I went to the hospital pain center today at 1pm and spoke with the physician (Anesthesiologist). And yes, I was extremely happy that I could get out of the car with very little pain in my back. I told him everything that was going on. He told me that he would not give me the epidural in my current state, and after listening, he said he didn't think that an epidural would do my situation any good. That I need to speak with my nephrologist about the situation. I had mentioned to him that the pain started the first day of PD training and once I stopped doing PD Monday morning, the pain subsided over the last 3 days. I had even stopped taking the pain medicine yesterday morning. He said he did not want to offer a theory, that he didn't now enough about PD to make the call, but they sure sounded related and to talk with my Nephrologist about it.

I called my Nephrologists office this afternoon, only to find out that now that I'm a "dialysis" patient, I have to go through the clinic to see a Neph. (Didn't know about that arrangement). So I turned around and called my PD nurse, who in turn called my Neph, and "they" decided that I should go in the cycler at night since it would put less pressure on things as the fluid would be more spread out. So it seems that's the next step, to rush getting the cycler in and get both me and my nurse trained on it, so I can start using it pronto. I sure hope that does the trick, cause I can tell you, right now, manual PD is just not an option for me.

Each person has their own set of parameters to work with. I had no idea that I would have a back issue that would prevent me from successfully doing manual PD for a month before going on the cycler. But it is what it is. Now I know. I have a nerve in my back that definitely lets me know!

So I'll continue this journal once I hear back from MY PD nurse as to when the cycler will be here so we can start training and I can get back to it.

[Beachgirl32]

Ron sorry you had so much pain. Prayers lifted for you🙏You are a trooper

[RonZone in reply to Beachgirl32]

Thanks. I'm MUCH better today without the pain! So we'll see how all this goes on the cycler. I'm hopeful that it will work out just fine.

[Darlenia]

Oh my...I think you'll love the cycler. Your report makes me kinda wonder if that's one of the reasons my hubby was sent straight to the machine, practically skipping manuals. While I've heard manuals can give some hernias to some, back issues makes perfect sense too. I truly hope and pray that the cycler comes through for you and that your troubles disappear for good.

[RonZone in reply to Darlenia]

I'm really keeping my fingers crossed for the cycler. I don't mean to be a wimp, but that experience really hurt! But I feel great today and looking forward to getting started on the cycler when it get's here and I get trained on it.

[Darlenia in reply to RonZone]

Yes. With a cycler you're still carrying a load but at least you're lying down - unless you want to sit in a recliner while watching the late shows, lol. Not sure how your training on a cycler will be handled. My husband was taught sitting in "that chair" that started your issues, but maybe they have better ways of doing it at your center. (Our room was simply too small for a bed.) I sincerely hope it all works out for you. It's such a nice form of dialysis. Crossing all my fingers and toes that it turns out great!

[RonZone in reply to Darlenia]

Yeah, I have no idea how the cycler training will be done. I'll know soon enough. Thanks for the crossed toes. I may need em!

[Darlenia in reply to RonZone]

Yeah...you may want to take things with you to prop yourself more upright in case the dreaded chair is used for an extended time. My hubby has a neck curvature (a bit of a hunchback if you look carefully) and I always take an easy-to-carry "inflatable" pillow with me to use - his problem is laying flat on tables or cots in areas where hospital pillows aren't available. Just a suggestion.

[RonZone in reply to Darlenia]

Hey, I have to take a pillow like that for my dad who has the same issue, only probably worse than your husband. For me, I'm going to have a good talk with my PD nurse who will do my cycler training to see if we can do it on a "dummy" and then let me only do the actual thing at home with me laying completely down flat in bed. I'm hoping that will do the trick, but the jury is definitely still out. I won't know until I actually do it and see if the pain comes back. Then I will have to decide if I need to look into back surgery or something to fix that issue so I can continue with PD or switch to home-hemo or in-center. But I'll cross that bridge once I get to it. I'll keep posting my journey as I go along. H really hope this doesn't discourage others. I thought about not posting any of this, but then I thought, well, someone may need to know about this and ask their neph about whether back issues that they have might be an issue. So i made the decision to post after all. I may delete the posts later, or do major editing so that it doesn't seem so bad. Thanks a bunch for the suggestion. ALL suggestions are very much welcome and I plan to go over each and every one of them with my PD nurse before I start cycler training.

[Jayhawker in reply to RonZone]

Please don’t delete the list. I is helpful for others. Keeping my fingers crossed 🤞 for you. I’ve got a recliner that reclines to a nearly horizontal position so is almost like being in bed. Too bad the chairs in the training centers don’t do that.

Jayhawker

[RonZone in reply to Jayhawker]

Oh ok boss, I won't delete. But I might edit to add an update that MY experience is just that, MY experience. The manual exchanges using 2000ml exposed a weakness in my back that I wasn't really aware of. That is my specific weakness and it will be very rare that someone else will have that same weakness. I wonder if I edit my post to add that to the top will it mess up the responses that are on it? Might talk to one of the admin to see if it will. Hope not.

Yeah, the chairs in the training centers are angled about 22 degrees, not even 45. And the chair I was using for manual exchanges at home is my regular office chair, not reclined at all. I had planned to work while doing the 4 hour "dwell" in the morning and afternoon. And I could work ok, until I tried to get up out of the chair and ended up on my hands and knees on the floor in extreme pain. And I would have to stand up to hang the fill bag etc, so it just was not working. The pain was just wiping me out so that all I wanted to do was lie down for the 4 hours so the pain would stop.

So two things. First, you most likely do not have my back issue that was revealed through all this. Second, yeah, you will need to work with your PD nurse to figure out the system that works best for you and don't let them bully you into something that doesn't My nurse saw how much I was hurting, but I had to be the one to "pull the plug" on doing manuals last monday morning, She never once suggested that I stop and that the pain and my manuals were connected. So I got a strong lesson in advocating for myself 101 ! I actually went to my Primary doc just to get his blessing on pulling the plug before addressing it with my pd nurse. They have a goal in mind, I'm sure and want to reach that goal, within the timeframe they have allotted for training, and the goal seemed to be more important than my pain (just the feeling I got). I mean I know a "trainer" is supposed to push you to achieve your goals, but dang, not to that extreme! So again, a lesson to everyone to advocate and stand up for yourself, even at the risk of being "uncompliant" Ha!

[drmind]

Wow, how scary is this. So sorry you had to have this experience. Amazing how this all came up. Hoping, praying. wishing that it all gets straightened out right away and you'll be pain free. Thanks so much for taking the time and energy to keep us posted.

[RonZone in reply to drmind]

I guess the biggest part of this was that I had no warning. I don't remember seeing a post where anyone has experienced this and the PD clinic never gave an indication that this could happen. My PD nurse had never heard of anyone experiencing this. So I was pretty un prepared for it and actually had to self diagnose to figure out for myself that my PD dialysis was at the root of the pain (vs having done something like picking up something too heavy or something that could have caused it and it was just a coincidence that it happened the first week of PD training). But when I stopped PD and the pain went away, I knew and was able to convince the PD nurse that PD was the cause. Now this has NOT diminished my positive outlook that once I'm on the cycler, PD is still the answer for me. That may not turn out to be the case, and I'll deal with it when if that happens. And I'll definitely keep folks posted.

[Bunkin]

It was similar with me only my pain was in the right side. Every time I did manual PD I was in so much pain I laid on the floor crying. I went back to surgeon several times and all he did was give me pain meds. Finally one day during training it hurt so bad I cried and the nurse said, that’s it, we’re getting you an order for a CT. Went right then. Turns out my catheter was not tacked down by surgeon so it had migrated to my right side. Had to go back in and surgery again to fix it. I still had bad days after that with manual but not as bad. Then I got Covid a month later, ended up in hospital where they used the cycler! It was lovely! So I switched from manual to cycler which started out well but later also caused pain. It was a different cycler than the one in the hospital. I was in the hospital a few times from different things and never had pain from their cycler. I was using the one Fresinius uses. I think the cycler will help you! I would definitely get a CT done just to make sure your catheter did not migrate

[RonZone in reply to Bunkin]

I remembered your story and thought about your situation as i was going through this. The pain I experienced isn't what I would call "drain pain". It did not happen during fill, or during drain, and wasn't directly connected to the exchange experience. It happened when I would get out of a chair (any time of day or evening) or when i got out of my car, and at a few other times totally not related to dialysis. My regular doc and the doc at the hospital both say it's connected to a nerve in my back. I'm guessing the PD solution is putting pressure on that part of my back since it all goes to the bottom of my peritoneal cavity when I'm sitting and standing. The idea going forward is that once I'm on the cycler and lying down, the pressure from the fluid will be spread out and not put pressure on that one spot so much, and thus not cause the pain. That's the current thinking and plan. I think the idea of the CT is a good one and will push to make that happen. Though in my case, my pain may not have anything to do with the position of the catheter, but rather just an issue with my back that was discovered during this process. Everybody's experience is different. Mine included. Deal with it as it comes!

[horsie63]

Holy cow Ron. I have an SI joint injury from a car accident in 2017...I wonder if it will kick up if/when I do manual PD. It's pretty well under control as long as I don't do too much standing and then it just aches. I'm glad you are documenting all this so I know what to look out for. I hope the cycler solves the issue.

[RonZone in reply to horsie63]

YES. The one thing I've learned from all this is the EVERYONE's experience is different. DO NOT think that cause this happened to me, that it will happen to you, but do talk with your doc about this so you are somewhat prepared. There's no way to be totally prepared for all of this, but just to know about some of it helps us be able to deal with it if and when something similar happens. In other words, always have a place "B". Anytime you mess with mother nature, she's likely to throw a curve at cha. And if that happens, we just back up, reassess and keep on swinging with new information in tact. I will definitely post how the cycler experience goes. I'm hoping it will go better than the manual experience and all will be good. But if not, that's cool. I'll just take it from there. Please don't let this discourage you, only inform you.

[horsie63]

I always have plan B and sometimes plan C. Working as an internal auditor has just reinforced my "just in case" mentality. 😀 Seems like my whole life has been an exercise in just in case. Sometimes it's best to dodge and move in another direction. Thanks again.

[RonZone in reply to horsie63]

You are a very smart cookie. Wish I had been that smart over the years I think you are going to do just fine with all of this. But do let me know what your doc says about that "SI" Joint (what is that exactly). You may want to request an MRI report of that to show to your neph and PD team once you get to that point so that they are aware.

[horsie63 in reply to RonZone]

It's in your lower back...mine causes left side pain occasionally. I ignored it for a couple of years, tried chiro, massage, etc. Had an MRI (not sure I ever want to do that again). Finally Jan 2020 I got a cortisone shot in the joint which helped tremendously.

Not so sure about the intelligence. I've done A LOT of stupid things in my life and sometimes I wonder how I'm still alive after some of them. But you get older, hopefully, and the lessons sink in.

spine-health.com/conditions...

[RonZone in reply to horsie63]

Ahh sounds like we're talking about a similar place in the back. I'll see if I can get more medical "detail" on mine in coming days so i know better what exactly is getting pissed off! So is a cortisone shot similar to what the hospital doc was going to give me with the "epidural" I may end up getting that anyway before all this is over. The doc said that usually that epidural only stops pain for a few months, then you have to have it again.

Hey, yeah, I figured you probably had a pretty colorful history Just guessing

[horsie63 in reply to RonZone]

The SI shot was not in the spinal area. Since I'm so small I cannot have epidurals due to the very limited space between disks during my pregnancies no doc wanted to risk paralyzing me....I fully agreed.

Yeah "colorful" is a good term. LOL.

[RonZone in reply to horsie63]

Ahh, gotcha on the SI shot. Yeah, paralysis would definitely NOT be a good thing! (Didn't now about that side effect for epidurals, will have to look into it).

[horsie63 in reply to RonZone]

well if you are a normal size person you probably don't have the same risk as I do. And epidural to me is something they thought about when I was pregnant...some women get them to block the pain of birthing but I ended up with C sections and was out for the whole thing.

I wonder if yours would have been like the cortisone shot I got. I had to have a driver for afterwards. Kind of like when they did my biopsy.

[RonZone in reply to horsie63]

Yeah, I think they way they described it it would be similar to your cortisone shot, though I didn't get far enough into it to get the specifics.

[RonZone in reply to horsie63]

Though it was going to be a needle put into my spine, similar to a real epidural, so that part might be different. Hopefully I'll never find out for sure!

[horsie63 in reply to RonZone]

Yep I stay as far away from needles in my spine as I can.

[rabbit01]

Sorry you're going through this. What do you think caused the pain? Have you had it before.

[RonZone in reply to rabbit01]

Hey, thanks. It's all good now, back to normal now that I stopped manual PD. No doc has actually said that they think that the pain was connected to the manual PD, but it doesn't take a rocket scientist to figure out that it started during my training week and stopped within three days of stopping manual PD. I can put 2 plus 2 together myself. Though my PD nurse did actually acknowledge they could be connected. The back pain epidural doc at the hospital said he didn't know enough about PD to make that call, and my Primary care doc sent me to the epidural doc and didn't think the two were related. I've not talked to him since the pain quit, but I think he will most likely agree with me about it all now. And my neph was "unavailable" when I called his office, so I had to go through the PD nurse to get an answer from him after the fact on Thursday and he agreed for me to stop manual PD and try the cycler. But they never actually said the pain was connected to manual PD (do you think they were avoiding taking responsibility? Most likely). So I have no real answer as to what caused the pain. The hospital epidural doc said it was linked to a possible disc issue in one of the vertebrae in my back. I'm going to make an appt with my regular doc for next week to see if he will help me figure it out. I have had small amounts of back pain over the years. I chalked it up to being 69 years old But NOTHING like I experienced this weekend. It was like someone took a red hot "electrified" fire poker and stuck it in my lower back every time i tried to get out of a chair. I'm very happy that experience is over. I almost shouted for joy when I tried sitting and getting up from a chair Thursday morning for the first time since last Saturday and was able to do so without pain. I really think that the PD fluid was putting a lot of pressure on a nerve in one of my disc in my back that was a "sleeping" issue, just waiting to be awakened. That nerve got really pissed off from the pressure and let me know about it in a very dramatic way to "get the hell off of me". So I did as it requested.

[rabbit01 in reply to RonZone]

Wow well I have certainly not heard that one as a reaction to doing manual PD but I guess anything is possible. I know when I first started I used to get a deep pain right in the depths of my shoulder. It felt like toothache it was that intense. The nurse said that was caused by a nerve in my stomach area and actually nothing to do with my shoulder despite the pain being there.

[RonZone in reply to rabbit01]

Interesting that you pointed out that shoulder pain. I probably should've mentioned this earlier in my posts, but my posts were long enough as they were My PD nurse had me do to a "flush" between the drain and the fill. What this did was to clear the fill line of air. The fill bag would push some fluid down the line and directly into the drain bag since my connector to my stomach was closed. That would cause any air in the fill line to be pushed into the drain back before I opened the connector to allow the fill to happen. What my PD nurse said was that if I left any air in the fill tube and it went into my peritoneal cavity, it would automatically "float" to the top and cause upward pressure which would be felt in the form of pain in my shoulder, very similar to what you are describing. Now I'm not saying that yours was caused by this, but it's interesting that what you described was exactly what she described would result from air getting in. I never asked, and she never said, but it seems to point in a similar direction that a nerve would be affected by that upward pressure, very similar to how my back nerve was affected by my downward pressure. And yeah, I definitely know "intense"! If yours was that bad, I definitely feel for you. I have to ask, what did you do to make the pain stop???

[SadMad in reply to RonZone]

Are you doing hemodialysis in a center now?

[RonZone in reply to SadMad]

Nope, not doing any dialysis till my cycler get's here and I get trained on it. My situation was not an emergency situation to start with. I'm actually doing fine, meaning I'm not sick nor do I have end stage symptoms like nausea, loss of appetite, etc. So I'm just in limbo till I get the cycler, get trained on it and then see if it creates the same issue I had with manual.

[RhenDutchess123]

Wow....I have had to do Manuel's from time to time and I hate it...its so much strain on my lower back....Not sure how many liters they are having you do , but they can lower that amount to a more comfortable amount for you , but may require more exchanges...exp...instead of 4 cycles of 1900 ml each...it may be 6 cycles of 1200 ml each...The great thing about the Cycler is you can do it laying down sleeping instead of walking around full of solution all day....

The training on the Cycler won't take much time...you have learned the hard part already...the machine will walk you thru it....you hook up once and unhook once....and uf it becomes painful..you can stop it and have the Cycler do a drain....

Did they not offer you the Cycler to begin with ?

[RonZone in reply to RhenDutchess123]

Ahh, so do you have actual pain in your lower back doing manuals? Just curious if I'm the only one that this has happened to. Seems this exposed a weakness in my back that had been hiding. They had me doing 2000ml each exchange, 4 times a day starting last friday through when I quit monday morning. I'm really hoping my experience with the cycler goes easier. I can take a little pain, but that was over the top stuff. That's good to know that I can do more cycles with less fluid. I'll ask my PD nurse about that. Great suggestion! They wanted me to be very familiar with doing manuals before I started on the cycler. They had planned for me to do a month of 4 a days manually to start with. I got in one weekend I flunked manuals.

[RhenDutchess123 in reply to RonZone]

Dang ....2000 a fill to walk around with is alot...I do 1700 ....from Cycler , works great...but 1700 and walking around is painful...cant imagine 2000 ml....hope it all works out, I would definitely ask for a smaller fill with more exchanges...

You didn't flunk...lol...your Cycler will just become your New BFF after this episode

[RonZone in reply to RhenDutchess123]

Yeah, I'm REALLY hoping me and that Amia get along. She better treat me gentle! And I'm going to go into it insisting on smaller amounts even it it takes more exchanges each night and longer total time on the machine. Thanks for the encouragement!

[TaffyTwoshoes27]

I'm confused why you were unable to see your nephrologist (I assume at his/her's offices) now that you are on PD? When I was on pd, I had to go to my nephrologist at his office once a month, PLUS see the same nephrologist as well as my Renal Nurse, Dietician, and sometimes the Social Worker at the clinic once a month.I was with Fresenius.

I don't recall doing manuals since it's been a long time, but you cannot do them in bed with just a little incline?

Have you discussed with your nephrologist what you will do if the cycler causes the same back pain?

I hope the cycler will do the trick.

[RonZone in reply to TaffyTwoshoes27]

When I called my Nephrologists office to see if I could come in and see him, they told me I was now a dialysis patient and I would have to go through the Fresenius dialysis center to see a Nephrologist. That was news to me. I'm going to follow up on that and see how that works and why it changed. I want to hear it from the doctor himself once I am allowed to see him at the dialysis clinic.

It's hard to explain what's going on with me, but I am not hurting when I'm doing the fill, or during the drain. I'm started doing that at the clinic while sitting in their chair, and then doing it at home sitting in my own office chair. The pain happened when I tried to stand up from the chair with the fluid inside of me. So even if I'm laying down when I get the fill, once I stand up with the fluid in me, it will trigger that nerve in my back to scream. I would not be able to do the entire drain, flush fill and dwell while in bed. If I did, I would be in bed all day and night and never be able to stand up to go to the bathroom or anything else.

As I mentioned, I've not been able to talk to my Nephrologist, only the PD nurse. And she has not said anything about what the plan is if the cycler also causes the pain. I'm hoping that since I will be completely drained during the day once I disconnect from the cycler, the pain will not persist since I won't be carrying around the fluid all day.

So yeah, I also hope the cycler will do the trick. We'll find out in a couple of weeks once I get started on it. Thanks for your concern.

[TaffyTwoshoes27 in reply to RonZone]

My experience was this: I got a nephrologist while in CKD. He referred me to surgeon to get catheter.The Fresenius (“FMC”) Clinic I was referred to did the manual training after exit site was healed.

My Nephrologist was the ONLY physician in charge of the FMC Clinic I was assigned to. So after I was on dialysis, I saw him at the FMC Clinic once a month. Usually, the Renal Nurse, Dietician and Social worker sat in on the appt. I also had another appt at the clinic once a month with my assigned Renal Nurse who would draw my blood and take vitals. The nephrology appt was scheduled for after my labs came back.

I changed clinics in 2020 b/c of Covid (my original FMC Clinic was Hemo AND PD patients, and the Hemodialysis folks were much more susceptible to contracting Covid).

The clinic I changed to (also FMC and only a mile from my original FMC clinic) was for Home Patients Only. In 2 years, I only saw 1 or 2 patients in the facility when I was there! I was assigned a new nephrologist in charge of the new clinic. I went once a month — in person — for blood draws and then when results came in, I did virtual appts with the nephrologist, her NP and my Renal Nurse.

I think FMC assigns only 1 nephrologist to take care of all patients at each clinic. So, I “lost” my first Nephrologist b/c I was no longer assigned to the FMC Clinic where he is in charge.

When I had a problem. I called the FMC clinic and spoke to my renal nurse. If that person cannot help, she has very close contact with the Nephrologist or his/here’s NP.

Does this help?

[RonZone in reply to TaffyTwoshoes27]

Yeah, your experience with the second clinic seems to be how it is arranged at mine. I just wasn't aware that you couldn't go see your Neph when you had a problem, that your only recourse was to go through the clinic Nurse. Not sure what happens if that nurse doesn't take a liking to you! That could cause some issues if she is your only portal to your doc for a given issue that crops up like mine, other than the ER. I'm a tad worried since she never considered that my PD was causing my back pain until I just stopped the PD myself. She saw how much pain I was in and just let it ride. That's a little worrisome that I have to go through her and can't talk with the doc except at those once a month meetings. I sure didn't want to hurt like that until that next Doc appt Sept 13th.

[TaffyTwoshoes27 in reply to RonZone]

I guess if I didn’t get an answer from the Renal Nurse, I would call the Nephrologist’s office. There was no written “protocol” for this.I was very disappointed when my first nephrologist told me I had a virus when I wasn’t feeling well. Then, I talked to his NP, who said a virus doesn’t last 2 weeks. I was vomiting and had constipation. The NP recommended a Fleet enema treatment (Yeah! Never had one of those before!) to address the constipation.

The directions indicate results should be realized in 1-2 hrs. 6 hrs later, I finally had a BM. Since I had been throwing up for several days, and now had a BM, I ended up in the hospital 3 days with an atrial fibrillation situation caused by low electrolytes. That could have been prevented had that first nephrologist I trusted would have been on top of the situation. He knew that around that time, I was having “issues” with my Renal Nurse at the clinic (his Pet nurse) and I guess he decided whose side he was on. Anyway, that was Sept 2019 and in Feb 2020, I changed clinics b/c of Covid.

It is VERY frustrating when one medical person says DO a Fleet enema, and another person in the same group says DON’T do a Fleet. It was the worst experience I had the whole time.

Also, the first nephrologist (just after getting on PD) ordered a CT scan of my abdomen. I was at the hospital outpatient facility on a Friday afternoon about 3:00 and wasn’t sure whether to have a CT with or without contrast (I was told NOT to have contrast while in CKD, but now I was on PD and didn’t know what to do!

There is a person at hospitals, a “Patient Rep”, you can ask the front desk to contact, who has the cell phone #s of the doctors. So, at 3:30-4:00 pm on a Friday afternoon, the Patient Rep calls my nephrologist’s cell phone —twice — and he NEVER returns her call. The last person in the Outpatient Dept. (the manager) said she would use the dye. Three days later I had hives all over the front and back of my entire torso. Then, trip to PCP.

The next appt with the nephrologist, he never apologized or said sh*t! He just said I must be allergic to iodine (never was before! Had several CT scans with dye!). Crap like that stressed me to the max! If they only knew HALF the stuff we go through with doctors, insurance, pharmacy, hospitals, financial stuff, nurses, etc., they’d be stressed too. Every Monday, I spend almost all day on the phone calling insurance ppl, making appointments, etc. This disease is definitely NOT for sissies (and don’t believe a Transplant magically solves all those problems!).

I understand your hesitation about who to call. The medical personnel don’t make it easy. But, I’ve never read about someone having so much back pain! I hope it will get better and will never come back!

Gird your loins! It can be a bumpy ride! 😩🙂😵‍💫

[RonZone in reply to TaffyTwoshoes27]

Well, not sure if it was your intended purpose, but your post DEFINITELY made me feel better about my situation. Man, you have been through the ringer. But you are right. I got a feeling my ride on this roller coaster is JUST beginning. And you, my friend, have made it much more bearable knowing I'm not on this roller coaster alone. And yeah, I have no ideas that getting a transplant will make all of it miraculously disappear. I'm sure it will bring on it's own set of issues and pain of whatever sort. I'm going to work on my PD nurse and see if I can make some progress getting on her good side

[TaffyTwoshoes27 in reply to RonZone]

Well, thank you for the kind compliment.

I used to give my renal nurse at the clinic little gifts during Valentine's Day or Easter or Christmas.....whatever. Even if it was just a card. I found out her birthday and gave her very small gift to keep in her good graces.

When I found out that there was a lot of dissension at the clinic because she was the Pet of the nephrologist over that clinic, and she came and went as she wanted and was on the phone all day with her husband and Friends and got away with things other employees couldn't, my impression of her waned and we had conflicts after that.

I always hated in the corporate or private sector while I was working when certain employees got away with things that other employees would never get away with. And, usually the favoritism wasn't as a result of better work ethic or loyalty!

I still deal with issues with my transplant hospital, my transplant coordinator and other issues with the hospital. After the transplant, I didn't realize that I couldn't go out in the sun without sunscreen (Hang Ten and other companies also make clothing that refracts the UV or SPF rays from the body. However, wearing long sleeves, even though the shirts are rather thin material, is hot!)

And then, the nephrologists and other physicians at the transplant hospital recommend that you also have a Dermatologist after the transplant to watch out for skin cancer from being in the sun because of the immunosuppressant medication making you more susceptible to skin cancer.

Another thing I learned about 6 months post transplant was that you will need to have a private nephrologist about a year after your transplant and are no longer under the transplant hospital's nephrologists. I found out that the nephrologist I was seeing before the transplant did not see patients that were transplanted. So, the other day, I called my first nephrologist (who diagnosed my CKD, and used to know my sister from the nearby hospital. My sister is a Chaplin at that hospital.) I asked his receptionist if he would see me again post-transplant. Yesterday, to my surprise, the nephrologist's receptionist called and said that he would be glad to see me after I am released from the transplant hospital.

I won't be going through the FMC Clinic any longer, so there won't be a problem with seeing his "Pet" renal nurse. She's in a different building. I'll be having monthly or bi-monthly lab work through an outside lab, such as LabCorp or Quest.

Right now, I'm on about 20 medications during the day. I get the medication through the transplant hospital's onsite Walgreens that handles specialty drugs like immunosuppressants, etc. They are very good about calling and letting me know when medication is due to be refilled. Thank God because keeping up with 20 medications is more than I want to handle.

So, you might want to find out now if you're nephrologist will see you once you get transplanted.

Good luck and hang in there! Please feel free to ask any questions as I stay in the house a lot lately with covid and monkey pox out there! LOL

[RonZone in reply to TaffyTwoshoes27]

Wow, that's a LOT of great info. Thanks! I know that the life of having a transplant is no walk in the park either. Gosh 20 meds! That takes a while to swallow. Really glad you will have a new Neph that you know and like.

I might try giving my PD nurse a little gift occasionally and see if that brightens her mood and gains me some graces Since we've only known each other a couple weeks, we're still getting used to each other. But she definitely wants things done on "her time", "her way" at this point. I suppose that's her job is to keep folks minding their p's and q's but I just felt she should've been a tad more sensitive to the pain I was obviously in. We'll see if she mellows in coming days as I start on the cycler. I've not been around the clinic enough to know if she's anyone's "pet" like the nurse from your experience. And there's more than one Neph connected to that Fresenius clinic, but I have not been able to find out if it's one more or two more and who they are and if I might see one of them at some point. But I will find out over time. Don't want to be too pushy my first month and seeming ungrateful and disagreeable. I'll save it for my second month Ha!

And yeah, I'm pretty much a homebody these days as well. Don't go out much except to take care of my 94 year old dad at his house and restock supplies.

[Blackmidnight]

How are you doing?

[RonZone in reply to Blackmidnight]

Doing fine since I stopped doing Manual PD last monday. I'm just in limbo waiting for cycler supplies and cycler to arrive so I can start that training to see if it recreates the back issues I had with manuals. I'm hoping since I won't be carrying that fluid around all day the nerve in my back won't scream at me and take me to my knees every time I try to get out of a chair! I'll be lying down during cycler PD at night which should spread the weight of the fluid out which also might make a difference instead of it all sitting like a lead balloon in the bottom of my abdomen pushing against my back. Thanks for asking!

[RhenDutchess123 in reply to RonZone]

While you are waiting for the Cycler...try doing some gentle back strengthening exercises so you can give it your best shot

[RonZone in reply to RhenDutchess123]

I have a plan to visit a physical therapist next week. I've simply got to much to do at work this week to take more time off. I'm hoping the physical therapist can help me figure out what's going on cause no one else has been able/willing to help me figure it out. Not sure who I need to see exactly. I'm going to also see my Primary Care doc as well to see if there's some kind of back specialist in my area that can help me figure out what is going on and what to do about it. The PD nurse is obviously not trained to handle this specific issue and I won't be able to see my Neph till Sept 13, and to be honest, I don't think he's going to be the one to help me isolate this issue and find a solution to resolving the backspin/pd issue. This will probably take some time to sort out and find a solution, if there is one, so I can continue PD. Really appreciate your interest!

[RhenDutchess123 in reply to RonZone]

Sounds like Siatica Nerve...but could be a number of things...the problem with kidney disease is it weakens our muscular and skeleton structures...and other than to wait for them to repair themselves when they get damaged , we can't do alot because there are so many drugs and therapies that we can't take...I think going to a therapist is a smart idea..he may be able to teach you a few "gentle" exercises that can help strengthen them so they have more resistance ...swimming is a good one, but with a PD catheter that gets limited....I bought a stationary bicycle that helps keep my lower back stronger and some exercises that help too....so sad to hear about you dealing with this on top of learning Dialysis...They also make belts you can strap around your waist to help hold your muscles in line while they heal,... but as always ...consult your therapist and/ or Doctors who are treating you

I do know I was always told to not use heat...that to use cold packs..heat just makes the inflammation worsen.

[RonZone in reply to RhenDutchess123]

Not use heat....... Well crap Switching to cold (yet another reason to sit around freezing!

[RhenDutchess123 in reply to RonZone]

Lol...only fir about 5 to 10 minutes at a time

[RonZone in reply to RhenDutchess123]

oh ok, that sounds more tolerable

[Blackmidnight]

Ron, I use a cart to take the cycler bags to the machine.

[RonZone in reply to Blackmidnight]

Hey, it's not carrying the fluid in the boxes that hurt my back, it's the carrying of the 2000ml INSIDE of me all day during the "dwell" that hurt my back (from the inside)... sorry if I didn't make that clear.

[SadMad]

This disease is horrible. I have home inspection this Thursday and consultation appointment with surgeon on the 12th. I am interested in the overnight PD. I am at the point now that my fistula arm causes excruciating pain on dialysis and that I can't even make it thru a full session. I told my doctor that I wanted to be put on a 3 hour schedule hoping I can tolerate that long. I am at the point that quality of life is more important to me than quantity. If I fail to pass the inspection, I want a chest catheter long term or I will just stop altogether. This fistula has not been worth the pain. The graft kept clotting. This may just be my case. My lower arms could not be used so the upper arms have been and I feel are just not working out.

Ron, I am so sorry you are going through this and hope the night PD works for you Was there a reason you did not do the overnight PD in the first place? I feel for you.

I am no longer the same person I was before hemodialysis and have been pretty much miserable after the chest catheter was removed and needles put in. I feel great otherwise even if I miss a day of treatment. I use furosemide to control fluid build up and end up under my dry weight at times.

God bless you Ron and all who have this terrible disease.

[RonZone in reply to SadMad]

And God bless you too in all that you are experiencing. OH, I wasn't given the option of doing nighttime cycler PD to start with, they wanted me to have the manual PD process down pat in case I needed to do a manual if the power went out, the machine failed, etc.

[SadMad]

Are you on the transplant list yet Ron? 2-

[RonZone in reply to SadMad]

Nope, not yet.

[RhenDutchess123 in reply to RonZone]

How are you doing...havent heard any updates lately...

[RonZone in reply to RhenDutchess123]

I'm still in a holding pattern after stopping PD three weeks ago. I finally have an appt with my Neph tomorrow and an appt with my PD catheter surgeon on Sept 20 to see if they can find work arounds for my back pain cased by the PD solution that I experienced during manuals. I'll do a post if my Neph has any good ideas. Thanks for checking in!

[RhenDutchess123]

are they keeping your Cathater flushed ?

[RonZone in reply to RhenDutchess123]

I do that myself every Sunday. Like yesterday, I hung a bag of solution and let 500-600ml go in, then drained it right back out, then let another 500-600 go in, then immediately drained it back out. That keeps my peritoneal cavity and the catheter free of Fibrin till I begin work on the cycler, which hopefully will be in a couple of weeks or so, not sure, depends on what the docs say this week and next. When there's no "dwell time" then I don't experience the back issues that I was having when I was doing the 4 hour dwells 4 times a day and then leaving the 2000ml of solution in all night.

[RhenDutchess123]

Good job !...Just thought i would mention that