any questions I should ask before surgery ... - Kidney Dialysis

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any questions I should ask before surgery for pd catheter .

Beachgirl32 profile image
63 Replies

We’ll look like the time has come for me to start dialysis. I have a consultation with a surgeon on Tuesday to talk about surgery for PD Catheter  . Is there any questions I should ask I have a list but want to see if any of you who have gone through this can suggest questions I may have not thought of .

I know I help my mom 21 years ago but I don’t recall everything . That day was not good my mom had her Port put in and my dad had a heart attack and died that night so you can see why I would not remember all the questions we ask then.

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Beachgirl32 profile image
Beachgirl32
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63 Replies

I am sorry for your loss, Beachgirl. There are two methods for inserting the PD cath. I was awake and assisted in the sense that I would let the doc know when I felt the tubing, which was a cue to give ne more of an injection to numb the discomfort. The doc used ultrasound to guide placement. It took a couple of hours and about a half hour recovery. It was an easy process and recovery of the belly area takes a few weeks. If you have PKD, there is a chance you have weak connective tissue and may end up having a hernia at some point while on dialysis. Best of luck with everything.😊

Beachgirl32 profile image
Beachgirl32 in reply to

thank you for replying. Yes I have pkd. I do recall my cousin had to stop pd and go on hemo cause of a hernia.Hopefully I will be ok with that. I did not know there was two ways for the surgery so thanks for that .

horsie63 profile image
horsie63

I’m in your same place but my consult is Wed. Davila has a pretty good explanation on their website….do a google search for pd surgery.

Beachgirl32 profile image
Beachgirl32 in reply to horsie63

thanks look like we will be going through this pd journey together

horsie63 profile image
horsie63 in reply to Beachgirl32

so much better than alone 😀 I’ve been through all my stuff and pretty sure i have storage space so that’s one less worry. Have you picked a dialysis center? Have you had the home access review?

If I go with the closer one I’m not sure if I have to use their neph or if mine has access and if not do I stay with him and use the place an hour away or the thirty min one?

I have an appt with my neph on Tuesday and I have a ton of questions w egg itten down. I almost feel sorry for him but not really as I need to know these things.

I’m waiting for a call from the center close to me so I can schedule a visit with their PD nurse but have to wait out all the holiday days off and oh my is it frustrating.

Beachgirl32 profile image
Beachgirl32 in reply to horsie63

yes I had a home accesment I do have a spare room where I can store all my Baxter boxes .

The davita center I will go to for training is not that far from me about seven minutes. My nephrologist is the head person at the davita center so that is good for me. I know they told me if I get a transplant I have to use the transplant nephrologist I hate the thought of losing my cause he is really good hopefully the others will be just as good. Are you using a davita or a Fresenius center . I have a cart on wheel I have a good supply of Clorox wipes and paper towels , I will have to get the antibiotic soap they said to use. I found some tank top that have a place to secure the port. It going to be a new journey and yes I’m a little scare because I don’t want to do something wrong but talking to lots of people help. But it doesn’t take away the worry completely.

horsie63 profile image
horsie63 in reply to Beachgirl32

the Davila center only does in center hemp. The other closet is listed as independent on the Medicare site and I’m waiting for a call from their PD nurse.

I’m pretty much stuck with them or driving an hour to my neph center. Have to wait out the holiday crap before I can start to get answers.

Blackmidnight profile image
Blackmidnight in reply to Beachgirl32

Once I stated home PD, with Fresenius they set me up with a calendar of delivery order dates and a delivery date. They also call you to remind you to place your order. I receive the solutions as well as all the soap, gauze, tape, needles, heparin, the cream to clean the exit site, plus everything needed to the manuals. If you want to know what else, it is a long list.

Blackmidnight profile image
Blackmidnight in reply to horsie63

My neph was the one that referred me and works with the center. But there is a neph there that I alternate monthly with between mine and him .

Darlenia profile image
Darlenia

Our nephrologist recommended that we get a list of surgeons from our soon-to-be PD nurse. As she handed us the list, she quietly tapped on the name of one and said that particular surgeon was the very best...to wait until he was available. So we did that. Later, she told us how some caths aren't located in an ideal place - she had one patient who had a hard time cleaning hers, another one that had trouble bending over and so on. My husband's surgeon put him through all sorts of contortions to find the perfect spot for him and marked the location carefully. So, if you have the opportunity, check in with the front line nurse who has seen and worked with the outcomes. My husband's results were great.

Beachgirl32 profile image
Beachgirl32 in reply to Darlenia

I been told the surgeon I’m going to us the best and has a great bedside manner . Did the surgeon put your husband through the contortionist at the consultation?

Darlenia profile image
Darlenia in reply to Beachgirl32

Yes. That was done during the consultation with the surgeon. I think the surgery was the next day or so.

horsie63 profile image
horsie63 in reply to Darlenia

I plan on wearing the work khakis I normally wear and making sure that works. I have years end inventory the next day so they’ll have work around my schedule.

horsie63 profile image
horsie63 in reply to Darlenia

unfortunately living in the middle of nowhere I’m limited on choices but I’ll certainly grill him on his B procedure and results… if I don’t like the answers I’ll ask for another one.

Darlenia profile image
Darlenia in reply to horsie63

After the site of your PD cath is marked, I highly suggest that you sit down, bend over, check where the waistband might land, pretend to wash around it, etc., to see the outcome. You'll want to make sure that it's located just right for you. Nephrologists should have people visit their preferred dialysis center for a look/see and a discussion with the staff - but it doesn't always happen. With a little preparation of their own, though, I think everyone on this thread facing this procedure will do okay.

horsie63 profile image
horsie63 in reply to Darlenia

I’m going to print out your recommendations to tak with me. I’m not very happy with my neph scheduling this surgeon apt before I’ve had my appt with the neph.

RonZone profile image
RonZone in reply to horsie63

Hey, see my comments below and let me know if I added anything you didn't already know. You've been taking notes all along, so most of it you probably already know. Again, don't feel like you have to rush into all this, especially if you still feel ok. I'm STILL not on full time dialysis because of all the issues that came up, and I had my catheter put in like in what, June? And I still feel ok. Stopping to have that hernia repaired when I did was a very good decision. MUCH less discomfort now. I'm ready to start PD back up once I meet with my nurse again and discuss my schedule going from here, though I think I could probably put it off for another few months, the way I feel, but if I did that, they said they would have to drop me as a patient for that time and pick up my cycler, and I would have to be on my own till I decided to start back up again. Not sure what hoops I'd have to jump through to get back in again.

horsie63 profile image
horsie63 in reply to RonZone

I feel okay still… the last couple of days my eyes have been swollen and I’m just so very tired and get out of breath easily so we’ll see what happens tomorrow at my neph appt.

RonZone profile image
RonZone in reply to horsie63

gotcha. This is life changing (though very doable), so start the process when you are ready.

Jamok profile image
Jamok in reply to horsie63

Hi Horsie,

What is your gfr?

horsie63 profile image
horsie63 in reply to Jamok

13 as of the Dec 21 labs.

Aloha49 profile image
Aloha49

I found the PD catheter worked for me as long as I followed the sanitizing and prep process exactly. I used it for 6 months prior to transplant and did not get an infection. Rely on your dialysis center to guide you and check in with them after the procedure. I got all my supplies free and on time from Baxter. All the best, BB

Beachgirl32 profile image
Beachgirl32 in reply to Aloha49

thank you so happy that you got a transplant hopefully I will only be on pd for a short time .

RonZone profile image
RonZone

Ok, gonna throw in my two cents here just a tad late. (better late than never, right?) First off, the surgery isn't bad. Just be prepared to take it easy for a few days and not plan on doing much of anything except basic eating drinking etc. Sleeping will be a bit of a hassle since you can't flop around like normal.

For my experience, as I posted right after it happened, I ended up in the ER in the middle of the night getting a foley catheter put in cause my system didn't "wake up" after the full blown put me out like a light anesthesia version I had (not the local version). But that's probably cause I'm a lazy ole goat. I hope your system will be kinder to you and start working right away. Just be prepared in case it doesn't :-) When I had my hernia surgery, I had a Foley put in during the operation so I didn't have to experience another ER visit.

As for hernia's. I wish my surgeon had checked me more thoroughly for possible hernia issues before he put in the PD catheter (Same surgeon did both the PD catheter and the hernia repair). Not sure if he could've done both at the same time, not sure. I didn't realize that PKD folks had a higher chance of hernia issues, but it seems to be the case. Since I still had kidney function remaining, I was able to come off PD, get the hernia repaired, and have plenty of time for it to heal (going on 8 weeks now) before starting PD back up again. I still don't feel bad and don't feel like I need dialysis, but I guess I'll start back this week based on labs and numbers and all that. Guess it's been good that I started a tad early just so I got all these issues taken care of before I actually definitely needed dialysis.

The surgeon wanted to put the PD catheter in, AND create the fistula in my arm during the same surgery, but I decided to wait on the fistula for now and give PD my full attention. That will be a decision you will also make. They like to have the fistula put in so it has a chance to "mature" in case it's needed for whatever reason. Like if I was in dire need of dialysis during the wait time after my hernia repair, I had no secondary method for dialysis, so I took a risk not having it put in at the same time as my PD catheter. YOU will make the decision for yourself as to whether you will have both done at the same time.

You mentioned Baxter supplies. Which cycler are you looking at? Tell me again about your work situation. Will need have the flexibility you will need with work during the training and the month you will need to do manual exchanges before starting on the cycler. The manual changes aren't hard once you don't feel like you're going to kill yourself by messing something up by contaminating yourself during connecting process. That took me about the first 4 days of training to feel comfortable doing that. But it is very time consuming at first since you will do it very slowly until you get the steps down. I have a complete cheat sheet of instructions that I developed if you would like to see mine just as a basis for creating your own. I follow it to a "t" like a recipe while doing the "flushes" required while waiting to start PD back again. You will also do flushes once a week after the first week, while you are in the healing stage after your surgery before you start manual exchange training. A flush is where you put a small amount of fluid in (say 300-500ml) and then drain it right back out again. This keeps your tube free from fibrin buildup (fibrin are clumps of protein that develop in the peritoneal cavity-you'll see small pieces floating around in the fluid you drain out sometimes).

Also, since my Fresenius center normally uses cyclers other than Baxter, the first time I went in to my center after my surgery and the nurse did an exam of my exit site, she also had to swap out the "connector" that's attached to my PD catheter than connects me to the manual bag tubes and the cycler. She had to take the one off that the surgeon had put on, and put on the Baxter equivalent. Not sure why the surgeon didn't just put the Baxter one on to start with. Something to ask your surgeon. Also, when when I went in for that first exam, and for the first "flush" by the PD nurse, I was amazed at she basically used surgery room techniques, keeping everything sterile during the exam and during the flush and catheter connector exchange. She demonstrated the difference between the "sterile" technique she would be using during those initial visits, vs the "clean" technique you will use during flushes and exchanges. And when i say clean, they want you to be super clean during those times when you change your own bandage and during exchanges. They teach you how to do "extreme hand washing" and exit site care. You'll be a qualified nurse by the time you're through with your training!

Manual exchanges. I asked my nurse to start with a reduced amount of PD fluid to start with using my manual exchange training week (500 the first day) then she bumped it up each day until I was doing the full 2000 4 times a day by the weekend. That was so I could get used to the feeling of having the fluid inside me. You might ask if they will do that for you. I started manual exchange training the 4th week after my surgery, doing "flushes" the other weeks up till then.

Ok, so I've either overwhelmed you with all this, OR given you information you can use. Not sure which. I can add more after this if you're still reading at this point :-)

RhenDutchess123 profile image
RhenDutchess123 in reply to RonZone

Boy...they really trained you...I had my cathater placed on Feb 4th....went back for 2 weeks to change bandage and flush port, learning to wash hands and exit care.....spent one week on Manuel's then one week for Cycler training...went home with my Cycler on Mar 1st and began my own Dialysis at home....so less than one month total

RonZone profile image
RonZone in reply to RhenDutchess123

Yeah, I hear some folks say they did the speedy version like you did, others go through a month of manuals like they wanted me to do. Not sure why, just their "policy". And they do more extreme hand washing than what I've seen in youtube tutorials by the cycler company and people who have posted videos about their sanitizing process for PD. They even have me clean my entire cycler before each use with bleach water, as well as the table (including the legs) that the cycler sits on.

RhenDutchess123 profile image
RhenDutchess123 in reply to RonZone

While it is very important to have clean hands and surfaces...PD is a "clean" procedure, not "sterile"...I make sure to clip my nails short and wash my hands with antibacterial soap...while mouthing ABC's once....then I keep a bottle of hand sanitizer handy and apply it often while setting up...connecting and disconnecting and caring for my exit site...and I always use lotion afterwards...dry cracked skin will hold bacteria....I wipe down my Cycler with an Alcohol Wipe each day (I was told to never use bleach on the bladders in the Cycler) and wipe down my cart about once a week

RonZone profile image
RonZone in reply to RhenDutchess123

Bleach on the bladders. That could be an issue for sure ;-) I don't actually use bleach on the part where the cassette goes, just the outside and screen and inside where the warming bag goes. And yeah, cleaning the table and legs every day seems a bit overkill. I may drop back to just wiping down the top where I might sit stuff. Not sure how germs could get from the legs and climb up onto the table surface. When I was doing manuals, and now while I'm doing "flushes" each week before starting on the cycler again, they told me to wipe down the iv pole, legs included each time. Again, not sure how germs could crawl from the stand legs at the bottom all the way up to where the bag hangs, but that's what they said to do. As for hand washing. Using anti-bacterial soap that they furnish, they said to count to 10 at regular speed for each step while washing for each hand: palms, top of left hand, top of left fingers, top of right hand, top of right fingers, between fingers on left hand, between fingers on right hand, each individual finger on left hand, each individual finger on right hand, left hand nails using a scratching motion on palm to push soap under short cut fingernails, right hand nails, left wrist, then right wrist. Then rinse without touching sink, sink faucet. Dry hands with paper towel (never wiping from arm down). Turn water off with paper towel. Then not touch anything except PD transit set connector from exit site and connector coming from cycler (or manual bag). It's that "connection" point where both are open and exposed where nothing needs to touch the ends of those connection points, not even your breath, so a mask is worn for the whole connection part of the procedure, including during the hand washing. Nurse told the story of a guy who got an infection cause he forgot to mask up and whatever spice he ate for dinner, he breathed into the tube when it was open and he got a bad infection from it. She said most folks are pretty diligent for the first two years, then they start getting lax about the procedure and that's when they get in trouble.

RhenDutchess123 profile image
RhenDutchess123 in reply to RonZone

UpYeah...I can see people slacking off...I work really hard to do exactly like they taught me...and I always have on a mask whenever I hook up my bags or open my transit set...and bugs can crawl up poles...but once you have the connection made...they really can get inside....I just do all I can to keep my connections wiped before I open...and do it quickly...but to think I am going to get rid of every germ would drive me nutz...lol...and very few germs would make it past the iodine plug in the mini cap..Amia really has built a lot of safeguards into their system...we just do the best we can

RhenDutchess123 profile image
RhenDutchess123

I tried all the different belts to secure my transit set ...and none if them worked for me...they kept sliding around my waist...I just tape mine down...My exit site is on my left...I put a small piece of tape where the tubing comes out of my bandage...run the tubing across my belly to the right...coil the tubing over and tape it again....stays nice and secure...which is what you want so it doesnt get tugged...which can lead to sores and infection...I use the blue tape so it doesn't itch

RonZone profile image
RonZone in reply to RhenDutchess123

Same here. I tried the PD belt. Kept getting messed up at night especially, so back to taping I went as well.

RonZone profile image
RonZone

Bugs can crawl up poles? Who knew :-)

RhenDutchess123 profile image
RhenDutchess123 in reply to RonZone

Yep they can....Our bodies are naturally covered with them...and alot are good for us...they eat the bad ones..

You can clean tge legs real good...but then they crawl up from the floor again...you just have to work quick...lol....Thats why we have to keep our Protien Levels up...so we can fight off infections if one gets in and starts breeding

horsie63 profile image
horsie63

we’ll I got a call from the dialysis center and will meet them Wednesday after my surgery consult. She said a home assessment isn’t necessary just running water and somewhere I can shut the he door. They got a good review on the Medicare site so who knows. Gonna have to wait and see.

Beachgirl32 profile image
Beachgirl32 in reply to horsie63

Well that good you don’t have to do home assessment one less thing to worry about. suprised you don’t have to have a home assessment I know when they did my they made sure I had place for storage and bathroom close enough and if any pets they can’t be in room. My nephrologist said I wouldn’t have any problems he said he only has know one person not approved cause they lived in there van . I had my back in September the nephrologist was the one who order it.she did tell me I could do shipment twice a month if I don’t have room for full shipment .

horsie63 profile image
horsie63

since I still don’t know what all gets shipped and the dimensions I can only guess I have enough room. I wish they’d put all this logistical stuff on the web… like you get 15 boxes that at 10 by 12 by 13… something like that.

Beachgirl32 profile image
Beachgirl32 in reply to horsie63

I was told it about 30 boxes maybe this picture will give you an idea

Pd dialysis supplies
horsie63 profile image
horsie63

holy crap that’s a lot. I’ve heard some can be taken out of the boxes to save room.

horsie63 profile image
horsie63

now I’m exhausted cleaned out one closet and tho drawers … I had a lot of crap. Still not sure it’ll all fit. Still want to get a cart for the drain bag but need to see the size first. The closet isn’t in my bedroom so there will be moving bixes around but I can get my husband to help with that.

Jamok profile image
Jamok

Hi Beachgirl,

What were the symptoms/indications it was time to start dialysis?

Beachgirl32 profile image
Beachgirl32 in reply to Jamok

in my head I’m feel fine . Lab work show otherwise .

I do get short of breath after I walk never did before . My eGFR is at an 8 now I’m doing pd dialysis so doc want me to be clear headed to learn before toxins built up to give me brain fog . I don’t have the energy like I use to . But I admit I was getting use to it it was my new normal . Other have notice I get out of Breath more. I never before took naps now I fall asleep in mid afternoon if I sit for a bit.

Jamok profile image
Jamok in reply to Beachgirl32

I’m also at eight GFR and thought for sure my nephrologist was going to want me to start dialysis but because I’m not having any symptoms(no swelling , no nausea)and my phosphorus and potassium are ok he wants me to hold off. Perhaps he’s taking into consideration that I do have 3 1/2 years wait time in at the transplant center, so the thought is that I may get a transplant before I would need to go on dialysis. I’m on hold currently until I can get another CT scan of my lungs where they saw a 3 mm nodule.

Could you be anemic and could that be causing the shortness of breath versus actual kidney failure?

Beachgirl32 profile image
Beachgirl32 in reply to Jamok

I am anemic and phourous has been high it all right last labs but it kept my levels . Hopefully you will get a kidney before dialysis. I have only been on waitlist going on two years in may . Prayers that the nodule on your lung is nothing to worry about .

Jamok profile image
Jamok in reply to Beachgirl32

thank you so much for your prayers! I will pray for you as well that you get a kidney sooner than expected.

Beachgirl32 profile image
Beachgirl32

ok I went to surgeon today I’m schedule for surgery jan 20 first in the morning I have to be at hospital at 5:30. Only thing he was worried about sine I had endometriosis so bad and they did laser surgery if that will cause a problem but he won’t know until he get in there but since I haven’t had any problems since after hysterectomy 20 something years ago he think I will be ok so hopefully it will work . I really l I’me the surgeon and he did have a great bed side manner which is important to me a lot surgeon I fine to be arrogant and he was not he even took the comment when I told him my kidney doc said he was the best at doing this he said I don’t know about that a lot of other surgeons that do this are just as good . A lot of surgeon would have said yes I am . He also said it depend how big my polycystic kidney are he will look at the scans I had at the transplant center but he wouldn’t think the kidney doctor would of refer me if he thought my kidneys were to big. It will take about three weeks to heal. He said that they probably will start me training before that .

horsie63 profile image
horsie63 in reply to Beachgirl32

Yesterday was different. I saw the surgeon and his nurse, both seemed very nice. He answered my questions...even the rude one where I asked how many of these he's done. His handshake was nice and dry..nothing worse than a doctor with clammy hands. So my surgery will be Jan 12 at 830 in the morning. Of course we have to be there at 630. He said it's laproscopic and since I'm so small and have had 2 csections he may have to clear out scar tissue and depending on that is where the placement will be. I did wear my work clothes and he said that should work okay.

So after I saw the surgeon I had to go do the Pre Op anesthesia assessment which took a bloody hour mostly to go over my health and listen to my heart.

After that I spent an hour trying to find the damn dialysis clinic. It's in the middle of nowhere but right near the SSAdmin office so I I need to talk to them I know where they are cause I drove past three time. This is not a big clinic. Not a Davita or a Fresnius either, it's independent LLP. They use the Baxter Homechoice Claria and not the Amia. Boy we went around and around about my wanting the Amia cause it uses voice prompts and with my low vision that would be useful. Of course no one within an hours drive of me uses the Amia. Well I'll keep pushing.

So surgery on the 12th. Cleaning on Jan 19, Jan 25 and Feb 1 and NO SHOWERS during that time. Nor will they start training so that may start mid Feb then hopefully I'm on my own by March just in time for Casino Cash Counts.

Did talk to my boss after and he was cool with the time I need off and said I could work from home as needed.

Oh and I spent well over an hour on the phone today with Aetna, my primary insurance to try and figure out if and when I have to get Medicare. So according to them Aetna will be primary until Nov 2024 then Medicare takes over and Aetna becomes secondary. This is assuming I keep my job. What a pain in the ass this has become. At least with the transplant I fully expected to sit back and wait until a deceased donor was available.

Beachgirl32 profile image
Beachgirl32 in reply to horsie63

Well you are going to go through your surgery before me prayers will be lifted for you. I’m hoping to get the Amia machine too the pd nurse said she would put I. For the request but request aren’t always met. Yea just keep pushing for it. Glad you will be able to work from home.Prayers sent 🙏🙏🙏🙏

horsie63 profile image
horsie63 in reply to Beachgirl32

the surgery went well…seemed it was no time and I was in recovery then back to room to get dressed to go home. That was a clown show with my husband trying to put my clothes on and I kept fallling back and hitting the wall with my head. Eventually got me into the arm chair and finished. We got there at 630 and out by 1130.

They gave me OxyContin but I’ve only taken one cause the drive home hurt. So I’m only taking Tylenol. What really still hurts is my throat cause they use breathing tubes.

Been sleeping in my recliner cause the bed is kind of high and oh boy did that hurt. They put a waterproof cover and said I could shower but I don’t want to take a chance and I doubt I could get into and out of the tub.

I think after resting this weekend I’ll be okay to work from home next week. I have been trying to get up and move.

Beachgirl32 profile image
Beachgirl32 in reply to horsie63

glad all went well with you I have to be at hospital at 5:30 surgery at 7:30 so hopefully I’m not in there long either . I’m suprised they told you that you could shower that one thing they said I could not do after I could sponge bath but not shower. My bed is pretty high too so thanks for letting me know that I may end up in my recliner .I probably will just take Tylenol cause pain pill make me nauseous .

I know we have to get the catheter flush in so many days. Did they tell you when you will be starting training?

horsie63 profile image
horsie63 in reply to Beachgirl32

no on training but I go for my dressing change on the 19th and again on the 25th then see the surgeon on the 30th. I’m hoping to start training in Feb and be done and doing the cycled by early March. But I’ll ask all that on the 19th.

I was told I could drive for 24 hours but there’s no way I’m driving anywhere. That’s why I’m working from home next week.

RhenDutchess123 profile image
RhenDutchess123 in reply to horsie63

Glad to hear the Cath Surgery is behind you...rest up and get to feeling better soon...

horsie63 profile image
horsie63

You too...best of luck with your surgery. With the new variant making the rounds I want to get this over with before I catch something and have to reschedule.

LeesKees_NJ profile image
LeesKees_NJ

I have PKD and my kidneys are so enlarged that PD wasn't an option for me. I am small person and my crowding is so bad that I could never fit that much fluid in me. I do HD. It's been a year next month.

Beachgirl32 profile image
Beachgirl32 in reply to LeesKees_NJ

Sorry you couldn’t do pd if that what you wanted to do. I’m hoping my kidneys are to huge. My mom brother. And aunt and uncle were all able to do pd with their polycystic kidney .

LeesKees_NJ profile image
LeesKees_NJ in reply to Beachgirl32

My mom did home hemo back in the early 90's then got a transplant but had complications afterward and passed away. It was a shock, thank God we have come a long with transplants since then.

My brother's PKD had manifested quicker and he needed a transplant at the age of 45. My only other sibling (a brother) donated his kidney to him which was a huge success for nearly 17 yrs. until he passed from a weird cancer her probably contracted while helping with the search and recovery effort after 911, he was a NJ State Trooper at the time.

So I'm left here with no other siblings but I have a possible donor, we've been tested. She matches somewhat - just not close enough because I have a high antibody percentage it is too risky, I'll kill her kidney.

So I am going to try Hopkins to see if they can do something about knocking my antibody rate down far enough for us to match closer so we can move forward with the transplant. But the immunology wash could take a few shots, if they agree to do it, and my antibodies can come back and it not work at all.

I atleast have to try. Stranger things have happened. Otherwise my situation puts me at at least a 7 -10 wait for a deceased donor :( I'm 60, I'll be decrepit by then with my luck they'll say I'm too old.

Beachgirl32 profile image
Beachgirl32 in reply to LeesKees_NJ

your number is higher than mine I have high antibodies too so they told me hard match my own daughter doesn’t even match . You will have to let me know how the John Hopkins thing goes I think it call desensitization is what I read . I’m 66 so older than you they told me it would be about three years on the waitlist before I get a kidney but that was before they found out the pra number I think that what it call when they are checking the antibodies. My transplant center has an age cut off to get a transplant it 71 not one day older . Does your have an age limit a lot of places don’t . I take it you are in New Jersey with your log on.

LeesKees_NJ profile image
LeesKees_NJ

Yep, I'm in NJ and I was told the cut off here is 75. My PRA is 98%. My one daughter is not a match and my other daughter unfortunately inherited the disease. :(

So what is making me drive to Baltimore to go to Hopkins is a process called Plasmapheresis. "Plasmapheresis is similar to dialysis; however, it removes the plasma portion of the blood where the antibodies are located. " took it from their website:

hopkinsmedicine.org/transpl...

Very interesting stuff. I have all my testing in order. I am healthy besides my dang kidneys. I'm willing to do the travel and whatever else it takes. It may be my only chance to get a kidney.

Beachgirl32 profile image
Beachgirl32 in reply to LeesKees_NJ

that is good you are able to go to John Hopkins. I don’t drive done I had brain aneurysm. Right now my husband health isn’t great so I’m the caretaker for him. I have heard from a few others who had a pra of 100 so they told me not to give up my is like 80 or 85 once I was told 80 once 85 so there is hope three people with 100 have had transplant that I know of.

LeesKees_NJ profile image
LeesKees_NJ

My brother who received only matched my brother who donated like 70-73%, I hope that means you are not as hard to match as you think. Its good to hear you know of others with 100 PRA who were eventually matched. I try to stay positive and take it one day at time.

horsie63 profile image
horsie63

Here it is 7 days later and I still hurt some. I’ve been trying to work from home and I can get to around 5-6 hours in when my back and then my stomachs area hurts… not bad enough for a pain pill but I’d like to go into the office but that’s not happening feeling like this. I’ll ask them today at my cleaning appt but I may have to take some Tylenol

I think part of is I need a new chair although this one is fairly new but also my allergies are acting up causing me to cough and sneeze. Doesn’t help still sleeping in the recliner as when I try lay down I feel like I’m choking and can’t breathe.

I can’t be the only one like this

Beachgirl32 profile image
Beachgirl32

horsie63 sorry you are still hurting . I hope you figure out away to get comfortable . Can you use a few pillow on the bed to raise your head or does that hurt too. Hope your pain eases soon.

I go early in morning for my pd cath hope I don’t have the pain you are having but I’m aware that I probably will have it. Sending hugs and prayers your way

LeesKees_NJ profile image
LeesKees_NJ

I'm sorry you still have pain. I hope you feel better soon! Sending warm thoughts!!

Beachgirl32 profile image
Beachgirl32

hello all had my pd catheter surgery early this morning. Doc said to take Tylenol every four hours even if I don’t need it for pain . Surgey went well but anesthesiologist said why are you awake you should he knock out. They had to put Iv in other hand for some reason it wasn’t working in one hand . My anesthesiologist was one of my old doctors brother in law she moved away two years ago. Anyway doing ok I even took a small walk about quarter of mile. I’m trying to stay ahead . I imagined tomorrow will be more sore than today.

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