You don’t know what you have until it is gone. Only having one arm is a real challenge. The next day, the block that was put in was still there, but much less. I had tingles in my hand and I could bend it and pickup things, if they were light. It is amazing to me how much things way. Like my jug of water that I use… very heavy. Refrigerator doors, heavy.
The good news is that it was one and done. Instead of the planned two stage operation, they did the whole thing, and I am done. The surgeon team was very sympathetic to the concept of looking for one good place to do the fistula when we discussed it and they found it. The incision is right below the elbow. Totally manageable place when I have to become a pin cushion.
The night we got home, my hair was pretty askew, and I needed to have it put into a ponytail. My arm was not going to help, and you cannot do a ponytail with one hand. I enlisted my husband. Oh man, the guy has never done a ponytail in his life and had no clue. He did not know how to pull my very long hair through. After multiple tries, we had a semblance of most of my hair on the side top of my hair. It would have to do.
The next day, I was still very tired. The pain was a dull ache, and my hand was less puffy. I got up and read email and a few other things and then went back to bed. I slept three and a half hours. We had a light dinner, watched a movie and back to bed.
I really enjoyed the ability to sleep. I get insomnia very easily. Naps are wasted on children. I have my best sleep when I steal a nap. But I do not do it often because then I do not sleep at night.
Saturday, I was feeling stronger in my arm. I could bend it and hold things in my hand. I was still tired and having nasty gastrointestinal issues. Most people leave the hospital with narcotics after surgery. I did not. My choice. I am on Tylenol as needed and I take it before bed. Narcotics bind you up, big time. What they do not tell you is that anesthesia does the opposite and I had mega dose. Also, antibiotics were administered, and the result was a cocktail of explosive proportions. Pun intended. My stomach hurt and I was nauseous. Without being too graphic, I was spending a lot of time on the pot.
This nausea scared me. I am always worried my kidneys are going to crash. My GFR is low, but I felt good before the surgery. I even went to my water aerobics class on Tuesday. With this upset and feeling icky, I thought that maybe the surgery had finished me off.
Today is Sunday and the nausea and icky feeling is better. I had a rough night however, as my leg was bothering me. I now have edema. I did not until they put me on amlodipine and hydralazine. Now if I have my legs down for any length of time, they puff up. I put on compression socks. Went on ok, had a horrible time getting them off. My old friend insomnia was back, and I was awake from 1:30 am to 4am. I just lay there and think. Not good. I try to go to a state of meditation, but then the marching band comes through and my thoughts are all over the place.
My arm is puffy and sore. Not going to lie about the pain. Totally doable though. Looks terrible. It is all purple. My arm is stiff. Last night while watching TV, I wrapped my arm in a heating pad. Nirvana. It really helped. I cannot wear my rings yet, and I had to switch my watch to my other hand. Such are my issues.
Before the surgery, I practice not using my arm. Discovered I could not get in or out of my bed because it was too high. We had a neighbor come over and he and my hubby took the bed apart and we threw out the frame. Now it is low enough for me to sit and swing my legs in. I can put my shoes and socks on without having to hop up and steady myself. This is something if you are having this surgery to check.
The other thing we did not think of until it was too late was the stairs. I cannot get up the inside stairs to my house. We have a raised ranch. You come into the house in the lower level where we have a family room, my husband’s den, and utilities. Upstairs is the main living areas and the bedrooms. Fortunately, there are outside stairs with two iron banisters. But inside, the banister is on the left. The side my arm is that I cannot lean on. Hopefully, a friend is coming to put a second railing in. We should have thought of this. I will never be able to lean my weight on the arm to pull myself upstairs like I do.
Onward and upward. Today there is a block party, and we are going for a while. For those of you who, like me, perseverate on the unknown, I hope this posting helps to alleviate some fear. I read an article last night that after this surgery, it is not uncommon for the GFR to remain and even go up a bit for a while. I will try to find the link. Ever hopeful that I have the time to heal and build the fistula up.
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Bassetmommer
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Thank you for this info! Want you to know I've been thinking about you. My gfr is 9 now, but I am not not considering dialysis. My Dr also wanted me to get an arm fistula. After reading your post sounds like you are not a side sleeper? I am, and my right arm is all scarred up, and I know they'd want to use my left arm, which is a no go, since I only have one finger and it's on my left side. And, I sleep mostly on my left side. I refuse to be more disabled than I already am. So then I contemplated the PD. I wonder how one would manage disconnecting it to go to the bathroom 4 times a night like I do? And since I've always had insomnia too, I doubt I would ever get any sleep with that.
I couldnt do the home hemodialysis anyway, as my husband faints at the sight of a needle, and there is no way I'd consider getting dressed and putting up with traffic 3 times a week to go to a clinic either. When I previously had dialysis for 5 months, I was in the hospital and had a chest catheter, and didn't have to get stuck with needles. It was great! That would be the only way I'd have it. But they won't let you go home with that! If I could have the same process I had in the hospital, at home, I would do it. But I refuse to be a pin cushion the rest of my life. I have been putting up with blood tests and drs for 28.5 years now.
How many times a week will you have to do it? Wishing you the best!
Bravo to you. I am no where near dialysis…yet 3b. With no other serious conditions. Just the usual annoyance of aging. I do have IBS, some back pain and toes hurt. Upon my diagnosis I made the decision NO dialysis. I watch my diet drink plenty of water, and exercise. I’m in Paris now and on my way to check off a bucket list……..Normandy and the landing beaches. I eat a baguette and will dare to,have jambon in it. But the cuisine is crème crepes cheese cider (calvados’s) and omelette s with milk. Not a renal diet by any means. Last night I watched as our traveling companions eat the most marvelous charcuterie. I had the bread and a tiny bite of cheese. But the wine was Fab!
I admire anyone who says no to the pin cushion and also those who commit to it. But everyone has to decide for themselves
Thank you! Back in 2018, my Dr implied I might only have 6 months left to live, so my husb bought a 40 ft RV bus and took me to the Grand Canyon, the first thing on my bucket list, and then the Saguaro national park in Arizona. I dont believe in spending beaucoup dollars on medical rigamarole. I decided to travel and enjoy myself. The next trip was up to Utah and the Red Canyon. Tried to go into Bryce Canyon but the bus was too long to be allowed in. We also went to the North Rim and witnessed a freak snowstorm that rendered the Canyon absolutely beautiful! My Dr never pushed the plant based diet. I did well with him for 25 years, then he retired. He also did not push water. The first 25 years I hardly ever drank water. I bought distilled water to make my coffee, and drank organic 2% milk, and fruit juices. In fact, my Drs advised me to limit fluids. For anyone drinking tap water, I urge you to confirm whether or not they are adding fluoride to it. Fluoride is damaging to the kidneys.
Hi Chica, I love your bucket list story. Normandy was sobering and amazing. Our daughter and SIL live in London nand met up w us there. We received the best news ever…..they are 10 wks pregnant. Will be our first grandchild. I hope to make it for several years. A great sadness came over me knowing that life may take me in another direction and that flying from the US to London (11 hrs) is not the easiest and honestly we just can’t hop over every few weeks Yeah I know Zoom, FaceTime……it’s not the same.
Thank you for your story and listening to mine. I’m now in London until end of July
HI Chica, I would look into the PD. I have heard it is not as complicated as HHD. And you probably could do it if you can manage your daily stuff with your hands now. Doesn't hurt to find out. I do sleep on my back and have for years. I have sleep apnea and use a machine. But my choice to do HHD is more about having the freedom to do it when I want. I am not really going to rely on my husband but he will get trained too. Its either he supports me or I croak and no one will be making his dinner..... it was an easy choice for him. LOLOL
The reason I didnt want PD is because of 2 reasons. First, I'm overweight, and my stomach is my biggest problem. Having extra weight there is very uncomfortable, and not being able to walk much makes it hard to lose weight. Reason #2 is that 2 years ago I had ascites, and had to have 8 lbs of fluid removed from the peritoneal cavity. After that, the idea of pumping fluid back in there is gross, and having to do it every single night? No way! Also, I cannot lift 20 lbs. Yes, my husband can, but I'm not guaranteed he will outlive me, he is 82 already. Thankfully, my stage 5 has finally reduced my apatite and I have lost 7 lbs! My first 2 years in stage 5 I was hungry all the time, and I kept reading the symptoms and saying, when will my apatite ever diminish? I feel pretty good at this stage.
Ya know, Chica, I get it. That was one of the reasons I said no to PD too. I am a person of size and have a large belly. Not interested in making it worse. So I understand about no PD.. I would ask your doctor when things get critical about a Chest catheter. My dear friend just crashed into dialysis this month. The did a chest catherter. She went home with it and is on dialysis for some time with it. Going to the incenter might not be as bad as you think. She says she reads, sleeps and watches Netflix while in the chair.
Regarding PD and going to the bathroom - most simply hop out of bed and go there. The connection line extends a long distance (10 feet is standard, but one can ask for an extension to 20 feet). My hubby walked to the bathroom, kitchen, and great room - while dialyzing.
PD Dialysis is very doable, and once you get it down to a routine, you don't really pay it much attention. I'm 7 months in and it's just part of every day life, so if you want to know more, let me know and I can give much more detail. You can find a lot of it in my posts if you click on my name. And you don't need a partner. I do have to add the disclaimer that PD is a temporary solution. Most folks are just on it while waiting for a transplant, so the average is about 5 years or less. Some folks are on it longer, but after a while the peritoneal membrane stops functioning as a third "kidney" and another source of dialysis or transplant will be needed. But until then, it works great! Just depends on how long you need it to work.
Doctors thought I'd be on dialysis 3years ago. So I got my fistula, same upper left arm as you. It healed well. I was very worried because it was so bruised, but Dr said looked good and healed well. Luckily my GFS has hovered in the 20s and I'm not yet on dialysis. I don't let them take blood pressure or blood on my left arm. I checked with Dr and he said I coul lift up to 10 pounds since my fistula isn't being used. I can only lift 2 or 3 pound hand weights and only pull 7.5 lbs at the ymca on the pully machine. Dr still want me at Y daily, but I just do 5 nights a week. Two years after getting my fistula. It is creepy feeling the thrill and watching it pulsate. Looks like an alien implant!
I am feeling the trill. Thought it would drive me nuts but there is some peace knowing it is working. Good for you for being proactive. My GFR is much lower and sooooooo...I will be on dialysis sometime this year.
Thank so very much for sharing your experiences with all of us. As an elderly man with a GFR of 25 and going lower,I really appreciate the insight. God bless
Thank you for the information about your experiences. The details were helpful. You might think of getting a chairlift for your stairway. I had one installed right after I came home from my transplant. It has made a big difference in being able to manage a stairway. I don’t have to worry about falling and it makes it easy to transport items like laundry between floors. I wish the best for you and hope all will go well. You are a warrior.
Of all the things I thought about before surgery, I forgot the stairs. I actually think this might be a good idea in the future. But for now, I like the exercise and my husband NEEDS to do the stairs for exercise.
My hubby and I really identify with your comments re houses and layouts. That becomes very important in so many ways later on in life. We eventually gave up our colonial style home with bedrooms upstairs and moved into a house with most everything on the main floor. The loneliness of my hubby upstairs while I was in the kitchen downstairs, and so on became too much. And the stairs didn't help. Never thought about these things when we were in our thirties!
There are mountains of things I never thought about in my 30's. I used to run up and down the same stairs all the time in my 40s and 50s. Oh well. Can't dance or play tennis either. But then I don't have to work so there is a tradeoff.
Yes, my wife was Amlodipine for a while and it caused ankle swelling. Also, the Hydralazine is not good to be on long term either. When my wife's kidney numbers started dropping, I got her in to see my Neph. He took her off the Hydralazine she was on immediately. He said he has had several patients who's CKD was caused by Hydralazine induced vasculitis. Here are several excerpts from articles submitted by the NIH and other studies: #1) In conclusion, hydralazine is a medication used to treat hypertension, it can cause a rare side effect known as hydralazine-induced vasculitis - a condition where the blood vessels become inflamed, leading to damage and narrowing of the vessels. #2) Hydralazine can cause severe AKI resulting in CKD or death. Given this extremely unfavorable adverse-event profile and the widespread availability of alternative anti-hypertensive agents, the use of hydralazine should be carefully considered. #3) Hydralazine is unique because it is associated with both a drug-induced lupus and an MPO-positive p-ANCA vasculitis.
Take good care of yourself and go one breath, moment and day at a time. As you know, change and adapting to it is not simple, but the necessity is the mother of invention.
Your experience and courage ARE inspiring to others; keep that close during the tougher moments and try to remain positive knowing that you are doing the best you can for yourself.
You have humor still despite the situation. From what I've read in your past posts, you have had positive outlooks during your many years with ckd. I hope I can maintain half as much mental strength as you. I am 67, only couple years younger but I don't feel wiser by any means. Thank you for sharing all your posts! Will be watching for updates. Take care 🙏
Well, I'm sorry it is so scary. I certainly understand. Some days I feel like the anxiety is just overwhelming. My husband tries to keep a positive attitude too. He has psoriatic arthitis. It's been severe at times, but he's always kind-hearted. He uses humor to ward off feelings of despair.We are here and in this together. May you have success with your journey and thank you again for sharing so much good advice, experience and information. Prayers going your way lady. 🙂🙏
Thank you, Just being honest. Anyone who says this a walk in the park is lying. I might have mentioned that I have psoriatic arthritis too. It was the reason I am where I am today with CKD. People do not understand that PsA doesn't look bad, but affects so much, such as blood chemistry and mood. Through all this, this past year the infusion I was on, Orencia, stopped working. So now I only get relief for two weeks and then the "arghs" build up. And with the surgery, I have to go 6 weeks before the next one...... which they are now switching me up to Remicade. I hope it works. What is your hubby on?
He is in the beginning stage of plaque psoriasis, skin inflamed etc., but showing signs of joint pain. No official diagnosis yet. He has state provided medical care, so he doesn't get much choice as to which provider sees him, but will actually see a specialist for his condition soon. At one point, he was offered immunosuppression therapy (Tremfya), but the injectables are $1700-2500/vial and unsure insurance would cover, so sought another doctor for second opinion. He'll be eligible for medicare in two years. Meanwhile he deals with the skin condition and pain in back and hands. It's a process, but at least w/medicare he can choose his doctors. Still, we appreciate all the free state paid care he's received in the past. 🙂🙏
Yikes, that's tough... I presented first with Psoriasis, head to toe. They said it was hives. This went on for a couple of years. Then it subsided and then the joint pain came. They said it was because I was fat. So for three years I took prescribed ibuprofen which started the collapse of my kidneys. When my hands started to turn into claws, they test me, sed rate off the chart, and finally connect the psoriasis with PsA. Idiots
Before you turn down a biologic, which saved me, look into whether or not they have patient assistance. I was on Enbrel for years at $5.00 a pen. And I was working and had health insurance. Don't wait because the damage you do not see is there. Also, there is a proven link now to psoriasis and PsA and renal disease.
Omg, yes! I so agree with your advice. As you know, my son has it and I worry about him constantly since he's so young. It's hard getting a diagnosis; it came close to crippling him in a year's time before a rheumatologist was brought into the picture. So far a biologic is controlling it, so far it's working. And his rheumie steers him away aspirin products when he has breakthrough pain. I really hope Dana66CKD can find a way to get the right medication for her hubby. Horrible disease.
Thanks for the response and encouragement. I'll look into assistance with drug expense. Soooo many side effects from these. My sister has RA, was taking Enbrel, I think for 1 year, stopped working then placed on another. During treatment, she developed DVT in leg. Prescribed plavix or other blood thinner. Of course for her the benefit of taking outweighs risks of side effects (blod clots); she said her RA was crippling and she'd wished for death vs dealing with the pain it was causing. Her insurance pays for part of, the pharmaceutical company helps pay for remainder. So, when/if husband needs immunosuppressive tx, we may have affordable options 🙏🤞
Yes, just keep on working with the drug expense. My son takes Taltz. It's not supported by his insurance plan; he only pays a little bit towards it and the pharmaceutical company waives the rest. His rheumatologist vouches for him. So where there's a will, there's probably a way!
Thanks Darlenia. Hope your son is doing well. I do have reservations about these types of drugs, but quality of life is also important and hub suffers with the itching, which interferes with quality of life. Ultimately it's up to him and the financial end of this issue.🙏 I hope new Derm has better recommendation and treatment.
Thanks for your knowledge. I know so little about Plaque Psoriasis/PsA, s/s, progression, tx, etc.As with my CKD, I will research Psoriasis/PsA, options, tx, etc.
Do you see Rheumatologist? My husband only sees Dermatologists now, but possibly because he's not had complaints of joint pain yet? Thank you for sharing. It's been very helpful. 🤞🙏
yes I see a rheumatologist. I saw a dermatologist first who could not identify the psoriasis. I presented with clusters of red bumps, which they now know as guttate psoriasis. Not everyone gets PsA so that's my hope for you.
And mine too. Husband suffering with the itching, sometimes all night/only at night. Well, I'm hoping for better outcome with new Derm. All I can do is 🙏 . Will continue to follow your and other's posts for any new info and updates on your progress. Take care lady. Hope all continues going in positive direction 🙂🙏
Awesome, awesome, awesome writing and detail. I really hope people who will come to this process after you continue to find this post and find the inspiration and good nature that it contains to offer support, educational clarification, and source of courage that it takes to make this leap. You are very much admired in this community, and others benefit greatly from your comments. Keep em coming! I look forward to hearing more about how this process plays out. Those of us on PD are naturally very curious about the process that home HDD people go through, hopefully wit being too nosey
Hey,, Rightbackat ya.... you were my inspiration to write this. I was stunned to find out how little info there was on the actual process of getting an AV Fistula.
It is almost a week and my arm is no longer purple. I have strength in my arm and hands. NO tingles in the hand, but every once in a while, I get a electric shock down my arm. It's just weird. I am sure that is from the nerve block. It was so funny to have this appendage of my body with no feeling. After they gave me the block, I tried to lift it and there was no way. But now, I have to be careful because I could easily lift too much or rip it because there is so little pain. Right now, the glue holding it together is more itchy then painful. I will say, I am still tired at night. Today, the Hubs and I went for a walk to get out two miles in for the day. After sitting on my butt for five days, I could feel it. But I was not SOB so that was good.
Glad you are doing so good with your PD. You should post an update when you can.
Yeah, folks need to know the details of all this stuff. I also found very little detail about the fistula process. So this will be very helpful for those looking toward Hemo one day and for those of us on PD who might experience Hemo down the road. That would feel very weird to be dragging an arm around with absolutely no feeling in it. I can't imagine! And yeah, protect that thing like your life depends on it, cause at some point, it will! And yeah, take your time getting back into the swing of things. A little downtime is allowed
Bassetmommer I appreciate all of your humor, education and specific support for me that you have given over the past 18 months. May I ask how low your GFR dropped to to make this decision about getting the fistula? How long between the first notice and your final decision to take this action? Also, I think it was you, but could be someone else on here, that started Ozempic about the same time I did. I am on 2.0 and over the past 6 months my GFR dropped from 21 to 14. My PCP looked it up and did find where Ozempic can hurt the kidneys. Bummer, since I have done so well on it - lost 27 pounds and A1C is 6.1 now, which has not been that good in a long time. So dropping Ozempic and back on Glipizide until I find a new neph who gives a damn and makes a plan for me.
I am always inspired by your bravery and positivity. More than you will ever know!
Thanks, but I not that brave. The decision to get the fistula was to be proactive. My GFR was down to 8 or 9 on to different test but the Cystatin test was at 13 so my Neph says I am at 11. I was having big edema issues and putting on weight like crazy and felt not like me.... Turned out to be the BP med I WAS on. Talk about infuriating. Since I have gone off, the legs are almost back to normal and no other symptoms. Having the surgery will prevent me from crashing into dialysis and needed a chest catheter. Who knows, I may not start For a while, but I am prepared.
The fistula surgery scares me more than dialysis. And I read RonZone commentx t PD, no way could I do that. My biggest fear is infection and not healing from that, which happened in surgery at Mayo Clinic. I don't know what Cystatin test is. I am changing nephs, again, as the one I had at Univ of Arkansas only wanted me to get bariactric surgery and told me nothing of what to expect when etc. I am praying a new neph will finally interact with me in a positive way sp I can make decisions. My second blood test was not really any better, still at 15 instead of 14... but my renal dietician said they make the decision for dialysis based on symtpoms, as you had vs numbers. For now I feel fine. We'll see if I gain weight going off Ozempic, I so hope not. Best to you and I am always cheering for you!!
Honestly, the surgery was a piece of cake. I was in surgery for 3 hours, but I am done. Sometimes they need to do two surgeries. The next day I was tired and sore. By day 3 I had to remind myself not to use the arm. There was little to no pain. Better sooner than later and I know folks who had it done and then never needed it because they had a transplant.
OK, well that is encouraging. I had one in my chest for emergency pacemaker surgery a few years ago, and they knocked me out so it was fine then, no problems afterward. So I need to think in those terms. Are you being evaluated for trasplant list?
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