I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: terry3004 on January 24, 2008, 08:10:31 AM
-
I just came across this website doing a search for nxstage and I think that this is something that is wonderful for the renal community.
Now, for a little bit about me...
I am currently 31 years old. I got married to my wonderful wife in April 2005. In May of 2005 I went to see my wife's PCP for back pain. Since I was a new patient of hers, she did the entire new patient workup on me. I left with a prescription for 800mg ibuprofen and a muscle relaxer for my back.
I got a call two days later from the doctor's office that my creatine was high and to immediately stop the ibuprofen and call a nephrologist. I was never able to get into to see the nephrologist that I was referred to. Between the neph's office not getting my medical records to the scheduler being out of town for two weeks, I decided to go somewhere else. And, I'm glad that I did. The nephrologist that my wife found for me is one of the best in the state of Florida, so says everyone that I come across.
I met my neph in July 2005, and I was told that my kidney function was at 17% and that since I was so far into the disease that nothing really could be done to prevent the inevitable and just to let things progress. I was told during that initial visit that dialysis would be within 2-5 years. I was also scheduled for a kidney biopsy at that time so that they could know better where I stand.
I almost didn't get the biopsy done as the hospital couldn't get my blood pressure down for whatever reason. I was supposed to be there for about three hours and wound up spending all day there. They even had a power outage while I was in the MRI machine!!
After the biopsy was done, and I went back to see my neph for the results and he told me that I would be on dialysis within two years. I understood the change in the time frame now that he has more information to make a diagnosis. At the same time, I was told that my potassium was too high (I am a potato fanatic) and was given Kaexolate to bring it down. Talk about a nasty medication. I call it liquid sand. I was told to drink 1/2 cup each day for three days. However I couldn't keep the medication down. But, I was able to bring my potassium down to within acceptable levels, but I was alway playing with that point where my neph would put me back on the Kaexolate.
While I was going through all of this, my mom passed away of cancer Thanksgiving of 2005. After my mom passed, my health really started to decline. I was getting tired all the time, and was sleeping as much as possible.
When I went for my visit in January, my neph said that things have most definitely gotten worse and it was time to start dialysis. He set me up to see a dialysis nurse to go over my options. The options that were given to me were to either go on PD or on in-center hemo. I chose PD as me and needles don't get along. My surgery to have my PD catheter placed was in February, and that is when things really got worse.
The surgery itself went good, however my after surgery care was where the problem was. When my surgeon came in to check up on me the first time, he said that I needed to eat before I could be discharged from the hospital. As he and the head nurse left, the nurse turned around and told my wife that no food was allowed in the unit, which I could understand as there were also people in there waiting for surgery that haven't been able to eat. I went back to sleep and then the nurse came back in a couple of hours later, made me urinate, and discharged me without my surgeon's approval. I was also told that I could change my bandages and take a shower after 48 hours.
When I got home, I wound up throwing up. My wife and I first thought it was just because of the ride home. However, throughout the rest of the day, I couldn't keep anything down. After I slept that night and still had the same problem in the morning, I called my surgeon back to let him know. He said that he had come back to check on me and was surprised that I was gone, and I told him what the nurse had said to me, and he was not happy. My surgeon told me to try a couple of things and if it didn't work, that I would have to go back to the hospital. Well, nothing would stay down and I wound up going back to the hospital that night, and stayed there until Monday. However, once I was admitted as a patient, the care was like night & day.
Now, when I got home the second time, the first thing I did was take a shower, and continued taking showers on a daily basis, like I used to.
My first appointment with my dialysis nurse (not the same one as earlier) was two weeks later. When I told her everything that happened, she was quite surprised as the normal rule is that nothing is supposed to be done for 7 days. The PD training went well and the catheter worked great...almost. About three weeks later, I started getting some drainage from around my catheter. My nurse took some samples of the fluid and sent it off for testing. The initial tests came back negative, but a week later, a new result came back stating that I have a micro-bacterium infection. This infection is so rare that I am the second person that my neph has seen with this infection in his over 20 years of practicing!
I would have to go back to the hospital to have my catheter changed. This time, I went through the inpatient unit as I was being admitted after the surgery since I didn't do too well with the previous surgery. The after surgery care was much better and I went home after three days.
Now, this time, the infection was causing problems with my PD. I was actually absorbing the fluid and causing a lot of drain errors with my PD cycler. So many, in fact, that I wasn't getting any sleep. Another month later (May 2006), I wound up back in the hospital. Me and my wife were with some friends of mine and my wife stated that she saw the color come out of my face. My wife called my nurse I was instructed to go to the ER. I got to the hospital at about 10:00pm and my initial vital signs were ok. I was checked again at about 2:00am and I was running a fever of about 99.5. I finally got called back to a room in the ER at about 4:30am, and my temperature was up to 104. I wound up staying in the ER for another 12 hours or so, as I was being admitted, but no private rooms were available (I had to have a private room due to being on PD). It turns out that the infection was flaring up and did not like the catheter in my abdomen. After being in the hospital for two days, with my fever not breaking, the decision was made that the PD catheter would have to be removed. I was put into surgery, 101 fever and all, and the PD catheter was removed and a perma-cath was placed in my right shoulder, and I started on hemo. After my surgery, my fever finally broke about three days later, and I was in the hospital for a total of 9 days.
Once I left the hospital, I got setup with a dialysis center and started the trek to doing my dialysis in-center. I was put on an anti-biotic run for a year to clear out the infection that I have, and was told that we could try the PD again after the anti-biotic medication is done.
I went back to the hospital in September 2006 to have my perma-cath changed as the first was was no longer working. Everything in the hospital went good (in and out the same day), and that catheter was working good. However, in October I would up one morning to go to dialysis and I felt wet...I thought I was sweating. I got up to go to the bathroom to start getting ready to go to dialysis and I heard something hit the floor. I turned the light on in the bathroom and found out that my shirt was covered in blood. I immediately got a bunch of paper towels to put pressure on my shoulder and shouted at my wife to call 911...I never saw my wife move that fast!! When I got to the hospital, and had my blood work done, my potassium came back at 7.1 (damn McD and their Monopoly promotion :oops; ). Therefore, they would not be able to put me under to put in a new perma-cath, so they did a local and put a shiley catheter in so that I could be dialyzied. After the catheter was placed, I was sent down to the dialysis unit and got cleaned out. The next day, everything was better and they put in a new perma-cath in my shoulder.
In April 2007 I had another surgery to try the PD again. Everything at the hospital went well and this time I knew better than to do anything with the catheter for 7 days to let everything heal up. Once everything had healed up, I went to see my PD nurse and start with the initial flushes to get everything going with PD. However, my catheter would not drain (again). I went back to see my surgeon and he tried to manipulate the catheter to get it to work as the thinking was that the tip of the catheter was stuck next to a wall or something. Once he was done with trying to get the catheter to move I went back to see my PD nurse and she couldn't get it to work. After a couple more attempts on different days, it was determined that I was not going to be able to go back on PD, and I wound up having that PD catheter removed.
Now, knowing that I was going to have to stay on hemo, my wife started looking into other options. This is when she found out about NxStage and the home dialysis system. I mentioned it to my neph during his next clinic round and he said that I would be a very good candidate for NxStage between my age and the amount of independence that I have. He said that I would need to have a permanent access in one of my arms. We went over my options and I decided to have a fistula placed in my left arm.
My fistula surgery was in August 2007 and I went through the out-patient unit this time. The surgery went well and at first the after surgery care was doing good. My surgeon came in for the first visit and checked my arm and everything seemed to be going good. He also said that he would want me to stay a little while longer knowing my history with anesthesia. About an hour later I tried eating something that my wife brought up and it didn't stay down. I informed the nurse that was taking care of me and she said that I ate too soon, that I should just stick with fluids. So, I spend the next couple of hours sipping on some water and everything was staying down...so far. Later that afternoon, the head nurse (same from first PD surgery) came in with my discharge paperwork. Thinking that since the water stayed down that I would be ok to leave. My wife signed the paperwork and the nurse left. A couple of minutes later I sat up and threw up. We informed the nurse that provided the discharge paper and was told that there was nothing that could be done at the hospital about it and that I should just go home. I knew better and proceeded to call my surgeon's office to have him come down and see me so that he could admit me. The LPN at my surgeon's office called the out-patient unit and the nurse told the LPN that nothing could be done and the LPN agreed that I should go home. About five minutes after I was told this, my surgeon came in (he wasn't paged...just checking on me), and when I told him what was going on, he admitted me, and said that yes, there is something that the hospital could do. He informed the out-patient nurse that I was being admitted and that I would be staying there until a room opened up for me. She wasn't happy about that as it was time for her to go home. I got my room assignment and was taken there about two hours later. As I was being pushed out of the out-patient unit the nurse gave me a dirty look like I should have just gone home. Again, once I got to my room, everything was better.
About three weeks after my fistula was placed, my dialysis center started to use it. And, since I was going to go on NxStage, I had them setup the button holes. It took about four weeks to have the button holes setup. Once the button holes were setup, my neph got me setup to start with NxStage. I had my initial consult in December of 2007 and was setup to start training right after the new year. I was pushed back a week as the NxStage nurse went into labor about two months early.
My NxStage training went great. I was done in two weeks. I actually started sticking myself on the second day of training...not bad for someone who hates needles.
I have now been home from training for three days and things are going good at home.
I hope to be able to go back to work next week. I have been working through my entire ordeal. I was working part-time while I was on hemo, but I plan on going back to full time shortly after returning from my current medical leave now that I am on the NxStage and my treatments are shorter in time. So far, I am loving my NxStage machine and I am looking forward to having more time to be able to do things that I enjoy.
I appreciate you reading my story...sorry for being a little long-typed.
-
Great introduction! You've been through the wringer. I hope everything goes well for you from now on. :welcomesign;
-
great intro :welcomesign;
-
:welcomesign;
Wow you've been through the wringer!
-
Welcome Terry to Ihatedialysis.com,
It's great to have you here and I hope you learn a lot from all the close to 100000 posts. Feel free to read and post often. Thanks for your story it is a great rendition of your experiences.
Sluff/ Admin
-
wow, what an introduction. :welcomesign; to IHD. :beer1;
-
Welcome Terry, good to have you aboard.
-
:welcomesign; aboard terry, you've certainly had a rough time of it
-
:welcomesign;
-
:waving; Welcome Terry. I am glad you found us.
me and needles don't get along.
I am sorry PD didn't work out for you...... But I see you have gotten over your needle phobia! ;) ;D
I am sure you have lots to share with IHD.
-
:waving; Hi terry3004,
That's some introduction - well done!
I hope things continue to work with NxStage.
I look forward to your participation on the forum.
Welcome!
okarol/moderator
-
:welcomesign; Great introduction! We love detailed stories. It is how we learn and obtain knowledge. Looking forward to reading more and hope the NxStage works great for you. You deserve for things to be a little easier now! Glad you are here :grouphug;
-
:waving; I look forward to hearing more from you. :welcomesign;
-
:welcomesign; terry3004. WOW! What a great introduction! We love detailed stories. So glad you are doing home-hemo. Take care and post often.
-
Hi Terry,
Welcome to IHD :welcomesign;. Great introduction. You have been through a lot and I admire your strength.
I can relate to your story. I lost my Mom on Feb 4, 2007 to lung cancer. I was so stressed/depressed and started PD on 10/22/07.
I pray good things will continue with your treatment because God knows you have been through a lot. Feel free to come here and share about anything and everything.
:waving;
-
Welcome to our community, Terry! You didn't know, but that is just the kind of introduction that the founder of this site, Epoman, used to like. He liked people to introduce themselves and give a good picture of their renal adventure. You have certainly had an adventure! Thanks for sharing with us. Well, I need to let you know that this is not just a message board - we have become a bonafide family, with all that entails. So keep reading, keep posting. Let us know how things are going with you - not nosy, just family. Here is a group hug from all of us. :grouphug;
Bajanne, Moderator
-
Welcome! What an informative introduction!
-
Hello and :welcomesign;
-
HI I just saw your post and think i am following in your footsteps.. Had my pd put in in Feb never worked can't get dr to do anything about it so found another dr who says needs to come out esp since it is not being used ..They say I need fistula now and then will try again when my stomach heals. I too had very bad experience with the nurses after my pd was put in and i am sick to stomach thinking I have to go back and see them to remove it :(
I would love to here more how you are doing now ...!!(only if you dont mind :))
-
Things are going a lot better for me now that I'm on NxStage and taking care of things. I still have my up and down days, but more ups than downs. NxStage is nice since I get to do my treatments at home and spend more time with my wife.
I'm sorry that PD isn't working out for you. Your surgeon should be able to try a couple of things to move the "hose" around inside of you to hopefully get things to work. Unfortunately, though, PD doesn't work for everyone and if it doesn't work for you, then you will have to go on hemo.
Between the different types of access options you have for hemo...a fistula is your best option. It requires the least amount of maintenance and care, and most people won't know what it is unless you tell them. Mine hides under my shirt sleeve (upper left arm), so most people don't even see it. Plus, my 5 year old loves to touch it all the time and feel the pulsing under my skin.
If you have the time, before you actually have to start hemo, check out a few different dialysis clinics in your area, talk with the staff and the patients, so that you can decide where you want to go. If you want to look into NxStage, start at their website and they have a search function that will tell you where the closest NxStage clinic is in your area. Along with being at home, I love the looser dietary restrictions that come with NxStage and also not having to go to a clinic three times a week. Either you or your partner will have to stick you, but once you get buttonholes formed on your fistula, it's a breeze. I totally hate needles and I stick myself six days a week.
If you have any other questions, feel free to let me know and I will try to share as much insight as possible.
-
:welcomesign; Terry to the IHD Family!
I'm glad things have improved for you.
What a rough start you have had.
-
Welcome, Terry! Lots of good information from you! Thanks! :)
-
Whoa Nelly, Terry!!! You HAVE been through a lot, in such a short period of time!
I'm glad nxstage is working out so well for you! Welcome aboard!!! :welcomesign; :welcomesign;