We have had 5 days of home hemo dialysis training, tomorrow will be our 6th. Either I am old or learning isn't as easy as it use to be. This is a bit overwhelming. Needles, syringes, gloves, sterile everything and the machine itself is like a small computer. So much work to be done. We are getting letters from our doctor for the power, phone and the water company. This is so we can have a medical alerts put on these accounts. We had to take a water sample from our home and it has to pass inspection. They say this is no big deal. The machine uses tap water when you are at your home.

Emily has been going with us to learn what we are learning. She is going to be the back up. She works at the hospital delivering babies at night in ob and learning dialysis in the daytime. She is not getting much sleep. We have been putting in some long hours but approximately 2 hours per day is driving.

He is feeling better. He said it is so much better when he does dialysis on the machine like we will be using at home. He will do dialysis 6 out of 7 days once we are at home. Right now it is taking 3 to 3 1/2 hours each time. Once we get good at this we hope it will be 2 1/2 to 3. We can pick the 6 days and it can be anytime in a 24hr period, doesn't have to be the same time everyday. He has kind of figured out his fluid intake to keep himself from gaining too much. He has traded his 20oz tea glass for an 8oz juice glass. I told his family we are going to buy shot glasses and leave one at eveyones house, this will be Steve's glass we he comes to visit no more than a shot. He has already experienced what it feels like when they have to take of too much fluid, his legs and hands started cramping terribly. It didn't take long to figure out too much fluid can be painful.

The training nurse told us today she has 4 patients right now doing home hemo dialysis. I thought that was scary. Either they are too chicken to learn (I am right there with them), don't have someone to help them (a big percent are senior citizens) and could be it is pretty darn complex. So I guess we are going to be in a small percentage of home hemo patients. The doctor says this is the way to go since he is so young. It is easier on the body, it doesn't drag you down as much and your in control of when you do it.

Right now Steve is dialylizing through a perm catheter in his chest. He basically has to flex able tubes sticking out of his chest. Near future he will be using his fistula in his arm. We just today received a call from the vascular surgeon about getting his fistula worked on. I will have control over all sharp, long, pointed needles filled with different things. Therefore don't be pissing me off.

All joking aside this is going to be like bringing your first born child home from the hospital. I asked the nurse today if she could come stay with us for about 2 weeks. Please pray for us to give us strength to be able to do this at home. I am signing off and taking the long weekend off.


Love Steve, Christy & Blair

7:35pm Monday night

Today did not go well at all. We were suppose to start the dialysis training today. Emily, Steve and I took off for St. Joseph this morning in the first snow storm of the winter. Between Maryville and Savannah we saw 6 cars off in the ditch. The roads were terrible. We arrive in one piece at the dialysis center at 9:00a.m. After about 30 to 40 minutes of waiting they finally came out and said that the machine we were to train on was not working and they had been on the phone with tech support but was not able to get it going. Steve still had to have dialysis but could not get on a machine until 12:30pm. Emily had to be at work in Maryville at 3:00pm. We were either going to drive back to Maryville or call someone to come get her. Alan said he would come get her. He is such a good guy. So the 3 of us went to Perkins and sat for an hour and 45 minutes until a machine became available. Steve got started about 12:45pm.

They said today he weighed in at 117.0 when he left Friday his weight was 113.1. He had too much fluid on. At the end of the treatment today his fingers started cramping bad enough they had to get some fluid back in him. He had 30 minutes to go and his finger was killing him. Finally the brought out the chicken broth. They said if this every happens at home dissolve 1 chicken bouillon cube in a half cup of warm water and have them drink it. This puts some of the sodium back and will relieve the cramping in the the arms, legs, fingers, etc... In about 10 minutes the cramping started getting better.

We made the long drive home. Today was very frustrating. Now we are going to try to start training again on Thursday. I hope this goes better.

Christy

Sunday morning 7:55a.m.

Rough week last week. Let me see if I can start where I blogged last. Before we left the hospital Steve had a Fistula-gram which is where they inject dye into the fistula in his arm. It showed that the fistula has branches from the main blood supply which is why it has not matured like it was suppose to. At some point he will have to get this taken care of in order to use this access for dialysis. For now he will use the access in his chest. We did ask when could he get this taken care of and vascular surgeon says no hurry, of course Steve wanted to do this before he left the hospital. Ha!

He has had 2 dialysis treatments at the hospital and 1 at the dialysis center. It makes him feel like crap. He is pretty disappointed. He says he felt better before he had dialysis. Each time was 3 hours. I am hoping that his body will adjust to it because right now he feels and looks terrible. He is very nauseous, very weak and it does weird things to you. When he did the treatment Friday at the center his weight weighing in was 114.9 when we left it was 113.0. They measure in kilos. The nurse said this was perfect. You don't want to pull off too much fluid. According to the nurses at the hospital the first 2 treatments were to just clean the blood and the 3rd was to start taking off fluid. He has to be really careful now with diet and fluid intake. I don''t know if he can survive on the fluid they are limiting him to. Approximately 40oz. of fluid a day is what they said. I am anxious to see what he weighs Monday after going through the weekend.

I am no expert but I would say his kidney may have already quit. They said it probably would once he started dialysis. He only urinates maybe twice a day now. He use to go about every 2 to 3 hours.

We start our training Monday. Steve, Emily and I will be doing the training and in time hope to teach more people. Steve and I decided this was a little more complex than we thought it was going to be. If you can't stand the sight of blood this will not be for you. When we get started I just hope that I am smarter than a 5th grader because it looks like a lot to learn, with no errors.
I will try to get on here again sometime this week. I am am going to work a couple hours on both sides of the training and Emily is going to work evenings each day when we get the training completed each day. So if you don't here from us it is because we are in slumber.

Christy

Much better night last night. Several hours of much needed sleep. My question for today is the 3 blood pressure meds that he is on does he still keep taking them. His blood pressure to me is fluctuating but has been a lot lower. This morning it was 109/63, his blood pressure has never been this low. He is going to have a bladder scan this morning to see if he is empty his bladder like he should. Hopefully we can go home today but I guess it depends on what Dr. Lukins says about the pictures of his fistula.

Christy
Reporting from Heartland Hospital

Sorry it has taken me so long to post. I am not having good luck with the Internet here at the hospital.

Last night was long. Steve's pain meds did everything but keep him from pain. He really complained about his chest and neck hurting from the surgery. Finally at 1:00am he settled down and went to sleep for 4 hours. We were awaken at 5:00a.m for meds. He said he couldn't believe how good he felt this morning. Of course I thought he still had medicine hangover but he did convince me he felt a lot better. They brought breakfast in and he said it didn't really feel like eating but he thought he better eat a little. They came right away and took him to dialysis at 7:00am. Before they could get him hooked up to dialysis he got sick. For several hours he was nauseous. They gave him zofran to help calm his stomach. He was nauseous pretty much all day.

Dr. Browns husband is the doc at the hospital this week so he is seeing Steve. He said no going home today since you were sick. That made him happy. He said it could be uremic poisoning but he was ok yesterday. I think it is his body adjusting to the dialysis and pain meds by mouth, reg meds, etc... too much for the body to handle. He felt pretty crappy all day.

Finally at 4:30pm they came to get him to put dye in the fistula to see if it has a problem. The doc that did this seems to think it is ok but he is going to let the surgeon look at the pictures they took and make the decision whether to use it or not. We got back to the room about 5:30pm and he did eat some dinner. He seems to be doing better. So tomorrow we will probably see Dr. Lukins (vascular surgeon), Dr. Brown (kidneys) and Dr. Liarz (Urologist). His next dialysis is Friday morning at 5:45am. I think Linda said she wanted to take him to this appointment.

10:00pm Tuesday Night

It has been a long day. Hoping for a calm night. Steve's surgery only lasted about 30 minutes. He was in recovery for over an hour. Finally got to his room at noon. Then the excitement started.

A small incision was made in the neck above the collar bone and a permicatheder was threaded through a large vein with the exit point about 6 inches down on his chest with 2 tubes hanging out. Everything went find until he got to his room. I noticed he had a small blood spot on his gown. A few minutes later the blood spot was about the size of the plate. I got the nurse immediately. The exit point was bleeding more than it should. 2 nurses applied pressure for a while but they still could not get it to stop bleeding. He had a slow leak. Finally the nurses call the surgeon. He was already in another surgery so they call his nurse. She came immediately and was with us most of the afternoon trying to get this to stop bleeding. Around 3:30 it finally stop bleeding. The surgeon came anyway and did a couple of things to the permicatheder and we didn't have anymore problems.

They took him about 4:00pm to dialysis. His first treatment was 3 hours. He did pretty well. He hasn't been that comfortable due the pain in his chest and neck. He thinks this is worse than actually having the kidney taken out. The pain meds are not as good as the morphine he had last year. We will see what the night brings. Sleep I hope. Will try and post more tomorrow.

Christy

Steve has been coming home this week and his ankles are swollen. Not good. It is good that he will be starting dialysis next week. He has been working some long hours trying to get crops out and Mike Archer came up last night and took over for him and he came home. Thanks Mike it was very much appreciated. He has been coming home eating and pretty much going to bed. He has been in bed at least by 9pm every night and a couple of nights it was 8:30.

Blair is still playing softball in KC on the weekends but we haven't been able to go to any of her games. Steve is too tired and I hate to go and leave him home. We have some great friends that she rides with and we can't thank them enough.

The dialysis nurse told us for the training, week after next to be there at 9:00a.m. Training will probably be 5 hours per day the first week. She said she is flexible with the hours. When I told Steve this he said we will go Monday at 9:00 and see if she won't change it to 6:00a.m. the rest of the week. We will see how that goes over.

Thanks to those of you who have offered to drive him to his appointments and to dialysis. We may have to take you up on them. Also all who has offered any kind of services, it is much appreciated. Until next week, keep praying.

Christy

I said I wouldn't post for a while but I forgot Steve had an appointment with Dr. AJ (Onocologist) and everything was good. It was time for his 3 month chest xray and results were ok. This chest xray has been every 3 months because according to Dr. AJ Steve's kind of cancer reoccurs most of the time in the chest. Everything looks good. Steve had his last CT scan in July. AJ wants another in January. We asked if we could do this in December because my company is enrolling with a new insurance. Our previous insurance company has been bought out. That insurance has been great and sounds like that will be a thing of the past.

I have been on the phone a lot the last 2 weeks calling insurance choices that my company is offering, social workers, case workers, other insurance people, the dialysis center, etc... I found out the dialysis center in St. Joe is not contracted in the network with either of the insurance companies that my work is offering. This has been one big headache not to mention stressful.

The plan is to start our dialysis training on Nov. 16th. Might take 3 weeks. Probably 5 hours of training per day. Haven't worked this out completely with my work yet but will probably go to work for a couple of hours go to St. Joe for training then go back to work for a couple of hours. We will just have to see how it is going to work.

We are still planning on getting the catheter access on Nov. 10th. We just keep climbing the hill. Thank you for all your thoughts, prayers, good deeds.

Steve, Christy & Blair