So, I complain about other people not posting, while I am the world's worst!
There is so much in life to be thankful for, I often find myself pissed off - with myself- for not being thankful. I love the fact that I can hold a grudge against myself longer than I can any other person on the face of the earth. If it were not for my awful sense of humor I think I would be a grouch. Watch out Oscar, I am moving in on your can! If you have someone you love, please take the time to say thank you, I love you, and appreciate the nice things they do. It is so easy to get wrapped up in the crap that you go through in daily life that you not only forget to stop and smell the flowers but you also forget to plant the seeds so there is something good there to smell.
My husband is on dialysis. His one kidney has completely failed. Our live revolves around his dialysis, getting ready for treatment, ordering supplies for treatment, mailing blood work for treatment, dealing with the side effects of treatment, and then the actual treatment itself. It is very easy to get wrapped up in "our life is treatment" and all else falls by the way side. I have promised myself that we are going to find a way to not let treatment be our life. There are certain things that just have to be done, my honey-do list will forever be bigger than I want. I am a list maker and since dialysis started my list just seems to be stalled. So, I am going to start back with my list of things to do today and just keep rewriting what needs to be done like I did not have to do it the day before. You know, keeping both eyes straight ahead and never looking back.
Our typical dialysis week starts on Sunday and ends on Thursday. On Sunday, we have to make a sack of dialysate. This has to be started early in the morning or at least seven hours before treatment. The good thing about that is that we use the same sack for three nights of treatment. The issue with that is that once the sack has started someone has to be home to correct any alarms that might go off. Treatment on Sunday starts earlier than most other days, actual treatment takes about 2 1/2 hours but with set up and clean up it takes more like 3 1/2 to 4 hours depending on what happens. This is good but then we have to figure out what to do with the babies and Tatiana. At 6:30 pm, I start by washing my hands, this is done about a million times over the next 3 hours, and then gathering supplies - cartridge, saline, access supplies (needles), lab supplies, tape, drape cloth, alcohol wipes and my handy dandy notebook. There is also a flow sheet that has to be completed during treatment and I make sure I have a new one and start filling in the blanks.
Thanks to the handy dandy notebook, I have a list of things that need to be done during treatment. The first thing that has to be done is the cartridge has to be primed. This takes about 17 minutes after you get it into the machine and the saline attached. Then there are the alarm checks and snap and tap. Snap and tap usually takes about 10 to 15 minutes. You start with the red line and start getting all the air out of the lines. You have to go through the system twice to be sure you get all the air out of the lines. It is not a hard process but time consuming. The worst part is tapping the filter to get all the air out, just because the filter is hard plastic and you have to beat it against your hand until all the air is gone. Air is an issue if it gets into your blood stream but with this machine the air causes alarms to go off so that the air never gets into your blood stream. When you are done with snap and tap you attach the pressure pod and prime the saline line. They you start the PureFlow that has the dialysate in it (this is the sack that was made earlier in the day), attach three lines and then it is ready for treatment. While all of this is going on, he weighs, gets his standing and sitting blood pressure and temperature. We figure out how much fluid needs to be taken off, then program it into the machine. This is where the fun stuff really starts.
I tear the tape that is needed for securing the access lines, get the needles, the heparin, band aids, lab stuff. After I tape the drape cloth and set all the supplies down it is time for access. To gain access, you have to stick him in his fistula, twice. We use what is called the buttonhole technique. It is the less painful way to do this but there always seems to be issues with one of the buttonholes. No matter how I look at it, I am jamming two large needles into my husbands arm. I am not a nurse! or health care professional. Most of the time I can take a deep breath and go. Some days this is a quick process and others it takes longer. After the lines are in and the heparin is given (one day some how the needle full of heparin set on my husband's chest for 1 1/2 hours until the machine started giving us fits because his blood was clotting - thank God for all the help numbers we have and Natalie, the most awesome nurse and person who never talks to us like we are idiots when I am sure she wants to at times) you attach the two lines from the machine to the husband. Do one final check and THEN start treatment.
There is a set of reading that must be taken when the treatment is first started and a blood pressure recorded. Then as pressures allow the machine is taken up to the highest speed it can go. The readings and blood pressures must be taken every thirty minutes during treatment which takes about 2 1/2 hours from the first reading. Toward the end of treatment the medication that is given at the end of treatment needs to be drawn and any lab supplies ready. When all of the extra fluid is removed the machines alarms, an adjustment is made and the machine finishes washing the blood. When the final alarm goes off it is time for rinse back. This is where you give him back the blood that is still in the cartridge and lines. After that you unhook him from the machine, take some end of treatment readings and turn off the machine. The lines that you started access with are still in his arms and they have to be removed. Because of the heparin that is given to thin his blood so it does not clot during treatment it takes longer for him to stop bleeding when the lines are removed so we sit there and look at each other while we hold pressure to stop the bleeding for at least five minutes sometimes longer. Another temperature, sitting and standing blood pressures must be taken. The cartridge removed from the machine and the machine wiped clean. He weighs while I take out the trash the flow sheet gets faxed and we are done with treatment for Sunday!
This is done for five nights of the seven in our week. The other part of treatment is that we have three children at home. Tatiana, who is an awesome daughter and person, is left taking care and getting her 5 and 4 year old siblings off to bed. She is a good daughter and only partly because she never complains about helping out with her sister and brother.
I am thankful:
that we can do dialysis at home
that we have good children who do what needs to be done without issue
that we love each other and are loved by others.
Still sitting in the Corner after 40 years,
Christine
