Tim had a rough time with the Hemodiaylsis. After the hospital he was sent to hamden Davita on Dixwell Ave to have hemodialysis (where the filter the blood) 3 times a week. Every single time he would vomit and get a bad headache. Things just weren't good at all. His health was supposed to improve with doing this and it seemed to be getting worse. I monitored his blood pressure a couple times a day and the stress was making it go up along with his pulse rate and his quality of life was going down. I spoke with a doctor on Saturday and they advised us not to go Hemo on monday but instead go to the New Haven Dialysis for peritoneal training... Although they told us they wanted to wait two weeks for his stomach port to heal they were going to gradually introduce the new process to us and fully prepare us for the at home Peritoneal Dialysis (PD).
Monday we were told that for the next two weeks Tim would have to stay at the clinic for 8 hours a day to get this training and have his dialysis at the same time. I have been doing my overnight job and then going straight to New Haven until about 6pm for the past two weeks. Well worth the time and effort because Tim feels great. He has not gotten sick one time on this new system. It is less stress on his body. What they do is fill up his peritoneal cavity which is all the space between his ribs and stomach and all his organs.. Once that is filled up with a solution Osmosis takes place.. That is where the particles go through the fluid and the toxins that build up in Tim's body bind together with the concentrated solution and stick there.. after about 45 minutes they drain Tim's port and refil. We have been learning techniques on infection prevention and ways to manage time. By the time Tim is ready he will do 4 transfers a day.. putting 2000cc's of fluid into his body, wait 6 hours and then dump it out and refil. That is a manual transfer which can be done if the power is out or the overnight machine does not work. On Monday we will be receiving out Baxter machine which will do all the transfers at night for him while he is sleeping. That way he can do whatever he wants during the day and plug himself in at night.
We've learned a lot these past few weeks on the signs and symptoms that he needs dialysis. Alot of questions were anwsered as to why Tim was feeling the way he was. When you have built up toxins in your body and your Kidneys don't produce enough urine to let the toxins out it just sits there and eventually your body does not allow any new products come in.. This explains why Tim was dehydrated and throwing up since before Christmas. His blood pressure was elevated.. not significantly because of the blood pressure medications he was on, but there are two types of blood pressure.. The top number when you take it (systolic) shows how fast the heart is beating and how hard its working.. The bottom number (dysystolic (SP) shows how hard the heart is working inbetween beats.. The top number should be between 100 to 129 and the bottom number fro 60-90.. anything higher is considered an issue and needs to be addressed with blood pressure medication or in Tim's situation Dialysis. His blood pressure ranges from 130/100.. the bottom number shows that Tim is full of fluid and needs to have the extra fluid taken out of his body. Dialysis also can take the extra fluid away by using a higher concentration of fluid which will grab ahold of the extra water in his body. Tim's daily weight can fluctuate now that his kidneys aren't functioniong in a productive way. He can gain up to 10lbs of fluid a day depending on what his fluid intake is and also how much salt he is eating. He had the weekend of dialysis off and he gained about 8lbs.. that shows that although he is still urinating that he is not letting go of all the necessary fluid in his body. This causes his blood pressure to remain high. There are also sure signs that he is retaining fluid.. swollen face, eyelids, fingers and feet. From now on he is going to monitor this daily to determine what level concentration fluid to use to grab the extra water out of his body.. This is an everyday thing. Not doing this can be very harmful to him.
All of this is said because a lot of people don't understand what Tim is going through and what adjustments are going to be made in both of our lives. Although Tim is the person experiencing this, being with him I am completely by his side every step of the way (granted the few hours I need to sleep during the day for my sanity and health) Although this seems like a lot right now, it will get better and this will all become second nature in our life. We still have time to spend with each other, our families and have fun. This is not painful or stressful on our end.. just busy. I decided to go back to school this semester because I would like to have better knowledge about medicine and it is something that can benefit Tim and I, as well as other people that are close to us. I will be starting classes January 20 through May.. I want to specialize in Nephrology and Cardiology. (the Kidney and the heart) as well as learn all that I can about Lupus and other Autoimmune diseases.
Although we missed christmas this year, and Tim was stuck back in the hospital the beginning of January this was something that we knew was going to happen sooner or later and I am glad that Tim is very proactive with advising when something is wrong or not feeling right with his body. The worst pain he has gone through was a bad headache.. and the time spent running tests, going to doctors appointments and taking his medication and blood pressure. Other than that he is very lucky to have something that is not painful or dibilitating. over 80,000 people a year are affected by Kidney Disease.. 200 people today found out that they have Kidney Failure. This is something that isn't going to change in the near future except get worse. This is very important to educate yourself about this disease especially if you have someone in your family that has this chronic illness because it is genetic and could affect you. This disease does not discriminate and can hit people at birth all the way to old age. In Tim's case he doesnt have Chronic Kidney disease but the disease is associated with Lupus. This doesnt mean that he wont be affected by this for the rest of his life. Even after Transplant his daily routine will be based on taking preventative medication to help his new foreign kidney stay strong.
Do yourself a favor and get checked.. a full metabolic blood test every single time you go to the doctor. Have your Kidney function tested to determine if it is acting correctly. Do not wait. And make sure you get checked at least once a year. If you have high blood pressure, headaches, decreased urine output, or edema don't wait just go to the doctors. Getting diagnosed early can prevent this from progressing to endstage which requires dialysis or transplant.
Tim gets to eat potassium again. He was limited to very little but now he can start eating bananas and orange juice again. He is very excited :)
-Jackie
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