This forum post is hidden because you have chosen to ignore jane. Show Details
This forum post is hidden because you have submitted an abuse report against it. Show Details
Thanks for getting back.
I am on a lot of message boards dealing with the home dialysis stuff. I just thought I would like to bring some of the issues of ESRD (End Stage Renal Disease) to the forfront.
It was an easy choice for me to make that committment. I did not want to be a widow! Hubby is not a computer person and because of his diabetes/arthritis etc it is not possible for him to do much to help. However he does the cooking and helps where he can.
There is much to be said for MORE (treatment) is BEST. By doing home dialysis Ralph is pretty much able to eat and drink what he wants since we dialyse 6 nights a week. We are on the nocturnal program and are monitored by internet all night long. ( New York State is the only state that requires that for heomodialysis)
Sometimes if it has been a night of alarms/ or just because he is itchy or just because he can't sleep, which means I don't get the kind of sleep I need, I become a little grumpy. But life is so much better with all this than being alone.
If you are interested in checking out some of the new machines etc. You can go to www.homedialysis.org
Go to patient stories and look us up you would be amazed at all the stories about people.
We are on the Nxstage portable machine, storage can be an issue. Because you need to have boxes of dialysate for back up treatments.
It is a lot of work but not as much work as when we used the machine like in one's in center.
I know sometimes I feel exhausted and than I say you know what (to myself) when we had children we needed to fint them into a routine until they were adults so that is how I look at life. You deal with what is delt to you. If you get lemons you make lemonade.
I have been a caregiver since I was 8 yrs old. My mom was sick and I being an only child I had to take over and help dad (he could not read). So that was the beginning. I got married and started having children. As an adult dad got sick and I helped mom take care of him. Than mom moved in with us after his passing. While taking care of her I also took care of both my in-laws. Now it is my husband's turn. I guess I was born a caregiver.
Our daily routine is: set up the machine for dialysis, draw up needles of heperin and saline. Circulate the saline throught the dialysis cartridge. Take his temperature, Blood Pressure and weight. Take care of his catheter, get him on the system. Call in with vitials etc. Take blood samples when necessary and spin in centrifuge, give IV iron, epo when necessary, set up machine with the parameters for dialysing all night. I start the set up at 8:00pm and get him on the system by 9:00pm. Most night we are able to sleep throught without alarms. At 5:00Am machine alarms treatment is finished and I take him off. Take readings off machine, get his temprature, weight and call in the info. Once the Pureflow sack is completely drained set up the new sak (this takes 7 hours).
Then it is time to feed the dog and take her for a walk, take ,my meds, take a shower and off to work. I work 4 days a week 8-4. Than the cycle starts over again until Saturday. That is our day off. I feel like I am on vacation.
We are very fortunate to have a wonderful center. They have monthly meetings for the caregivers. That really helps.
Well I have talked long enough.
Have a great day and God Bless.
Wow, like so many caregivers, you've become an expert on ESRD! I do hope other folks will reach out and speak up. I'm so glad your husband's health is so good. I recall with a shudder how hard it was for folks on hemodialysis to keep their fluid intake down so low. They were always thirsty. You have a very full life, and a great attitude. But as you say, you want to have your husband around, so you bit the bullet and learned all you could.
My hat's off to you, Pat! I hope you have a great day as well.