A modern day Pollyanna waxing poetic about her life.
Tuesday, August 26, 2008
Almost active
Just got a call from Stanford, once insurance clears the procedure they will activate Marty on the waiting list. The time is near and then we wait. You all know what to pray for, keep praying.
Thursday, August 21, 2008
Dialysis moves in
Sorry it has been so long, things have been very hectic around the T household. Marty has gone back to work and we have been trying to get on a good schedule. Dialysis is going well and we are getting faster and faster at it. I am going to try to explain things the best I can so you can get a good picture of what life is like for us.
First of all, when they brought the supplies, I was shocked to see a pallet coming my way. One whole corner of my bedroom is full of dialysis solution
Yes, that is a IV pole you see in the above pic. We use that to do a manual exchange which involves taking a 1500 ml bag of dialysate and using it to fill. The fluid rests in a cavity called the peritoneum and it filters all the bad waste like a kidney. So you drain first and then fill back up and let the fluid dwell for 2-3 hrs or sometimes 12 hrs. To do this we need to wash our hands very good, mask, clean everything down, get the catheter out, turn the a/c off and lock the doors. Once the catheter is connected we can open the door and turn the air back on. Here is a bag of dialysate solution warming in the closet:
This helps you remember what step to do, it is called a organizer
The green indicates it is a 2.5% strength solution, this means everything is good. What is everything? weight,blood pressure and swelling. If he is feeling badly, low blood pressure then we use the 1.5% strength, if he is swollen and coughing and BP is high then we use the red. So far he is doing so well he uses green all the time. Sometimes he does use yellow because his BP can get low, so far we have never used a red. This is great news, it means his body is responding to treatment and doing well, he was taking 4 blood pressure medications and now he is taking none.
At night he uses a machine called a cycler, this machine is basically a pump that does the exchanges for him. The machine drains, fills, sets a timer for the dwell and repeats the process three times. This allows freedom to get a full nights sleep. The machine takes 7 hrs and 49 minutes to complete the process and the bags are 3000 ml each. This takes a bit of work at first, you have to connect the tubes, stop, mask, wash your hands, connect the tubes, break the cones in the bag. Then the machine flushes the tubing, then the machine primes and then you connect. At first the machine we had was horrible, going off every two hours at night. We now have a new machine that works wonderfully;
We record how much fluid drains out, what his blood pressure, temp and weight is everyday. We also have to check to make sure the fluid is clear. When it is cloudy that means there is infection present and is a bad thing. So far we have stayed infection free and we plan on continuing that way.
Talked with Tricia at Stanford today, the report is still sitting with the cardiologist. She is going to bug him tomorrow to get it read. Then the transplant doctor has to see it and clear him for transplant. After that he will be activated. We asked how long we will have to get there and they said between 12-24hrs, that is a huge relief since it takes four hours to drive there. We are hoping transplant is not far off and that we can put all of this behind us.
First of all, when they brought the supplies, I was shocked to see a pallet coming my way. One whole corner of my bedroom is full of dialysis solution
Yes, that is a IV pole you see in the above pic. We use that to do a manual exchange which involves taking a 1500 ml bag of dialysate and using it to fill. The fluid rests in a cavity called the peritoneum and it filters all the bad waste like a kidney. So you drain first and then fill back up and let the fluid dwell for 2-3 hrs or sometimes 12 hrs. To do this we need to wash our hands very good, mask, clean everything down, get the catheter out, turn the a/c off and lock the doors. Once the catheter is connected we can open the door and turn the air back on. Here is a bag of dialysate solution warming in the closet:
This helps you remember what step to do, it is called a organizer
The green indicates it is a 2.5% strength solution, this means everything is good. What is everything? weight,blood pressure and swelling. If he is feeling badly, low blood pressure then we use the 1.5% strength, if he is swollen and coughing and BP is high then we use the red. So far he is doing so well he uses green all the time. Sometimes he does use yellow because his BP can get low, so far we have never used a red. This is great news, it means his body is responding to treatment and doing well, he was taking 4 blood pressure medications and now he is taking none.
At night he uses a machine called a cycler, this machine is basically a pump that does the exchanges for him. The machine drains, fills, sets a timer for the dwell and repeats the process three times. This allows freedom to get a full nights sleep. The machine takes 7 hrs and 49 minutes to complete the process and the bags are 3000 ml each. This takes a bit of work at first, you have to connect the tubes, stop, mask, wash your hands, connect the tubes, break the cones in the bag. Then the machine flushes the tubing, then the machine primes and then you connect. At first the machine we had was horrible, going off every two hours at night. We now have a new machine that works wonderfully;
We record how much fluid drains out, what his blood pressure, temp and weight is everyday. We also have to check to make sure the fluid is clear. When it is cloudy that means there is infection present and is a bad thing. So far we have stayed infection free and we plan on continuing that way.
Talked with Tricia at Stanford today, the report is still sitting with the cardiologist. She is going to bug him tomorrow to get it read. Then the transplant doctor has to see it and clear him for transplant. After that he will be activated. We asked how long we will have to get there and they said between 12-24hrs, that is a huge relief since it takes four hours to drive there. We are hoping transplant is not far off and that we can put all of this behind us.
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