The next afternoon, our home health nurse came by to review all the paraphernalia (who knew there was an "R" in that word??) uses & to ensure that we were comfortable with operation of the CADD* pump that delivers the heart medication (Milrinone) through the PICC** line, the error messages and how to reset the pump, as well as flushing the PICC line daily and how to watch for signs of trouble. She spent a good deal of time with us that first day and by the time she left, we felt much more comfortable with our new devices and tasks.
The rest of the week was spent trying to figure out what our new routine will be. Good, constant (7 or 8 hour) sleep continues to evade Lee. He is sleeping 3 or 4 hours in the night, getting up between 3am and 4am, most days. A little later in the morning, he will usually go back to bed for another 2 or 3 hours. It's pretty variable, so we are trying to just go with the flow and Lee will sleep when he needs to and is able. I'm trying to plan my noisy activities around his sleeps.
With heart failure, sodium is greatly restricted (under 2000mg per day.) Sodium causes the body to hold onto fluids, making it harder for the already sick heart to pump. You would be surprised (and shocked) to find out the sodium content in some of the foods we eat. We have always eaten whole wheat, multi-grain breads. We really like the Costco 21 grain bread but hadn't been to Costco for awhile so we picked up a loaf of another well known brand. A couple of days later, I checked the label and found each slice contained 290mg of sodium. Costso's 21 grain has only 90mg per slice. That kind of difference adds up fast. Costco chicken caesar salad? 1831-2600mg of sodium, depending on which website you believe. Check your labels.
Because fluid retention is now a life threatening issue for Lee, he is to weigh himself every day, first thing in the morning. If his weight is up 3 pounds or more, we need to call the doctor. At our appointment yesterday, Lee's weight was up 3.5 pounds. Even with all the work we do to limit sodium in Lee's diet (as well as restricting the amount of fluid intake,) his heart simply cannot eliminate all the fluid on its own. The Milrinone is helping with that but sometimes more help is needed. Lee takes a diuretic each day also. The doctor had him double his dose for the next 2 days to see if that will drain off the excesses.
On a brighter note, the Milrinone is helping make Lee feel a bit better. He has a little more energy and feels like walking more. A few nights ago, I woke up around 3:30am, positive I was hearing a drill. When I got up to check, I found Lee putting up a curtain rod ... ... ... 3:30AM! What a life we live! ha! Lee says he just has to get it done when he has the energy, no matter what time it is.
Living with Guido: in the previous post, I introduced Guido. He's the little backpack that carries the CADD pump (that delivers the Milrinone) and the IV bag full of the medicine. The home health nurse insisted that we name the backpack, since Lee cannot go anywhere (as in, no more than one step) without it. So ... Guido, it is. When Lee is walking around, the backpack (aka Guido) is on his back or shoulder but when he sits, he slides it off and onto the seat beside him. Lee and Guido have been at odds a few times this week. Several times, I've heard Lee from the other room saying something like, "oops, sorry Guido" or "DANG ... I forgot Guido again!" Yesterday, when he got out of the car, Guido got left on the seat for a half a step. Guido doesn't like that and generally falls to the floor, tugging on the IV port. While Lee showers (after wrapping the PICC port in saran wrap & taping it up), Guido hangs on a hook on the curtain rod. It's a little creepy sometimes ...
Mayo Clinic appointment: this week and apparently, at all of the appointments going forward, there WILL be a test. We are tasked with memorizing the post transplant medications, post transplant diet regimen, health protocols, etc. Discussions will revolve around support teams and plans for getting to the Mayo when we get the call for a heart.
Questions seem to come to my mind many times during the day. We are formulating a "phone tree" for notifying people when we get "THE" call. I guess that now days, it's more of a text, Facebook, email tree. Our next door neighbors are on alert for us too. What a huge blessing to have neighbors who love us and are willing to take care of the little things that come up when we have to suddenly leave. The heart transplant team at the Mayo says, "live your lives as normally as you can." HA! I'm not sure what "normal" means anymore, but we trust in the Lord with all our hearts and He will get us through this.
Lee's mom sent us this verse in a card she recently sent. We love it:
Jeremiah 30:17 "For I will restore health to you ... declares the Lord."
The rest of the week was spent trying to figure out what our new routine will be. Good, constant (7 or 8 hour) sleep continues to evade Lee. He is sleeping 3 or 4 hours in the night, getting up between 3am and 4am, most days. A little later in the morning, he will usually go back to bed for another 2 or 3 hours. It's pretty variable, so we are trying to just go with the flow and Lee will sleep when he needs to and is able. I'm trying to plan my noisy activities around his sleeps.
With heart failure, sodium is greatly restricted (under 2000mg per day.) Sodium causes the body to hold onto fluids, making it harder for the already sick heart to pump. You would be surprised (and shocked) to find out the sodium content in some of the foods we eat. We have always eaten whole wheat, multi-grain breads. We really like the Costco 21 grain bread but hadn't been to Costco for awhile so we picked up a loaf of another well known brand. A couple of days later, I checked the label and found each slice contained 290mg of sodium. Costso's 21 grain has only 90mg per slice. That kind of difference adds up fast. Costco chicken caesar salad? 1831-2600mg of sodium, depending on which website you believe. Check your labels.
Because fluid retention is now a life threatening issue for Lee, he is to weigh himself every day, first thing in the morning. If his weight is up 3 pounds or more, we need to call the doctor. At our appointment yesterday, Lee's weight was up 3.5 pounds. Even with all the work we do to limit sodium in Lee's diet (as well as restricting the amount of fluid intake,) his heart simply cannot eliminate all the fluid on its own. The Milrinone is helping with that but sometimes more help is needed. Lee takes a diuretic each day also. The doctor had him double his dose for the next 2 days to see if that will drain off the excesses.
On a brighter note, the Milrinone is helping make Lee feel a bit better. He has a little more energy and feels like walking more. A few nights ago, I woke up around 3:30am, positive I was hearing a drill. When I got up to check, I found Lee putting up a curtain rod ... ... ... 3:30AM! What a life we live! ha! Lee says he just has to get it done when he has the energy, no matter what time it is.
Living with Guido: in the previous post, I introduced Guido. He's the little backpack that carries the CADD pump (that delivers the Milrinone) and the IV bag full of the medicine. The home health nurse insisted that we name the backpack, since Lee cannot go anywhere (as in, no more than one step) without it. So ... Guido, it is. When Lee is walking around, the backpack (aka Guido) is on his back or shoulder but when he sits, he slides it off and onto the seat beside him. Lee and Guido have been at odds a few times this week. Several times, I've heard Lee from the other room saying something like, "oops, sorry Guido" or "DANG ... I forgot Guido again!" Yesterday, when he got out of the car, Guido got left on the seat for a half a step. Guido doesn't like that and generally falls to the floor, tugging on the IV port. While Lee showers (after wrapping the PICC port in saran wrap & taping it up), Guido hangs on a hook on the curtain rod. It's a little creepy sometimes ...
 |
| Lee & Guido putting the doors on the outdoor cabinets. |
Questions seem to come to my mind many times during the day. We are formulating a "phone tree" for notifying people when we get "THE" call. I guess that now days, it's more of a text, Facebook, email tree. Our next door neighbors are on alert for us too. What a huge blessing to have neighbors who love us and are willing to take care of the little things that come up when we have to suddenly leave. The heart transplant team at the Mayo says, "live your lives as normally as you can." HA! I'm not sure what "normal" means anymore, but we trust in the Lord with all our hearts and He will get us through this.
Lee's mom sent us this verse in a card she recently sent. We love it:
Jeremiah 30:17 "For I will restore health to you ... declares the Lord."
*CADD - Computerized Ambulatory Drug Delivery
**PICC - Peripherally Inserted Central Catheter
Thankful for the energy God is giving yoy, Peg, and Lee.
ReplyDeletePraying now for your specific needs God knows you have.
Love. Claudua Doug