Chris told me this evening that his Mom called. She got some testing done, but she's not a match. Her blood type isn't compatible.
I know she had been wanting very much to help Chris in this way, so I'm sure she's disappointed. I thought it was so wonderful for her to offer him her kidney.
Chris said that his mom is still going to try to help him get a kidney, but instead of donating to him directly, she's going to see if she can become part of a Living Donor Chain (they did a story on this recently in Parade Magazine). It was described at a party this evening as "musical kidneys", which sort of fits. It's where Chris' mom's kidney would be used by another recipient, whose designated donor would give their kidney to Chris (or someone else that matches) and so on.
We're still working for Chris to be successful with the dialysis and keeping our fingers crossed that it will help his heart function well enough that the folks at the U of Utah Transplant Center will agree to do the kidney transplant without requiring heart surgery beforehand.
Friday, December 30, 2011
Thursday, December 29, 2011
Delivery #1 & Follow-Up
We got our first delivery from Baxter on Tuesday morning. The man was very nice and said he would be our regular delivery person. He was able to fit all the supplies in Chris' new dialysis room.
Wednesday, we spoke to the folks from DaVita pharmacy. At length. All the meds, all the doses, how many of each pill he has left, etc. Chris and I handed the phone back and forth as we answered all the questions. Looks like they'll be a very convenient option for getting all the medications delivered to us on time, without having to drive out to Costco, etc. Hopefully this will work out and be nice & convenient.
Thursday, we went to see Jennifer again. We had a whole list of questions and things to bring her. She gave Chris EPO and iron shots again. We switched out the spring scale (that weighs the bags of fluid that drains out of Chris' abdomen) because it wasn't working well. We also got a few drain bags so Chris can drain before bed. All in all, she said he's doing great and we made an appointment to see her again next Thursday.
Chris had an episode one night this week, although I don't remember which one just now. He had terrible abdominal cramping while he was in the process of draining out his fluid. He ended up stopping with about 800ml of fluid still in. We mentioned this to Jennifer but, since it was an isolated incident and since the remaining fluid came out in the morning, she wasn't concerned.
Chris wants to be able to do his dialysis at night on an automated machine so he doesn't have to deal with these fluid exchanges all day long. (Here's a link to some information on how that works.) Jennifer said they can test Chris in the middle of January to see if he's a candidate for that.
Right after our appointment with Jennifer, we stopped at Wal-Mart. Chris picked out a giant bean bag chair (seriously, chair doesn't really do this thing justice) and had it delivered to the store. Holy Cow! This thing is a beast! It's huge, and hopefully he'll be comfortable in it while he's using the APD machine. I've caught both Digit and Dusty in it, so it's apparently comfortable enough for them too.
Wednesday, we spoke to the folks from DaVita pharmacy. At length. All the meds, all the doses, how many of each pill he has left, etc. Chris and I handed the phone back and forth as we answered all the questions. Looks like they'll be a very convenient option for getting all the medications delivered to us on time, without having to drive out to Costco, etc. Hopefully this will work out and be nice & convenient.
Thursday, we went to see Jennifer again. We had a whole list of questions and things to bring her. She gave Chris EPO and iron shots again. We switched out the spring scale (that weighs the bags of fluid that drains out of Chris' abdomen) because it wasn't working well. We also got a few drain bags so Chris can drain before bed. All in all, she said he's doing great and we made an appointment to see her again next Thursday.
Chris had an episode one night this week, although I don't remember which one just now. He had terrible abdominal cramping while he was in the process of draining out his fluid. He ended up stopping with about 800ml of fluid still in. We mentioned this to Jennifer but, since it was an isolated incident and since the remaining fluid came out in the morning, she wasn't concerned.
Chris wants to be able to do his dialysis at night on an automated machine so he doesn't have to deal with these fluid exchanges all day long. (Here's a link to some information on how that works.) Jennifer said they can test Chris in the middle of January to see if he's a candidate for that.
Right after our appointment with Jennifer, we stopped at Wal-Mart. Chris picked out a giant bean bag chair (seriously, chair doesn't really do this thing justice) and had it delivered to the store. Holy Cow! This thing is a beast! It's huge, and hopefully he'll be comfortable in it while he's using the APD machine. I've caught both Digit and Dusty in it, so it's apparently comfortable enough for them too.
Friday, December 23, 2011
Full Week of Training
We've been at DaVita training with Jennifer every day this week. Training has lasted about 2 hours per day. We've gone through every section of the binder, learned all about the regimented daily routine and why it's so important.
Chris will be taking his temperature, weight, and standing & sitting blood pressures each day. These factors will help him determine which concentrations (yellow/1.5%, green/2.5% or red 5%) of dialysis solution he will use. Some days he'll do all yellow, others may be two yellows and a green. He's also going to chart all these numbers, so Jennifer can help track his progress.
If his weight spikes, then his blood pressure will likely go up, and so he'll need a higher concentration of fluid. Lots of variables.
Diet changes, too. He's going low-phosphorous, which means no more whole-wheat bread, no nuts, etc. Processed meats (hot dogs, sausages) are out. We were surprised to find out that dark-colored colas were on the no list, but lighter sodas like Sprite are OK.
Chris had some very specialized blood work done on Monday and they told us that his kidney function is down to about 9%. This means that he IS now eligible for the EPO (Erythropoietin) shots to help his red blood cell production that Humana had not approved earlier. It also means that Jennifer can give Chris the iron in a shot, rather than having to spend hours at the hospital getting an infusion. On Friday, she gave him both the EPO and the iron.
She sent us home on Wednesday with a scale, blood pressure monitor, a heating pad and several bags of fluid. Chris did his exchanges and also demonstrated his proficiency when Jennifer came to do a home visit.
We have an appointment to come back on Thursday to see Jennifer, and we're also expecting a big supply delivery from Baxter on the 27th.
Chris will be taking his temperature, weight, and standing & sitting blood pressures each day. These factors will help him determine which concentrations (yellow/1.5%, green/2.5% or red 5%) of dialysis solution he will use. Some days he'll do all yellow, others may be two yellows and a green. He's also going to chart all these numbers, so Jennifer can help track his progress.
If his weight spikes, then his blood pressure will likely go up, and so he'll need a higher concentration of fluid. Lots of variables.
Diet changes, too. He's going low-phosphorous, which means no more whole-wheat bread, no nuts, etc. Processed meats (hot dogs, sausages) are out. We were surprised to find out that dark-colored colas were on the no list, but lighter sodas like Sprite are OK.
Chris had some very specialized blood work done on Monday and they told us that his kidney function is down to about 9%. This means that he IS now eligible for the EPO (Erythropoietin) shots to help his red blood cell production that Humana had not approved earlier. It also means that Jennifer can give Chris the iron in a shot, rather than having to spend hours at the hospital getting an infusion. On Friday, she gave him both the EPO and the iron.
She sent us home on Wednesday with a scale, blood pressure monitor, a heating pad and several bags of fluid. Chris did his exchanges and also demonstrated his proficiency when Jennifer came to do a home visit.
We have an appointment to come back on Thursday to see Jennifer, and we're also expecting a big supply delivery from Baxter on the 27th.
Friday, December 16, 2011
Training Begins
We headed over to DaVita today for our 1:30 appointment. We didn't know what to expect, but I wasn't thinking we'd be there 'till after 3:00.
First, Jennifer was concerned about the cath site. She asked us if we were "the ones who took off the bandage ourselves." Yes. That's us. She took off the current dressing and said things looked great. No infection. She cleaned the site and then added a connector to the end of the tube. She flushed the abdominal catheter to make sure it was working properly. (Flushing entailed having one full bag of dialysis fluid pumped into and removed from the abdomen. Chris said it felt weird.)
We were then taken to another room to do some training. She showed us how to clean the site, and she gave us a big bag of gauze, tape, ointment, etc. We also got a binder with information. Then we watched a video of how to care for the site during & after a shower. The video was pretty poorly done -- it looked like it was done in an old Days Inn motel room. Time for an update! Chris passed the post-movie quiz.
We'll have to purchase table salt, distilled water, antibacterial soap, paper towels and antibacterial gel for the bathroom & his clean room. Everything else will be provided by Baxter, she said. Oh, and we will look into purchasing a belt to hold the tubing in place. The tube coming out of his abdomen is longer now, and he's uncomfortable with it taped to his stomach. It looks like one of the belts is covered by Medicare so I'll look into that soon.
That reminds me... speaking of Baxter... they're really on the ball. They've already called Chris to see if he needs any of his supplies re-ordered. We haven't even started yet. Jennifer said that we'll have to place orders with them monthly, and they'll contact us if they don't hear from us by the appointed time.
There's more training to be done, so we'll see them again on Monday from 1:30 to 3:30. It also seems like there's even more training after that, so it'll be the week of the 26th or so before Chris starts actual dialysis at home. It's time for me to stop procrastinating and get my craft room ready for its new purpose. I'm dreading this project.
We were then taken to another room to do some training. She showed us how to clean the site, and she gave us a big bag of gauze, tape, ointment, etc. We also got a binder with information. Then we watched a video of how to care for the site during & after a shower. The video was pretty poorly done -- it looked like it was done in an old Days Inn motel room. Time for an update! Chris passed the post-movie quiz.
We'll have to purchase table salt, distilled water, antibacterial soap, paper towels and antibacterial gel for the bathroom & his clean room. Everything else will be provided by Baxter, she said. Oh, and we will look into purchasing a belt to hold the tubing in place. The tube coming out of his abdomen is longer now, and he's uncomfortable with it taped to his stomach. It looks like one of the belts is covered by Medicare so I'll look into that soon.
That reminds me... speaking of Baxter... they're really on the ball. They've already called Chris to see if he needs any of his supplies re-ordered. We haven't even started yet. Jennifer said that we'll have to place orders with them monthly, and they'll contact us if they don't hear from us by the appointed time.
There's more training to be done, so we'll see them again on Monday from 1:30 to 3:30. It also seems like there's even more training after that, so it'll be the week of the 26th or so before Chris starts actual dialysis at home. It's time for me to stop procrastinating and get my craft room ready for its new purpose. I'm dreading this project.
Wednesday, December 14, 2011
Back to the Kidney Doc
We had our follow-up appointment with Dr. Mallea today. Things went well during the appointment. He wasn't happy that we had changed Chris' bandage on the surgical site -- the surgeon's on-call guy shouldn't have recommended that we try to do it ourselves. He had a nurse from next door (DaVita dialysis) come over and had us all put on masks. They said I did a really nice job with it, so hopefully there won't be any infection. Chris indicated he was still in significant pain from the surgery, so Dr. Mallea wrote a prescription. The doctor also ordered some labs because Chris hasn't had that for a few months. He also said we'd get a call from DaVita to get training started for the in-home dialysis.
Off we went to the pharmacy, but it turns out they don't even make the strength of medicine Chris was prescribed. (And a sincere thank-you to the gentleman at Walgreen's that told us. He could have just said "We don't have any" and I would have been on a wild goose chase all around the Treasure Valley.) We left a message for Ashley about this issue and went over to do blood work.
Ashley called around 4:20, and Dr. Mallea had just left. She found someone else to write the script and we raced up to their office to pick it up.
We also got a call from DaVita, so we'll go over there on Friday at 1:30.
Off we went to the pharmacy, but it turns out they don't even make the strength of medicine Chris was prescribed. (And a sincere thank-you to the gentleman at Walgreen's that told us. He could have just said "We don't have any" and I would have been on a wild goose chase all around the Treasure Valley.) We left a message for Ashley about this issue and went over to do blood work.
Ashley called around 4:20, and Dr. Mallea had just left. She found someone else to write the script and we raced up to their office to pick it up.
We also got a call from DaVita, so we'll go over there on Friday at 1:30.
Sunday, December 11, 2011
And Out It Goes
Chris decided he'd had enough of the catheter, so I called Urgent Care in Eagle to make sure they had the order for tomorrow morning. Neither of the gals there had seen the order but the receptionist said that they could go ahead and do it whenever, it's a fairly easy procedure. And she added, "We're open 'till 10."
I mentioned to Chris that they could do it right then, and he stood up and was ready to roll. I went upstairs, got dressed, and drove him down there.
The nurse recognized me and said, "Kim, right?" Guess that makes us regulars.
Anyway, cath came out. They tested some urine to make sure he didn't have the beginnings of a urinary tract infection (which is the biggest complication of cath removal). Test was good. Ross happier. We were in & out in under 25 minutes.
Tonight, Chris noticed more blood on his bandage that covers the surgical incision. We'll keep an eye on it and call the surgeon if it gets any worse.
I mentioned to Chris that they could do it right then, and he stood up and was ready to roll. I went upstairs, got dressed, and drove him down there.
The nurse recognized me and said, "Kim, right?" Guess that makes us regulars.
Anyway, cath came out. They tested some urine to make sure he didn't have the beginnings of a urinary tract infection (which is the biggest complication of cath removal). Test was good. Ross happier. We were in & out in under 25 minutes.
Tonight, Chris noticed more blood on his bandage that covers the surgical incision. We'll keep an eye on it and call the surgeon if it gets any worse.
Saturday, December 10, 2011
Not in the mood
So they Cath'd me. I have to have it in until Monday. It hurts to stand and it hurts to move around (and part of the tube has been inadvertently pulled by me, one of my cats, or Kim at one point or another). When they take the catheter out if everything works like it is supposed to it's going to be a very happy day.
Another fun fact about surgery, when they put you under general anesthesia your bowels tend to shut down for a few days. They are pretty slow to wake up but I have started passing a little gas which is a good sign, hopefully by Monday everything will be back to normal (as can be) or I am gonna start freaking out.
The transplant team called and temporarily turned me down for a transplant. They are concerned my heart will not support a new kidney. At first they told me I was going to have to have my valve replaced and once I recovered from that I could go on the transplant list, but they called back later (I think she heard the frustration in my voice) and said that after 2 months of dialysis if my heart looked better they would do the transplant without the valve surgery, so given the healing time required for the home PD catheter. It will be about 10 weeks before I find out if I am eligible for a transplant or not.
It's frustrating because not 1 but 2 cardiologists both signed off on me getting a transplant (theirs and mine) and now they change their mind on me. I'm pretty grumpy today, so I'm just not in the mood.
Another fun fact about surgery, when they put you under general anesthesia your bowels tend to shut down for a few days. They are pretty slow to wake up but I have started passing a little gas which is a good sign, hopefully by Monday everything will be back to normal (as can be) or I am gonna start freaking out.
The transplant team called and temporarily turned me down for a transplant. They are concerned my heart will not support a new kidney. At first they told me I was going to have to have my valve replaced and once I recovered from that I could go on the transplant list, but they called back later (I think she heard the frustration in my voice) and said that after 2 months of dialysis if my heart looked better they would do the transplant without the valve surgery, so given the healing time required for the home PD catheter. It will be about 10 weeks before I find out if I am eligible for a transplant or not.
It's frustrating because not 1 but 2 cardiologists both signed off on me getting a transplant (theirs and mine) and now they change their mind on me. I'm pretty grumpy today, so I'm just not in the mood.
Friday, December 09, 2011
Early Morning Trip to St. Luke's
Chris didn't have any luck trying to urinate since being catheterized yesterday. He was in a lot of pain and experiencing a significant amount of bladder pressure this morning. He woke me up shortly after 7 and we went back to St. Luke's Eagle for another catheter. His dry mouth is so bad that chewing food is a problem, so we're hoping they can change his pain meds, too.
This time, he had 880ml of fluid drained. They did not change his pain meds, though. An early call to Dr. Giles' office didn't bear any fruit because we didn't recall the name of the medication that Chris had received from Dr. Mallea during this last bout with gout. Hopefully Dr. Mallea's office will call us soon with that info. (They opened 20+ minutes ago, so it shouldn't be long now.
Also, hoping today for a call from U of U with good news. Fingers are crossed.
This time, he had 880ml of fluid drained. They did not change his pain meds, though. An early call to Dr. Giles' office didn't bear any fruit because we didn't recall the name of the medication that Chris had received from Dr. Mallea during this last bout with gout. Hopefully Dr. Mallea's office will call us soon with that info. (They opened 20+ minutes ago, so it shouldn't be long now.
Also, hoping today for a call from U of U with good news. Fingers are crossed.
Thursday, December 08, 2011
One Hospital Visit Becomes Two
This morning started out very early. We were to report to Saint Alphonsus by 7:15. We were on time and the registration process was pretty painless. Chris had received 2 phone calls over the past 2 days for pre-surgery questions and pre-registration questions, so most everything was already done.
The surgery was very quick... only 20 minutes or so. The surgeon, Dr. Giles, came out to tell me that everything had gone well and Chris would be in the recovery room where I could be with him in about 45 more minutes. During this period I called his mom to tell her he was doing fine. I was also hoping to get something to eat. The surgical wing is right next to the cafeteria. It's almost like torture to force the poor patients who haven't eaten since midnight to smell the yummy food! Unfortunately for me, the cafeteria's great-smelling goodies were only being served to staff and their guests for their annual holiday party.
As soon as they brought me back to see Chris, he started complaining about shoulder pain. I thought at first maybe it was because they had to shift him around on the operating room table. One of the nurses to whom we mentioned this said that the gas bubble from laparoscopic procedures often aggravates a nerve in the diaphragm and makes the shoulders hurt. Isn't that weird? You can read more about that HERE.
He had a very bad case of dry mouth. He got some ice chips, orange Jell-O, apple juice and beef broth. He couldn't urinate despite 2 tries, but the nurse didn't seem too concerned. She measured 360ml of fluid in his bladder, but said they don't get concerned until it's 600ml or above. She recommended drinking extra fluid and said that would help him. Also, she said that Kegel exercises would be a good idea for him. (What? Kegels for men?! Who knew?) We left the hospital around 2:00 and then went to Costco to fill his pain medication. We headed home after this and both tried to get some sleep.
Just after 6:00, Chris woke me up and said he was feeling a lot of pressure but despite additional attempts was unable to pee. He called the number listed on the hospital discharge instructions, but nobody was there. The surgeon's nurse on his answering service did call us back, and she recommended that we head to an ER to get him some relief. We got dressed and headed to St. Luke's Eagle which is just shy of 2 miles from home. There was only one other patient there (a very unhappy crying baby) so he got seen quickly. The nurse inserted the catheter and Chris filled 2 containers with fluid (975ml!). He felt better almost instantly! The nurse there said that his prostate seemed to be causing the urethra not to be able to open enough, but that this catheterization should allow the urine to flow again.
We are home again and hoping he is able to void on his own tomorrow so we can avoid another trip to the doctor -- and another painful cath.
Today was supposed to be the meeting at U of Utah's transplant committee and they were scheduled to discuss and vote on Chris' application. We didn't hear from them today, so we're hoping to have an answer tomorrow.
Upcoming scheduled doctor's visit: Dr. Mallea in Boise at 12:40 on Wednesday, Dec. 14th.
The surgery was very quick... only 20 minutes or so. The surgeon, Dr. Giles, came out to tell me that everything had gone well and Chris would be in the recovery room where I could be with him in about 45 more minutes. During this period I called his mom to tell her he was doing fine. I was also hoping to get something to eat. The surgical wing is right next to the cafeteria. It's almost like torture to force the poor patients who haven't eaten since midnight to smell the yummy food! Unfortunately for me, the cafeteria's great-smelling goodies were only being served to staff and their guests for their annual holiday party.
As soon as they brought me back to see Chris, he started complaining about shoulder pain. I thought at first maybe it was because they had to shift him around on the operating room table. One of the nurses to whom we mentioned this said that the gas bubble from laparoscopic procedures often aggravates a nerve in the diaphragm and makes the shoulders hurt. Isn't that weird? You can read more about that HERE.
He had a very bad case of dry mouth. He got some ice chips, orange Jell-O, apple juice and beef broth. He couldn't urinate despite 2 tries, but the nurse didn't seem too concerned. She measured 360ml of fluid in his bladder, but said they don't get concerned until it's 600ml or above. She recommended drinking extra fluid and said that would help him. Also, she said that Kegel exercises would be a good idea for him. (What? Kegels for men?! Who knew?) We left the hospital around 2:00 and then went to Costco to fill his pain medication. We headed home after this and both tried to get some sleep.
Just after 6:00, Chris woke me up and said he was feeling a lot of pressure but despite additional attempts was unable to pee. He called the number listed on the hospital discharge instructions, but nobody was there. The surgeon's nurse on his answering service did call us back, and she recommended that we head to an ER to get him some relief. We got dressed and headed to St. Luke's Eagle which is just shy of 2 miles from home. There was only one other patient there (a very unhappy crying baby) so he got seen quickly. The nurse inserted the catheter and Chris filled 2 containers with fluid (975ml!). He felt better almost instantly! The nurse there said that his prostate seemed to be causing the urethra not to be able to open enough, but that this catheterization should allow the urine to flow again.
We are home again and hoping he is able to void on his own tomorrow so we can avoid another trip to the doctor -- and another painful cath.
Today was supposed to be the meeting at U of Utah's transplant committee and they were scheduled to discuss and vote on Chris' application. We didn't hear from them today, so we're hoping to have an answer tomorrow.
Upcoming scheduled doctor's visit: Dr. Mallea in Boise at 12:40 on Wednesday, Dec. 14th.
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