Well, the see-saw labs continue. Glenn's white count was better so he doesn't have to be AS careful as he was the first of the week, but still wear a mask in crowds. However, his kidney function seems to be trending back down; it was down from 18% function Tuesday to 15% yesterday, (Thursday). So far there's no explanation for that. Still, Glenn is very happy that he can go out, even with a mask. It means he can go flying this weekend as well as broadcast a radio show from the same air show. He's happy with that. We don't have any Dr. appt.s next week. Yea!!!! We get a week off!!!
Friday, March 9, 2012
Tuesday, March 6, 2012
Labs, labs, labs, how they control our lives
Well, today didn't go the way Glenn had hoped it would at his G'ville visit. His blood counts were lower again and he has to be REALLY careful about keeping away from crowds and possible infections. He was/is pretty bummed. He had to cancel some plans for this week and is hoping that when he goes back Thursday that the labs will be better. He got a shot to get his white cell count up and a shot to get his red blood cell count up. He didn't have to have blood or platelets yet. On a happier note, he talked to his nephrologist today and he can hold off scheduling the access placement because his kidney function has gotten better the last two times it was checked. The Dr. said we will have to see what the trend is, up or down or steady. That was encouraging.
Yesterday Glenn installed a water purifier in the kitchen sink and he used muscles he hasn't used for a loooonnnngggg time. Last night he got some terrible cramps in his hands. It was very concerning to me because I didn't know if it was that his potassium was really low, or if it was a side effect from the antibiotic he started taking. The cramps finally subsided after he sat still and kept his hands still. His potassium level today was fine, and the Dr. wants him to continue taking the antibiotic and if the cramps happen again we are to call.
I'm feeling a little insecure because both his nephrologist and oncologist will be out for a week. Of course, they always have someone to cover for them, but nobody else has kept up with his treatment and condition. So please pray that nothing drastic happens at least while the Dr.s are gone. Not that I want anything drastic to happen anytime, but you know what I mean. When we go back to G'ville the day after tomorrow, Thursday, Glenn is really hoping his blood counts will be better and he can get out and about. He has plans to go to an air show in Lake City and do a radio broadcast there this Saturday. He is really looking forward to it and is hoping that he won't have to cancel because of his blood counts. I'll definitely keep you posted.
Yesterday Glenn installed a water purifier in the kitchen sink and he used muscles he hasn't used for a loooonnnngggg time. Last night he got some terrible cramps in his hands. It was very concerning to me because I didn't know if it was that his potassium was really low, or if it was a side effect from the antibiotic he started taking. The cramps finally subsided after he sat still and kept his hands still. His potassium level today was fine, and the Dr. wants him to continue taking the antibiotic and if the cramps happen again we are to call.
I'm feeling a little insecure because both his nephrologist and oncologist will be out for a week. Of course, they always have someone to cover for them, but nobody else has kept up with his treatment and condition. So please pray that nothing drastic happens at least while the Dr.s are gone. Not that I want anything drastic to happen anytime, but you know what I mean. When we go back to G'ville the day after tomorrow, Thursday, Glenn is really hoping his blood counts will be better and he can get out and about. He has plans to go to an air show in Lake City and do a radio broadcast there this Saturday. He is really looking forward to it and is hoping that he won't have to cancel because of his blood counts. I'll definitely keep you posted.
Friday, March 2, 2012
Unpredictable lab counts
Hello all you faithful followers. I have three Dr. visits to tell you about. We went to Glenn's Wed. appt. with the oncologist in G'ville and his blood counts were down so he wanted him to come back today and possibly get some platelets and/or blood. His kidney function was about the same: 18% down from 19%, which is not a big deal, just depends on whether it's a trend in one direction or the other. We also did Glenn's "prep" to have the access placed at sometime in the near future. That just involved getting an EKG and talking to the anesthetist. The surgeon wanted Glenn to have the surgery done the following day, but we told him that we want to see the nephrologist first, because of his kidney function increasing and to make sure that he should go ahead with it. So that is on hold for now until this next week when we see the nephrologist.
Our visit today ended up with Glenn not having to receive platelets or blood, yet. His platelet count went up a little so the Dr. held off on that. His blood count didn't go as low as the Dr. thought it would so he didn't have to get blood, yet. He wanted Glenn to come back Monday but he has appt.s with the VA Dr.s so we go back Tuesday to see if he needs the platelets and/or blood. He also will get a shot to get his white blood cells to hurry up and mature because those keep going down. The result of that for now is that he has to stay away from crowds, or wear a mask when he's out, and he can't eat any fresh fruits and vegetables, raw meat, or anything that comes out of a dispenser. These are all to keep his risk of exposure to bacteria down. So he has a list of things he wants to get done this weekend around here, since he can't go out. He still is feeling pretty well. His swelling in his legs has gone down a little bit because I made him take the second diuretic he has for when he is too swollen. He still needs to take another one to get it down better. I just wonder what would happen if we left his body alone and didn't keep messing with all the levels by taking so many meds. But we won't do that. He is feeling pretty well these days so we won't mess that up. I'll be back here next week to fill you in on all his appointments. And I'll let you all know if and when he gets a radio show going. That won't be for a while yet.
Our visit today ended up with Glenn not having to receive platelets or blood, yet. His platelet count went up a little so the Dr. held off on that. His blood count didn't go as low as the Dr. thought it would so he didn't have to get blood, yet. He wanted Glenn to come back Monday but he has appt.s with the VA Dr.s so we go back Tuesday to see if he needs the platelets and/or blood. He also will get a shot to get his white blood cells to hurry up and mature because those keep going down. The result of that for now is that he has to stay away from crowds, or wear a mask when he's out, and he can't eat any fresh fruits and vegetables, raw meat, or anything that comes out of a dispenser. These are all to keep his risk of exposure to bacteria down. So he has a list of things he wants to get done this weekend around here, since he can't go out. He still is feeling pretty well. His swelling in his legs has gone down a little bit because I made him take the second diuretic he has for when he is too swollen. He still needs to take another one to get it down better. I just wonder what would happen if we left his body alone and didn't keep messing with all the levels by taking so many meds. But we won't do that. He is feeling pretty well these days so we won't mess that up. I'll be back here next week to fill you in on all his appointments. And I'll let you all know if and when he gets a radio show going. That won't be for a while yet.
Saturday, February 25, 2012
Whew! A busy week, but a good one.
We just got internet back today after our move this week, so I can give you an update from Wed.'s Dr. visit. And it is good news: Glenn's kidney function has gotten even better. It had gotten down to 9% function and went to 11%, then 15%, and now 19%! We don't know why, but the Dr. is even more convinced it's because there is something else going on to cause the function to drop besides the original diagnosis of Light Chain Deposition Disease and that it is responding to the chemo. Probably the only way to find out is to do another kidney biopsy, but the nephrologist doesn't want to do that if not absolutely necessary because Glenn has already had two kidney biopsies and the neph. Dr. said it's with the third one that he has seen problems with bleeding in his experience. But whatever it is, the Oncologist in G'ville is very pleased at the improvement.
Glenn also had a consultation with the vascular surgeon and he will be having surgery to have an access placed. It takes about 4 months for it to be ready to be used (for dialysis) and we don't want to have emergency dialysis if that scenario occurs. We, (the Drs. and we) want to be ready for it when it becomes necessary. That was about to happen when his function was at 9%. That's why the Dr told us at that time to come back prepared to be admitted. But it did get a little better at the next visit so we were able to hold off. God has been so good to Glenn with not having to go on dialysis. That is his prayer and what he has been requesting people to pray for. As I have mentioned before, he has been feeling better, so he is working on getting a program on the radio again and feeling like he can be useful in some way.
I am soooo glad our move is over. This was probably the hardest move I personally have done, physically. You would think it would be the easiest since we were only moving about two blocks away. But I think that's one reason it was the hardest, since we did it over three days instead of one grand move. Glenn can't lift much at all so I did 90% of the moving, and Thursday the muscles came and did the heavy furniture. My lesson learned is to just do it all in one day when I have the strong people to move things. Between moving Tues., Wed., and Thurs., and going to G'ville Wed. and Fri. and staying up till 2:30 putting the kitchen together, I was so exhausted that I didn't get up today until 2:30 this afternoon. And did it ever help! We still have a mess to get organized. We don't have as much space as we moved from so it's creating a problem trying to arrange the furniture in a functional way. Even Glenn, the logistics major, hasn't figured it out yet. Still, I am glad the moves are over and we can settle in and feel at home now.
We go back to G'ville this coming Wed. to have his labs done because some of it isn't up to what it should be and is, in fact, continuing to fall, so the Dr. wants to check it and see what it does this week. So, I'll be back after that visit to fill you all in. Thank you for hanging in there with us.
Glenn also had a consultation with the vascular surgeon and he will be having surgery to have an access placed. It takes about 4 months for it to be ready to be used (for dialysis) and we don't want to have emergency dialysis if that scenario occurs. We, (the Drs. and we) want to be ready for it when it becomes necessary. That was about to happen when his function was at 9%. That's why the Dr told us at that time to come back prepared to be admitted. But it did get a little better at the next visit so we were able to hold off. God has been so good to Glenn with not having to go on dialysis. That is his prayer and what he has been requesting people to pray for. As I have mentioned before, he has been feeling better, so he is working on getting a program on the radio again and feeling like he can be useful in some way.
I am soooo glad our move is over. This was probably the hardest move I personally have done, physically. You would think it would be the easiest since we were only moving about two blocks away. But I think that's one reason it was the hardest, since we did it over three days instead of one grand move. Glenn can't lift much at all so I did 90% of the moving, and Thursday the muscles came and did the heavy furniture. My lesson learned is to just do it all in one day when I have the strong people to move things. Between moving Tues., Wed., and Thurs., and going to G'ville Wed. and Fri. and staying up till 2:30 putting the kitchen together, I was so exhausted that I didn't get up today until 2:30 this afternoon. And did it ever help! We still have a mess to get organized. We don't have as much space as we moved from so it's creating a problem trying to arrange the furniture in a functional way. Even Glenn, the logistics major, hasn't figured it out yet. Still, I am glad the moves are over and we can settle in and feel at home now.
We go back to G'ville this coming Wed. to have his labs done because some of it isn't up to what it should be and is, in fact, continuing to fall, so the Dr. wants to check it and see what it does this week. So, I'll be back after that visit to fill you all in. Thank you for hanging in there with us.
Sunday, February 19, 2012
oops, sorry I've been away so long.
Wow! I did not realize it's been so long since I made an entry here. Again, no news is good news. Glenn has continued to feel better and has gotten the itch to work and to have a radio program again. Problem is that he can't really make commitments because we don't know how he will be doing at any given time. He's working on a couple things, though, that don't require a commitment of time.
We get the keys to our next place this Tuesday afternoon so we can get all the stuff moved that I can move, which should be a lot. The big and heavy stuff we will get moved Thursday night when we can get the muscles over here. In the middle of that, on Wednesday Glenn has an appointment for chemo treatment in G'ville. So we've had a week "off" and now the busy week begins, which I am glad to be entering. I feel so useless when we don't have anything planned.
That's about all there is to tell you today. I'm sure there will be more to report after our G'ville visit, but I don't know when I'll be able to get to share anything with you since we will be in the middle of moving as well. So be patient and I'll report to you as soon as I can.
We get the keys to our next place this Tuesday afternoon so we can get all the stuff moved that I can move, which should be a lot. The big and heavy stuff we will get moved Thursday night when we can get the muscles over here. In the middle of that, on Wednesday Glenn has an appointment for chemo treatment in G'ville. So we've had a week "off" and now the busy week begins, which I am glad to be entering. I feel so useless when we don't have anything planned.
That's about all there is to tell you today. I'm sure there will be more to report after our G'ville visit, but I don't know when I'll be able to get to share anything with you since we will be in the middle of moving as well. So be patient and I'll report to you as soon as I can.
Wednesday, February 8, 2012
Improvement
Our visit to Shands-G'ville today was encouraging. Glenn's labs showed that his kidney function improved again! Now he is on the cusp between stage 4 and stage 5 (renal failure). The oncologist thinks there is something else going on with the kidneys besides the Light Chain Deposition Disease that was damaging his kidneys and that the chemo is what is causing the kidneys to improve the way they are. Glenn is being referred to a nephrologist there at Shands-G'ville for that reason and to get him ready for the dialysis accesses to be done there. That way the accesses can hopefully have time to heal before they have to be used. When Glenn does have to go on dialysis, he can have it done locally, we're pretty sure. We really like, and are very confident in his nephrologist here, but he agrees it wouldn't hurt to get another set of eyes on all this.
Glenn will continue to have chemo every three to four weeks indefinitely and has to stay on steroids as well. He continues to feel pretty well and his energy level has improved so that he doesn't have to rest most of the day like he used to. We are so retired people: we like to go to the grocery store and we have opinions about which ones we like to go to. We go together everywhere, just about, esp since we are a one-car family now. That has really worked out well. He lets me have a "me-day" whenever I need it to just go off by myself as long as I want for the day. I find it sooo refreshing to do that. I usually wander around malls and other stores aimlessly, and treat myself to something good to eat. :-) So it needs to be when we have a few extra dollars. Actually, thinking about it, I'm about ready for one again.
Got your message, Dr D.S. Thank you for letting me know that you are keeping up with this regularly.
I want all of you to know that your prayers and encouragement have been the reason Glenn is doing so well. So keep up the good work!
Glenn will continue to have chemo every three to four weeks indefinitely and has to stay on steroids as well. He continues to feel pretty well and his energy level has improved so that he doesn't have to rest most of the day like he used to. We are so retired people: we like to go to the grocery store and we have opinions about which ones we like to go to. We go together everywhere, just about, esp since we are a one-car family now. That has really worked out well. He lets me have a "me-day" whenever I need it to just go off by myself as long as I want for the day. I find it sooo refreshing to do that. I usually wander around malls and other stores aimlessly, and treat myself to something good to eat. :-) So it needs to be when we have a few extra dollars. Actually, thinking about it, I'm about ready for one again.
Got your message, Dr D.S. Thank you for letting me know that you are keeping up with this regularly.
I want all of you to know that your prayers and encouragement have been the reason Glenn is doing so well. So keep up the good work!
Monday, February 6, 2012
Rolling the ball along
Thought I'd fill you in while today's activities are still fresh in my head. Glenn had his first visit at the VA. I have to say they lived up to their reputation with me: not good. Glenn says they were actually more efficient than he expected. I say they move cattle well. The Dr. was not at all impressive, which was a disappointment because I had heard that the Dr.s were better than they used to be. But, sadly, not here. Anyway, we will be able to get his Rx's for cheap. The rest of the care is yet to be determined.
At any rate, we also saw the nephrologist today. We gave him the G'ville oncologist's cell phone number, which I had saved when he had called once a while back and the neph. called him right then while he was with us in our appt. They are putting together a plan to get Glenn's fistula and peritoneal catheters placed soon. Finally we've got the ball rolling with that. I hope we will have specifics Wednesday when we go to G'ville for his next appt. there.
Aside from that, we got a definite date when we will be moving to our "permanent" house: Feb. 23, a Thursday. We have to be out of here by that date because they've got to get it ready for new residents to move in by the 1st. At this point we can't get into the next place any earlier than the 23rd but I'm hoping that will change and we can at least move boxes ahead of the move date. But it's all good. We'll be settled soon.
Thanks everyone for your faithfulness in following us. You're the wind beneath our wings!
At any rate, we also saw the nephrologist today. We gave him the G'ville oncologist's cell phone number, which I had saved when he had called once a while back and the neph. called him right then while he was with us in our appt. They are putting together a plan to get Glenn's fistula and peritoneal catheters placed soon. Finally we've got the ball rolling with that. I hope we will have specifics Wednesday when we go to G'ville for his next appt. there.
Aside from that, we got a definite date when we will be moving to our "permanent" house: Feb. 23, a Thursday. We have to be out of here by that date because they've got to get it ready for new residents to move in by the 1st. At this point we can't get into the next place any earlier than the 23rd but I'm hoping that will change and we can at least move boxes ahead of the move date. But it's all good. We'll be settled soon.
Thanks everyone for your faithfulness in following us. You're the wind beneath our wings!
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