day 4

We're still here in the hospital on day 4. I hesitate to give any info on what will be done next, because as sure as I say something it will change. The vascular surgeon saw Glenn this morning, the one who will place the fistula, and he said he couldn't do the surgery Monday because the schedule is packed, and he is off Tuesday so we're hoping for Wednesday. Which means that if the other 3 Dr.s have no reason to keep him, he MIGHT go home today. But don't quote me on that. We'll know when we are home if he is going home. And we'll know when he actually has the fistula in his arm when it's going to happen. And even which hospital he has it done at, for that matter.
The Dr.s are assuming that the temp that Glenn had Thursday night was what we thought it was from: the blood transfusion. He's been ok since then. He feels ok, and we went for a short walk around the unit, today. He looks pretty scruffy, though, since he hasn't shaved for several days, and his hair has thinned out a lot since he's been on the chemo. He says he looks like a sick old man. That's a pretty accurate description. If it didn't take me 8 hours to figure out how to get pictures on this site, I'd show you.
We're going to try to take a nap while it's quiet, so shhhhh. Thanks.

Day 2

Day 2 of hospitalization has been busy  for Glenn. He's had several tests and is getting his second unit of blood right now.
His labs in the ER showed some possible heart involvement, but all the tests done since then haven't revealed any problems and the cardiologist doesn't see any reason to follow Glenn any more. There still has been no source found for the fever, everything has been clear. The infectious disease Dr. said that if his temp remained in the normal range she would stop the IV antibiotics and could release him from her care tomorrow. But this evening  his temp has started going up. We're hoping it is just a mild reaction to the blood transfusions.  The nephrologist says Glenn's kidney function is the same, so after discussion , we agreed for him to set up the surgery for the fistula here while Glenn is in the hospital, but it can only be done after the fever has been resolved. So I don't see him being released tomorrow.
The night nurse tonight said Glenn's color looks better from last night, since he has gotten the blood. I hadn't noticed his color being pale, I guess since I've been with him constantly and wouldn't notice a change. He is feeling ok, other than understandably being tired. Besides his health problems, he did lose two nights' sleep being in 2 ERs. As usual, if you talk to him on the phone you wouldn't notice any signs of him being sick from his voice. It's not that he's putting up a front, it's really how he feels and how he talks on the phone.
My brains are a little mushy and I don't know what else you all would like to know. So send me any questions you have on the comment section or e-mail me and I can fill you in.

...continuing....

Yesterday after we got home from the G'ville ER and  I got everything unpacked, Glenn took his temp and it was higher than it had been the previous day. So I called G'ville to find out  what we should do and we were told to go to our local ER. So guess what we did! We did what we were told this time. It was still crazy busy in the ER, but I had asked the PA in G'ville to call ahead and tell them that he needed to be seen right away. So we did have to wait a while but they understood the situation and got us into a  room as soon as they could.  We spent a second night in the ER and we were told early on that he would definitely be admitted. They ran several tests and started the IV antibiotics while we were there before we got to a room upstairs. So they are continuing to do many different tests to try to determine where there is infection. So far, no source has been found. His temp has gone down and he is feeling better but they will continue the IV antibiotics, though we don't know for how long. Unfortunately, for the second time we had to cancel the surgery for the fistula that was to take place tomorrow, and he really needs to get that done because his kidney function is at dialysis level now. He may end up having to have a "central line" placed to do the dialysis before the fistula can be placed and healed. The concern there is that those can easily be introduced to infection which can quickly lead to sepsis. But it may have to be the route we use until a fistula can be placed and matured. This is where God shines: where we have our backs against the wall. So, with your prayers, we will be able to put off the dialysis. until the fistula is ready to be used.  Already Glenn has stayed off dialysis months longer than was expected And that is a result of all your prayers for him. So there is your new prayer request challenge.
Glenn's sister is doing much better and is off the ventilator, although still in ICU. His mother hasn't had any more problems arise from her fall. His sister says Martha has a pretty bad black eye and bruising on one side of her face. But she seems to be back to her normal self.
Thank you all so much for your concern and for faithfully keeping up with Glenn through this blog and your prayers. That has made this experience so much easier than it could have been. I'll be back again soon to keep you all up to date.

Whew, what a ride!

It's been an interesting past 24 hours. Started out that I called the P.A. (physician's assistant) in G'ville because Glenn has been having a low temp. She talked to the Dr. and he said to go to our local ER and be sure to tell them that he is at great risk for catching infections because his white blood cell count was so low when we were there last week. So after I got some stuff packed, and Glenn fiddle-farted around we went to one of our local ERs. But when we got there, it was PACKED. So we decided to just go to G'ville.  It was quite busy, as well. (Here's your tip for the day: try to never go to the ER on Mondays. Apparently Monday is notorious for being very busy in the ER). Oh, back up: before we left the house, our brother-in-law called to tell us that Glenn's sister, who has been on dialysis for several years, was on a ventilator and thought to be sceptic, (bad, bad infection in the body.) Not looking good there. While we were waiting for four hours to be seen in the ER in G'ville we got two calls from the nursing home where Glenn's mom lives (who is 94, with Alzheimer's). She had fallen and they needed to send her to the  ER for stitches on her head. We couldn't be there for her either. Neither of us can see either one of them because of Glenn's risk of easily catching an infection. Luckily his other sister was able to go to see their sister and then go with Martha to the ER. (Everyone at a different hospital). Martha is having some issues from the fall and we are keeping a close vigil  by the phone. 

We got into a room in the ER at midnight, and after having a bunch of lab tests, Glenn was sent on his way at 6AM, and not admitted as we expected to happen, because his white blood cell count was better. So we hung around until the clinic opened up to see his Dr. and we did get to see him, instead of having to go back  tomorrow for his scheduled appointment.  9We got a moderately stern rebuke from the PA for not following directions and going to a local ER, because if Glenn was to become sceptic, which is the risk with his counts being so low last week, it could happen in a very short time and if we were driving in a car to G'ville there's nothing that we could do. If we were in a local ER, even if we had to wait a long time, at least if he became sceptic it would happen in an ER where he could get immediate treatment.) The Dr. clarified what he thinks will be the plan, depending on the results of a bone marrow biopsy Glenn will have next week. He wants to do some heavy doses of chemo for a week and then the same the following month. And then the stem cell transplant possibly in the early fall. All this depends on the results of the bone marrow biopsy. If this is making your head spin, I'm there with ya! Glenn is just going along for the ride.

Back to his sister, I'm going to find out in a few minutes what's happening with her. His other sister, poor thing,  is pulled in several directions right now. She was up all night with Martha in the ER, and then had to go to work. Luckily she has tomorrow off. But please include her in your prayers. There are no other siblings to keep up with, praise the Lord! Just the three of them, and Martha. That's plenty to handle.

So hopefully I've filled you in on everything. I will continue to keep you up on the latest happenings in the Boyles family saga as they occur, or as soon as I can. Whether or not Glenn has the surgery for the fistula this Thursday remains to be seen, depending on his fever status........to be continued.........

Bombs dropping

I debated whether to make an entry tonight, or to wait until tomorrow or the next day when I'm a little more settled about our visit to the oncologist today. But here I am. I'm probably making all this out to be much more than it is.
Long story short: Glenn's kidney function/lab values were not what the Dr. had hoped they would be with the steroids and chemo regiment he's had Glenn on. So the Dr. wanted to admit him next week to do another stem cell transplant and use different chemo than was used with the first transplant. He wants to get the light chain production, the disease that is causing all the problems, under control. But since Glenn is scheduled for his fistula to be placed next Thursday, the Dr. will wait until that incision is healed. The stem cell transplant entails dropping a bomb of chemo in his body to kill the darn things, (the excess light chains), which totally wipes out his immune system and makes him totally open to infection and inability to heal. Then two days later give him back his stem cells that have been frozen from the harvest with the first transplant. Those will eventually grow and cause his immune system to increase. The Dr. also mentioned giving Glenn a large dose of chemo for six days and again in another month. I don't know which is going to happen. I just know he has taken a long look at Glenn's body's response to what he's been doing so far  and it is't getting him into remission/ getting the light chains to a normal level. We know the kidneys are pretty much toast at this point, but the disease, if not gotten under control, can affect other organs, ie heart, lungs, liver, colon, brain, if it hasn't already.
At this point I'm pretty much speechless. Glenn, on the other hand, is pretty nonchalant about it. I think he's more focused on the surgery for the fistula next week, understandably. He's happy that with today's work up for the fistula they found a good vein in his left arm this time. He had hoped for that rather than having it in his right arm. That's not the final decision. That will happen by the surgeon during the surgery next Thursday. But at least there's hope for the left arm to be used for the fistula.
So that's where we are as of today, folks. Prayers, good thoughts, etc, please.

Just another week in paradise

Last week, was the first time since Glenn had his stem cell transplant, that the chemo has had any adverse  affect on him. By the third day after treatment he was totally wiped out and not too interested in most foods. He started feeling better by the 6th day, (Sunday) but is still recovering. We don't really know why it was different this time.
This week at his Dr. visit in G'ville, we got to discuss why continuing the chemo is necessary. He believes it is helping to curb the LCDD and the unknown disease that he thinks exists that is affecting the kidneys. Since he mentioned his suspicions about an auto immune disease, I asked if there was a blood test for that. But he said not for a kidney disease. There is a blood test for other auto immune diseases, but not for what he suspects is happening to the kidneys. Probably could find out with another kidney biopsy but neither the oncologist nor the nephrologist want to take the increased chance of bleeding with a third kidney biopsy. We go to the nephrologist next Tuesday and will be able to relay that info to him. Maybe this time he will remember to call the oncologist and discuss all this. It would make me feel better if they would have regular communication about Glenn's treatment.
Glenn never did get a call back about the fistula. He (the Dr.) was on vacation. So we should get a date for pre-surgery, and then the placement, soon.
 As you can imagine, Glenn is NOT looking forward to another foreign object dwelling in his body. (He has a "port" in his right front, or anterior for you medical people, shoulder which is used for accessing blood without having to search for a vein.) But he knows that it is a pretty sure bet that he will be on dialysis this year so the fistula has to have time to "mature" for a few months before it can be used. (Please forgive me for repeating things. I don't remember what I've told you and what I haven't.)
Wednesday we went to G'ville for his usual appointment. His white blood cell count went down very low, an effect of the chemo, so he is restricted from a lot of things because he is extremely susceptible to any kind of infection. Other than that, his labs weren't remarkable, not normal, but not varied from the last week. His kidney function went to 13% from 11% the week before. It has been hovering around there for a while. (This  value is the percentage of kidney function compared to 100% which is a normal value.) At this level the Dr.s are judging by any symptoms he may have in deciding when to start dialysis. So far he hasn't had any that are noteworthy.
I don't know how to wind this up, so  that's it for now.

Back to the subject of dialysis

It's Wednesday already and I haven't filled you in on Monday's visit to G'ville. I'll fix that right now.
Glenn had his chemo treatment without any problems. We were disappointed that his kidney function went down again to11%. The Dr. seemed pretty disappointed about that and asked if Glenn had made an appointment for the fistula, which he hadn't yet. So he (Glenn) called to set up an appointment with the vascular surgeon. We don't have a date for it yet. We go back this coming Wednesday to his regular check up and hopefully they will have given him an appointment with the surgeon for that day as well.
It's just hard to believe that Glenn's kidneys are functioning at such a low level because to look at him you wouldn't know anything was wrong with him. He is tired sometimes from the chemo, and retains fluid from the steroids, but other than that he doesn't have any obvious outward symptoms of kidney disease. He doesn't feel sick. I don't think his color shows any indication of how bad the function is, although I wouldn't describe him as having a pink complexion, but he hasn't for a long time. It hasn't gotten progressively worse with the reduction in his kidney function.
I've told you before that the Dr. believes there is something else going on with the kidneys besides the blood disease. Monday he mentioned autoimmune disease. I looked up treatment for that and it is just what the Dr. is doing for him: cytoxin (chemotherapy) and steroids. Next week I will ask him about doing a blood test for autoimmune disease because that is easily diagnosed from certain blood tests. I believe he was tested for that before his transplant. I looked through his lab tests, (I keep a copy of each one). He did had one and it was negative, so I have questions for the Dr. about that. Because of his theory about an autoimmune disease, he wants to start Glenn on chemo more often and by mouth (a pill), instead of IV and wants him to take it every other day, with steroid on the other days. If he starts that, it will be in three weeks when he's due for his next treatment.
 I am happy to report that his edema has gone down a lot and continues to go down. He says he feels much better and not so bloated now. He looks better and his clothes fit better, too. He also didn't need any blood products yet because his counts were still in the safe range. I won't say normal, just not to the point of needing anything. He has enjoyed doing work for Flighttime Radio, the program that he helped start several years ago. He's helping them with marketing and getting guests for the weekly Saturday afternoon show. He had  his "buddy", the sheriff  on a couple weeks ago to talk about the city's air fleet.
I didn't intend to ramble on so long. I must be getting that from Glenn! You all know how he can talk as long as you will listen. I sure know it! So I'll stop before I get that reputation.