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.

A quiet week

This week has been pretty unremarkable, so that's why it's been quiet here on the blog. Glenn got his semi-monthly shot for his red blood cell count yesterday, and his labs looked pretty good. They didn't test for his kidney function this time, but they will when we go back Monday for his chemo treatment. We suspect it's not getting any better because he has been very swollen for a couple weeks now. And we talked about shaving his head because he is shedding so much, we suspect either from poor kidney function or chemo treatments. He is dragging his feet about calling to schedule for the fistula to be placed. Can't blame him, can you? But it really needs to happen soon so it can "mature" for about four months and be available for use.
We  got our van back Saturday, yea!!!! Glenn keeps busy with insurance companies and the lawyer, when he's not getting treatment at the chiropractor or other Dr.s. I wish we could hire his own personal massage therapist. Seems like more and more parts of his body are needing to be massaged. He gets frequent foot massages from me, especially when they are as swollen as they are now. Also gets his shoulders massaged pretty often, usually when we are riding in the car. One thing we are very pleased about is that his ears have pretty much opened up since he stopped taking the high doses of steroids. It took several weeks for them to clear up, but now he can hear much better. When they were plugged up, he would talk quite loudly on the phone and I would remind him  that he was yelling. You may notice when you talk to him on the phone now that he is talking  normally.
Our daughter was home from New York last week for several days and we enjoyed her staying with us. She will be back permanently in a week and half and has rented an apartment in town. We will all be soooo glad to have her back here.
TTFN  (Ta ta for now).

Happy Anniversary to Us

This week we had two trips to the Dr. in G'ville. Monday was again a short day there. The Dr. wanted Glenn to return today to check on his white blood cell count because it continues to go down unexplainably. Today it went up ever so slightly. His kidney function went down a little. Glenn asked him what he thought about whether he should go ahead with having the fistula placed, and he said probably should because the function isn't staying above the borderline level. He, (the Dr.) seemed disappointed about it because he was hoping he had the answer to keeping it up. But it didn't work. Which was disappointing to Glenn as well. He said it's like admitting defeat. But he's not too down about it. He's resigned to it. So, in a nut shell, the original disease, Light Chain Deposition Disease, isn't arrested, and the kidneys continue to be damaged more and more by it. As I mentioned on facebook, in commenting on today being our 32nd anniversary, we were actually celebrating life just by the fact we are still going there, ie he is still alive. That is truly a celebration every day.

A short and sweet Dr. appt.

As I said in the last entry, we never know what to expect when we go to G'ville for Glenn's appt.s. Today was the shortest appt. we've had in a long time: in and out by noon! It seemed like a quiet day when we checked in because there wasn't anybody in the waiting room when we got there, although there were a couple people who came in after us. But we didn't have to wait too long for anything today. His kidney function continues to stay stable, (actually went from 15% last week to 16% today). His other counts were down from last week but not enough to be a concern yet. So he just got the shot he gets every  two weeks for his red blood cell count and we were out of there.
I should back up to yesterday's appt. with the nephrologist: bottom line is that he wants Glenn to go forward with getting the fistula placed. But we all agreed that Glenn would ask the VA Dr. to request a referral to the nephrologist there at Shands in G'ville. We tried to get him in there before but they don't accept medicaid, so we're thinking we can get it covered by the VA. And our neph. wants to get a new set of eyes from the nephrology view point on Glenn's case anyway. So that's our new strategy. Our nephrologist also wants to rethink having chemo treatments, what are we trying to accomplish with it. And if it's to save the kidney's, he thinks unless there is a significant improvement in the kidney function, his kidney's are probably too far damaged to try and save and decide if the chemo is necessary. He will talk to the oncologist about it all this week, hopefully and come to some determination about what we should do from here. I'm glad he is thinking this way, because I said I think it's time we step back and look at the situation and what we're doing and if we need to take a different strategy. Glad the Dr. agrees with me!
I want to add that Glenn has been much nicer this week, (since he completed the high dose steroids) :-) His swelling is ssslllloooowwwwlllyyy going down. He'll be glad to get back into clothes that are more becoming to him.
So, that's all for now. ( I think I might get to go play Mah Jongg tomorrow!!! But I don't want to say that too loud and jinx it.)

And the results are........

Good news- Glenn's  counts were good enough to avoid a bone marrow biopsy and was able to get his chemo. That sounds kind of convoluted, doesn't it. But Glenn was relieved he didn't have to get jabbed with that big needle, even if he doesn't remember the worst of it, and he doesn't know just how big the needle is. He does remember the wonderful high he has afterward from the Ativan. We never know what to expect when we go to G'ville to appointments. It could end up being a long, unproductive day,  a "short" day, a long day with stuff getting done, and we always are prepared in our minds for him to be admitted, even if he feels fine, but his labs are bad. Today was a long day, (left at 8am and back home at 7:30pm), but we got stuff  accomplished.Tomorrow he gets to go out on his own to the chiropractor and to the VA to pick up a Rx and get a hair cut. I get to be home alone! Ahhh, what shall I do? Cleaning and maybe hanging more things on the walls. Trust me, I won't do any more cleaning than I want to do! I never, hardly ever, get to be here all by myself, now that Glenn is retired/disabled. It's nice to be alone sometimes. Even though I can't go anywhere, I will enjoy the  alone time. And Glenn will enjoy being out on his own. We might like each other better after our times alone! (Just kidding, we like being together, too.) We go back to G'ville in a week.

"Now listen, you who say 'Today or tomorrow we will go to this or that city'....." (James 4:13)

Well, that week didn't go as I expected. First of all, Glenn hasn't been too hard to get along with. The steroids are really puffing him up. And I've had to remind him to be calm in stressful circumstances since he is more easily upset when on steroids. Like Tuesday afternoon when he had a minor car accident. He got hit from behind by a quickly moving car that didn't quite complete her lane change,,,,on Blanding,,,,,in busy afternoon traffic. And when the car wasn't in the parking lot where the officer told him to move it until he could get back from the ER, (he went to the ER to get xrays because his neck and back were hurting, but so far he's ok.) And when the officer on the phone told him there wasn't anything that could be done about the car being towed without his permission.That got straightened out. So now we get to "test drive" different rental cars. We had a nice new Caravan with all the bells and whistles, and then got a pick-up truck, which Glenn has wanted to get for a while now, so he can try it and see if he really wants one first, without actually buying one. The insurance company says our car can be repaired.Glenn is leery about that because the car isn't worth more than $3600 at the most, and he's pretty sure there was damage that the insurance company missed . We'll see.
He had a more pleasant experience with the VA Dr. at his second appointment. The Dr. says Glenn should keep on the treatment  he's on with the Dr.s he has now. He knows it's better care than he could get with the VA. An honest evaluation, how refreshing!
So anyway, I didn't get to go to the ice cream social that our community had Tuesday evening, or to play Mah Jongg Wednesday that I was so  looking forward to :-( . Oh well, for better or worse, in sickness and in health, right? That's what we both signed up for. But on the bright side, we get to pretend that we have new cars all the time. And today Glenn got to have a long-awaited-for lunch that has had to be postponed several times, with one of his "buddies", the sheriff  of Duval county. He even came in and had coffee after they got back from lunch. I was not warned ahead of time, but it's all good.
We go to G'ville tomorrow to see if Glenn gets chemo or a bone marrow biopsy: chemo if his blood counts are ok and biopsy if not. He can't tell how his counts are  because he feels the same no matter what they are. He was told at the VA that he didn't look nearly as bad as his labs say he is. But we both look forward to when he gets to stay off of the steroids. He's not quite as hard to get along with and his skinny clothes fit ;-). Next update coming soon.

Steroids-----booooo!

Our trip to G'ville today, you ask about? Well, Glenn didn't get chemo today because some of his labs, (namely his platelets, for you medical people), are going down instead of up and the Dr. doesn't want to give the chemo when it's down that far. Soooo, he has started him on BIG doses of steroids, (prednisone) because he thinks that is what the platelets responded to in the past. We'll see next week when we go back. His other labs were not too bad, not much change. His kidney function stayed the same as last week. In the mean time, I am going to stay clear of home as much as I can. The steroids make Glenn "aggressive" :-(  Of course, I'll be here to take care of him, but I plan to take advantage of every opportunity to get out. Maybe some Mah Jongg this Wednesday?! Hopefully. Maybe the ice cream social and bingo in the neighborhood activity center tomorrow night. And whatever other activities that come up. This week won't be as much fun for him as last week was. He has to continue to stay away from crowds and wear a mask when he is out. The Dr. also put him on an antibiotic because there is some wheezing in part of his lungs and he wants to be sure that there isn't any infection looming anywhere when Glenn gets his next chemo. He also got a shot to try to bring up his red blood cell count. It isn't worse but it's not better, either.
If you feel like you've just been loaded down with a big load of medical info, trust me, I feel your burden! But, don't worry, I'll carry it for you! In the mean time, please be sending up prayers for peace in this household this week. Thanks. You all are wonderful and I know I can rest assured that there will be much intercession going on for us.