Longer than expected visit

It was a little longer G'ville visit than we anticipated. Wednesday we left early so we could get to the appointment early, (they see patients as they come in, not necessarily by the appointment time.) We figure if there is a procedure to be done, they will have time to do it if we get there early. But the early plan didn't work as we had hoped. The car died half way there, so it took about an hour and a half to get the car towed and get a rental. So we got there at the scheduled time. The labs showed that Glenn's red blood cell count was critically low so he needed blood. But the Dr. also wanted to go ahead and do the bone marrow biopsy to see if he can find out why the counts stay low in spite of the shots Glenn gets weekly for it. We will get results from that in a week. By the time that was done and the blood was ready for transfusion there was only time to get one unit, so we had to go back yesterday for the second unit. On the way back home Wednesday night I was thinking there must be a way to be able to stay in town for the night so we wouldn't have to drive home and go right back the next morning. God heard me. I had posted on Facebook briefly about our trip to G'ville and an OLD friend who lives in G'ville answered and we all had lunch the second day after we were done at the clinic. He offered that if we were ever in a situation like that we could stay with them. Isn't God so GOOD?! And it was  so good to begin to get caught up again with him and his family.
As far as how the 2 units of blood have affected Glenn, he feels a little bit better, (he had been getting tired a lot and so we know now what that was caused by). He is having some other issues with bleeding so we have to look into that right away. Prayers certainly requested. I will let you all know when we find out the results of the biopsy and any other tests.

Still stable

Just want to report to you all that there is nothing to report. :-) Glenn continues to feel pretty well and the night time dialysis is going smoothly. He got to be a guest host on the Flight Time radio show again yesterday, which, as you all know, is a favorite activity of his.
He has sent his second book to the publisher, and is working on his third book, which is a political fiction. The words are just POURING out of his mind. Surprise, surprises!
 He seems to have a little more energy than he did last week. He got another shot for his anemia and maybe that has made the difference. He's actually been going out to men's night with the guys from church, and we were able to go to out to a gathering of friends Friday night for dinner, and movie for the men and Mah Jongg for the ladies, and he didn't run out of steam. Our next Dr. appt is this coming Tuesday at the Renal Clinic here in Jax. and the following week we go to G'ville. Probably won't post again for a a little while until we have any new info to give you all. So ttfn.

Enjoying relative "normal-ness" for a time.

Hello all you faithful glennschemoandstuff followers. It is comforting to know you are there keeping up with all this stuff.
Glenn had his appt in G'ville this past week with the oncologist. It looks like the markers that he is watching to follow the disease are up again and it's inevitable that Glenn will start some form of chemo again. We go back in a month and he will probably have another bone marrow biopsy to determine where exactly the disease is and what treatment to start. From the labs we have up to the end of August, it looks like the values are as high now as before he had the stem cell transplant. I really hadn't looked at the comparisons until now. His platelets continue to be very low, as well. We don't know what is causing that. His red blood cell count stays low, but that seems to be constant for dialysis people.
On the day that a person receives a stem cell transplant it is considered their birthday. We finally got that connection when we went to G'ville this past week. Because the immune system was completely wiped out from the transplant, Glenn is considered 16 months old, and had to begin his immunizations just  as a baby has to. So he got 4 (FOUR) shots at his appointment. His arm is still quite sore four days after the injections. Poor baby. I took him for ice cream afterwards because he was such a brave boy.
It is so good that he has this time of feeling pretty well in between treatments. It has been a nice reprieve. He has about another month of feeling well before it all starts again.  boo.

Night-time dialysis

I know I said in the last entry that I would update you on the rest of his labs. The P.A. called to give us a report and we asked her to fax it to us as well but the fax didn't go through and we haven't gotten around to calling back for them again. But from what she said everything concerning the LCDD is still trending up, but not in a dangerous range right now. We go back to see the Dr. in a week.
Glenn was finally able to get trained on the "cycler" machine to dialyze at night while he sleeps. He's on his fifth night now. He is still getting acquainted with the machine, but he likes not having to do it four times a day. With it being a new treatment, he was intimidated by it at first, but after the first time he used it, he has settled down about it for the most part. And he has a number he can call any time of the night for help which really helps lessen the anxiety. The first night neither one of us slept very well. But after that we've done pretty well sleeping.
He's had several days where he feels pretty good most of the day. He can get worn out if he tries to fit too much into his day. I think that's a result of the anemia. He's eating well, looks good, has a fairly good amount of energy and is comfortable with all the new additions to his body, ie the dialysis tube in his stomach, the fistula in his left arm, and the port in his right upper chest. I think he's in a good place right now. I told him now he can find ways to make my life easier!

Report of Dr visits.

I can give you all a partial report on Wed.'s G'ville visit only because we have received partial results of Glenn's labs. His red blood count is still low, but not enough to need a transfusion. Most everything else is in a pretty good range. Of course his kidney function labs are  terrible, but that's to be expected since the kidneys are shot now. We are waiting for the Dr. to call us regarding the levels of the LCDD disease. They apparently take longer than a day to be done.
Today, for the first time in a long time, Glenn wore his shirt tucked in and a belt on. He hasn't felt comfortable with that until now because of the tube in his stomach that is at belt level. He looked like his old self, except that his hair came back darker since it has grown in.
Our trip to Tampa was pretty uneventful and the appointment took much less time than we had thought it would take. We wait now on the lawyer to do whatever he is supposed to do. We didn't see much indication there that a convention was going on, except for a small caravan of important looking vans coming out of the Weston Hotel parking garage which was next to the building we were in. And we ended up driving to Tampa and back that same day instead of spending Wed. night in a hotel. Worked out ok, but Glenn's dialysis schedule got all messed up and he missed an exchange that day, first time since he has started dialysis.  He lived without it for a long time so it won't hurt anything if  he misses now and then. (He does 4 exchanges a day.)
So, with the rest of the lab results: tbc (to be continued).

Just checking in with our peeps

You know things have been relatively quiet when I don't post for a while. To catch you up on the  past couple weeks, (if I can remember that far back), Glenn had his visit to the nephrology clinic and the dialysis is apparently doing what it's supposed to. He is scheduled for Sept 12 & 13 for training on the night time dialysis cycler, so he should be able to start doing that after his training. One thing it will help is when we have to go to G'ville or somewhere for the day, he won't have to be concerned about where and what time he can do a dialysis exchange, like we have to consider now. It's not really that big of a deal, but it would be a lot more convenient if he didn't have to plan for that during the day.

He has been feeling quite tired for the past week or so. I will be glad to find out what his labs are tomorrow when we go to G'ville. My guess is that he needs another unit or two of blood. That's just a guess, though. He also had a virus over the weekend, feeling achy with GI issues. He seems to be better now, but the tiredness is still there. Also, as a follow up about the blister-like spots on his leg: they have dried up and are almost gone now. Our best guess is that it was a bug bite of some kind.

As I mentioned earlier, we go to G'ville tomorrow, and Thursday he has an appointment in Tampa to evaluate his neck injury from the accident he had a couple months ago. So we are going to spend the night Wed. night somewhere between G'ville and Tampa. Not a good week to find an inexpensive hotel, since the RNC is going on there this week. Hopefully, we will avoid the riots, etc. while we are there. We could use some prayers about that, thanks. Thankfully,( hurricane) Isaac has left that area so we dodged that bullet. 

I'll fill you in on our Dr. visits later this week. 

a little boost for the blood

We did go to G'ville Wednesday and Glenn got a unit of blood because his blood count didn't go up in spite of getting the shot for it the week before. The Dr. also told us that the markers for his disease have gone up, not out of normal range yet, but it made a significant jump. Now we go back in 3 weeks to find out about chemo. Glenn's only regret is that while he has been feeling good these last few weeks we haven't been able to travel anywhere.  Tomorrow we go to the renal clinic to see how his dialysis has been doing. He has been maintaining his weight and fluid balance well so far. We hope for a good report from tomorrow's testing so he can start doing  night time dialysis and free up his day time to drive me more crazy. Oh, did I just say that? I mean, so we can do more things during the day time together and enjoy more time of being with each other, (insert sarcasm).  ;-)
He discovered something on one of his legs that is a little concerning. It looks like a cluster of little blisters, but he says it doesn't hurt or itch. If it itched or hurt I wouldn't be as concerned, but that really narrows the possibilities of what it could be. I'll keep you posted on that development, or clearing up.  ttfn