sticky tape, potassium and poop

Things are going alone pretty good I suppose. One night Bruce couldn't eat dinner and got so tired he felt like he could fall over and nothing helped- not even the beloved Dunkin Donuts Coffee. So nurse said it was probably a drop in potassium and to drink some OJ. Next day he was fine, and hasn't really happened again. Other problem is constipation so they gave him some Rx laxative powder to mix and drink 2 x a day. If he doesn't do it then he is in bad shape.

He is looking forward to getting switched to the nighttime dialysis because now it's tricky to always plan the exchanges at the right times and it ends up making him not feel as good and not as much comes out because his body starts to absorb it if it's in there too long. He is basically caring around 1 liter of sugar water in his peritoneal cavity all day long. The exchange is just replacing the old with the new. So the nighttime machine will do all the exchanges at night while he sleeps so he should be more comfortable during day and feel better.

The medical tape from Baxter on the catheter is brutal to his skin, he keeps ripping his skin and bleeding on the sheets, his clothes, etc. Don't know if there is a solution for this.

We had dilemma with Social Security office over the medicare application...more on that later.


To remove or not to remove

The PKD kidneys have GOT to go! But if he has surgery to take them out before he gets a donated kidney, it seems like it will be so much worse. We cannot get a surgeon to agree that if a kidney becomes available and we show up in Tampa, they will take out the old ones while putting in the new one. Apparently it is a longer surgery, the donated kidney is sitting and waiting longer to be put in body, and its hard on everyone. Bruce's Dr. says "it's up to the surgeon's discretion".

The other option is for him to go on Hemodialysis (which we both do not want) and have the surgery to get the kidneys out. It is at least a month to recover and very hard on your body- worse than the transplant surgery. Then he lives on Hemodialysis alone which will pretty much put him in bed and at the dialysis center for months... not what he wants.

So he is hoping that some poor person who dies is a match and all the work is done in one surgery with one recovery and all goes well!

I saw some pictures on a facebook group of large PKD kidneys that were taken out and I have to say I was disgusted but amazed! It is larger than any baby. And to think there are 2 of them! holy sh#@!

The photos are in this group http://www.facebook.com/group.php?gid=2229039880 WARNING: do not look if this stuff makes you wanna pass out.

i <3 Target

I went to pick up the latest meds...5 in all for this weeks re-up. And one of them- a vitamin Hectoral was $94.00 for 30. What happened to the max. $60 co-pay? well there are certain classes of drugs that don't fall in the normal category. Hectoral is a synthetic form of Vitamin D that helps with hyperparathyroidism that occurs in kidney failure. As far as we know there is no substitute for this and it's important to help prevent more bone loss. As I posted before, he fractured his foot without even knowing it last year. Bruce will check with Dr. on Tuesday about any kind of help with this.

While I have a look of shock and contemplate not even buying it, the pharmacists and assistants ,which know our family by name now, try to have sympathy. They gave me a $10 gift card to use for the grocery purchases I was making. I don't think that's a normal thing they do but they have to realize we spend a minimum of $1000.00 a month there including the medicines. So it was nice of them. They ALWAYS have patience when I show up with questions every single time.


week in review

Last week was first visit with the"team". Bruce's nephrologist is very unique. Something I need to describe later when I'm not so tired from watching 80 boys ages 7-11 try out for baseball. Anyway, the "team" is the nephrologist, the nurse in charge of his dialysis, a social worker, and a dietitian. They go over the current blood work and see how the dialysis is working. They ask him how he feels and Bruce gets to talk to them for very long time about everything.

They saw in the lab work that the dialysis is working a little so far. The dr. seemed to push the nurse to get the nighttime machine here quicker because he acted like that would do a better job.

The lab work shows his levels changing which makes some of the medicine he is on not needed and actually making things worse. So the meds changed a lot....Target here we come! They gave him a shot to help his hemoglobin because apparently he is going to become even more anemic than he is now. He started the vitamin again for the bone loss because the parathyroid is high again and he started taking fish oil for cholesterol.

His energy is about the same. I don't see that much change. I guess he was REALLY bad before to the point I wanted to take him to the E.R. , so yes there is slight improvement but he seems pretty much sick all the time. Its just up and down for sure. He has a few good hours a day.

We went to Boca Grande to enjoy the beach and lunch on my mom's birthday and he was so tired he could hardly hold his eyes open. On side note: Boca Grande has a beautiful old florida atmosphere. But it is sort of like the Hamptons if you know what I mean. The old architecture and landscaping is fabulous though.


the weekend update

Last week's sickness was probably just the stomach flu.

Dialysis proceeding as normal. The equipment and supplies scattered throughout the house. Seems to be doing it's job because it is changing everything:

#1 change is appetite. Bruce gets super hungry but can only eat small amount then 20 min later hungry again. And when he gets hungry it's panic mode. He wants only very particular things too or he's likely to puke.

#2 change is potassium. On lab work last week potassium was very low. It has been super high for months. He was taking medicine to help with that so now he's off the medicine and supposed to eat potassium food again. And is also supposed to eat more protein. Everything is the opposite of what is what a few months ago. Just enough to make me a little more crazy.

# blood pressure. Blood pressure has been dropping too low so he has to monitor it and know whether to take the medicine during the day or not. Does he do this? not always.

One minute he's fine, the next he's laying down about to pass out, shivering cold.

So overall update:
energy level= up 15%
attitude= up 10%
appetite= psychotic


Feeling terrible

Bruce has been in bed for 2 days with fever and throwing up. He started on antibiotic yesterday and anti-nausea medicine tonight. He could simply have a stomach bug - which has made me crazy about disinfecting, or it could be some form of internal infection. The peritoneal fluid when he does his dialysis exchange is clear- which is good news. But it could be something else surgery related because he had a fever on and off for a long time right after the surgery.

Now we just wait and see... i guess?!?!

Running in the family

Yesterday we were informed Bruce's brother, Sean, found out that he had a stress fracture in 2 places on his foot.

The significance of that fact is that Bruce has the same thing happen. He thought he had gout, bad shoes, sprains, etc. Finally got xray and he wore a boot, it healed then it happened all over again. When he finally started seeing the good Nephrologist, he checked his blood work and said it was because of the kidney function. People with Kidney failure start to have bone loss because their body is being robbed of calcium.

There are drugs Bruce has been taking to help prevent further loss and his foot has been fine for at least 6 months. Sean is not on a transplant list because his kidney function is still too high, but he has a lot more pain from the size of the kidneys than Bruce ever has.


The Baxter Boxes Arrive

I'm glad I was prepared because its not as bad as I thought. BUT this is only a few weeks worth. When he goes on the machine at night, they will deliver twice as much. I know it's only boxes but its the reality of how many times he has to do this and for how long... and that is the depressing part. I found a good site w forums and one written by a wife about this same subject. http://ihatedialysis.com/forum/index.php?topic=6782.msg99685#msg99685

They didn't give him any tape though and he goes through that like crazy. One package is 2.50 at Target. And I think with our $5000.00 deductible we are going to be paying again, he should get some stinkin tape.

These are some funny buttons for sale on that web site: (funny to me at least) Gotta laugh about something.


2009 Woo Hoo!

Bruce has done his dialysis at home for 3 days now. 4 x a day.

He's losing more water weight, but no improvement on how he feels. Today he was nauseous most of the day and unable to do anything. These days he usually has a good 2-3 hours at most where he can be up moving around. He is supposed to be feeling better within a few weeks. He is miserable now and just hates himself.

Let's just hope there's a new kidney in store this year! (and the old football sized ones get taken out)