Today Jim and I celebrate 34 years of marriage. Our hope was to spend the day with family and friends at the Weingarten in Belleville. Jim has had a rough week. Last Saturday he "just didn't feel right". Had stomach pain and nausea. It didn't take us long to figure out that a cyst on his kidney had ruptured. This is the first time though it was accompanied with blood in his urine. Having called the PD nurse, she didn't seem concern with the blood but had him come in for a urine test. Lo and behold yes he did have an infection and antibiotics were started immediately. Having been on antibiotics for the past 3 days, his pain is still there. Hoping he would wake up this morning feeling better instead he wakes up with another surprise....GOUT in is foot. His patience is dwindling along with his pain tolerance. A new kidney can't some soon enough!!!
On that note...Al went in Monday to wear a heart monitor for 8 hours. Normal procedure they tell him before surgery. Jim's transplant coordinator says as soon as they get the go ahead from the donor transplant team, things will be moving. But like I said....just not fast enough. Al (along with Jason) left this morning for a hunting trip to Canada. Probably nothing will happen this week which is ok. Jim needs to get well and be in tip top shape. We'll work on getting this infection cleared up as well as the gout. Our patience is wearing thin....Oh....and Happy Anniversary.....we WILL get through this. XOXO
Sunday, October 6, 2013
Wednesday, September 4, 2013
Good News!!!
Finally....after months of testing, Al was approved today to be a donor for Jim!!! Words cannot express how excited we are. Jim will have some testing to go through and hopefully he will be able to have the transplant by the end of next month.
Right now Jim is having some issues with his blood pressure. Ever since he was dehydrated, it's been tough to get back on track. The doctor is trying to wean him off of some of his blood pressure medicines. It fluctuates from really low to really high. That on top of still getting gout has made for a bad last few months.
Hopefully his journey will soon reach the end. I can't help but think my brother is up there working overtime to make sure this happens. Thanks Lar...xoxo
Right now Jim is having some issues with his blood pressure. Ever since he was dehydrated, it's been tough to get back on track. The doctor is trying to wean him off of some of his blood pressure medicines. It fluctuates from really low to really high. That on top of still getting gout has made for a bad last few months.
Hopefully his journey will soon reach the end. I can't help but think my brother is up there working overtime to make sure this happens. Thanks Lar...xoxo
Tuesday, August 20, 2013
Dehydration 101
For the past 3 or 4 days Jim hasn't been feeling well. It started Saturday while at the lake. He was on the riding mower cutting grass and the next thing I know he is sitting in his truck with the air conditioning running. He had gotten really light headed and sweaty. Sitting in the cool helped and after a few minutes he was better.
It happened again on Sunday and Monday and again today, He called his dialysis nurse at the clinic and she told him to check his blood pressure. It was very low....75/60. She wanted to see him right away but that he shouldn't drive. He call Bill G. and asked him to take him to the clinic. It turns out by the time he had gotten there he was experiencing shortness of breath and was hyperventilating.. They determined that he was dehydrated. After taking his weight, he had dropped 7 lbs (fluid) over the last few days. Apparently his cycler has been taking too much fluid off together with the increase in his water pill was a sure cause for dehydration.
After giving him some IV fluids, his blood pressure was steadily going up. His fluids tonight on the cycler will be 1.5% not the 4.5% dextrose he normally uses. No more blood pressure meds until his BP is back to normal. No more dark colored soda (too much phosphorus), No more Gatorade. No more orange juice.
This is what we learned today in Dehydration 101.
It happened again on Sunday and Monday and again today, He called his dialysis nurse at the clinic and she told him to check his blood pressure. It was very low....75/60. She wanted to see him right away but that he shouldn't drive. He call Bill G. and asked him to take him to the clinic. It turns out by the time he had gotten there he was experiencing shortness of breath and was hyperventilating.. They determined that he was dehydrated. After taking his weight, he had dropped 7 lbs (fluid) over the last few days. Apparently his cycler has been taking too much fluid off together with the increase in his water pill was a sure cause for dehydration.
After giving him some IV fluids, his blood pressure was steadily going up. His fluids tonight on the cycler will be 1.5% not the 4.5% dextrose he normally uses. No more blood pressure meds until his BP is back to normal. No more dark colored soda (too much phosphorus), No more Gatorade. No more orange juice.
This is what we learned today in Dehydration 101.
Wednesday, August 7, 2013
A True Friend
Testing for Jim's potential donor is still ongoing. When asked how things are progressing, I always respond, this sure isn't a fast process.
Last week I finally got a chance to talk to Jim's potential donor. His first words were, "Karen, they said this is all going really well. It's really going to happen". Such enthusiasm in his voice. It made me cry to actually hear these words. This has been the first positive statement I have heard in almost 2 years. It really seems that this will happen.
My sister-in-law Chrissy asked Jim's potential donor why he would consider being a donor. His quick response was...."the real question is, why wouldn't I". Now that's a true friend. Thank you Al!!!
Last week I finally got a chance to talk to Jim's potential donor. His first words were, "Karen, they said this is all going really well. It's really going to happen". Such enthusiasm in his voice. It made me cry to actually hear these words. This has been the first positive statement I have heard in almost 2 years. It really seems that this will happen.
My sister-in-law Chrissy asked Jim's potential donor why he would consider being a donor. His quick response was...."the real question is, why wouldn't I". Now that's a true friend. Thank you Al!!!
Sunday, July 14, 2013
Back on Track...Once Again
After Jim's post-op visit on Tuesday, He started back on dialysis. While they decreased the number of bags he does nightly from 3 to 2, they will gradually increase over the next few week. So far it seems to be going good.
His blood work showed that his phosphate was high and he was given medication for that. Otherwise, he once again got a goo report card.
His next doctor appointment is with a rheumatologist on Thursday. Hopefully she will be able to give us some good advice on treating his gout. We are experimenting with not eating hamburger for the next couple of weeks to see if that would help with gout. He also has cut out drinking soda during the week and cut out all high fructose corn syrup which I read also contributes to gout attacks.
So in the meantime, we are back on track....hoping that sometime soon we'll get the good news that a transplant is just around the corner.
His blood work showed that his phosphate was high and he was given medication for that. Otherwise, he once again got a goo report card.
His next doctor appointment is with a rheumatologist on Thursday. Hopefully she will be able to give us some good advice on treating his gout. We are experimenting with not eating hamburger for the next couple of weeks to see if that would help with gout. He also has cut out drinking soda during the week and cut out all high fructose corn syrup which I read also contributes to gout attacks.
So in the meantime, we are back on track....hoping that sometime soon we'll get the good news that a transplant is just around the corner.
Friday, July 5, 2013
Shhhhh....
I don't want to say this too loud. I'm afraid I will jinx it if I post about it too much. But here goes....
A friend of ours, Al, continues to be tested as a possible kidney donor for Jim. So far things are looking pretty good. Jim talked to his tranplant coordinator last week and said there was still some testing to do, but it could possibly happen in another 3-4 months.
After witnessing the pain Jim had to endure today, a transplant would truly be a gift. While dialysis certainly helps, it does take quite a toll on your body. I'm not sure how much more Jim can endure. It seems each setback makes it harder to recover.
So in the meantime, keep your fingers crossed that in another few months, our next trip to the hospital will be for a transplant. Our prayers will hopefully be answered.
A friend of ours, Al, continues to be tested as a possible kidney donor for Jim. So far things are looking pretty good. Jim talked to his tranplant coordinator last week and said there was still some testing to do, but it could possibly happen in another 3-4 months.
After witnessing the pain Jim had to endure today, a transplant would truly be a gift. While dialysis certainly helps, it does take quite a toll on your body. I'm not sure how much more Jim can endure. It seems each setback makes it harder to recover.
So in the meantime, keep your fingers crossed that in another few months, our next trip to the hospital will be for a transplant. Our prayers will hopefully be answered.
The Eyes Say it All
Today Jim had his catheter "tacked" down again. A different doctor at Mercy Hospital did the procedure this time around. He said that the last doctor used a type of suture that was "absorbable'. This time he used a different type. While the procedure is short, Jim's recovery time seems to take longer and longer each time. This is his 4th surgery in the last 15 months. Alot for a healthy body to endure. Even harder when you have little kidney function, bloated with excess fluids, a pain in your shoulder from the dialysis, gout in your left foot and a sore right toe from being clipped too close (sorry honey).
Hopefully he will be up and about in a couple of days. His pain meds are close by and his pillow covers his belly to ease the pain when he moves. He sees his nephrologist on Thursday to see when he can resume dialysis. In the meantime, he must watch his fluid intake as well as his potassium.
I vividly remember that far away look in his grandma's eyes and her big bloated belly while visiting her in the hospital.
I vividly remember that far away look in his mom's eyes and her big bloated belly while visiting her in the hospital.
I saw that same far away look today in Jim's eyes and his big bloated belly while seeing him come out of recovery.
The eyes say it all....I hope I never have to see that look in my kids' eyes.
Hopefully he will be up and about in a couple of days. His pain meds are close by and his pillow covers his belly to ease the pain when he moves. He sees his nephrologist on Thursday to see when he can resume dialysis. In the meantime, he must watch his fluid intake as well as his potassium.
I vividly remember that far away look in his grandma's eyes and her big bloated belly while visiting her in the hospital.
I vividly remember that far away look in his mom's eyes and her big bloated belly while visiting her in the hospital.
I saw that same far away look today in Jim's eyes and his big bloated belly while seeing him come out of recovery.
The eyes say it all....I hope I never have to see that look in my kids' eyes.
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