Category Archives: Kidney

On a personal note…

A year ago today Dale was in the hospital at the beginning of the worst summer of our lives. Tomorrow we go for his first round of tests for kidney transplant which means we are back where we started a year ago. He is stronger and in better shape that I would have ever thought he would be after the peritonitis. His spirit and his sheer hardheadedness is amazing. Our first appointment is at 8:20 in the morning which means we will leave the house at about 5:30. The last appointment is at 3:20 and we have to go to a total of three different facilities during the course of the day. They are predicting rain and I am hoping the worst of it will pass us – I’m not terribly comfortable driving in Dallas (especially when I am going to places I have never had to find before) and I’m definitely not comfortable driving in storms so I’m keeping my fingers and toes crossed.

I shouldn’t complain at all – I’m not the one who will be poked, prodded, and x-rayed all day. We will spend part of the day in a transplant education class so I’ll be moving to the next chapter of everything you never wanted to know about kidney failure and were afraid to ask. I’m praying for no bad surprises. If he is told he cannot have a transplant it means a life sentence of dialysis which means for him 4 hours a day three days a week being hooked to a machine that filters your blood. It means feeling really crappy those days. It means having to be on a very strict diet, being more susceptible to all kinds of serious illness. If that is the verdict we’ll deal. If he gets the green light the next step will be having his sisters tested to see if one of them can be a donor. If not we get on the list and stay prepared for a phone call.

We will appreciate prayers – we’ve been blessed throughout all of this and part of me knows that those blessings will continue, The other part of me is weak and worries and gets very cranky and stressed. I wish I could be that person that everyone admires for their strength and grace. Unfortunately I happen to be a big bundle of crybaby nerves instead, who takes it out on the kids, or tries to stay busy to try to outrun it.

Okay – enough whining. We will do this just like you eat an elephant – one bite at a time. I’m turning in early – that alarm clock is not going to be my friend tomorrow!

Normal Life?

I think life may be settling in to something resembling normal. Dale has been making some progress. He felt well enough to go to church Sunday. He has exchanged the walker for a cane and has been doing some chores during the day while I am at work and the kids are at school. He folds laundry, deals with the dishwasher and either cooks supper or at least gets things started before I get home. This last weekend he even did a little yard work. He was stiff and sore but his muscles have not gotten much use for four months so that is no surprise.

We are getting into sort of a routine with dialysis three nights a week and extra meal planning on weekend and the other two week nights. Renal diets are tricky – limited phosphorus, sodium, and potassium. That takes a little research and planning if you want to be pro-active. Potatoes can remain in the diet but they have to be peeled, cut up, and soaked for at least four hours to “dialysize” them (remove some of the potassium). High protein is important and since most everything that contains protein also contains phosphorus Dale has to chew a large phosphorus blocker tablet with meals that tastes like chalk. His biggest problem foods are dairy and fruit, vegetables, and beans. He swears when he gets a kidney transplant he is going to buy an entire hoop of rat cheese and eat it himself.

Too much potassium and he gets tachy (too high heart rate), too much sodium or fluids and his feet swell and his blood pressure goes up, too much phosphorus and he itches and some gland kicks in that starts to leech calcium from his bones and and cause fun things like degenerative spinal disease and even calcification of the organs and death. On top of all that factor in the vestibulopathy from the gentamicin which damaged his inner ears and cause him to have difficulty with focus whenever his head moves and I am in awe of him – he is truly my hero. He deals with challenges every day and still has a sense of humor, dignity, and is a good husband to me and a great father to his children. How many men are able to do that and are healthy physically?

Work is settling down. A large percentage of the grades are showing up on the website for parents to login and view and most of the gradebook issues have been taken care of. Maybe by next week I will be able to concentrate on the lab and getting it inventoried (again – the original inventory was on my computer that was stolen) and upgrading what I can. At least I can catch my breath now. For the first few weeks I felt like I was running through the day with one day melting into the next and it was hard to see any progress.
I have been settling in with the MAC too. I already love the look and feel of it but I am growing to appreciate it for productivity as I get more comfortable with it. To start with it is lightweight which is great because I carry it everywhere. I get about three hours on a battery charge and I have worked at implementing GTD techniques to keep my desktop and my email organized.

I finally managed to get the church webpage updated so at least the service times reflect the changes and all the ministries are listed.  I hope I will be able to be more faithful now.  I am trying to make a routine of treating myself one night a week to a latte and some wireless surfing at Hastings.  I go while Dale is at the dialysis center and just relax for a little while.  I think of it as my mental health time.

We are home. We hope to stay home this time but I’m still taking it one day at a time. It was wonderful to sleep in my own bed, take a shower in my own bathroom, and cook food that Dale can have on a renal diet that actually has some taste and that he likes. Things I hated were Dale being in pain and having to go through so much physically, being alternately hopeful and terrified, leaving my kids here on their own, sleeping on a pull-out chair, having no privacy, having sleep constantly interrupted, missing work and the seniors graduation, being afraid that no matter what I did – it wouldn’t be enough. Things I am so very thankful for are Dale while still being very weak physically is now more like his old self and feeling more positive, for my kids being able to keep things together and finish school without us here, for meeting folks that were often in much worse condition than we were and finding that we could all pray for each other and hold each other up, for doctors and nurses that cared, for finding that I can drive in Dallas, for Robert at Hicks who scotch-taped my air conditioner together to keep it working for a little longer, for the prayers and concern and calls and emails from all the people who love us and who we dearly love, for Jack at the dialysis center who paid attention and realized that Dale had something else going on and needed to get back to the hospital, for all the people at the dialysis center who called us in Dallas to check on us and who gathered around to welcome Dale back tonight and probably much much more. I’m still running on adrenaline and I think I will probably crash and burn this weekend. I’m planning on a long Saturday afternoon nap with the kids here to look after their dad and maybe a long soak in the tub.

The Saga Continues

They are now telling us we will be here through Monday. I counted up yesterday and as far as I can tell we will have had 25 days total in hospital, 7 procedures, 4 antibiotics, 5 CT scans, 5 trips to dialysis and I have no idea how many docs. I can find my way to Target and back and my list of hints if you are ever at Baylor is as follows:

Laundry can be done on the 12th floor of the Wadley Building – carry quarters for detergent and softener sheets – the machines are free

Computers are available in the Health Science Library but no one tells you this – you have to ask. Just go to the Truett Lobby and go down the hall towards the chapel. Turn left just before you get there and go through the double glass doors. Go to the end of the hall and turn right and you are there. They tell me the reason they don’t have a program with laptops for patients is because they haven’t figured out the wireless thing yet. (maybe you should hire yourself out for a huge consultation fee Tony!)

Parking is insanely expensive, but for five dollars you can purchase a package of five parking passes. This means a dollar each time no matter how long you are parked there and ordinarily it would cost you $3.50 a day.

Go to Target if you need personal items like excedrin or toothpaste – the pharmacy here is outrageous. You can get on Washington and go straight to it and come back on the same street which is wonderful since so much of the streets here are one way and you can go in circles for awhile seeing Baylor but not being able to get to it!

If you know someone is going to be here and the family members will be around a lot, a gift certificate from Starbucks might be a nice thing since there is one located next to the Truett cafe. They also have loadable cards in the gift shop for the Atrium Cafe and probably Truett as well.

The gift shop has prepaid phone cards and for ten bucks you can get 250 minutes. Cell phone service is iffy in some parts of the hospital and my little trac phone is worthless but the phone card has been very helpful.

That is my list of things to remember if I ever know ahead of time that someone is going to be coming here. I think it would be a great thing if Baylor had a little welcome packet available for people that had this info in it but at this point all I care about is coming HOME.

Yesterday my daughter said she cleaned out the refridgerator while my somn was gone to debate practice. Eveidently she did a great job because he had to do the dishes when he got home because she was at bible study and he was not to happy about it. I bet when we get a new dishwasher they will pay close attention to instructions on the operation and care of it. They have never been without a dishwasher before and this has been a learning experience. They both seem to managing the laundry thing okay as well and I plan to let that continue when we get home. I am planning on working and I think their laundry can be something they can continue to handle. Maybe some of this experience will end up being a good thing as far as their ability to cope on their own. My usual way of handling everything is to yell and complain and then do it myself. That has come to an end. I am letting go of some control!

We are ready to come home – sit on the back porch with the ceiling fan on and a glass of tea, turn on the sprinkler and watch the grass grow!