My web host has been up and down, mostly down, all weekend. I have no idea why and I don’t even bother contacting them anymore. For your own sanity? Never use Server Grid. They are horrendous.
I apologize for the mess this website has been in for the past few months. Even computer geeks screw up their own websites and then shove them in a closet somewhere for fixing later. I did an upgrade which failed. There was just too much other stuff going on for me to want to deal with figuring out how to fix it.
I am back from surgery and I have stuff to report so … stand by for next post later today.
This is a quickie check in … I will post more later.
I lost the weight, got retested, passed and they called to say that we are approved for the transplant. We went in for a fresh compatibility test and are waiting for a surgery date.
D and I have been best friends since we were 15\16 years old. We are now 48\49 and in all thise years I just let D be D and left him in charge of pretty much everything he wanted to be in charge of … Food being his favorite thing to control. That? Has changed. Some time in June I realized that I would take his shopping list and buy whateverthehellhewanted at the grocery store and when he made things that were hella fattening or bad for you — I ate it to be polite even if it wasn’t on my diet. And worse, I let HIM eat it.
I started nagging in September.
Two weeks ago, after I bought him an iPad, I convinced him to join Weight Watchers. Without the iPad or an iPhone it’s really kind of hard to follow Weight Watchers. He has a Blackberry and I could not find the app for it. But on the iPad? He has no problem seeing the app (his perfect eyesight is faltering with the failure of the kidneys and he needs glasses now – looks really cute in them I must say …) and he’s compulsive so he’s all over tracking every point. Weight loss last week was 2 legitimate pounds. I say legitimate because the constant water weight cycle dialysis puts you through makes it almost impossible to tell if the weight loss is fat or water. For sure, that two pounds was fat.
I also got him into the gym three times a week and he’s feeling better every day.
He now tries to lecture me on exercise and food.
Lecture away baby-cakes. I can take it. I have gone from 244 at the height of the stress and sadness to 190 and still falling. My biggest triumph was making it through Halloween and only sneaking three small tootsie Rolls and two glasses of wine. No candy left over because I threw it away.
Whew. Just have to get through cookie baking season and I will be able to say I am a new woman.
On the transplant front I have about 20 pounds to go before I will be out of the danger zone and I can get retested and — cross your fingers – approved to donate. D has good days and bad days as far as his emotional status but he and Kid Two are going hunting next weekend which is something he thought he’d have to give up. It’s going to be rushed, but it’s something. The low point was selling the big boat. We pretty much gave away our 36 foot Silverton. D can’t keep up with it any more. The heat makes him sweat and he can’t drink to replace the water loss and he doesn’t have the energy a 36 foot boat requires.
That was a bad two weeks, listing and selling that boat. It was our favorite thing to do together. Now? We are looking for a new favorite thing. All suggestions welcome.
A friend of a friend in California was a a blood match and she wanted to donate a kidney to D. She was rejected by the Transplant office because they “do not take Good Samaritans”. Unless you are a close, close friend of the patient or a relative – no dice.
I have lost 35 pounds. 30 to go and they say I can donate. I have figured out the trick. Less calories. More exercise. So. I have researched the ever loving hell out of the topic and I now know my BMR, BMI, how many calories to maintain, to lose, to lose FAST. I know how many calories each setting on the treadmill burns per hour. I have a membership to the gym at my office and the one by my house – $45 a month, each. I have a heart beat monitor that talks to the treadmill which is cool as all hell. I have hot links to calorie counter sites and I am counting calories like a madwoman. Weight Watchers is great, but too passive. I still do it, but in addition to the more detailed food break down. Weight loss is going MUCH faster now that I understand the mechanics of it. Get the most protein for the fewest calories and fat (to build muscles which burn fat), lots of fiber (to beat back hunger), lots of water, no sodas. None.
D, on the other hand, is gaining weight and for a few weeks there he seemed to be trying to sabotage all of my efforts in a myriad of ways. I don’t understand it. I can’t make him diet or work out or even walk a little more each day. My fear is, they will disqualify him for his weight if he continues gaining.
I don’t know why I ever believed that diets worked. They all seem so ridiculous now. The Cookie Diet, South Beach diet, etc. How on earth could they possibly transform someone’s bad habits? There is no magic pill. Diet pills mask the hunger. Exercise KILLS the hunger pangs. I dragged my son and his girlfriend to the Gym last weekend and he wants to go again this weekend. Hopefully I’ll hook him. I now nag the hell out of my daughter and she is using the gym at her condo to make me happy.
More later …
I suspect that anyone who has dealt with something like this eventually comes out of the immediacy of the crisis to realize that their house is a wreck and their usual todo list is all askew. My house has never been terribly organized or elegant, but it has usually been maintained and clean if a little cluttered. I now have a huge bag of mail sitting under my desk needing shredding, sorting and some of it paid and that is definitely not like me. The reason I am now looking around and assessing the damage of the past few months is that the home hemo dialysis nurses are coming on Friday to look the place over and get it Home Hemo ready. The new cleaning service is also coming Friday.
I have been purging and cleaning for two weeks. Not a dent. Not.a.dent. I did replace the front door and I have a guy coming to do other repairs to stuff that – before January’s melt down – would have been handled immediately. I would rather curl up with a good book in all honesty, but it’s time to get moving again.
So. Where are we in “The Process”? Well. It finally sunk in that they assigned D to a doctor who was on sabatical for something like six months to a year and we have been sloughed off onto doctors who are overworked with their own patients. This explains the anger we run into when we call every other week to see where he is on the approval train. He finished all the testing they requested and passed. We are waiting for a doctor – any doctor – to tell us D is on the transplant list.
I have been going to the gym daily and doing Weight Watchers and lost 26 pounds so far. A few more pounds and I will ask my doctor to order a rerun of the glucose tests and a new heart eval. The heart thing is ridiculous, btw. Two other doctors looked over that EKG and saw nothing. Still. A stress test confirming all is ok doesn’t hurt me.
D and I have been married for 24 years and he made Spaetzle for the first time ever a few weeks ago. Yum. Makes me wonder what other cooking talents he has been holding out on me. 24 years to get Spaetzle? Seriously? That’s just not right. He’s known all along how to make it. Squid.
I am taking my son on a trip this weekend and reality sets in because D can’t go with us. Two days is doable. Three days is not because he has to be in dialysis on Monday. So. I hope the house passes inspection for Home Hemo. This travel restriction thing sucks.
I am nagging D these days and I never did before. I actually swore when I got married twenty-four years ago that I would not be the kind of wife who treats her husband like a kid and I kept to that pretty well until this year. I was so good about it that D asked once if I loved him because all the other wives would tell their husbands they couldn’t do things – like hunting or fishing – or go on trips and why didn’t I do that to him? So I told him. I told him he was a grown up and could make these decisions for himself. He didn’t need me telling him yes or no or to take out the trash. I was not his mom.
The day D got his port removed all that changed dramatically.
D has\had a photographic memory. I realized the night before his surgery that D was having trouble keeping the most simple things in his head for more than a few minutes. He told me his appointment was at Baptist on Tuesday at ten am. When I got home he showed me the paper the Dialysis Clinic had given him for the appointment. It said the appointment was for 1:30 at University of Miami Hospital a block west of my office and 20 miles away from Baptist. I pointed this out to him. He looked at it and said he must be confusing the testing he has to have done for the transplant doctor a week later, except that appointment is at Homestead at 9 am on a Thursday.
I made plans to walk down when he got to UMH and if he needed me to drive him home I could leave my car at the office and take the train on Wednesday. I called him at 1 to see if he was on his way because his office was an hour from mine. He said the appointment was at four pm and he had plenty of time. I told him it was at 1:30. He said OK and hung up.
I hate to say this but I felt – for the first time – panic. I texted my sisters, my son, my daughter and my mom asking them what to do. My oldest sister called. Her daughter was graduating from college and they were at the ceremony, but still she called right then and there.
S: Is he driving?
ME: I don’t know and if he is then I have no idea if he’s coming here or where he is going.
S: Tell his office. They can launch a helicopter or something and find him.
Actually. They can. But did I really want to to do that to him? Did I want his office to know that his memory is awol? HE doesn’t even seem to realize it. What would you do? Is it temporary? I don’t know. His doctor is impossible to reach. In the end I waited. I estimated how ong it would take him to get to the exit and then I called. He had made it and the doctor’s office said as long as he was there before four it would be fine.
When the port was removed he seemed ok and insisted he could drive himself home. So. Against my better judgement I let him. It was the last time I would let him have his way again because it was a long two hours of worry before he was safely home and resting in bed with some pain killers.
I drove home that night and mulled over these new developments. The guy who had always been large and in charge was fading in and out and I felt as if I had new kid to take care of. He was worse than my teenager, certain he knew everything when in fact he could not be 100% trusted to do the right things at the right time. What’s weird is … unlike my temporary memory loss with ciguatera … D seems blissfully unaware that something is happening to him. Is that a blessing? He’s definitely confused at the change in me and resists my constant reminders and setting his phone with reminders and presetting his GPS with all the directions he might need.
In 24 years he’s never wanted to go shopping with me and now he does. He’s never been one to go hiking and now he goes with me. Maybe he does sense something is different and demonstrates it by keeping me near as much as possible. I don’t know. I do know his phosphates are way too high and in spite of all the diet monitoring I’ve been doing on him he’s getting phosphates from somewhere.
High levels of phosphorus and bone disease
Because unhealthy kidneys are no longer able to remove phosphorus from the blood and get rid of the excess in urine, high levels of phosphorus (hyperphosphatemia) is a problem for people with stage 4 and 5 kidney disease, especially stage 5 (also known as end stage renal disease or ESRD).
High levels of phosphorus in the blood can cause:
? bone and heart problems that lead to hospital stays and in some cases death
? too much PTH to be released, which over time can weaken bones and make them more likely to break and develop renal osteodystrophy
? low blood calcium, which causes calcium to be taken from the bones
? calcification or hardening of tissues when phosphorus and calcium form hard deposits in the heart, arteries, joints, skin or lungs that can be painful and lead to serious health problems
? bone pain
So it’s Father’s Day. D’s father died of a brain tumor when he was 54 years old. Before he died he was third in command of the Naval Base in Key West during the Cuban Missile Crisis. And later he was a vice-President at General Mills. General Mills was a sponsor of Richard Petty, famous race car driver. When D was a kid he got to meet Richard Petty and sit in Petty’s Road Runner. For some reason it has been all D can talk about since January. He wants a Road Runner to tinker on. He bought a full set of tools from the family of one of the mechanics who died last year of a heart attack. They needed the money and the tools were never going to get used again because his sons were into different things. So we had the tools. When he found the car, I took the money out of savings and sent him and my 17 year old son on a road trip for Father’s Day to go pick this car up.
I had to drive my son J up to where D was at the Ambulance Station. D volunteers as a paramedic. His memory for things like flying, driving and medicine are dead on. It seems to be appointments and short term stuff he has to write down and keep close and only on days after dialysis. By the weekend he is ok. It comes and goes for some reason.
On the drive up I told my son that these trips, these days are the days he will remember later. I told him about road trips with my dad. What I can’t tell him is that the phosphate thing is deadly, the memory thing is not a good sign and that time is not a friend these days. As Delmore Schwartz said so eloquently in “Calmly We Walk Through This April’s Day“:
Time is the fire in which we burn.
I told my son to take care of his dad and to do as much of the driving as possible and to be as patient as possible. And now I wait, hoping they have a good trip and make good memories … memories my son will hold dear even if D misplaces them in bits and pieces and fragments of the time we have left, however long that may be.
D’s arm is black and blue from the shoulder to the elbow and I can’t even begin to imagine how much it must hurt him to get giant needles pushed into that every other day. He says it hurts. That’s probably an understatement. Next week they may take the port out of his heart. The heparin they are giving him so his blood won’t clot is causing bruising all over his body. He wants to get out on the boat and go snorkling again – or at least fishing. As long as there is any chance of submersion – and on a boat there is always that chance – he can’t go out on it. So. There is that to look forward to once the port is removed. But the needles – man – not pleasant.
They have ordered the Home-Hemo machine for us and I should start lessons week after next. He can’t go away for a long weekend while tethered to the Dialysis Clinic the way he is. They can make appointments for you at a clinic where you are traveling to, but it’s not a simple thing and that’s five hours on THEIR schedule you have to do as opposed to two hours in a hotel each evening with the portable device. It’s our 24th wedding anniversary June 14th. No plans for a getaway. Maybe dinner out somewhere, but there are so many things he’s not allowed to eat.
His mother is insisting that we pay his brother to donate his kidney. She says she will give us the total for how much after she talks to him again. *head desk* Aside from being illegal, there’s no way in hell he would follow through. I seriously doubt he can pass the physical. Still. She will not be disuaded so D let’s her ramble on her own merry way. Moms will always believe the best of their kids no matter how much evidence they present to refute their faith or how empty their bank accounts become trying to support them. This is why fathers should never ever die. Just say’n. D’s dad would have unscrewed kid-two completely had he been there to see the fall. I’m not letting D die and that’s a fact. He helped make our two rug rats and he’s sticking around to assist with any grandkids they produce.
I just wish it didn’t hurt so much.
Dialysis for most people is a prolonged death, not a strategy for managing long-term survival. ~ Is it time to offer compensation for live kidney donations? by Ed Morrissey
So I saw my doctor last Wednesday and she says there is nothing wrong with me. My EKG is normal. I don’t have Diabetes. Our plan is to take three months to lose weight and do a Thalium stress test and another round of the Glucose test and take it in for second attempt. I joined Weight Watchers and have lost ten pounds so far. It’s actually an excellent diet. The iPhone app is fantastic. I am also substituting the GNC diet shakes for several meals a week because they are easy and tasty.
D is not handling the delay well. He tried to contact his brother who he hasn’t seen in ten years. His brother eventually called at the behest of his mom and told D no way. He said he could not take six weeks off work. Probably true. Not to be mean but he’s a drug addict and probably wouldn’t pass the testing. He also does nothing for nothing. If we paid him I’m sure he would be happy to go through the screening process but there is no way he’d follow through with the surgery for any amount of money …. not for D anyway … probably not for anyone. I’ll leave the dirty laundry details alone but they are bad enough that you would be shocked at D for even thinking for a second that there was hope down that road.
D is switching his dialysis to the afternoons and I’ve talked him into setting up the Home-Hemo-Dialysis. I told him J (our son) and I would take the classes to do the needle thing. I would do whatever it takes to get his life back to normal – or some facsimile of normal while we wait. He didn’t think I would do the needle thing. I hate them. I mean I almost pass the hell out at the sight of blood. But, you know? I can do this.
This way when he needs to travel, he can, and I can go with him to help him with the hemo machine at night. It’s two hours a night every night and it’s portable. If the FAA give’s him back his pilot medical he has to get recertified every year. The Home-Hemo thing will make that possible.
It sucks. I know it sucks. He doesn’t want to do it. I am just going to have to keep pushing him until this is over.
He called Jackson for a status on his testing. Dr. Death had asked him to check in every two weeks until he was on the list. It’s been three. The nurse was rude as hell.
“Why are you calling us? When the doctor has time to look at your records and makes a decision we’ll let you know by mail.”
I told him to shake it off and call again in two weeks – or I would even if they will not give me any information. Hell. I’ll walk over there in person. He needs to at least get on the list for a cadaver kidney. My doctor is certain I’ll test out fine once I’ve dropped the weight, but you never know. I want all bases covered.
In the mean time, we are hanging in there. I am hoping he can get the heart port out by next week. He hasn’t been able to take a shower since January.
The Donor nurse called this morning and told me that the doctor has rejected me as a donor because I am (supposedly) prediabetic and the ekg was “abnormal”. I am not going to tell D yet. I am going to call my doctor and see if she can run those tests again, first. I called the donor nurse back and she says I can go there tomorrow and get a copy of the medical records tomorrow between 8 and 4. Today is one of those days where I am glad we don’t share the same doctor.