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It happens...

August 23rd, 2009 at 12:22 pm

So the last few weeks haven't been so hot. I went on leave, which was fun. Really enjoyed myself. But on the way there, I hit a mule deer in Nevada. $1000 deductable. I got home, and find my AC unit froze up when we turned it back on. Thank God we had the insurance on appliances that the realtor baught us. Only $155 copay. I picked my car up from the shop friday, and the engine took a dump the next morning. Fun.

On the health front, DW is getting progressively, and quickly, worse. She had her only kidney removed on the 5th, but has 35 staples as a result. Also had to have the artery connecting the kidney replaced an artificial one.

She has since developed severe pitting edema - swelling that leaves deep indentations when you put pressure on it - in her legs, face, left arm up to the shoulder, and her chest. She at times has trouble breathing and chest pains. When these first developed we took her to the ER, who essentially told her that since the test results for blood clots and fluid in her chest came back clean, they weren't going to help her, and sent her home. We don't know the direct cause of the swelling, aside from that it is often a side effect of having no kidneys and leads to one of two things: pulmonary edema or congestive heart failure. Her serum albumin is far too low to be considered for a transplant, so we don't have much to look forward to other than praying that we can get her albumin raised up. We've also been having an average of 1 to 2 units of blood transfused a month. Not much we can really do other than hope and pray.

So now she goes tomorrow to get her 35 staples taken out from surgery. She will be allowed to bathe for the first time since July 2nd. It's a much needed emotional boost for her.

So we're not doing so well right now all things considered. Our marriage is stronger than it's ever been, but DW's health is deteriorating, and our finances are dwindling from the car repairs, ac, and unexpected med bills that pop up occasionally when the insurance denies some tests. As much as I don't like Obama, he is accurate in that as much as 80% of the total health bill is for the chronically ill and dying.

We've also applied for disability for DW. She stopped working May 18, and officially quit her job July 18th. We thought she would be able to get back to work before the year disability requires in order to qualify, but it doesn't look that way any more. She's qualified for disability since last June, but we preferred her to work outside the house and have social interaction with friends at work while she could than sit home and collect a check while being depressed about her situation. Any distraction is a good thing for the most part.

DW is dealing with things pretty well. I think she's come to terms with it. Neither one of us can control if she lives or dies aside from her watching her diet to make sure she doesn't have a seizure. So we live life to the fullest, and right now have kinda said to hell with trying to save, because if she doesn't live, we want her to enjoy what time she has left. Afterall, that is the point of saving right? So we have money to live the end of our lives how we want to? We're not going into debt at all, and haven't stopped the Roths, but are only putting enough in savings to replace what we spend out of the EF.

Whatever she wants, she gets. She can't travel, and we never got a honeymoon, so she wants to do that as soon as she's healthy again. We want to believe in our hearts she'll see that, but at the same time have to be realistic that it might not happen. I bought her a new coach purse the other day, and when she's healthy and can go out, we'll get her a new wardrobe since she's lost so much weight even her pajama pants fall down when she walks. She's gone from a size 18 to a size 8 over the last 7 months and has had no exercise involved.

I think the most depressing thing for me is watching her endure the pain she is in. She can't get in or out of a car on her own very often, it's a real rarity when she can. Climbing stairs without help is one thing she prides herself on, though she can't carry anything. She can't bend over to do laundry or dishes anymore, so her house hold chores have been limited to folding clothes and on occasion putting groceries away. She did make a great manicotti for dinner a few nights ago all by herself, which was pretty impressive, though the exertion to do it put her in bed until late the next afternoon.

She usually prides herself on her looks, but lately hasn't tried to take care of herself. Yesterday, I took her by the salon to get her eye brows waxed and she almost cried looking at herself in the mirror because she looks so rough.

Since she gets her staples out tomorrow, I told her one day when she feels up to it that I'd take her for a couples massage and get her a mani/pedi with it. She's been begging me to do a couples massage with her for months. Normally I wouldn't be caught dead in a spa, so I told her no, but I can't deny her anything right now.

All she wants right now is warm blankets, thin crust pepperoni pizza light on the sauce, diet sprite in a can, and the remote. She's on bed rest, and gets sick to talk.

Yesterday was the best day she's had in over a month. We managed to do lunch and a matinee after dialysis. She even ate dinner, which was a first since the nephrectomy. She hadn't had 2 meals in one day since August 4th. Normally she doesn't eat more than about 8 oz of solid food in a day, so for her to have 2 meals and then still be hungry was really good.

Today, not so much. She was still asleep at 11:30 when I called from work to check on her. She's sick again today, and can barely talk. She doesn't sleep very well because it's painful to move - the swelling makes her skin very tender to the touch and when she flops around in her sleep, it wakes her.

We're praying she will make it. She can't have a transplant with transfusions, so she has to have a blood treatment called plasmapheresis done. They will not do that if she is otherwise ineligable for a transplant, which she is if her albumin is below 3.5. It's at 2.0. So we have to work on her albumin first before anything else. And then when it gets to 3.5, we have to maintain that for 6 months. During 5 of those 6 months she would undergo plasmapheresis during dialysis, in which they filter the plasma from her blood and replace most of it with mine, and some with hers after they manually remove the antibodies from her blood. This makes her body slowly acclimate it's immune system to my blood and antibodies, so that when she receives my kidney her body has gotten used to the cells and doesn't reject.

The sixth month would be a transplant. She would receive my kidney in her left abdomen, and have 3 months of recovery before she could try to go back to work, and would still qualify for disability for the first year after a transplant, allowing her to go back to work at her pace instead of out of necessity.

It takes an average of 30 days to raise a point of albumin. So she is looking at, as a best case scenario, 45 days until her albumin is 3.5. Then 5 months of blood treatments. Then a transplant. Then 3 months of recovery. Best case scenario is 10 1/2 months before she's able to be self sufficient and travel again. Worst case, other than death, is congestive heart failure. It's irreversable, and at 25 years old, leaves a pretty bleak outlook on life.

It'll be a tough row to hoe, but we can get through it. Get this albumin up, and we'll be ok. But I'll be damned if it aint hard. Been working on albumin for 2 months and only gone up 0.6 out of a needed 2.1. But progress is progress.

6 Responses to “It happens... ”

  1. creditcardfree Says:

    Thanks for the update. You have the right attitude. I'm glad yesterday was a good day for your wife...she deserves many more. She is a trooper for sure. Best wishes to both of you.

  2. jillybean Says:

    I'm so sorry to hear of all your and your wife's struggles. I will say a prayer for you both. Has a nutritionist been able to recommend any supplements that would be appropriate for your wife? (like maybe protein drinks? I'm not a healthcare professional)and something she can tolerate? My Mom recently had nutrition issues due to surgery complications and we had to try a whole bunch of different brands/flavors before finding something she liked enough. It gives my Mom a "baseline" nutrition each day then whatever food she can eat. You are right to view progress is progress--it may be slow--but it's all good.

  3. swanson719 Says:

    They have her on ensure, and then some prescription supplements too that are compatible with her renal diet. I have to fight with her everyday to take her protein, she hates the taste of it. We're going to try to get some protein pills for her, but first have to check with the nutritionist. She sees her every tuesday and thursday.

  4. NJDebbie Says:

    I pray that your wife feels better soon. You are both blessed to have each other and since you believe in the power of prayer, I'll say one for your wife's recovery. ((HUGS))

  5. gamecock43 Says:

    Wow. I do hope things turn around for you. This sounds so difficult, I admire your strength. Please keep us informed. What you are going through is very personal, but your honesty and strength is something that I admire and aspire to have if one day I get into a similar situation. Good luck.

  6. cptacek Says:

    Oh my goodness. You seem to have the right attitude about this, if there is such a thing. I am also praying for you and your wife.

    What does it take to increase the albumin? Is it a vitamin/mineral/food thing? Or just a sign that things are getting better?

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