Tuesday, March 24, 2009

A receptionist from my transplant center called me last week so that they could schedule a re-evaluation with my social worker and have me visit with a dietitian. It was basically a formality that needs to be done every 6 months. Not wanting to put it off and feeling somewhat anxious I asked her if we could do it the next day. That was last Tuesday.

When we went in for my appointment I weighed in at 172 lbs. I wanted to cry. I've gained 18 pounds since my last visit a month ago. A sure sign of ascites. Now I know why my legs hurt so much. They can't take my weight. I have been limping around for the past two weeks because my left knee keeps going out on me and it hurts to walk. And I am slowly losing my muscle mass. The thought that I have ascites is frightening. (Ascites is the build-up of fluid in the stomach and it can cause a lot of discomfort. The fluid can push against the abdominal walls and can lead to heavy pressure in the stomach causing shortness of breath, bloating and flatulence. It can also be the cause of nausea and vomiting, halitosis and heartburn. These are just a few symptoms.) Of all the signs and symptoms of this disease; this has been the one I am struggling with the most.
When I was done with my visit my transplant coordinator came in to see me. I think she realized that I was discouraged and she mentioned my MELD score was still at 11. She said that for right now I only needed labs every three months, but if I wanted to come in earlier than May then I could. This cheered me up because I appear to be one of those people who doesn't seem to get sick on paper. I had actually hoped to see some changes in my last labs, but nothing has changed. The number stays the same.

I suppose this is a good thing, because we still have to get the house in order. I'm actually out shopping bathroom hand rails when we go to the stores because I seriously need them --NOW.

(I kind of like the antique chrome)

(It's a little nicer than the silver and gold chrome)

(But this bar, although sporting a plainly look, seems to speak out to me.

It has the I've fallen and now I can get back up look.)

Any how, on our way home from the hospital my wife painted me a picture. She wants to move the girls downstairs into different rooms and turn one of the upstairs rooms into a computer/lounge/recuperating room for me when I get out of the hospital. We would make a spare bedroom out of the other room. It is a good plan, but it is a lot of work. I don't know how we are going to pull it off. We are talking about moving four rooms between three different floors. Time and strength is our enemy. We don't have a lot of it. I get short winded real fast and my body is weak. I don't dare push myself or I could start up another bleed.
But there is more to the picture. Lois is just as exhausted as I am. Perhaps more so. She is running the whole household by herself and I know it is difficult on her. We enlist the help of the girls but it is often trying. I try to do what I can but it isn't much. Today I am doing laundry and I am going to try to mount some new curtain fixtures in Alys room.

Physically I am starting to get a lot of cramps in my legs and when I get short of breath I can feel fluid in my lungs. I don't know what that's about yet. In the long run I am holding up okay, considering the circumstances. My spirit wavers from time to time but I can't imagine not being touched by this. It's a pretty big deal.

In closing I am thinking about all the people I have met recently who are ill or recuperating. I pray you all good health. I pray for your families as well. The emotional and physical toll on everyone involved is enormous -- for the wives, and the husbands and the children. Sometimes I forget that the emotional, financial and physical stress can be so taxing -- on everybody.


  1. I hope the pain settles down for you soon. It is encouraging that your MELD is stable, though. That's good.

    Man, I wish you lived closer. I could have Jeremy and his friends come do all the grunt work so you and Lois wouldn't have to worry about it!

    Oh, and we have have the "I've fallen and can't get up!" handrail in our bath. It may not be the prettiest but hey, it works!

  2. I understand and I am so sorry that things are becoming so rough on you and your family. As the patients, we often forget to remember what it must be like for those who love us. Sometimes, it seems as if only we are going through the illness, but we are not alone in our struggles. Our families struggle right along with us and it can be exhausting. There are many online support groups for caregivers and family members. Is this something your wife might be open to? Also, I am sure that the hospital has resources that they can share. Your wife has to remember that she is going through this, too. It will be very hard on her, as well. She needs to find ways to nurture and refresh herself so that she doesn't experience burn-out.

    As always, you are in my thoughts and prayers. And I agree about the antique chrome. Not so sterile looking.


  3. I can certainly emphathize. Acities, along with bleeding veracies, is what put me in the hospital this past January with portal hypertension. It's what indicated to the doctors that I had end-stage liver disease ... something I certainly didn't want to hear. I understand the lack of energy and the affect that has on your family who try to help. It's a strain on our dignity to have to deal with things like this. I can only offer you my prayers in your continuing struggle.

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