I was all set to write a happy blog about the great Thanksgiving weekend I had with my wonderful family. Perhaps I'll write two blogs today-one happy and one not so much.
So, last Monday I was done with dialysis and they took my temperature, as they always do. They stuck the thing in my ear and it registered 99.0. I guess you add a degree when you take the temp in the ear, so they rounded it up to 100.0. They always freak out when my temperature goes above normal because they're worried about infections in my dialysis catheter.
They drew blood cultures and sent them off to the lab.
Wednesday, I was sitting in the dialysis chair, anticipating the weekend and our travels, when the lab results came back positive for bacteria in my bloodstream. Wonderful. I feel fine--not symptomatic at all, so I think it's all garbage, but I promise to go to the ER where ever I am if I feel sick at all. I then figure that we can do the mega-antibiotics on Monday (today) when I come back to dialysis. It's happened before.
I'm resting peacefully in my warm bed this morning when I get a call from the dialysis nurse telling me that my nephrologist wants me to get a new catheter put in this week. She said the bacteria was MRSA...something they didn't tell me before. Again...wonderful.
I'm just plain out of tears. I don't have any more room left to be happy. I can't understand why this keeps happening to me. I've tried so hard to be happy and maintian a positive attitude, but I just don't understand. I want so badly to "get" why I keep going through trials-one after another-that just don't seem to end.
My brain tells me that there's something more to this. Something more that I (or someone else) is supposed to get out of these problems. I know that life's not supposed to be fair, and that things happen for a reason. My brain tells me that I have so much to live for and so many blessings, and that I should just be grateful for those. It also tells me that there are SO many people in the world who are worse off than I am.
My heart and soul just want to kick and scream and yell that it's just not fair. I want to know why. As Sally Field says in "Steel Magnolias," "I want to hit someone until they hurt like I do."
I also want to know that it's going to end. I don't want to spend the rest of my life being poked, prodded, cut open, examined, and in pain.
I had just gotten (relatively) over the disappointment of the kidney transplant postponement. I had just accepted the fact that I added two more pills to my arsenal.
When am I going to get a break?
Monday, November 29, 2010
Monday, November 22, 2010
Back in the Saddle Again
So, here I sit...at dialysis...again. (I feel like Forrest Gump when he talks about how he met the President...again...)
It's a strange and sorted tale on why I'm back. Whether you want to hear about it or not is up to you, but here goes:
Two weeks before my transplant was scheduled, I went to Mayo for a CT scan of my kidneys. The docs wanted to make sure I was still cancer-free. (I had a cancerous tumor removed from my right kidney in 2008.)
One week before transplant was scheduled, I had a series of appointments and tests to prepare for surgery. In one of the appointments, my nurse/coordinator mentioned that the CT scan showed that my aorta bypass that I had done last December was now blocked on the right side, and that needed to be fixed before they could transplant the kidney. (They attach the new kidney on the right side and attach the renal artery to the aorta on the right side.) She scheduled an appointment with a vascular surgeon, and I saw him on Thursday. (Five days before scheduled transplant.) He said that he could go in and put a stent in my aorta, which would increase the blood flow and make the transplant possible. When I asked him about the bypass graft, he said, "Oh, that's no good anymore."
I was floored. This entire kidney ordeal began immediatley after I had the bypass surgery. I felt like the entire last year and all of the problems I've had have been for nothing, as the end result was that nothing was improved, and we were back to square one. This was hard news to take.
The surgeon said that he could schedule the procedure for sometime in the next couple of weeks, at which time his intern spoke up and said, "Her transplant is scheduled for Tuesday." He looked a little stressed, but said that we could schedule it for Monday.
Okay--so at this point, I'm thinking that it's not going to be a big deal. Stent in on Monday, transplant on Tuesday. I can do this.
We go in Monday morning to prepare for the procedure. It doesn't take long...I wasn't even under heavy anesthesia for it. I was out by early afternoon and visited with Gordon and the kids before they checked in to the hotel and went to pick up Aaron and Michelle from the airport.
Around 1:30 a.m. on Tuesday, I woke up and my right foot was completely numb. I called the nurse, who called the doctor. They couldn't figure out why this was happening, so they called the surgeon. He said to get up and walk around a bit. I took two laps around the ward, and my foot was still numb and my right leg was throbbing and hurting. By this time, the surgeon came in (I'm sure I woke him up), took a look at my legs and feet and said that we needed to do some emergency surgery to clean out the arteries in my legs. He said that what happened was that when they cleaned out my artery and put the stent in, it sent "trash" and clots down to my legs and feet. You could even see black and blue marks on the bottom of my feet where the "trash" had settled. He also said this surgery would mean we'd need to postpone the transplant.
I'm hurting pretty bad by this point...the morphine and percoset they gave me isn't even touching the pain. I call Gordon to tell him the news, and then get wheeled down to the OR around 3:30.
I'm so upset at this point that tears roll down my cheeks. I try hard not to think of the question, "WHY??" but that's all that keeps coming to me. I'm so frustrated. I feel bad for Michelle, who was anticipating this (and anticipating it being over!) I feel bad for my friends and family who have prayed so hard for me. I feel bad for my kids because I know that they want their mom back. I feel bad for Gordon, who has been there with me every step of the way.
I come out of surgery sore, but feeling better. I see Michelle and Aaron before they leave to fly home. Michelle and I look at each other and start to cry a bit. Aaron grabs my hand and says, "Michelle is here for you whenever you need her." That meant so much to me. Later that day, Gordon's mom and sister come to see me. Gordon's mom took my hand and told me how courageous I was. I felt kind of wimpy, and that buoyed me up.
Gordon took Ian and Courtnie home Tuesday night so that they could go to school the rest of the week. I called to say good night as they were on their way home. When Ian and I spoke, he said, "Mom, I know that everything happens for a reason." His faith hit me so hard, and helped me to stop feeling sorry for myself. He's right, and I know it. That boy never ceases to amaze me--such a strong faith and testimony of obedience for such a young man.
I was blessed with amazing nurses for my entire stay. They kept me smiling and happy. Gordon came each day and we held hands and watched movies. I'm so grateful for him. He's truly my best friend.
While in the hospital, I had three blood draws a day, as they were testing my blood for the coumadin level and to see how fast it clots. I think I counted thirty tiny scabs where a needle was inserted for either an IV or a blood draw. I LOVE that I have wonderful veins! :^p By Friday, all of my levels were good and I was able to go home.
So nice to be home. I'm anxious to do all I can to help my postponed transplant happen sooner rather than later. As soon as my blood levels level out, we can start discussing scheduling the tranplant. The docs said one to three months, but I'm pushing for the shorter time. I see the vascular surgeon on Dec. 3 and see a vascular disease specialist on Dec 8. Hopeful for answers.
Again, I'm reminded that they ONLY thing we have complete control over in our lives is our attitude.
It's a strange and sorted tale on why I'm back. Whether you want to hear about it or not is up to you, but here goes:
Two weeks before my transplant was scheduled, I went to Mayo for a CT scan of my kidneys. The docs wanted to make sure I was still cancer-free. (I had a cancerous tumor removed from my right kidney in 2008.)
One week before transplant was scheduled, I had a series of appointments and tests to prepare for surgery. In one of the appointments, my nurse/coordinator mentioned that the CT scan showed that my aorta bypass that I had done last December was now blocked on the right side, and that needed to be fixed before they could transplant the kidney. (They attach the new kidney on the right side and attach the renal artery to the aorta on the right side.) She scheduled an appointment with a vascular surgeon, and I saw him on Thursday. (Five days before scheduled transplant.) He said that he could go in and put a stent in my aorta, which would increase the blood flow and make the transplant possible. When I asked him about the bypass graft, he said, "Oh, that's no good anymore."
I was floored. This entire kidney ordeal began immediatley after I had the bypass surgery. I felt like the entire last year and all of the problems I've had have been for nothing, as the end result was that nothing was improved, and we were back to square one. This was hard news to take.
The surgeon said that he could schedule the procedure for sometime in the next couple of weeks, at which time his intern spoke up and said, "Her transplant is scheduled for Tuesday." He looked a little stressed, but said that we could schedule it for Monday.
Okay--so at this point, I'm thinking that it's not going to be a big deal. Stent in on Monday, transplant on Tuesday. I can do this.
We go in Monday morning to prepare for the procedure. It doesn't take long...I wasn't even under heavy anesthesia for it. I was out by early afternoon and visited with Gordon and the kids before they checked in to the hotel and went to pick up Aaron and Michelle from the airport.
Around 1:30 a.m. on Tuesday, I woke up and my right foot was completely numb. I called the nurse, who called the doctor. They couldn't figure out why this was happening, so they called the surgeon. He said to get up and walk around a bit. I took two laps around the ward, and my foot was still numb and my right leg was throbbing and hurting. By this time, the surgeon came in (I'm sure I woke him up), took a look at my legs and feet and said that we needed to do some emergency surgery to clean out the arteries in my legs. He said that what happened was that when they cleaned out my artery and put the stent in, it sent "trash" and clots down to my legs and feet. You could even see black and blue marks on the bottom of my feet where the "trash" had settled. He also said this surgery would mean we'd need to postpone the transplant.
I'm hurting pretty bad by this point...the morphine and percoset they gave me isn't even touching the pain. I call Gordon to tell him the news, and then get wheeled down to the OR around 3:30.
I'm so upset at this point that tears roll down my cheeks. I try hard not to think of the question, "WHY??" but that's all that keeps coming to me. I'm so frustrated. I feel bad for Michelle, who was anticipating this (and anticipating it being over!) I feel bad for my friends and family who have prayed so hard for me. I feel bad for my kids because I know that they want their mom back. I feel bad for Gordon, who has been there with me every step of the way.
I come out of surgery sore, but feeling better. I see Michelle and Aaron before they leave to fly home. Michelle and I look at each other and start to cry a bit. Aaron grabs my hand and says, "Michelle is here for you whenever you need her." That meant so much to me. Later that day, Gordon's mom and sister come to see me. Gordon's mom took my hand and told me how courageous I was. I felt kind of wimpy, and that buoyed me up.
Gordon took Ian and Courtnie home Tuesday night so that they could go to school the rest of the week. I called to say good night as they were on their way home. When Ian and I spoke, he said, "Mom, I know that everything happens for a reason." His faith hit me so hard, and helped me to stop feeling sorry for myself. He's right, and I know it. That boy never ceases to amaze me--such a strong faith and testimony of obedience for such a young man.
I was blessed with amazing nurses for my entire stay. They kept me smiling and happy. Gordon came each day and we held hands and watched movies. I'm so grateful for him. He's truly my best friend.
While in the hospital, I had three blood draws a day, as they were testing my blood for the coumadin level and to see how fast it clots. I think I counted thirty tiny scabs where a needle was inserted for either an IV or a blood draw. I LOVE that I have wonderful veins! :^p By Friday, all of my levels were good and I was able to go home.
So nice to be home. I'm anxious to do all I can to help my postponed transplant happen sooner rather than later. As soon as my blood levels level out, we can start discussing scheduling the tranplant. The docs said one to three months, but I'm pushing for the shorter time. I see the vascular surgeon on Dec. 3 and see a vascular disease specialist on Dec 8. Hopeful for answers.
Again, I'm reminded that they ONLY thing we have complete control over in our lives is our attitude.
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