Home > kidney disease > Happy… Frustrated…. Tired… Worried… Hopeful…

Happy… Frustrated…. Tired… Worried… Hopeful…

Yep, those words would sum up how I feel these days!

Maybe I will elaborate on each one to get a better handle on what I am feeling, thinking….

I am very happy that Mark is home!! It’s nice to have him back here. It’s good to hear his voice. I love when he laughs and makes silly jokes that only he and I would understand. I am happy to feel his body next to mine when we go to bed. I enjoy watching TV with him, just talking to each other, giggling, sharing meals with him (even though my cooking skills leave a WHOLE lot to be desired, even with his assistance!) and just being close to each other.

I am happy that every day he seems to be getting stronger and seems to be on the mend. I am happy that his wound on his arm is healing, and his neck (where he had the temporary catheter) is hurting less.

I am happy that his appetite has returned. I am happy that he was feeling well enough to help with the cooking, even though his stamina is not what it used to be, but hopefully that will improve with time.

Yet I am extremely frustrated with him. He often (and this is nothing new) has an “it is what it is” attitude. In fact, whenever we would talk about health issues (even before kidney disease reared its ugly head) such as heart disease or obesity, etc, his response was…. It’s been a good run!

What the heck was that about?? Even though he might be kidding, I think that is a hell of a thing to say!! A good run is not someone dying in their 40-50s!! A good run is a 97 year old man, dying in his sleep, having suffered from a little bit of hearing loss and some minor arthritis!! THAT is a good run!

It seems like he loves to self-medicate. He will often adjust his medication dosages because he thinks he either takes too much or too little. He will decide NOT to fill a prescription because he does not want to take it. He will stop taking a medication just because he can. He recently stopped taking his Nephrocaps (which is a vitamin supplement that many dialysis patients require because dialysis removes a lot of the nutrients in the body).

Why did he stop taking it? He felt it was a waste of money. Hmmmm… waste of money would be the useless things that he buys that sit in the closet until we donate them years later!

Oh and did I mention that he was prescribed Coumadin (blood thinner) and didn’t want to take it because he felt he didn’t need it. Big fight! I won. He is now taking it. I have to pick my battles!

I also get frustrated when he does not take care of himself. I know it is HIS life, and I know that we cannot change people, yet what he does with his life also has a huge impact on mine. He will often eat foods that are on the “no-no” list (aka Renal Diet). For example, things high in salt are very bad because they cause him to retain water and raise his blood pressure. Yet, he seems to love fast food, salty snacks, and processed meats (such as bacon, spam, and vienna sausages).

He is also supposed to avoid foods that are high in phosphorus due to the fact that his kidneys can’t filter it the way that a person with healthy kidneys can. Cola is very high in phosphorus. He loves it, and he drinks it way more than he should.

He says that there are certain foods he will not give up. He feels if he has to have kidney failure, then he should have some pleasures in life. I’d like to know how spam is a pleasure! What the heck is spam made out of anyway???

I can’t remember ever being so tired in my whole life. I am not just sleepy tired, but “bone-deep, muscle aching, there is nothing that doesn’t hurt” tired!! I don’t sleep well these days. I seem to spend too much time thinking about life, health issues, the future, etc. Reading has been my saving grace these days. I don’t know what I would do without my Kindle!! What a wonderful invention and the best gift that Mark ever bought me!!! I have always loved to read, but lately it seems to calm my overactive brain and takes me out of my world into the world of a fictional character(s), and that is most welcome these days!

I guess this goes along with tired. Worried about Mark seems to be what I do best these days. I know that he didn’t sign up for kidney failure, but at the same time, there were MANY things he could have done to prolong the inevitable (being dialysis and the need for a transplant). But he didn’t. He was in denial for years. He ignored the recommendations of his doctors.

It seems that the more I read or learn about kidney disease and/or dialysis, the scarier this whole thing gets. It seems like there are so many risks and complications that can develop in a dialysis patient. Here are a few:

  • Infection (been there, done that)
  • a graft or fistula that stops working properly (been there, done that)
  • heart disease and or sudden heart attack
  • blood disorders (such as anemia — currently doing this!! Mark’s hemoglobin is very low. They upped his Erythropoietin, or EPO to raise his red blood cell production and help with his extreme fatigue. His hemoglobin was fine until he got the sepsis. In fact, it was always very good. But I am guessing, and this is just a guess, that he did not get enough protein, especially red meat and eggs, while in the hospital due to the food he chose and his lack of appetite. I also wonder how much EPO he was getting in the hospital)
  • Fatigue
  • Dietary restrictions
  • Clotting problems
  • Stroke
  • Urinary tract infections
  • Dry and itchy skin
  • Circulation problems

Well… I am sure you get the idea….But it’s not just Mark that I worry about! It’s a multitude of things. Many things are normal worries… the economy, retirement, death of family, the rising cost of everything, the future, etc. But those normal things along with Mark’s health issues can put a person over the edge! Worry + Stress = AAAHHHH!!

Yep, I am hopeful. I try very hard to see the good in things. It is not easy to do that all of the time. Life can wear you down. In life \, there is good and bad…. and with hope and faith, we can deal with the curve balls that life throws us. I am hopeful that this will have a good outcome. I want to believe that Mark will see that his doctors, friends, family, and I have his best interests at heart. I am hoping that Mark will take better care of himself, and he will realize that this is indeed a life-threatening disease, IF he does not manage it well.

I hope that Mark will continue to improve, get back on track with his diet, get a transplant, and we can live a more normal life that does not involve dialysis three days a week. I hope that a kidney will improve his health and well-being.

I know he still has hope. He still wants to get healthier, get a kidney, buy our boat, live on the water, and retire in South Carolina. We can have that with hope and faith, and some good planning.

With the hope that Mark will be fine comes the other side of my life. If he should succumb to this disease, I have faith that I will be able to move on with my life and live the life that I have dreamed about all these years. I may not get the boat (’cause it would be difficult to manage on my own), but I would still like to live in South Carolina. I would like to think I have the hope and faith (and courage) to do it. I would also like to believe that I would be okay — emotionally and financially.

So with all that I have written, it is no wonder that my brain doesn’t shut down. It is no wonder that I have an upset stomach and headaches. I am hopeful that all of this will work out….

  1. Sue Hughes
    August 7, 2010 at 8:54 PM

    ahhh Bonni….I think of you and Mark often. I’ve been where you are; feeling all those emotions. If I can give you any hope; let me say 15 years ago I never thought life would be good again… then one day (March 26, 1996) I got my transplant.
    Life is normal again, live is good, and there are many days I don’t even think about being ‘different’ because I have a transplanted kidney. You guys can get there too. The journey is hard, but I believe it is part of the process. Sue

    • August 8, 2010 at 4:09 PM

      Congratulations Sue 🙂 That’s an awesome milestone! My husband just had his six month kidneyversary and we’re thrilled it’s working as it should.

      Bonni, sounds like I felt pre transplant – tired, worried, scared, all of the above. It never goes away but it does get better, promise. I take Ativan to sleep when I’m having trouble. There’s no shame in it. If you’re not ‘ok’ how can you expect to be able to look after your loved ones..? somehow us women are expected to hold it all together. That’s also why I blog – it’s been a great therapist to me this past year and a half … sometimes you just need to get things off your chest.

      Thanks for the updates and good wishes to both of you. 🙂

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