This topic contains 14 replies, has 5 voices, and was last updated by  Jen Cueva 1 month, 2 weeks ago.

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  • #19531
     Colleen Steele 

    How do you cope with decline? My son met with his nephrologist today and was informed that his kidney disease has worsened. He was resting comfortably at Stage 2 for the past few years but today was bumped up to Stage 3. To make matters worse out of the blue his blood pressure climbed and he’s not feeling well. He will be starting an additional BP medication today and hopefully that will help. This has put a damper on his holiday weekend plans. Instead of taking a road trip with his brother he will be staying home.

    He is far from critical and for the most part is still considered stable, but news of any decline is never easy. He’s feeling too sick right now to really dwell on what he was told today but I’m on edge and concerned.

    Right now the way I am coping with decline is by worrying about the future and the worst case scenario. I know I should just focus on the here and now but my mind keeps wandering. It’s hard not to think about the possibility that he might need yet another transplant in the future.

  • #19543
     Jen Cueva 

    Colleen, I’m saddened to hear that your son’s kidney disease is progressing. Poor guy!

    I hope and pray that the additional blood pressure med will help to lower his blood pressure.

    Heartbreaking to hear that he had to cancel his plans with his brother. I’m sure he’s bummed and beyond frustrated. Canceling of plans due to health issues, suck!

    I can understand how you struggle with the fear of decline. As a mother, we always worry about our kids. Watching your son go through the transplant process, I’m sure was difficult.

    I think that telling others to focus on the positives is simple. Worry definitely is something that I am guilty of, too.

    But, reminding ourselves to focus on the moment helps.

    It’s only natural to have anxieties and fears as we deal with decline. I’ve experienced so many “ ups and downs “, that it’s difficult sometimes. I constantly deal with the ” what ifs” in my mind. I’m sure you’re going through a season of worry after learning his decline.

    Thoughts and prayers are with you as I cannot imagine the emotional rollercoaster that you experience. Hugs to you.

  • #19553
     Jen Cueva 

    Hi Colleen, I wanted to check-in and see how your son is doing today. I am sure he is bummed since he had to cancel his trip.

    I hope that y’all are having a relaxing day.

    • #19566
       Colleen Steele 

      Thanks Jen! Sorry I didn’t respond sooner. I enjoyed down time this weekend and didn’t get on-line very often.

      My son is a very layed back kind of guy. He doesn’t get rattled too easily so he handled the change in plans with the mind set of, “I’ll go next time.” His blood pressure came back down without him having to take his emergency medication. A medication was recently changed and he’s always so sensitive to any new drug so it might have played a part in the high BP. The other thing is that one doctor told him to drink 3 liters of water but his nephologist said that’s too much, to just do 2. I wonder if he was getting too much fluids, also causing a reaction.

      But then, there is also the fact that his labs are showing increased kidney decline so if you factor all this in, it’s no wonder his blood pressure has gone crazy again.

      Thanks for checking in. I appreciate it!

      • #19580
         Jen Cueva 

        No apology, needed, Colleen!

        I figured you may be enjoying some down time, which I am sure was much needed after last week.

        I am glad that your son has not had to take his emergency BP med. So frustrating, when we are unsure of what exactly is the cause of certain issues. As you mention, so many factors may be contributing and possibly, everything at once.

        Your son is fortunate to have you. I love your focus on the positives and that he is not having pain. My continued thoughts and prayers are with you. I know us Moms tend to over worry oourselves at times Hugs to you.

  • #19563
     V.R. Peterson 

    @colleensteele, I’m so sorry for the news you and your son recently received. Your son and your family are in my thoughts and prayers.

    When I discovered late last year that my son needed further medical intervention after his PTE surgery “cure”, I was devastated. While I’ll never admit it to my son, my mind automatically went to worst case scenario. After I found out what treatment they were doing for him (Balloon Pulmonary Angioplasty), I was able to focus my energies on researching the treatment and success rate (which is very good). Have I stopped worrying? Nope, it’s not in this mother’s ability to stop worrying altogether. However, I am able to breathe a little easier knowing my son is getting the best of care and has a very good prognosis.

    After the initial shock — and then the research — my next step was to ask for prayers for my son, as I’m a strong believer in the power of prayer. If it’s okay with you, I’ll keep you and your son in my thoughts and prayers.

    • #19567
       Colleen Steele 

      Thank you! I very much believe in the power of prayer too! I allowed myself some time to let my mind worry about the worst but now I’m into the more familiar, action mode. Like you mentioned that you do yourself, I’m researching and educating myself and my son. The most important thing is that he isn’t symptomatic except for the high blood pressure. He’s not in any pain or having any other issues and that’s where I’m keeping my focus. The goal is to keep him at his new stable for as long as possible.

      Your son is fortunate to have a loving and supportive mom and from the sounds of it, an excellent medical team. I will keep him in my prayers Keep us updated on how he is doing.

      • #19573
         V.R. Peterson 

        Thank you Colleen. I’ll keep y’all updated. I hope you do the same as your son makes progress.

    • #19581
       Jen Cueva 

      @mamabear007, too funny! As I typed to Colleen that us Moms tend to “over worry” ourselves, I was thinking, that is not possible. LOL

      Your son is lucky to have you on his side. Hugs to you and hope things are growing well for y’all this week.

      I, too believe in the power of prayer. Too often, prayers have brought me through some tough times.

  • #19576
     Jimi Mcintosh 

    Sorry to hear that your son is experiencing a decline in kidney
    function. I have been balancing my
    BP and Kidney function for over 20 years and I am currently a 3-4 depending upon the the meds and amount of fluid that I take. I take diuretics and drink 72 to 98 oz of water per day.

    I had a great nephrologist, that specializes in PH. I suffer from kidney
    Anemia, and my goal is to avoid dialysis. Check the meds that he was s taking for interactions, get his doctors to talk and agree on the fluid intake, watch the sodium, look at the fruit and vegetables. I find it is good to void frequently. He is at a good place at stage 2, as a mother try to limit the worrying.

    • #19582
       Jen Cueva 

      Thanks, Jimi for sharing. Wow, 20 years dealing with the kidney issues. I have only been dealing with mine for the last 3-4 years, or so. AS you mention, I fluctuate between a stage 3-4. I try not to focus on the number but rather how I am feeling.

      For example, if I am urinating as usual and not having excruciating back pains and itchy skin, I know I am not at my “worst”.

      You offer some great tips. Often we do not realize the water content in our fruits and veggies. I am unable to eat much melon at all in the summer. This is a bummer, as I love all melons, but my fluid restrictions will not allow me to enjoy often.

      You drink much more fluids than I am allowed. I have tried to play around and some days I am able to increase my water intake without issues. Summer is by far the toughest for me with this.

    • #19587
       Colleen Steele 

      Wow Jimi, I find it inspiring that you have managed with kidney disease for 20 years! My son was stage two for the past 3 years but just bumped up to stage 3. From what I understand, following all that you mentioned, it is possible to not progress further for quite a while. I’m hoping he can remain stable for as long as you have.

      • #19611
         Brittany Foster 

        Interesting to read about the different symptoms you all are experiencing with kidney disease. Someone very close to me was just diagnosed with this as well as liver cirrhosis.It is hard to see them going through pain. I didn’t know that the itchiness was a sign until I read these posts. He had to be given medications for his itchiness because it was causing such dryness of the skin and red patches.

        Colleen, I am sorry that your son is now stage 3. was this something that was determined recently? Was he showing signs and symptoms or was this found during blood testing? What do they do differently after having it progress?

      • #19630
         Jen Cueva 

        Hi Brittany, I am sorry to hear about your friend struggling with liver cirrhosis as well as kidney disease. That itching must be horrible. I know when the liver as well as kidneys are unable to filter out the blood, this can cause itching. The toxins build up in our blood and cause the itching.

        When my kidneys are on the worst days, I have itching pretty bad and I take meds for that. I cannot even imagine the pain that your friend endures with itching due to both diseases.

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