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    • #23662
      Jen Cueva
      Keymaster

      This week I had two scheduled appointments. I was planning to cancel the one for my kidney doctor. But, before I called, they called and canceled it. Of course, this is to protect us with this COVID-19 pandemic. Today, my follow-up appointment with my pain management doctor for next week was switched to a phone consult. This appointment was already moved ahead a week once. Have y’all had any appointments that were canceled by the office? Have any of your appointments been changed to telephone consults?

      Next week, I have two more planned, all were planned a month or so. I m planning to cancel one. The other one, my therapy appointment that’s much needed, will hopefully be changed to phone consult. I think that I will email her tomorrow morning to find out. Both pain management and therapy are essential and needed.

      Share your thoughts on appointments and phone consults.

    • #23681
      Brittany Foster
      Keymaster

      HI Jen,


      @jenc
      I had my port rescheduled by the surgeon because he said that I am just too high risk to go into the hospital right now. I know that they are wanting to take the best care and caution and not mess around when it comes to this. But at the same time NOT having the port is actually going to negatively impact my health and would really negatively impact my body if I were to ever catch anything. I don’t have the defenses right now to fight anything off and can’t exactly heal myself without food or proper hydration. It is a catch 22 for sure. But I also would rather be safe than sorry too.

    • #23699
      Jen Cueva
      Keymaster

      Hey @brittany-foster, I hate about your port placement but also want you to be safe. I understand how important this is for your nutritional needs. I can understand your frustrations with this. I know that your medical team is doing what is best for your body at this time. It certainly is a Catch 22. Sending hugs to you from Texas.

    • #23703
      Colleen Steele
      Keymaster

      @brittany-foster you are really stuck between a rock and a hard place. It’s best if you can avoid hospitals at this time but you are also in great need of the port. I’m so sorry.

    • #23709
      Rebecca Talkie
      Participant

      So far, a follow up Echocardiogram has been rescheduled from early May to mid-June. This does mess things up for me because I had arranged to have two appointments in a single day to save travel. I was warned by the person doing this that I probably would receive more phone calls in the coming days to reschedule appointments. The thing is, none of my appointments were even in March. I already had my pain management appointment before the world went crazy. I am still wearing my 30 day heart monitor. That has been going smoothly, too smoothly. Until yesterday, other than a lot of fatigue and occasional shortness of breath, nothing had been happening. Then while I was napping, I was awakened by two separate runs of….whatever has been happening. I had enough of my wits about me to punch the button and mark them. So, maybe they got something. I feel for you Brittany. Like Colleen said, you are between a rock and a hard place.

    • #23715
      Brittany Foster
      Keymaster

      @jenc I know that they are doing what is best and they think they are going to keep me safe this way from things getting any worse if I get the virus. But at the same time it has been really hard for me to wrap my head around the fact that I feel pretty alone with managing all of this right now because there is just NOTHING anyone can do. It is a really helpless feeling and hard to sit with for sure!

    • #23740
      Jen Cueva
      Keymaster

      Oh @brittany-foster, I can only imagine how difficult this must be for you. I am keeping you in my thoughts and prayers as I know this port is something that you need. I also understand that this is all out of our control. I am here to support you as needed. It is a tough time—hugs from Texas.

    • #23939
      Colleen Steele
      Keymaster

      I received 2 calls today canceling two important appointments that Cullen had coming up in April. Not surprised, I was leaning towards canceling them myself. His nephrologist is going to call on the day in which the appointment was scheduled, to touch base over the phone. Better than nothing I suppose. However, we are trying to transition him to adult care at a hospital in WA so he won’t have to travel to CA any longer. His first appointment was supposed to be the 7th. Now I have to contact all of his pediatric doctors and ask if they can maintain his care for a little longer. I just need someone to keep refilling meds and be available if he has concerns. I’m sure I won’t run into issues. I was just really anxious to get this transition phase moving.

    • #23946
      Jen Cueva
      Keymaster

      Oh no, @colleensteele, I know that y’all have been preparing for this transition for some time. I know this must cause added stress for you. It sounds like you will be making calls and trying to figure this out. I am sure that his pediatric doctors will cover him until then. What a mess! I am so sorry that you have to worry about this, too. I hope all works out and I am sure it will. Keep jus updated. I’m sending you big hugs and prayers from Texas.

      As far as the phone appointments, I have had my pain management appointment, therapy, and kidney doctor appointments all over the phone for the last few weeks. Skype is also a way that some are doing it versus just over the phone. That is my least favorite, Hehe.

    • #23950
      Colleen Steele
      Keymaster

      Thanks @jenc. I’m on the fence between maybe a little grateful that during these uncertain times he has the comfort of continuing care with the team he has grown up with, and kicking myself for putting off the transition for as long as I did. His birthday is in November. As long as we are able to make the transition before he turns 21 because beyond that I’m told that insurance can become a nightmare.

    • #23951
      Colleen Steele
      Keymaster

      @brittany-foster when I’m tossing and turning at night you are included in my thoughts. I’ve been concerned about the port postponement, because I know it’s not just taking a physical toll on you but a mental one as well. Hopefully the world will recover from this virus sooner than later and you can get this back on the books.

    • #23958
      Jen Cueva
      Keymaster

      @colleensteele, I am sure that all will work out with the transition of your son’s care. November should not be an issue. I, too, would think the positive is that he will have the same medical team in the meantime to help if y’all need anything. I am thinking of y’all and hoping all works out for the best. You will get there, be gentle with yourself.

    • #23969
      Brittany Foster
      Keymaster

      @colleensteele and @jenc I know all of this is hard, especially with all of the cancelled appointments or the surgeries and procedures that are now getting pushed back as non urgent. It amazes me how the surgeons are able to make these calls as to what is necessary right now and what isn’t. My PCP was luckily able to get me into get a PICC line tomorrow. It at least will hopefully provide me with some hydration and electrolytes while I wait around for my port surgery. It has been a hard wait. I ended up in the ER yesterday just getting some fluids but was really dizzy at home and really dehydrated to the point where I knew I needed the extra help after going so long without it.

    • #23998
      Jen Cueva
      Keymaster

      Oh @brittany-foster, I knew about the PICC line, not about the ER. I am sorry to hear of this, but I also know this is what you needed. You could not continue with dehydration and no nutritional intake.

      It does amaze me and frustrates me both when I think about how doctors decide this. As per our discussion last week, you have had an emergency. It is scary as I often go for IV fluids. I am trying to listen to my body more than ever and do the best that I can.

      I am sending you hugs and prayers to get stronger and home soon.

    • #23999
      Jen Cueva
      Keymaster

      Hey @colleensteele, I wanted to check in to see if you have any updates on your son, who was so sick the last few weeks. I also wanted to ask how the calls went regarding your son’s care during this time. I am keeping y’all in my thoughts and prayers.

    • #24010
      Brittany Foster
      Keymaster

      @jenc it has really been challenging for me to decide on what is an emergency vs what is not an emergency. For me, I think of things related to my heart and lungs that I can’t control an emergency, but dehydration is up there on the list with essential things that I would need to get looked at, especially because it can really impact the heart and electrolytes if things are thrown off balance. I never really looked at dehydration as emergent as I do recently and seeing the effects that it has on the body and the need for such a simple solution of fluids !

    • #24039
      Jen Cueva
      Keymaster

      @Brittany, I am sure this has not been easy with trying to safeguard yourself yet get the care that you need. I am happy that you are having the port placed. As you said, your body cannot continue without fluids and nutrition. It still frustrates me as to what they think is an emergency now. I believe this is a time that we will need to advocate even more if we are experiencing an emergency.

      Dehydration is nothing to take lightly, I have ended up in bad shape on numerous occasions related to dehydration. Take care of yourself and keep us all posted. We care about you and know this is something that is been needed for some time for your health.

    • #24052
      Brittany Foster
      Keymaster

      @jenc it definitely is hard and so essential to take care of our health, especially during this time ! I never really looked at dehydration as a huge problem until I realized just how much of a problem it causes especially extra stress on the heart and vascular system when we aren’t getting enough fluids!

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