Log In or Register to Join The Conversation!
Viewing 18 reply threads
  • Author
    Posts
    • #26996
      Colleen Steele
      Keymaster

      We are about to jump into September and nudge our way into Fall. What is on your medical agenda this month? Share your schedule with us and any questions or concerns you have about any of it. We like to focus on mental wellness too. Do you have any special plans or projects you are looking forward to in September? We would love to hear about them too!

    • #27004
      Jen Cueva
      Moderator

      September is here so fast! You would think that with many of us still on “lockdowns,” the time would be slower. I think it is passing me by so fast. Do y’all?

      I had one appt. today virtual and one tomorrow with pain management. I also am looking forward to my follow-up with the Neurologist this month. PH follow-up the end of the month, but it will be virtual. My last one was in person.

      I am looking forward to cooler temps, maybe by the end of the month here in Texas, hehe. Yesterday we had a heat index of 118! That is too hot for my liking. Sasha did not want to go out either, hehe. Thankful for AC!

      Does Cullen have any more appts. this month?

    • #27015
      Sally Hoffman
      Participant

      Hi My September medical calendar started today with blood work for my kidney angioplasty on Sept.8th , and, believe it or not, a Covid-19 Antibody test. The other day I read an article that research is showing a budding epidemic of kidney failure due to Covid 19. We began to look back at the timeline associated with my kidney problems and realized that although here in Florida there was no covid in November, I was in NEW YORK for Thanksgiving. We drove from FL to NY arriving on 11/24 to visit my sister and then moved on to visit friends and family for the holiday. Two days before Thanksgiving I spent a day in bed with Shaking Chills, it happened again in the middle of Thanksgiving dinner. Felt fine after that for a while and in early December the kidney problems began to become serious. At that time we barely knew about covid and certainly not about shaking chills. My kidneys deteriorated very quickly and I went from stage 2 to 4 by August. Since absolutely no-one I was with got sick, we never associated the chills with covid. My doctor now tells me you can be a non transmitter. (Thank goodness). Unfortunately, if the test is negative we really won’t know it I had it because the antibodies could be gone by this time. But it does look like it because of the rapidity of the kidney failure.Sally

    • #27050
      Colleen Steele
      Keymaster

      @mainegal agh, I do wonder if you had Covid. I have a friend who had the same symptoms in December, before we became aware of Covid. To this day they wonder if that is what they had. I’m sorry that you might not ever know if that is what caused your kidney disease.

      I had not hear about the increase in kidney failure associated with Covid. That makes me worried even more. My son is in Stage 3 kidney disease…his kidneys wouldn’t stand a chance with Covid.

    • #27052
      Jen Cueva
      Moderator

      Hi @mainegal, I have heard of several who think that they could have had COVID the end of last year. My mom had what they called a “mega-infection” around that time, too, and we had no real answers. Finally, with IV antibiotics and anti-inflammatories, she was feeling better. It sure is frustrating not knowing and not having clear answers.

      Sadly, with COVID, many organs, including the kidneys, can be involved. HYes, very scary! I can relate @colleensteele since I also have Stage 3 kidney disease. So frightening, isn’t it?

      .

    • #27097
      Rebecca Talkie
      Participant

      I started September with another episode of passing out. This time, I have no clue how long I was out. But I was outside watering a plant that needs more than normal, the next thing I know I have the sensation of falling. I woke up on my back on a rock pathway. I knew my husband was outside so I yelled for him. ( Why didn’t he see this?) The neighbor came over to help and they got me up on a stool and I was able to get up from there. I must have been down for a while – why do I know this? I have been bitten all over my back, around my sides and over my abdomen and both breasts by something extremely itchy. It has been miserable. My girlfriend thinks I must have landed on an ant pile. So I notified my Dr office that I passed out again. It earned me an appointment for next week instead of the end of the month. I was already scheduled for an Echo. But now they will determine if I get another Right Heart Cath at this new appointment. Sooooo…. maybe right heart cath or maybe just an Echo.

    • #27112
      Jen Cueva
      Moderator

      Oh no, @becca, I am sorry to hear of starting your month by passing out again! I cannot imagine passing out back, and my hubby worries about this when he is at work all day. Some days, I do not go out in the backyard, but when I do, I carry my phone with me.

      I am grateful that you did not injure yourself. I hope the itchy is improved as that in itself can be miserable. I am happy that your neighbor and hubby were able to help you up but know you want to know why you are passing out again.

      Please keep us posted on your Echo and your doctor’s report. I am glad that you are doing it sooner than the end of the month. Stay away from the ants, and stay safe.

    • #27116
      Colleen Steele
      Keymaster

      He had a virtual appointment today with cardiology. The doctor is very happy with Cullen’s blood pressure since changing his meds. He has his first headache clinic appointment this month and a nephrology appointment.

      Agh, Jen those temps are awful! I assume you just stay inside with air conditioning? You have a busy month ahead of you with appointments. I’ll be anxious to hear how they all go.

    • #27117
      Colleen Steele
      Keymaster

      Oh no @becca I am so sorry that happened! Passing out is bad enough but being out long enough to be chewed up by an insect the way you were must really worry you. I’m glad your doctor has called you in for an appointment. Please update us when you can. I swear by a product called After Bite. It comes in a green box and any pharmacy sells it. Really helps reduce itching.

    • #27141
      Jen Cueva
      Moderator

      Hi @colleensteele, it sounds like you and Cullen will be busy this month, too. I am grateful that the new meds are helping his BP. Is he adjusting better?

      I am thankful for you and your support as always.

    • #27516
      Jen Cueva
      Moderator

      Hi @mainegal, how are you doing after your kidney procedure last month? Just checking in on you and hope that things are going well.

    • #27517
      Sally Hoffman
      Participant

      Hi Jen, So far things are going very well. I’ve been taken off the carvedolil. It was causing me breathing problems. I am back on Atenolil, which appears to be doing the trick. I have also had the opportunity to go up to 1200 on the Uptravi. Not having much in the way of side effects. I am very grateful. Thank you for asking.

    • #27521
      Jen Cueva
      Moderator

      Hi @mainegal, I am so happy that things are going very well for you. I hope that the change back to atenolol will work better for you. It sounds like it is thus far.

      Wow, going up so quickly after your procedure, that is great news! Even better is that you do not have many new side effects. I pray that this continues to work well for you. When do you follow-up with your doctors again? Take care, and please keep us posted.

    • #27533
      Colleen Steele
      Keymaster

      @mainegal that is great news that you are handling Uptravi so well! Keep us updated on how it is going for you and if you start noticing improvement in yourself.

      My son and a transplant recipient and he takes Carvedilol for his high blood pressure. So far he hasn’t had any issues with it but if he starts to, it’s good to hear there is another option. Do the doctor’s know why you were having breathing problems on Carvedilol? Is that a common side-effect?

    • #27537
      Rebecca Talkie
      Participant

      Well, my September was full. I started it with passing out…again. Then, the night before my Echo, I had an odd episode with what I originally thought was my asthma. I was in my laundry room and got too big of a whiff of a highly perfumed fabric softener I don’t normally use. My chest tightened up and then I had brief jaw pain. I hit my rescue inhaler 3 times but no real relief. Sat down and considered calling 911, but it subsided. It was brief and not really that painful, so I messaged the Doctor and let it go. Then I had my Echo on a Monday and followed on Wednesday with another Right Heart Cath. But this ends on a good note. On September 30, I got good news. Echo was stable and my right heart cath – was IMPROVED. My Doctor said that because I have Vasoreactive PHTN and my cath improved, chances are I will be able to remain controlled on the medication I am on. I need to keep using my C-Pap, of course, but don’t need to see him for 6 months. But…..what about the passing out? He wants me to find a neurologist and have some testing to see if they can find a neurological reason for that. Great……

    • #27550
      Jen Cueva
      Moderator

      Oh no, @becca, I am so sorry that you do not have any answers yet. Passing out is huge. I know the frustrations of this all. I was not passing out but faint0like and had some neuro issues. They said it was PH, and the PH doc says neuro. I have one more MRI coming up, then IDK what the plan will be.

      Like you, my echo was pretty stable, thankfully. But the answers would be nice. I hope and pray that you have no more passing out issues, and you get answers ASAP. Take care and cheers to a better month; October is here. Let us know how we can best support you. We got this together!

    • #27557
      Sally Hoffman
      Participant

      Hi Colleen and Jen. Thank you for all the good wishes. Colleen, Carvedilol is a really good beta blocker. Just didn’t work out for me. The literature does say it can cause difficulty breathing. I should’ve read the side effects sooner. I have also had a past history of difficulty with BP meds. I have an echo and visit with the cardiologist in mid Oct. So far so good. Thank you again.

    • #27563
      Jen Cueva
      Moderator

      Hi @mainegal, we all react differently to medications. It is so strange.

      I am happy to hear that all is well thus far. Please do keep us posted when you do go for your echo and cardiologist appointment. I hope the good news continues for you.

      Take care, and stay safe.

    • #27577
      Colleen Steele
      Keymaster

      @mainegal this makes for a good opportunity to point out to everyone that just because a treatment isn’t good for one person, it doesn’t mean it won’t help you…and vice versa. My son no longer has PH since transplant so that is in his favor in regard to Carvedilol. But he was placed on a blood pressure medication last month that might help others but it made him worse. It interacted poorly with his immunosuppresants. It does take trial and error sometimes to reach the best treatments and dosages.

      Let us know how your appointment later this month goes. It sounds like you are in good hands.

Viewing 18 reply threads
  • You must be logged in to reply to this topic.
Copyright © 2017-2020 All rights reserved.

©2020 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account