This topic contains 19 replies, has 5 voices, and was last updated by  Brittany Foster 5 months, 3 weeks ago.

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  • #15018
     Kathleen Sheffer 
    Participant

    This afternoon I took my dog on a walk and I felt short of breath when I got to the top of the stairs. My heart was pounding. This sounds normal for a PH patient, but this isn’t normal for me anymore. It typically takes much heavier exertion to make me short of breath.

    I’ve been having symptoms like this in recent weeks, but I have been attributing it to the poor air quality in California. Now that the air is clear, I’m out of excuses.

    I called my nurse coordinator and scheduled a pulmonary function test (PFT) on Friday. This is a test I normally do every three months to monitor infection and rejection. As long as my lung function stays stable, my doctors don’t worry. I had acute rejection once a little over a year ago and my lung function dropped 8%. With treatment, I returned to my baseline, but I’m nervous to see what it will be on Friday.

    Most PH patients have probably done a PFT, but I didn’t pay attention to the numbers until after my heart-lung transplant. Have you done this test? Do you know what your lung function numbers are?

    I’m going in on Friday because I don’t want to miss something, and my next appointment isn’t until January. My last episode of rejection resolved because we caught it right away, while I was still hiking and feeling fine. This scares me, though, because I couldn’t tell that I had it. It makes me paranoid, looking for any sign that there might be a problem. I hope that I go in on Friday and everything looks good. Then I can rest easy until January. If there is a drop in lung function, maybe I will be more confident going forward that I can recognize the signs. Tonight, I’m trying not to worry too much about it, and writing to you here to cope with the anxiety. Please send me good vibes Friday morning (or any time, really).

    Transplant patients are never “out of the woods,” no matter how stable they appear. I am always waiting for the other shoe to drop, so to speak.

    Those of you who have had transplants, how do you deal with fear of rejection? Have you ever gone in to get a PFT earlier than planned? Were you glad you did?

  • #15044
     Jen Cueva 
    Participant

    Aww Kathleen,
    I cannot even begin to imagine how tough this may be, always having that fear of another rejection. I am glad that you are so proactive and want to get your PFTs checked. I hope and pray it is still the air quality as I imagine it’s lingering still some. Keep us posted.

    I do have PFTs and know a general idea of what my numbers run. This is definitely not s fave test , although no where near comparable to a RHC ( right heart Cath) , lol
    I always want to yell back to the tech when they are yelling for me to blow harder and longer lol , I told one tech, I don’t want to fall over in your booth, lol 😂

    Hugs and prayers are with you, and definitely can understand how transplant recipients are never “ out of the woods” . If PFTs are ok, maybe it’s something else? Not sure if you’re anemic or not, but I’m much more SOB when my blood counts drop.

    • #15047
       Brittany Foster 
      Keymaster

      The dreaded PFT! When I was first getting my workup done my lung function was pretty low . Some doctors would say “its the tech” or blame it on the machine or the day I was having but after consistently getting the same results no matter the tech, equipment, etc., they were finally like “Houston, we have a problem” . I get so nervous waiting for the shoe to drop without having a transplant. I can’t even imagine what it’s like to go through these emotions after going through something so life altering. Fear is such a difficult feeling to manage!

  • #15059
     Sharon Rozo 
    Participant

    Kathleen, I dread the PFTs! Sending you good thoughts and vibes that all goes well on Friday!

    • #15065
       Brittany Foster 
      Keymaster

      I dread them too! I always feel so dizzy during them and after them. It feels like a whole workout. How often do you get them?

  • #15067
     Sharon Rozo 
    Participant

    Brittany, I get lightheaded from them too! I get so annoyed when I have to take my 6MWT immediately after my PFT. I need a breather first! I’m not sure what my numbers are now, but prediagnosis I was at 33% lung capacity. I’ve improved since then with therapy, but I should probably find out the numbers. I have the PFTs done about every 3-4 months during my clinic visit. Do you get them more or less often?

    • #15068
       Brittany Foster 
      Keymaster

      That doesn’t sound thrilling doing the 6 minute walk right after that! I feel like I would do so much worse. My function is consistently around 26% so they test every 6 months or so or if I’m having any increased issues going on then they will test earlier than that. I’m glad you have therapies that help you improve ! It must make such a difference for you. Sometimes it’s hard to see the difference until we look back at how far we’ve come .

  • #15133
     Kathleen Sheffer 
    Participant

    Update: my lung function is stable. I may be paranoid, but my team was happy I came in to check it out. I did an echo today just to be sure everything’s going well with my transplanted heart. It is! Now I can relax and stop having anxiety about my breathing that affects my breathing. Ha!

    Some of this may be residual effects of the fires in California so I’m hoping I will start feeling better soon. Constant pain from an ovarian cyst isn’t helping, though. I’m really demotivated because I haven’t been feeling well. Normally I exercise every day, but I’ve gotten so out of my routine that I haven’t been very active.

    Do you manage to exercise even when you are feeling crummy? What gets you going?

    • #15142
       Brittany Foster 
      Keymaster

      Kathleen!
      That’s good to hear about the lung function being stable. I’m sure the after effects from the smoke would make a difference in the air quality and breathing for sure! I totally understand the “anxiety about breathing” making the breathing even worse. It’s hard to manage that type of anxiety because it can trigger so much for us. Just as a side note too, when I am in pain, my breathing and oxygen levels are actually worse. I think that it’s because it is my body’s natural response to tense up in response to pain. This includes tensing ALL muscles, even the ones that I use for breathing. Doing something like stretching or even some yoga with movement might help you out at least to open up your chest muscles . Even if you don’t notice yourself tensing, sometimes, like with me it’s just our bodies natural response to pain in the body ! Doing some breathing exercises (as simple as that sounds) might be good too especially in pain because I know for me, I also hold my breath more in pain (once again not something I’m always able to be conscious of doing) but others notice it when I used to be hospitalized for the same type pain you’re having. Hope these suggestions help! Always feel free to reach out to me, I can really relate to all of this. It’s crappy but I hope you start to get on the mend soon.

  • #15135
     Jen Cueva 
    Participant

    Kathleen,
    So happy to hear all came back good. I think we often drive ourselves crazy , being paranoid. But, as my PH Doc says, better to be safe than sorry. So, I’m definitely glad you got it checked out.

    I was hoping it was just from the lingering effects from the fires. Hugs and prayers that you start to feel some relief.

    I’m with you , lately I’ve been not very active and once that happens, you know a few bad days on the couch, etc.it is really tough to get back in gear to be more active. I know for myself, this time of year with the weather and time change, I tend to be more of a hermit, lol

    But, today I had made an appointment for my root touch up , so that helped, but I’m zapped again, lol

    • #15143
       Brittany Foster 
      Keymaster

      Jen,
      I get in those ruts too. But I allow myself to not exercise when I’m not feeling well. If my body can handle some light exercise like yoga or stretching then I do it, but if not then I know better not to push it to the limit. I like to exercise right when I wake up in the morning (like 45 minutes after waking up) . It seems to kickstart my metabolism for the day. The longer I wait around to exercise, the least likely I am to do it. I like to workout at my house because I have the concentrator for the oxygen here. If I bring tanks to the gym I have to worry about it running out (and gyms are super germy and I’m gotten pretty sick after going to the gym a few times so I try to just find videos online that I can do). My favorite is any Popsugar videos on youtube. They are free and they have lots of classes like pilates, low impact cardio, yoga, and I do the old school walking videos (they have those free on youtube too). My go to is Leslie Sansone lol she’s old school but the workout is good (even better when I listen to my own music instead of the strange beat in the background of the video) hahaha! Check out some of them and let me know what you think!

  • #15136
     Jen Cueva 
    Participant

    Ohh, and PS…I’m sure that pain from the ovarian cyst isn’t helping, hope you can get relief from that as well. Do you drink hot teas? I know at times hot teas make me feel better, lol ☕️

    • #15899
       Kathleen Sheffer 
      Participant

      Sorry I’m just seeing this now, @jenc. Thank you for your kind words and healing thoughts. My cyst seems to have resolved and I’m feeling much better. I normally only drink tea when I have a cold, but the temperatures have been so low at night here in Northern California that I’ve been having tea more and more at night (coffee every morning). What’s your favorite type of tea? I love peppermint and ginger flavored teas.

  • #15875
     Kaye Norlin 
    Participant

    Kathleen, Woohoo! That fear of rejection is always there in the back of my head but then so was dieing before the transplant. My PFTs are routine so far. One thing about cancer, PAH, and transplants, I can deal with it as long as I know what I am dealing with!
    My exercise routine has suffered since last fall. I have been dealing with side effects of drugs and have been afraid to be too far away from my bathroom (which I know is clean). Getting it under control now. My GI doc did several tests to see if my cancer was back and everything came out great, so just the drugs.
    I have to get back into the routine. We have had to cancel yoga classes often in the last month because of the lovely Illinois weather.

    • #15879
       Brittany Foster 
      Keymaster

      Hi Kaye,
      I know that this message was directed at Kathleen, but I had to stop and read it especially because I can relate to what you say so much. This quote is perfect for everything I’m going through right now , “I can deal with it as long as I know what I am dealing with!”
      My thoughts exactly ! It is better to “know” than to just take guesses at what’s going on and hope to put out the flames with meds.

      With my current GI issues I know what you mean by not wanting to go to the gym especially if there is literally an accident waiting to happen! I hope these symptoms start to slow down for you though. It has to be one of the WORST feelings with physical discomfort and the emotional toll it takes on top of all other things you are dealing with!

    • #15898
       Kathleen Sheffer 
      Participant

      I’m sorry you’re having these issues, Kaye. I’ve been feeling what I think are just symptoms of my gastroparesis lately. Definitely need to get back into a good exercise routine. I basically have to exercise every day or I will feel crummy. Then it begins to snowball because I don’t want to exercise when I feel that way.

      Some other medication causes of GI issues – Cellcept, unfortunately.
      Magnesium – if your dose is too high you may not be having the regularity and formation you desire. Trying not to make anyone nauseated while we discuss this, ha!
      Also make sure to check for C-diff, but I’m sure they have already!

      Do you watch any yoga videos to work out at home? I have been loving Yoga with Adriene.

  • #16404
     Kaye Norlin 
    Participant

    Hi Everyone!
    GI issues have returned to the pre-transplant/post-cancer days—so I can manage. Gastroenterologist did lots of tests and changed my med back to one that I had taken after cancer days. That helped along with the Voriconazole being discontinued after year 1. That was January 3, 2019. I have to watch what I eat closely and usually pay a price if I get silly when I eat out. I take Mag plus protein because it causes fewer digestive issues than just magnesium by itself; it does help.
    Still the fear of rejection is there and, unless someone points out that maybe I feel a certain way because of possible rejection, I am very skilled at ignoring the possibility. I just keep moving forward.
    As far as yoga goes, I don’t watch videos but I will check out the Adriene videos. I can’t wait until the community center gets going and I will have a place to practice more often, and more groups to teach.

    • #16406
       Brittany Foster 
      Keymaster

      Hi Kaye,
      That’s so good to hear that you have things more under control with your GI troubles. I know how awful all of that can be. You seem to have the right attitude and sometimes it’s best to just not think of the possibility of things going wrong because it’s so easy to get caught up in the anxiety of it all if you let those thoughts take up too much space. That would be great to get back to yoga again! Do you have any favorite videos or do you usually do classes at a center ?

    • #16409
       Kathleen Sheffer 
      Participant

      Kaye, I’m glad to hear you are able to ignore the possibility of rejection and focus on the present.

      I just posted about magnesium supplementation and I’m happy to hear you take mag plus protein. I tried switching to whatever Costco sells and it caused a lot of GI issues until I went back on the mag plus tabs.

      The weather is finally getting a bit nicer here in California and I’m glad to start exercising outside again! Let me know what you think of the yoga videos.

      • #16412
         Brittany Foster 
        Keymaster

        So jealous of your California weather Kathleen! It literally snowed here over the weekend and then was close to 60 degrees the next day. I’m hoping by the time surgery is done and over with, mother nature will be more kind so I can get out and enjoy the sunshine! I definitely don’t take any of that for granted that’s for sure.

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