This topic contains 32 replies, has 7 voices, and was last updated by  Jen Cueva 3 weeks, 2 days ago.

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  • #20028
     Brittany Foster 
    Keymaster

    I am sure all of us have had our share of bad news. It is hard to hear a test result that isn’t what I wanted to hear. After so long with my esophagus not having good motility in it and throwing up almost everything that I eat, I had a study done yesterday that proved that my esophagus is the major part of my vomiting and my GI troubles. This is what I was most afraid of because there really is limited treatment and there is no “fix” for this. During my testing, even just drinking liquid barium got stuck in my esophagus and I began vomiting up what was stuck.

    It was good in a way to get the testing done because it showed the reasons WHY I am throwing up whole pieces of food and WHY things look like they aren’t being digested. As good as it was to get confirmation for my symptoms, it still hurt to see that even after a major surgery to help fix my compression of the esophagus, it is still really struggling to have any movement at all.

    I am currently struggling with feelings of depression and anxiety around what will happen next and what this looks like for my future. When you get discouraging or upsetting test results, how do you help your mental health? What do you do to help you cope with feelings of anxiety or sadness around negative news?

  • #20030
     Colleen Steele 
    Keymaster

    Brittany, I find the process of receiving bad news to be similar to the steps one might experience with grieving. There is sadness, anxiety, anger, denial, acceptance (all not necessarily in that order).

    One of many examples I could give was when my son was told that it was time to list him for transplant. We drove out to CA knowing that this is what we were going to hear. We had followed too many other PH stories to not recognize the signs of serious decline and the end of possibilities.

    We sat down with his doctor and as he started to give us the news that we were expecting, out reaction seemed to still be of surprise. Thinking something and hearing it out loud are two different things. We wept, we questioned why, and then later that night we went out to dinner with another PH family and acceptance started to be felt.

    Honestly, the best way for myself, my son and our family to deal with bad news is to reach out to other families going through the same thing as we are. When your trying to adjust to bad news it’s exhausting to have to explain to someone why it’s bad news and what it means for you. Going to someone who has been through it or at least has an understanding of the reality is more healing.

    • #20037
       Brittany Foster 
      Keymaster

      Colleen,
      Really true about finding people that can relate to what you are going through and talking to them about it all. It must have been therapeutic to just get out your worries and thoughts about it and have someone actually “get” what you are going through. I always love talking here too about things that are on my mind for that reason because I know I’m going to get feedback from people who can truly understand. Maybe not necessarily with my GI issues and everything that I have been going through but the impact on breathing and the heart can be understood on a more personal level. That is truly what gives me the most support in all of this.

      I also understand what you mean by it feeling a lot like grieving process. It is a mix of all emotions for sure! The anger is there too a lot and I often find myself questioning “why wasn’t this caught sooner!?” But when I think about it, the reality is still the same here and NOW and there is no use in thinking what could have been. That just leads to more frustration and anxiety.

  • #20034
     Jen Cueva 
    Participant

    Let me try this again, Brittany. I am so sorry that you were given such bad news yesterday, especially after all that you have been through. I hope that you were able to sleep some last night. Often, when learning bad news, I cannot rest.

    Colleen offers some encouragement and truth with her words. I also relate something negative, especially regarding my health as grief in certain ways. It is so frustrating to be let down time after time. It is a process and we need to give ourselves time to take it all and process the information.

    When I feel like this is happening, I tend to hold it all in at first by isolating myself. I am now better at trying to talk about what it is and letting others support me.I wish I had the words to say that would ease your pain. Just know that I am here and open to listen anytime. I just hope that our support can offer you some hope in these tough times.

    • #20038
       Brittany Foster 
      Keymaster

      Jen,
      your support means so much to me and helps more than you know. Even just talking with you on the phone last night really helped a lot and let me know that I am supported more than I may realize sometimes. I also went through a lot of isolating myself and found that the more I isolated myself the more depressed I actually became and the harder it got to pull me out of that mindset. I have a few people that I discuss my really hard feelings with and two of them include some of my medical team including my therapist and my dietitian. Just talking it out and typing it out to them really does help me even if it’s just a vent text session. Sometimes I really need that and typing it helps me process it too.

      • #20080
         Jen Cueva 
        Participant

        It’s why we are here and try to support others. It’s touching in so many ways knowing that others care and also that something someone has been through could help.

        I’ve said it and I will continue, in my 14 plus years, I really wish I had known about forums sooner. I’ve met so many in online groups and chats. I really am appreciative as we are all different but then again, similar.

      • #20094
         Brittany Foster 
        Keymaster

        Jen,
        It’s truly great to learn from others. I feel like I am learning something new every single day. What one person says on the forum I make sure to write down and ask my doctors about it I am worried about it or going through the same thing.

      • #20127
         Jen Cueva 
        Participant

        Yes, it is, Brittany. I learn daily as well. I think you share a great tip, to write things down that you can ask your doctor about. I need to start doing that. I have CRS and forget continuously, especially when it comes to appointments.

        My thoughts and prayers continue to be with you and I hope there is some way that you will be able to get the nutrition that your body needs. As you mention, you have already been going through so long and not sure how long your body can hold on. Love ya.

      • #20147
         Brittany Foster 
        Keymaster

        Thank you so much, Jen.
        I tried to cut back on my lasix because my doctor was curious if I was getting dehydrated and if that’s why I was getting more symptoms of dizziness. Well, I cut back on it and ended up gaining 3 lbs overnight and my hands are extremely swollen this morning. 3 lbs is a lot to gain for someone that is only 98 lbs to start with. So I woke up this morning with some chest congestion and just feeling overly tired! I took my lasix along with drinking some coffee right now so I hope the double diuretic can help me out.

      • #20162
         Jen Cueva 
        Participant

        Oh, Brittany, I hate that cutting back on your Lasix made matters worse. Often, if I am told to try and lower mine( as they tend to think I am dehydrated) I gain up to 10 lbs. in just a few days. I can imagine adding 3 lbs. of fluid to your body is extremely noticeable. I hope that within the next few days you can get that fluid off and rid of that congestion. It does not take much extra fluid to affect our bodies.

        Prayers that you get relief and that you start feeling some better.

      • #20181
         Brittany Foster 
        Keymaster

        Jen,
        That’s what they think for me too is that I may be getting dehydrated from the lasix but it’s just not the case. I feel like my symptoms are probably more nutritionally related with the dizziness and light headed feeling. But adding fluid on top of that is just miserable.

      • #20191
         Jen Cueva 
        Participant

        Good morning, Brittany. I am happy to hear that taking your Lasix and peeing a few hours helped relieve some of the extra fluid. I hope today continues to be some better for you.

        I know, often my doctors think I may be dehydrated. But, it is often, even when my electrolytes are off, I am not dehydrated. Although, this has happened. I know that he is just doing what he thinks is best but hate the results when it causes an increase in fluid. As you mention, that extra fluid is quite noticeable.

        You mention the dizziness and lightheadedness could possibly be the lack of nutrition. I am sure the added fluid did not help. I am hoping that they can find ways to help you obtain some better nutrition for your body. I am not sure how much feeding you get, but I imagine you are still lacking quite a bit. I know that you are in good hands with your medical team.

        I have eaten between 500-100 calories for years and of course, my daughter the Dietician tried to add more. But this is what my body is used to, I try to make sure I take in all types of food that can help boost the nutritional value. I also drink protein drinks at times. I realize that taking in more food is an issue for you. Are you still able to eat some soft foods? Like ice cream?

      • #20195
         Brittany Foster 
        Keymaster

        Yes, I feel the same way about my caloric intake it really is like my body has adjusted to such a small amount of calories and nutrition. I am only taking in around 600 calories a day but the weight is remaining the same and somehow my nutritional levels in bloodwork all come back okay. I think my body and our bodies in general just have a way of holding onto the things that it knows we need. With the amount of vomiting that I do too with oral feeding I bet that I am losing some electrolytes but usually like I said, on bloodwork things still look pretty good. I just am fearful that one day it’s going to be like “nope, not having this. I need more” I definitely feel physically run down which is a scary feeling for sure!

      • #20289
         Jen Cueva 
        Participant

        Brittany, I wanted to ask if the extra fluid has resolved for you yet. I know it could take a few days.

        I am happy to hear that your electrolytes are all looking good despite your nutritional intake. I know it must be scary and frustrating when you feel like you’re doing all you can.

        So, you’re still vomiting any oral intake? I was hoping maybe a certain consistency/thickness of soft foods would stay down. My heart hurts for you, but I know your doctors will come up with something. Every day new advancements are made. I know you’re just hoping that your body can suffice with this until then. Love you. I know it’s been a difficult time for you.

      • #20292
         Brittany Foster 
        Keymaster

        Jen,
        Thank you so much for always thinking of me ! I always love reading your messages and your texts give me so much positivity! Sorry if I don’t always respond, sometimes I respond in my head and totally forget that I didn’t respond in person LOL definitely part of my foggy brain moments. It is hard to still not be able to eat that much. I am able to eat food but the problem is with it actually staying down enough for me to get nutrients from it. It either comes out one way or down another LOL but seriously though, that has been my life since last November. I am lucky enough to be able to hold SOME things down, like I said. My pulmonary doctor actually may be starting me on a medication that they give to people with MS and other neuromuscular conditions to help with muscular contraction through the body. It has shown studies where it works for people with autonomic dysfunction due to a variety of causes (mine would be from my structural issues and damage to the nerves that control autonomic control of the body like digestion, HR, blood pressure, etc) Hoping he can get me in within the next few weeks because he doesn’t seem to like the idea of just giving me tube after tube and test after test with no forward progress and I’ve been pretty frustrated with it lately so it’s about time someone acts on it! Willing to give about anything a try at this point!

      • #20167
         Colleen Steele 
        Keymaster

        Oh no Brittany, I’m sorry you had that reaction. It’s very frustrating when medications are changed or discontinued in hopes of helping, only to have it make things worse. Your doctor tried, it’s unfortunate that it proved to be the wrong theory.

        I hope you feel some relief soon!

      • #20182
         Brittany Foster 
        Keymaster

        Definitely felt a little better after taking the medication again today. I woke up very congested in my chest but it got less and less as the day went on and after I had my few hours of peeing it out haha!

  • #20054
     Robin Webster 
    Participant

    I’m so sorry to hear this, Brittany. I hope they find a solution, and if there is no solution now, I hope that you are able to stay hopeful that a solution will be discovered in your future. You’re very young, and you know new procedures and drugs are coming out all the time. And you’re very strong — even when you get clobbered with crappy news and feel disoriented — because look at all the things you have come through so far. At one time, they all seemed overwhelming to you, too. But you did find your way to get some perspective on them — enough so that you are guiding and lifting up so many other people in the same situation!
    When I get a particularly difficult diagnosis or test result for one of my major illnesses, I let myself feel the feels for a bit, and then I set a midnight deadline for myself. (It’s usually midnight of that same day for me, but I am ridiculously hard on myself, and if anyone else told me they only allowed themselves that much time for their pity party, I’d actually yell at them and tell them they were being way too harsh. So I do not recommend that at all.) If the news has made me angry, I usually wind up in the shower (because I cry when I’m angry, and that’s my place to cry so no one sees.) And lately, I pull out my copy of “No Mud, No Lotus” and re-read the parts I think will help me gain some focus and perspective. (I can’t tell you how much that book has helped me wrap my head around some pretty heavy stuff.)
    I can’t say that I don’t have lingering anxiety, because I’m only human, so of course I do. But I try very hard to shift gears and get my head into a line of logical thinking: What will be different because of this? What will stay the same because of this? And so on.
    I need to feel productive, and I am a list maker, so I often find myself making a list about it — even if it’s just to allow myself to identify and name all my feelings about it.
    Lately, for me, the bottom line has come down to this: I’m the same person in the same situation as I was yesterday BEFORE I knew this. Nothing has changed except my emotions from having this piece of information. I can’t control the things happening in my body, but with a bit of struggle and determination, I CAN control my feelings about it. And I refuse to let these uncontrollable “things” happening in me to rob me of whatever I can feel joyful about instead. (Yeah, the feelings of anxiety do sneak back up on me sometimes when I’m vulnerable, but then I use the same process to kick them to the curb again.)

    • #20077
       Brittany Foster 
      Keymaster

      Robin,
      Thank you so so much for your kind words of encouragement to me. I think about how quickly science changes and new advances in the making all the time. That is what helps to give me hope. They are actually thinking about doing a clinical study procedure for part of my stomach emptying problem. The pyloris muscle between the stomach and small intestine isn’t opening and relaxing as it should so they have been testing out the effectiveness of stenting that area and putting in different types of stents right into the stomach vs surgically opening it up. I am hopeful that they will be able to come up with something to help me out and will be waiting for that time to come. In the meantime all I can do is the next best thing for my body and take care of what I have in the best way possible. It is hard when some of my days are filled with a lot of pain, but I do try to remain logical and optimistic.

      Thank you for sharing such great suggestions with me ! I know that you have been through so much too so your words really mean a lot to me.

  • #20063
     V.R. Peterson 
    Participant

    @brittany-foster I’m so sorry for the bad news. Colleen is right about the 5 steps of grief applying to difficult test results. Sometimes it seems, just as one is learning to deal with one thing, he/she is dealt another blow. Just know that we’re all here for you. I pray that your medical team will find something that will ease the issue with your esophagus.

  • #20067
     Brittany Foster 
    Keymaster

    Thank you so much for the prayers and well wishes. I hope that they can do something too. It always feels like I get a lot of testing and then when I get the results back it feels like the testing was all for nothing because they are stumped on what to do to treat the problem. It is complicated by my PH and heart conditions too because there is only so much I can take for medications and a lot of the medications that help motility of the stomach have an effect on the heart so it’s really a double edged sword.

  • #20085
     Jimi Mcintosh 
    Participant

    Brittany, I am so sorry that your test results were not what you wanted to hear. Bad need can become good news, because you are not a “quitter “ and like all of the other obstacles, you will find a way to to continue on. At one time, my digestive system was so messed up that I couldn’t eat solid food and keep it down. They wanted to put in a feeding tube and I elected to eat like my baby girl, baby food, toddler food and gradually I progressed to oatmeal, cream of wheat, soft boiled eggs, pulverized meats.

    It took years to repair the damage and to change my diet. I still cannot tolerate certain foods, I double chew my meat and vegetables, I eat slow and discovered that a meal is to be savored. I do not consume a lot of food, yet is hangs around.

    Brittany, I am praying for you and
    Work with your dietian. Baby foods are
    Better than ever, full of the nutrients and vitamins you need

    • #20095
       Brittany Foster 
      Keymaster

      I am very similar Jimi. I have a feeding tube though because it really is my main source of nutrition because I can’t get many calories in through just eating spoonfuls of ice cream here and there. it is frustrating for sure because my blood levels and electrolyte levels are actually pretty okay considering I have been just surviing on the bare minimum for so long. I think that is because my body is in some sort of survival mode and the scary part is I don’t know how long it will be able to handle just that before it starts losing steam. it impacts all aspects of my life.

  • #20203
     Carol Volckmann 
    Participant

    Dear Brittany, my heart goes out to
    you. You have been through so much and now some more stuff you get slammed with. Receiving bad news just kicks me in the center of my being. The only way I have been able to get some control back is ask (as you have) what are my options, what can we try and what are the risks? I have learned so much from you and others on this forum and then talk to my team. You are right each day something new comes up. Now what I am about to say maybe way out there but – our golden retriever’s(Spirit) pyloris muscle was not working and he was in agony as a puppy. The university vet hospital said this also happens in humans and they had 3 choices: surgery, stents or metoclopram which he could take for the rest of his life 3x/day
    He does and is great. The metoclopram has controlled his pyloris for 9 years.
    I hope this does not offend you that I am telling you what worked on Spirit our dog. Thank you so much for sharing what you are going through and giving all of us hope that we too can come through and will with bad news. Everyone who has written in has helped me dealing with bad news. Lots of gentle hugs,
    Carol

    • #20216
       Brittany Foster 
      Keymaster

      Carol,
      Thank you so much for your kindness! It really does mean a lot to me. That is really interesting about your dog. Believe it or not, when I looked up pyloris dyfunction and tried to do my research on different treatment option for it, things about dogs and the vet came up and I started reading up about how it is treated in dogs. They also mentioned some certain stent to me but I think right now it is in clinical studies and not yet fully approved as a treatment method, but that definitely brings some hope to me knowing that your dog has been doing okay on that medication. There are unfortunately a lot of medications for this problem that I am not allowed to take because of my underlying heart conditions so doing more of a surgical treatment is actually a better option for me. Thank you so much for sharing that though !! I hope your dog is doing better too.

    • #20219
       Colleen Steele 
      Keymaster

      @cdvol3gmail-com like Brittany, I found what you shared about your dog very interesting. During research for other medical concerns I have a times happened upon articles about dogs with what prior to that I only thought of as human diseases. Did you know dogs can have pulmonary hypertension? It makes sense that they can develop it as well but yet I felt surprised when I read about it. Thank you for sharing that information.

      • #20234
         Brittany Foster 
        Keymaster

        When doing research on my genetic defect as well I found a lot of interesting articles about the different phenotypes that can be presented in mice with the same genetic mutation. One of them was actually vascular anomolies too like the vascular ring that I had repaired a few months ago. I brought this up with my medical team and they jokingly said, “are you sure you’re not part mouse?” hahah! definitely got a good laugh out of me. At this point, I might as well be a mouse ! LOL

    • #20249
       Jen Cueva 
      Participant

      Interesting, Carol! Thanks so much for sharing this with us and Brittany. You never know, something for animals may work for us. Often, I know at the Vet, my dog’s meds are the same for allergies, etc., that my hubby takes. Of course, our Mini Schnauzer gets a much tinier dose. LOL

      Carol, I am so happy that this has helped Spirit with this issue and for 9 years! It sounds like Spirit is appropriate, I am sure he lifts your spirits with all of your struggles.

  • #20264
     Jimi Mcintosh 
    Participant

    Hello Brittany
    How are you today? I hope you are still holding it together. I have been praying for your recovery and liking for alternative treatments, that traditionalist medical practitioners do not consider. I received an email
    From the holistic treatment center that predicted my illness and elected to not try their supplements due to kidney issues and avoidance of high proteins.

    I hope your medical team is successful in using a stent or possibly a pig valve, similar to how they use it in the heart. I truly believe you will beat this.

    • #20265
       Brittany Foster 
      Keymaster

      Jimi,
      Thank you so much for your kindness and for thinking of me. I know you have been going through a rough time too and I think of you and hope that you are doing the best you can be! I guess that’s all we can hope for each day is just to do the best we physically CAN that day. I have wanted to try a lot of holsitic approaches but it is hard when a lot of my condition was caused by a structural problem that was repaired but left some pretty intense damage to the muscle and nerves. Hoping that maybe one day it might come back slowly but surely, but in the meantime like I said, just have to do the best I can with the cards I’ve been dealt.

      • #20268
         Jen Cueva 
        Participant

        So sweet, Jimi. I am sorry you could not do the holistic treatments due to your kidneys. Often, many non-traditional alternatives will not work well with my issues either. All we can do is explore and do what is best for our bodies.

        Brittany, I love your attitude. No matter what is going on, you do your best until something else comes along. You play the cards you are dealt with quite well. Unfortunately, I am sure it is from years of practice. You are also just full of positive energy.

      • #20291
         Brittany Foster 
        Keymaster

        Thanks so much, Jen. I certainly have my moments of feeling down, depressed, anxious, etc, you name it I’ve probably felt it. But I can only stay that way for so long and then I find ways to just regain some type of normalcy back in my life and don’t take that feeling for granted. The days when I can actually do more I try to make the most of it.

      • #20329
         Jen Cueva 
        Participant

        I, too, know when I’m busy I’m not thinking about everything that may be going wrong. It’s good to feel the emotions but not allow them to take over. Some days it’s a tough balance, I’m sure.

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