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Feelings of Failure
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Hi @rgiustin,
I have not seen you in a while. How are you doing? Please give us a quick update when you can. WE worry about our members when they go MIA, lol.@dawnt, I do know that your plate has been full. Just know that we are thinking of you and sending you hugs and positive vibes. Update us when you can pop in. Are things improving at all for you?
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Thanks so much for checking in. Things have been a little crazy lately. I was admitted to the hospital about 3 weeks ago to have the procedure to implant a Hickman so that I could start on IV Valetri. It was probably the worst experience ever. Among a million other things that went wrong, they initially implanted the wrong type of catheter so I had to have the procedure done twice. On top of everything else after the second procedure they gave me IV antibiotics to which I had an allergic reaction. Once I was home I started dealing with the emotional aspect of this. Feeling like a burden (even though I’m the one who’s doing all the work. LOL)feeling like I wasn’t attractive anymore etc. Now I’m adjusting to the new routine and I do think I’m feeling better. Everyday is a blessing and I’ll keep phighting!
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Hi @rgiustin, I am sorry to hear about the craziness that you have been through. This must have been frightening and painful, too. I know the emotional toll of PH and other health concerns are easily elevated. You have been through the wringer and then some.
I also have days where I feel like I am lazy and sloppy. I allow guilt to creep in when I have been in PJs for too long, etc. – No thanks to COVID hairdo, lol.
I am grateful that you are moving forward and trying to adjust to your new norm. Each day may be different. Give yourself a bit of grace. Please know that we are here to support you.
Otherwise, is the IV meds helping your PH symptoms?
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Hi @rgiustin, I am sorry to hear about the craziness that you have been through. This must have been frightening and painful, too. I know the emotional toll of PH and other health concerns are easily elevated. You have been through the wringer and then some.
I also have days where I feel like I am lazy and sloppy. I allow guilt to creep in when I have been in PJs for too long, etc. – No thanks to COVID hairdo, lol.
I am grateful that you are moving forward and trying to adjust to your new norm. Each day may be different. Give yourself a bit of grace. Please know that we are here to support you.
Otherwise, is the IV meds helping your PH symptoms?
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So far so good. I am still titrating up on the Veletri and down on the Uptravi, but I think I’m starting to feel a little improvement in my symptoms. I will keep you all posted. Thanks again for the encouragement!
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@rgiustin I’m happy to hear that you are making progress with your PH treatments. I felt anxiety when I read about your Hickman experience. It reminded me of a bad incident my son had. I’m so sorry you went through that. The emotions you have experienced are understandable and relatable to many PH patients. Please feel comfortable to address your feelings here in the forums at any time. We are here for you.
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Hi @rgiustin, I am happy to hear that you are doing well so far as you titrate on Veletri and off of Uptravi. You noticing improvements can also be a big boost of your optimism.
I was thinking about your post all evening, and I cannot begin to imagine how painful this all must have been for you. @colleensteele, I hate that Cullen, too, went through something similar, so sad.
That is what we are here for; we are with you as you titrate and need some extra support. I am sending big hugs from Texas.
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Hi @jenc, thanks for asking about me. I’ve been here on the forums, reading, but not doing too much writing. I’m doing ‘ok’, but kind of ‘crashed’ after the holidays. The family issues, being together so little, was so difficult. I recently found out, from notations on my medical records, that I have stage 3A chronic kidney disease. I’ve been on diuretics for a long time, but thought my edema was more from heart issues. I don’t remember any of my doctors saying I had kidney disease, and it feels like just one more issue added to everything else. Although I’ve been handling everything pretty well, I feel like my depression is kicking up some. I’ve been having video visits with my therapist, and think I’m going to ask if we can meet a bit sooner than scheduled. I’m thinking I’ll ask tomorrow, but that could change between now and then. I know, though, that I can’t let the depression get ahead of me. I know where that can lead, and it’s not somewhere I want to go.
I hope you are continuing to feel better each and every day Jen. Thanks again for checking on me. -
Oh no, @dawnt, I am so sorry to hear that you are continuing to struggle after the holidays. You dealt with a ton at that time, too. I hate that you have to worry about your kidneys now; maybe they will bounce back. Mine goes from stage 3-4 often—rest, fluid balance, and at times cutting back a bit on my diuretics help. I don’t know how many diuretics you are taking. Of course, check with your medical team.
I wanted to share this link about classes of CKD.
With your depression creeping in, I am proud of you for taking steps not to let that overpower your life. I hope and pray that you did change your therapy session. I have had to do that at times, too. Please keep us posted and know we are here anytime you are dealing with so much, Dawn.
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