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SubQ Issues
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Thank you @douglas-knuth for the information! @jennifer-beaty let us know if you try CBD and if it helps you. Don’t forget to check with your doctor or nurse before trying it. I always check on everything, just in case. Love how we all help each other here. Lot’s of great tips being shared.
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Yes, Jennifer Beaty you should check with your doctor to make sure that he/she is ok with the CBD.
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Hi Jennifer, I had the same problem when I was on subQ where my site would blister and oozing and was told the medication was back flowing. I was allergic to all kinds of tapes and would get rash and started to itch. I ended up putting a central line for the medication. Due to my allergy reaction my central line site was oozing again and consulted dermatologist and allergist. It turned out I am allergic to propylene glycol and chloroxylenol. My dermatologist recommended using Cordran tape around the site and it works wonders. He also found that Cordran tape helps subq patients with site issues. Maybe you can ask your doctor about the tape. Good luck.
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Thanks for sharing your experience, @rfung88. I am happy to learn that you found a nonallergenic tape that helps. It sounds lie it has really made a significant improvement for you. My apologies as I am not sure how your comment was missed. How are you doing this week?
@jenniferbeaty, I was checking in to see if you have found something that helps you with your subq pain and site. How are things going for you now? Any relief? What did your PH team say?
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@jenc, thanks for the follow up. My PH team had the RN call me to discuss different options. He suggested a couple of different site locations and sent me a huge bag of samples such as skin barriers and seals to try. In addition, my Doctor is prescribing something else for the pain besides the PLO gel. I’m sorry I don’t remember the name. Unfortunately, I tried my thigh which I will never do again. I’ve been unable to put any weight or stand anything touching my leg for over a week. I’m just now able to sit (somewhat) comfortably in a chair. But this too shall pass. Thanks again for the concern. I hope all is well with you.
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HI. So sorry for your pain. I know what it feels like. Yes, the itching is horrible. I used a prescription cream Triamcinolone. That seemed to work. But yes that is the worse feeling!!!!! I also used ice packs to numb the itching. I was on Remodulin for about 1 1/2 years. The pain was horrendous, my sites didn’t last long, I would be in bed for a few days with the pain. Urgh!!!!! I have since had a double lung transplant on February 1, 2020 and let me tell you I do not miss the SubQ and the side effects. It is going on 8 months pain free! Please take care everyone who is dealing with this. It certainly is not fun. Thinking of you all.
Karla -
Oh no, @jenniferbeaty, that site on your thigh sounds quite painful, to say the least. I am sorry that you are dealing with so much pain. I am happy to hear that your doctor sends you some samples and things to see if anything helps.
My PH doctor has always said that we would go straight to IV. With SubQ, so many have a difficult time finding the best site, and the pain at times is unbearable. Then I know others who have done well and prefer to stick with SubQ. Do you know if switching to IV is an option for you?
For me, if this continued, I would ask about switching. But I already have enough pain in my body and don’t want to add to it if possible. Gentle hugs and prayers that you will find a good site and relief from the pain.
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Hi @kstutsman, congrats on your transplant! I have a local PHriend who also had her transplant earlier this year. She is doing well. How are you doing? How was it for you to be new to post-transplant just before a pandemic hit?
A year and a half is a lot of site changes and pain. As you mention, so many say that pain is horrendous. Congrats again, and I look forward to hearing more about your life post-transplant!
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@jenc, you are so sweet! Thanks for the hugs. My doctor mentioned IV when he first put me on Remodulin. But he fears the risk of infection is higher. I’ve only been using subQ for about 18 months. So, I’m still willing to keep trying different sites. I’m sure that my situation is no different from all my other Phriends. I just have to keep experimenting. 🙂
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@kstutsman, I’m SO glad your transplant went well and you are no longer in pain! In regards to the itching, mine is the actual insertion point. Which obviously is impossible to scratch. ARRG! Is that what you experienced? Thanks!
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I had internal itching at the site. OMG. I would irritate more by scratching around the area. That has got to be the worst feeling!!! I would always change to another spot. Having new and old sites too close could cause issues as well. I finally tried it in my thigh and that seemed to work better and did not hurt as much.
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@jenc, I had my transplant on February 1,2020 with only being on the transplant list for 9 days. I had zero pain from surgery and could not tell I even had surgery. No pain pills! I got home on Valentine’s Day before everything went to pot. It was a weird feeling being able to breathe and took awhile for me to get used to it. All is good. I’m walking, doing stairs. I was back to work 3 months after surgery from home though. I was on every PH medication there was and no more to take so doctor said I need the transplant. I pray for everyone dealing with PH. Just have to stay strong and have positive thoughts
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Hi @jenniferbeaty, 18 months is a long time. Have you found any site yet that is better for you? That thigh site sounds horrific. Yes, I have heard the pain stories by so many PHirneds throughout the years. Y’all are tough than I am.
I hope and pray that you do find some better sites for you soon. If only we could help ease the pain. Please do keep us posted.
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Oh @kstutsman, thank you for sharing your inspiring story! That is amazing how fast you received your transplant. Not even to mention how fast you bounced back from it!
You make my heart full of joy, just reading how well you did. Thank you for sharing this and also for your prays. 9 days after being listed is not often heard of, awesome!!
I am impressed at how well you are doing post-transplant. Tining was on point, and Valentine’s Day, is when I was diagnosed in 2005, so that day for you was also life-altering. May God continue to bless you.
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Congratulations @kstutsman! Oh, I am so happy to hear that you received your transplant! I love how you returned home on Valentine’s Day. That is way better than chocolate!
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