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Welcome Bill!
Please welcome new member, Bill. @billb
Thanks for the welcome. We are from Minnesota and we are going through a big decision in treatment for my wife. She has been retaining fluid to the point of looking six months pregnant, and have already had her admitted three times to the hospital to drain the fluid and watch her this year. First two times they just used a catheter and gave her some lasiks and temporarily upped her diaretic for something like two days. No real contact from her PH doctor, just contact with his assistant on the phone, and the one we mainly have dealt with is almost useless. Every time we would go in for a visit other than twice a year it would be with her because he is too busy? Anyway, we would ask questions and she would look like a deer in the headlights and said she would have to ask him. Not exactly the care we were hoping for. She is on a diaretic, ravatio, opsummit, and uptravi, and they are now saying the uptravi is not working well anymore, so they want her on the pump for remodulin. We are now thinking about seeking out a second opinion and seeing if she can get better care where we don’t feel so ignored. She has been diagnosed with this for about five years? Kind of scared for her, but don’t want her to know it because she is a hypochondriac and would really itch like mad. She has developed a bizarre symptom of itching a lot since she was diagnosed and it seems to be connected with nervousness, and not medication as far as we can tell. Sorry for the long post, just lots on my mind as she is the love of my life and I feel so helpless when she gets so fatigued from just light activity.
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7 Replies
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Thanks, @colleensteele. Welcome, Bill, and your wife. I am sorry to hear of the communication issues and struggles with her care. It certainly is frustrating when you feel like the doctors are not taking things seriously, and you are not able to communicate with them as needed.
You mention that she has itching. Does she have any kidney issues, too? I have chronic kidney disease from years of 3 diuretics at high doses. I itch like crazy when my kidneys get bad. I just wanted to ask. Also, is she eating a lower sodium diet? That helps and water intake.
It sounds like she is having a huge issue with fluid. Maybe they can add a second diuretic or another type with her current one. She is on 3 medications, and I think that Subq or IV would be the next step. I certainly believe that if you do feel like a second opinion is needed, I will get one. You and your wife need to be comfortable with the PH medical team. Please let your wife know that we are here for support and would love to chat with her, too, when she is ready. Let us know if you have any questions. This PH journey can be overwhelming, as you have learned, I am sure.
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Thank you Jen, they tested her kidney function and they are doing fine, she has been on a low sodium diet for two years and has done great with that. What do you do to help relieve the itching? We are talking about going to the mayo clinic an hour and a half away for a second opinion and to see if she is a good candidate for the protein blocker study that this site has news on. She is not much of an internet user and have been trying to get her to join this forum, but gave up and joined myself.
I truly do appreciate the support, advise, and sharing your experiences with this disease ????
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Hi @billb, I’m grateful that her kidney is doing ok. I do have a prescription for itching, but it is not as effective as an over the counter Cetirizine tablet is for me. My pain management doctor suggested that for me. It’s a generic if the plain Zyrtec. It lasts longer than Benadryl and works for me. Please check with her primary care physician or care team.
I think that because you are so close to Mayo, that would offer an excellent second opinion. I’m aware that they gave PH specialist doctors there among a ton of other specialists.
We are here fur support, take care if yourself, too.
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Welcome Bill, You have found a great support team here. These ladies can be so helpful as well as offer an ear when you need one. Jen had recommended possibly utilizing Mayo with you living so close. I agree with her. I was there all last week for a complete evaluation and am very impressed with them and the facility. I do think you will get the answers you need to have. Good luck.
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Thanks for sharing @bill-jones. I am sure that Bill will appreciate your positive experience with Mayo. It sounds like he is looking for that with a second opinion for his wife.
How did your evaluation go? I hope that you get some answers and help that you need after your Mayo visit.
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@billb it sounds to me like your wife would benefit from a 2nd opinion but make sure it’s with a PH specialist. I am glad to hear that she is at least on treatments and hasn’t been ignored in that regard. My son was on IV Flolan plus triple therapy using oral PH treatments. Flolan really did help him. It’s similar to Remodulin just a bit more complicated.
The Mayo clinic sounds like a good idea but just an FYI…here is a link that can help you find other PH specialists in your area. https://phassociation.org/patients/doctorswhotreatph/
The itching is something that should be discussed with a doctor. It’s possible it’s a result of anxiety because I have this issue too and I’ve known others who have had struggled the same. However, you want to make sure it isn’t an allergic reaction too.
Please ask as many questions as you want and share your concerns. We are happy to try and help. BTW, my son doesn’t like to join support groups either but joining as his caregiver has helped a great deal. I hope it will help you too!
Thanks @bill-jones for offering your advice and support too. Our members are great!
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Bill Jones, out of curiosity, did they mention the protein blocker they are doing as part of a study?
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