January 5, 2021 at 10:34 am #28529
We like to celebrate each little win. I must say, little wins are something that is needed to get to the bigger wins.
Yesterday, I used my POC and walked out to my back patio. It is not huge, as I am usually over to the other side of the deck. But because last time I was on the patio, my hubby had to wheel me out there in my wheelchair. So yesterday, this was a huge win for me. I surprised my hubby as he was cleaning the pool.
Celebrate the wins each day. We must focus on the positive as we live with so my unknowns. What are your wins? Let’s celebrate together.
January 5, 2021 at 4:05 pm #28545
January 7, 2021 at 9:37 am #28555
January 12, 2021 at 1:52 pm #28608
I have a weekly win to share. Cullen had PFT’s weeks ago and we never heard from the doctor about it. I was procrastinating on calling them because I had a bad feeling his function declined. For once my instinct was way off. His PFT’s were one of the best he had in years.
I’m really happy about this. His renal doctor warned that as Cullen’s kidneys worsen it might affect his lung function, so I was worried it started to happen.
He had labs today and we are waiting for those results. His timed immunosuppressant lab results showed his levels were too high a few weeks ago. We are hoping they are where they need to be now because his doctor is hesitant about lowering the dosage since it obviously been good for his lungs. However, high levels could be what is making his blood pressure occasionally still go too high.
It’s frustrating when something resolves one thing but causes a problem for another. I’m sure many of you can relate.
Anyone else have a weekly win to share?
January 13, 2021 at 11:19 am #28624
Hi, @colleensteele; that is awesome news about Cullen’s PFT’s! I hope and pray that all goes well for him now so that he can continue his medication. It has been helping his BP remain stable, correct? Please do keep us posted.
So, true, it often feels like a Catch 22. Improve in one area, another not so much. I hope and pray this will end in positive news, too.
January 13, 2021 at 6:57 pm #28638
Cullen’s lab work came back that both of his immunosuppressant medication levels are too high. The dosages have been lowered which might help his kidneys and blood pressure. However, we are all a little nervous about the the medication change, doctor included, because he was on that dosage for a long time and his lungs and heart are doing so well. Praying that lowering the dosages doesn’t cause problems.
January 14, 2021 at 11:35 am #28644
January 12, 2021 at 3:51 pm #28614anneParticipant
I finally got out of the hospital Friday. Stayed a week and got stronger every day. My breathing was so bad, I had to go to the emergency room. It took about 4 days to come out of my stupor. I found out I had CO2 poisoning from have too much O2 and not being able to breathe out my CO2. My legs were so big, I lost 15 pounds of water weight and now they’re just puffy. Heart and kidney doctors are fighting on how much bumex I can take to remove the fluid and not kill the kidneys.
So, now I’m so strong, I think I might not need my electric wheelchair for indoors.
Things are just strange.
January 13, 2021 at 11:23 am #28625
Wow, @annefox, I am sorry, I did not realize that you have been in the hospital. I am sorry that you had to go, but thank God you did, and they could “fix” the issue for you.
I am so happy to hear the positive results. I hope you can go without your electric wheelchair. Please do take your time if you are up and walking more than usual. Are you balancing OK, or would a cane or walker help you if you stop using your wheelchair?
Thanks so much for sharing such a wonderful win! What an awesome way to start your new year off!
January 13, 2021 at 6:50 pm #28636
January 12, 2021 at 4:33 pm #28615
I love reading about the wins – some may be small but they mean so much. Jen your walk out to your patio, yes you needed to sit down, but you DID IT! That walk was huge after what you have gone through. Congrats!
Colleen, Cullen’s win unexpected so that in itself made it even better. Sounds like the doctor already is balancing his meds trying to keep BP down while not loosing ground on his lungs. Wishing you and Cullen the best positive energy getting through this.
Anne, great you are able to get around your home without your wheelchair! Please listen to your body and don’t forget to rest. Like Jen, she listened and sat down.
I don’t really have any wins this last week, but I am looking forward to getting back to PT to hopefully regain some bowel control. It will be a long haul but I remain optimistic. Next week I see my Rhumotologist to check in on my Sclaraderma which caused my PAH and now some issues with my liver and a possible cause of my inconvenience. I really like him as part of my team. Looking forward to some wins by the end of next week.
January 13, 2021 at 12:07 pm #28626
Hi @cdvol3gmail-com, I love your optimism! Were you able to start back to PT? How is that going?
I am sorry to hear about the new liver issues. I hope and pray that your Rheumy can address those concerns and offer some help there.
Thanks for your support. I plan to try and do that walk again later today. I have been very sluggish still. Baby steps are OK, though.
Please do keep us posted. We wanted to celebrate with you.
January 13, 2021 at 6:54 pm #28637
@cdvol3gmail-com you have a lot going on but I appreciate your positive thinking towards it all. Keep us up to date on your PT and how that is going for you. Really sorry to hear you are having liver problems now but it sounds like you have a great team working hard to keep you well.
January 13, 2021 at 7:36 pm #28639
Thank you Colleen for your kind thoughts. Cullen was in my thoughts today as the county we are in are going to start vaccinating people 85 and over. I hope your county is going to include folks with life threatening diseases. My fingers are crossed for Cullen.
Thank you again for your good wishes, they put a smile on my face.
January 13, 2021 at 8:34 pm #28640
Hey Jen, I hope you were able to make your walk today, but if not, that means you needed to rest. Baby steps are just right!
Started PT today. It will take about 12 weeks to see if – or how much it has helped. Long road, but the right one.
Warm hugs from WA –
January 14, 2021 at 11:39 am #28645
Hi @cdvol3gmail-com, I am happy to hear that you started back with PT. 12 weeks sounds like a long time, but as you know, time flies, especially when you’re having fun hehe.
I hope that each week you will notice small improvements, eventually will lead to bigger improvements.
When will you be getting your vaccine, Carol? I read your note above.
No walk that way, but I was up and moving around the house much more.
You are always extremely kind and supportive. I am sending you love and hugs from Texas.
January 25, 2021 at 2:21 pm #28817
So, last week, our kiddos were in town, and we celebrated my hubby’s birthday last Sunday. That in itself was a huge win in my book! Then yesterday morning, I woke up a tad hungry, which was new for me as my appetite has been poor, although I know I need to fuel my body. Today did not start as well, but I did eat a tad of soup and some cheese and crackers. One more positive, my hubby is finally at work!!
What wins do y’all have to share? They can be anything as mine all varied, hehe.
Sending y’all love and positive vibes to start your week.
January 25, 2021 at 7:48 pm #28821
@jenc your wins made me feel happy! Time with family, an increase in appetite, return to a work routine for your husband – all of that is great to hear. Even though today was a little different hopefully you will little by little start experiencing more of an increase in appetite.
My family had a weekly win by switching to a new internist that we all love. My husband and I have health things going on and she is helping us through it. Most of all, I’m putting in more of an effort to take care of myself. I met with the internist today and have promised myself to follow-up with all the referrals she wants me to see. I need to start practicing what I preach and not wait to see a doctor when I know something is wrong.
January 26, 2021 at 8:34 am #28828
Thanks, @colleensteele. Your week sounds like a win, even with the medical concerns. I am so happy that you all have found such a caring and knowledgeable Internist that makes you feel comfortable. Those things will help you better with your self-care.
I think most of us are not as good at practicing what we preach hehe. But we can help you, keep us posted as your schedule and get in to see these doctors. Yes, prevention is key, but you already know that, right?
January 26, 2021 at 6:35 pm #28847carol keiltyParticipant
I know what you are saying Colleen and I think we are all guilty of that. I think it’s maybe we think it might go away or we don’t want to bother anyone. Funny we people are hey? I have been having trouble but didn’t want to go see what was wrong but now that I have I am very happy I did. I went to the cardiologist today. The chest pain is what I had thought it was as well as the pain in my ribs. My heart and lungs are working too hard. He told me to use oxygen to walk on the treadmill and see how that feel and to watch where my oxygen saturates are. I have a little thing to put on my finger and it is accurate I went and had it tested at the hospital. He also gave me a fluid pill that takes the fluid away from my heart and lungs and he has ordered a bunch of tests. I am hoping these changes will help me out some. I won’t know for sure for awhile but I will let you know what happens. It’s good you have a doctor you can talk to and you like. They are sometimes few and far between. Have a good evening everyone. Hope to hear from everyone soon.
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