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What is on your medical calendar for November?
Do you want to say “No” to November because your medical calendar is looking busy and/or concerning, or are you feeling thankful because you have little to no appointments scheduled?
Please share what is on your medical calendar this month, and we will do our best to support you.
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12 Replies
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November … what can I say. November was supposed to be a month nearly free of doctor appointments, procedures etc. It has not worked out that way.
Two weeks ago my shortness of breath was getting worse, I stated having black diarrhea and vomit. I ended up in the ER for 2 nights while they looked for availability at the UW Med Center. The community hospital where I was not not comfortable to administer anesthesia because of PAH. I was finally transported to UW, given a transfusion, fluids and underwent an endoscopy, echo, ekg, CT Scans and another RHC. Visits from the Cardio, Pulmonary, Gastro departments. The long and short of it, my PAH is still pretty stable, but the left side of my heart has become very stiff and oxygen blood not able to circulate very well.
4 days in the hospital, New heart medsand finally able to get home. Meanwhile my husband was unable to be with me as he had come down with UT infection leaving him incredibly weak. Friends were helping taking him to the doctors picking me up to brig me home, making healthy dinners, even taking our Golden for walks.
We are both still pretty weak, but have plenty of eonderful help. We are now trying to get back to something normal as we plan to drive down to CA for Thanksgiving and spend with the kids and grandchildren. Fingers crossed!!
It has been one heck of a ride. Let’s see what December brings???
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@carol-volckmann ! Oh my gosh, I am so sorry for my delay in reading your update, and upset to hear what you and Dick have been through! You both must have been so worried about yourselves and each other. I know how close you are and being apart when sick must have been difficult.
@jen-cueva has been working hard on other projects within BioNews. I’m tagging her because I know she will want this update!
What is the plan for addressing your heart decline? How are you both feeling now? I will be praying that you can proceed with your special Thanksgiving plans.
Is there anything we can do for either of you? If anything, know we are here to listen and through our words, we will hold your hand!
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Dear sweet Colleen @Colleen , thank you for your caring and loving support, it means so much to me.
I was going to reach out to @jen-cueva also but at the moment ran out of “popcorn” (energy that is). You both mean so much and I care so much for you both.
Tomorrow I have more labs. The new heart meds I am on, Jardiance, was designed for diabetes but it also works on the heart. My weight remains stable and I have not had any side effects 🙃.
It is just going to be a long process as everything takes longer as you age. We are both struggling, but are able to help each other along. We are so fortunate that we have close friends and great neighbors that have been helping out.
We do not have to decide whether or not if we are going to drive to CA to see the kids – really are able to give next week. The plan was to leave on the 24th.
Thank you for holding my hand, I can feel your warmth and sending prayers 🙏 ❤️.
We do have a great deal to be greatful for so forward we move. Hugs 🤗 filled with gratitude and love ❤️.
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@carol-volckmann I hope you never lose your positive, cheerful attitude! I feel inspired by it!
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Colleen:
My “no” is not limited to November! 😉 There seems no end to the parts of the body that can become problem areas. I recently ended up in the ER because I have back spasms and pain so severe that I cannot walk. As with many of my diagnoses, surgery is the usual fix, but that course of action is off the table per my PH doctor. I think I finally received some accurate feedback from the spine clinic doctor I saw for a follow up, as she was personally familiar with the pain I described. Seems a nerve issue in my sacroiliac joint, so treatment will consist of Flexeril, Lidocaine patches, and PT. I have changed my course of action in PT three times in as many months. From cervical spine and vertigo, to balance issues from CAA, to pain management for my back. I’ve never been one who is good at asking for or accepting help and it is hard not to feel like an overall mess. I have to talk myself into showing up every time an appointment for PT rolls around. Ironically, I’m also trying to manage my Mom’s cognitive loss and my daughter’s mental illness and addiction. Does anyone else wish we had power buttons and we could just shut down for a week or two?
Lisa
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@LisaMichele Dealing with my parents’ cognitive decline, I can’t imagine how exhausted you must be caring for your mom when you are in pain and struggling with multiple health concerns. If you have people offering to help, please take them up on it. It’s even harder to battle health problems when you are already exhausted from other factors.
Are you finding time to relax and do things that you enjoy? I hope so friend! I will be thinking of you and we are all here to support you at any time!
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Hi Colleen (and Jen). It’s been quite some time since I’ve been on the forum. I guess life happens, and seems my calendar is always full of medical appts. I have been sick since Wednesday with a sinus infection, but have gotten started on meds so pray I’m turning the corner. I need to feel better so I can help my daughter cook for Thanksgiving! My November was quite eventful medically speaking. First, in October my 12.5 year old granddaughter had an 8.5 hour surgery on her back. Thankfully, she is doing well and we left for vacation early November just after her post-op visit. After almost a week there, we came back to a calendar full. I had an echo and R-heart cath on Nov. 18 and my 6 yr old grandson had op surgery on his legs on Nov. 19. All appts occurred at UVA, which is 2 hours away. Thankfully, all is well except for this sinus infection. I don’t know what I’d do without my daughter! She takes me to most appts. I’m grateful for her and other family/friends who help out. For the most part, my PH is stable, and the RH cath showed less pressure than the echo usually shows, though it is still at the severe level. Like Carol Voickmann, I had Jardiance added to my list of meds, and thankfully I’ve had no side effects. I do have stage 3b CKD. I guess the downside is that my mitral valve needs to be replaced, but I’m prohibitive for surgery because of the pressures in my lungs. I try not to dwell on it. It’s sort of unnerving, but I actually feel pretty good generally speaking, all things considered. I will try not to be silent for so long again! I think of you all so often and pray that each is doing well and able to handle the struggles that come your way.
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@DeLois Tweedy it’s wonderful to hear from you, but I’m sorry to hear all that your family has recently been through. It sounds like your grandchildren had successful surgeries, but I feel bad that they had to go through them. How is recovery going for them?
Sinus infections are miserable! I really hope you were feeling better in time for Thanksgiving! Do you have any special plans for Christmas?
Is there a plan B in regard to your mitral valve? If your pressure can be lowered, will they consider surgery then? I am so sorry that you have that worry on your mind!
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May I bring up a new threat to my PAH condition. It is Pulmonary Edema, something like pneumonia but it isn’t. Side pain, shortness of breath exceeding what I experienced before. I turned down going to the local hospital since they have no idea about PAH. I went through that before. Treatment- double doses of diuretics.
Pretty miserable. I don’t know how long this goes on before being healed. So much for November. Well the Lord got me through the last near disaster. Always the question of ‘why me lord?’ Because we can.
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@Randolph Reynolds I can understand not wanting to go to a local hospital that isn’t capable of handling PH, but from what I’ve read, it sounds like Edema really needs to be followed by a doctor. How far is your PH doctor, and is he monitoring the edema?
Here is a link regarding pulmonary edema from the Univ. of Penn.
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Colleen
It turned out to be a bad diagnosis. I have shingles. Dealing with that on top o PAH is difficult. Most of my pain has gone away after a week but I get tired easily. I have no idea how to improve my imune system. It is affected by Remodulin. Got to apply ‘true grit’.
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@Randolph Reynolds I keep praying that you will catch a break! You have gone through a lot these past few years. I have never had Shingles, but from what I understand, it can be very painful. I’m so sorry you are going through this. Rest as often and when you need to! I hope you will recover enough to enjoy the holidays. Please keep us updated on how you are doing.
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