potsgirl Posted September 21, 2009 Report Share Posted September 21, 2009 Hello All~I've had a really stressful last couple of weeks, and am asking for positive support and/or prayers for my mother. We leave Friday for Iowa to be there for her back surgery on Monday. They're having to rebuild her lumbar spine with a 'cage', and it'll be a risky procedure for her. She's 80 and has Parkinson's and other medical problems.Then, my recent echo showed another heart problem, diastolic dysfunction. This means that the heart muscle is too stiff to relax enough in the heart's 'relaxation phase' and so blood can pool in your lungs and other parts of your body. When I went to Mayo MN last March they suspected amyloidosis, which is a buildup of abnormal proteins in the body. One of the main causes of diastolic dysfunction is amyloidosis, and the treatment for that is chemo. Ugh. It's very similar to cancer. I have an appointment for a heart biopsy at Mayo Scottsdale (AZ) on October 6th.Anyway, please send out positive thoughts for my mother on Monday. Thanks for everyone's support once again.Cheers,Jana Quote Link to comment Share on other sites More sharing options...
Maxine Posted September 21, 2009 Report Share Posted September 21, 2009 Jana,I'm so sorry to hear about this, and I'm praying that it's not Cardiac amyloidosis, but if it is, it can be treated successfully.I'm wondering why Mayo MN didn't do a biopsy right away when they suspected this. You would need to be treated right away to help prevent further damage. I know this must be a terribly difficult time for you with this looming over your head at the same time your mother is going through such a scary time.You and you mother will definately be in my thoughts and prayers.I'll also pray the biopsy on Oct. 6th is negative for the amyloidosis.Maxine :0) Quote Link to comment Share on other sites More sharing options...
janiedelite Posted September 21, 2009 Report Share Posted September 21, 2009 Jana, You are such a wonderful and supportive daughter to travel with your mom in spite of your own health issues. I said a prayer that she will do well in surgery and after. I'm sorry to hear of your heart issues! Sounds like you're in good hands at Mayo, but it also sounds like a scary diagnosis. Praying for peace for you, too,Janie Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted September 21, 2009 Report Share Posted September 21, 2009 Jana,I will keep you and your mother in my prayers! I am so sorry to hear about both situations, and I hope that you can deal with everything one day at a time. Let us know what the amyloid biopsy shows. I had that done several years ago, so I can assure you that at least the actual biopsy isn't so bad - mine was taken out of my abdominal area and I was really nervous. It was uncomfortable and sore for about a week afterwards, but do-able. Keep your head up honey!~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
Tachy Phlegming Posted September 21, 2009 Report Share Posted September 21, 2009 Did the suspicion of amyloidosis come from some other test or from the echo only?I was told I had diastolic dysfunction but I was given to believe it was meaningless and harmless. The doctor said it should be checked again in a year or so.(The same doctor made me feel like a pariah because he told me he would give me a beta blocker for my high heart rate and high blood pressure and then, as I was waiting for the prescription in the waiting room, his receptionist came out and told me he had changed his mind. That was after he told me he would check me relatively soon to see how I was doing on the beta blocker. From what my primary care doctor told me, there would be no going back to see him or ask about the diastolic dysfunction -- or anything else . [For the record, I don't look like I come from another planet].)If that means I could have amyloidosis, I don't see any way of getting this checked out for myself ... Quote Link to comment Share on other sites More sharing options...
potsgirl Posted September 21, 2009 Author Report Share Posted September 21, 2009 I had the same biopsy test done on my abdominal area, too, when I was last at Mayo's. That test was inconclusive... Quote Link to comment Share on other sites More sharing options...
potsgirl Posted September 21, 2009 Author Report Share Posted September 21, 2009 The suspicion for amyloidosis came up because I have cardiomyopathy, dysautonomia, and carpal tunnel syndrome - although the carpal tunnel was years ago. These are three of the main indicators of amyloidosis. Mayo MN tested for it in March, but the tests were inconclusive. My ANS specialist there told me if there were any changes in my heart condition with the next echo (the one I had three weeks ago), we would need to go ahead and do the heart biopsy. It's not the biopsy that scares me, it's what happens if that's what it really is....Thanks for your responses, all.Cheers,Jana Quote Link to comment Share on other sites More sharing options...
kayjay Posted September 21, 2009 Report Share Posted September 21, 2009 Jana.... Please keep us posted. I will be keeping both you and your mother in my prayers. I am sorry that you are facing all of this at once. I am putting your name on my calendar for Monday as well as October 6th and I will be praying for you. One day at a time ..right? Kari Quote Link to comment Share on other sites More sharing options...
erik Posted September 22, 2009 Report Share Posted September 22, 2009 I'm sorry to hear that Jana. I will keep you both in my thoughts and certainly wish you the best. Quote Link to comment Share on other sites More sharing options...
Tachy Phlegming Posted September 22, 2009 Report Share Posted September 22, 2009 The heart biopsy sounds scary enough! You are brave.Good luck in getting a negative biopsy -- and I'll hope your mom does well too.(And thanks so much for the medical info). Quote Link to comment Share on other sites More sharing options...
ana_22 Posted September 22, 2009 Report Share Posted September 22, 2009 Jana, i am thinking of you & your mother. i hope all turns out better than expected.just a side note....what kind of dr tests for amyloidosis? is there a particular specialist that tests for it? ive been meaning to bring this up for ages but your topic post reminded me thanks Quote Link to comment Share on other sites More sharing options...
potsgirl Posted September 22, 2009 Author Report Share Posted September 22, 2009 Hi Ana,My neurologist/POTS specialist at Mayo thought of the disease first, and because of my heart problems and other symptoms, they think the amyloidosis would show up in my heart. I'll be going to a cardiologist at Mayo to have the biopsy done. Cheers,Jana Quote Link to comment Share on other sites More sharing options...
Rene S. Posted September 22, 2009 Report Share Posted September 22, 2009 Hi Potsgirl,You are always in my thoughts and prayers. I will be praying for you and your mom. Hang in there honey. I'm here for you whenever you want to talk.With love,Rene Quote Link to comment Share on other sites More sharing options...
mountain girl Posted September 22, 2009 Report Share Posted September 22, 2009 I will be thinking of you and your mom during this difficult time. I often see your post name "pots girl" responding online and feel like you and others online are friends, so my best to you and your mom for a positive outcome. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted September 22, 2009 Author Report Share Posted September 22, 2009 Rene,You are such a wonderfully kind person. Thanks so much for all of the support you've already given me. You are a true friend.Cheers,J Quote Link to comment Share on other sites More sharing options...
potsgirl Posted September 22, 2009 Author Report Share Posted September 22, 2009 A big thank-you to Mountain Girl and all the others who've replied. You are all my friends and it's terrific!Cheers,J Quote Link to comment Share on other sites More sharing options...
firewatcher Posted September 22, 2009 Report Share Posted September 22, 2009 Prayers and good thoughts your way! You have the strength to get through this! (((((((((((hugs))))))))))))))Jennifer Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted September 23, 2009 Report Share Posted September 23, 2009 Sending you good thoughts! Amy Quote Link to comment Share on other sites More sharing options...
mjan Posted September 23, 2009 Report Share Posted September 23, 2009 HUGE but GENTLE HUGS for YOU and YOURS!!!Gosh your mom HAS to have this surgery? Of course she and you will continue to be in my thoughts and prayers.No wonder you are scared.. for her and for YOU!!Do you know or believe in the Serenity prayer? I will say that for you (as well as for me). IT keeps me grounded when on a humal level when I do not understand I ASK FOR GUIDANCE and I am OPEN to recieve..esp when scared.Picure all of us..sitting nearby..with sweet understanding smiles..with arms to hug you when you need it.. or arms to hold you up ..to fetch things you need.. to help you and comfort you. With this vision may you be surrounded by loving..caring..guidance that WILL get you through all of this. Warmly,Jan Quote Link to comment Share on other sites More sharing options...
potsgirl Posted September 23, 2009 Author Report Share Posted September 23, 2009 Thank you again to everybody! Yes, my mom has to have this surgery. She's in constant pain otherwise and is basically immobilized. Jan, you are so warm and sweet. Amy, Jennifer and all the others, thank you for your support and prayers. Yes, I do know the serenity prayer as I used to work with recovering kids...I'll take all the prayers I can get!Cheers,Jana Quote Link to comment Share on other sites More sharing options...
Tammy Posted September 23, 2009 Report Share Posted September 23, 2009 My aunt had this exact surgery this past year and she also had many health conditions and is 79 years old. She did well through the surgery, the recovery however has been another story and continues to be. Just to be aware that afterwards is when the real challenge will begin, so you may be there longer than expected, so pack plenty of clothing, etc. for the visit. Hope all goes well. Blessings Quote Link to comment Share on other sites More sharing options...
potsgirl Posted September 23, 2009 Author Report Share Posted September 23, 2009 Tammy,You're right, and thanks for reminding me of that...I know recovery will be long and hard. Fortunately my mother lives in a place that provides different levels of care. She's in a townhouse now, but she can move over to a higher care unit if she needs to after the surgery. It makes me feel better that we have this back-up in place.J Quote Link to comment Share on other sites More sharing options...
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