Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Hi all but especially Learn2 Live, this is mainly in response to L2L's anxiety expressed in the discussion started by Colgreg. Feel the subject deserves its own thread, so rather than continue to coopt Colgreg's...
Johnty did a good job ofresponding.I just want to add that I,too , do not have an apparent high level of paraproteins, but do have poor kidney function having a GFR of 40 to 50. I have deep itching, some edema at times, nausea, fatique, and at times a severe malaise accompanied by anxiety which I used to describe to my GP as feeling "poisoned" which usually garnered me a doubtful look prior to my myeloma diagnosis.
I have endeavoured to do research of my own as to how to maintain as much kidney health as can but it has been like making my way through a jungle not having a medical background.
Relevant to L2L's concerns: ibuprofen can cause or exacerbate kidney problems.Altenatives are advisable.
L2L I strongly advise you to pressure your GP to address your poor kidney health. I also urge you to do what you can for yourself to reduce your stress level. You havehad so-o-o much to deal with.
Thank you, Ms.Lin
Your kind words made me feel so much better. How can I thank you?
Yes, the ibuprofen I was taking has probably had a great deal to do with my decreased kidney function. It was a better alternative to all the opioid medications they were giving me; but, as I said, I was taking up to 1200 mg a day for years now to try and combat all the pain I had / am still having. My GP has prescribed Celebrex (100 mg tabs) that help, but only a little.
I am just wondering how much of this has anything to do with the paraproteins they found years ago. A lot of my pain is intermittent but a lot of it, also, is a lot of aching throughout the day. My kidney function was always fine . . . up until they checked it last week. And, since the doctors have found virtually no explanation for my abdominal/mid-back pain, I think (at the very least) it deserves another look by doing an MRI to fully evaluate the back issues I DO have which is (in many places), bone on bone, degenerative disc disease that (if unlreated to my past MGUS or possible progression to MM), we could perhaps detect some possible nerve impingement that is contributing to the pain in my hips now. I saw one orthopedist in January who thought it possible, since little else has shown up on my imaging tests besides arthritis (some severe) in other locations.
And, I said, my oncologist/hematologist hasn't run a UPEP for a few years . . . so, I guess I don't feel as unreasonable as I have in the past in seeing her or asking these questions. Whenever I go there, I feel like I don't deserve her attention as there are so many who go there who are suffering from so much worse . . . my husband now one of them; however he (Thank God) is in remission. It's really strange how I started going there years ago for this MGUS issue after dropping out of the NIH study I mentioned in my other post, and he ended up actually having to go there for his NHLBCL. We both know, from first-hand experience, how long things can go without being fully examined over here. My blog posts explain his history in more depth; but this latest episode with his malignancy went undetected for at least a year before they diagnosed him last April/May. He had full-blown cancer and no one even put the pieces of the puzzle together until the tumor they removed last April was found on a CT scan they ran when we finally ended up in the ER because of his distended abdomen. His labs didn't reveal a thing until they started his chemotherapy. Things get missed over here (a lot!) You quite literally have to beg them to take a second look into the reasons for a problem. It's beyond ridiculous.
Anyway . . . woke up this morning feeling alone and unreasonable for thinking my little MGUS history and my seemingly "normal" results deserved any consideration. So, thank you so very much for your thoughtful, caring words.
This site, I've found, is of such great consolation at times when a person feels lost and isolated. Just knowing others care and have experiences that help a person find the courage and understanding to keep searching for answers is invaluable.
Dear ms Lin,
i can totally relate to what you say about symptoms of your kidney disfunction all of which were present at my diagnosis for ppcl myeloma unfortunately I have lost virtually all kidney function and am now on dialysis, however all my symptoms have disappeared. Are you following a ckd diet ? Ironically now I'm on dialysis I can eat more things than before and feel much better.
Hi Johnty, Nice to have someone tell you they can relate. I am truly sorry that you have ended up having t have dialysis. The only other person I know in my little town that also has myeloma has just had to go on dialysis. She has gone to her sister's for support so now will no longer live here.
I have had almost no counseling re. Kidney health. Have been trying to find info on my own. Also asking my friends and acquaintances, so do not know what CKD is except to guess perhaps the k stands for kidney and the d for diet perhaps.
I have no appetite. Sometimes even when I am not nauseated the idea of eating is repellent. I manage fruit and veg fresh. Am avoiding salt sugar and protein.
I weigh daily as sometimes gain overnight even without evident edema. It is difficult to tell if I am still losing weight after the initial loss of a quarter of my weight. I don' t think I am or very little
Please enlighten me concerning ckd. Thank you for responding.
Hello, ms lin
a ckd diet is a chronic kidney disease diet but may be useful for someone with reduced kidney function but without a progressive disease.
its essentially a way of reducing the things in your diet that build up in your blood if your kidneys are not working at full capacity. It's this build up of toxins that cause the nausea, scratching and fluid retention and general feeling of malaise.
i am surprised given your symptoms you have not received more advice about how you might improve the situation. Obviously I am not a doctor so I recommend you see your own personal physician and ask if following a ckd diet would be recommended for you.
i felt much the same as you before diagnosis and now I am on dialysis the symptoms have disappeared and I am eating normally again.
I hope this helps, I don't know if you are from the uk or overseas as I suspect this will make a difference in your access to free treatment.
Thank you very much. Oncologist primarily interested in my bloods and whether o not more chemo might be in order. Kidney health has been left at the wayside in discussions with my regular doctor as some other issues have been at the forefront. Will put it at top of list for next time.
Again, thank you!
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