Pld Osteoporosis

Q: I may be the one that said my Doc. said I can quit taking Boniva after my doc. appointment this August. I have been taking Boniva for almost 3 years and I have built bone in my spine and hips. I also take Calcium Citrate + D (Sam's brand), D 1000 IU, every other day and I exercise which is also very important. I was diagnosed 5 years ago with Osteopenia. I started taking the once a week Fosamax and then went to Boniva. I have had no side effects. > I really need your help. I remember one of us used Boniva for > osteoporosis and had an improvement in her osteopenia so she no longer > needed to take Boniva after one year's time. I also had to have my gall bladder removed when I had my liver resection because it was involved with the large cyst. I have had no bile duct problems but I stay on a pretty good diet and I also take Nexium.

A: Request first: Is it possible to keep the same subject line of the postings/email and not change them just because the subject changes. It makes it very difficult to follow an ongoing discussion when the subject line changes overnight from topic A (whatever this was before) to osteoporosis. We started this as a response to Shelby and her octreotide/surgery questions and now it's morphed through through nephrectomies and left ventricular hypertrophy to osteoporosis. I appreciate the ongoing discussion, but could you (anyone posting or any manager/adminstrator) start a new thread with a new subject line when the topic changes instead to make it easier at least for those of us who read from the board to keep track of the topics? Thanks!! Diane, Yes, a full dental checkup is required before most (not all) transplant centers and/or insurance companies will clear a patient for a transplant. The issue has nothing to do with the gallbladder, but rather the fact that our mouths are naturally full of different types of bacteria, good and bad. There is an increased risk of infection if you have an infected or cracked tooth/filling, gum disease or other oral care problems which would provide that bacteria easy access to the blood stream. Essentially, all significant problems need to be fixed before a transplant (if they're not the type that can be fixed during the surgery) as the body becomes much more susceptible to infections being immunosuppressed and can be much slower to heal post transplant (the latter especially if steroids are part of the post- transplant medication regimen). Any surgery or procedures after a transplant adds additional risk of infection, far above what the average population experiences. That's also why most post-transplant patients need to pre-medicate with specific types of antibiotics before any dental treatments (the focus is on both aerobic and especially the anaerobic bacteria that occur in the mouth, the latter being the type that needs no oxygen to survive and replicate). Michael, I know a number of people who have chosen to keep their native kidneys. They don't cause any signficant problems so why "fix" something that isn't broken. 7.5 kg for two kidneys isn't dreadfully large (albeit much larger than normal kidneys) and a good physcial activity regimen and perhaps some core and back strengthening exercises can help alleviate any back pain you experience from carrying those kidneys and a cystic liver around. Besides, you and they are literally attached...via connective tissue that holds the native kidneys in place! Jessica, Same for you. Back pain after spending time bending over in a garden or other environment is normal even for someone who is not carrying extra weight in their kidneys and liver. Talk with a good trainer or physical therapist for some exercises to help strengthen your back and abdominal muscles without putting excess strain on the internal organs (sit-ups aren't recommended as they can compress the large kidneys and liver and lead to increased internal pressure and possible cyst ruptures, but there are plenty of other activities that will provide a similar positive benefit without causing harm). As a result you may find you can garden longer without pain. Taking frequent breaks to stretch and loosen up helps too. Your kidney function is much too good to consider a prophylactic nephectomy (isn't it above 60 if not higher?), especially if you haven't been through a thorough physical therapy rehabilitation and tried the full pain management regimen. Nephrectomies are a last resort to manage pain in non-dialysis patients and it's going to be a long, long time before you're going to need dialysis, if ever. Even with a living donor it's doubtful a transplant team would consider you a candidate at this time; you're just too healthy (you ski, you garden, you are active in so many ways). As for weight of the PKD kidneys, most doctors can only estimate the weight of the kidneys based on their experience with PKD transplant patients and those who have undergone nephrectomies and know what their native kidneys weighed (e.g. a kidney measuring x by y by z generally weigh 15 pounds....I have no idea what the values are for x, y or z). Without taking out the kidneys, it's a guessing game. Perhaps the researchers who are reviewing the specialized MRIs of those participating in the HALT PKD or TEMPO studies have a better size/weight ratio concept, but they're not sharing it with us at this time. In my case, my doctor can only estimate what my liver and kidneys weigh based on his experience, what I weigh and how I look inside and out (as well as what the changes have been over time; e.g. he approximates my liver at 15-20 lbs and each kidney at least 5-8 lbs). If/when I get the dual liver/kidney transplant, I'll let you know what they actually weighed. Until that time it's simply a "guesstimate". I won't get into the osteoporosis debate other than to state my personal opinion that all too many people choose to take pills rather than eat healthy, get the appropriate calcium/vitamin D supplements and participate in weight-bearing exercises. Yes, there are some people who truly need the medication (e.g. my mother in law who got two broken ribs when a grandson gave her a hug, or someone with the inevitable bone loss that comes with long-term steroid use for immunosuppression). All too many people and all too many doctors rely on the prescription pad instead of common sense. I also don't think drugs should be advertised either; they only add to the escalating cost of health care and convince the healthy or the concerned that they too need to be on some form of medication. We medicate too much and treat holistically, rationally and logically too little.

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