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DiscussionThis and That and Talk - My Transplant
Transplants | Last Active: Apr 26 9:16pm | Replies (1688)Comment receiving replies
Replies to "@Contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew..."
@contentandwell - so nice to see a photo of you, or is it a new photo? It helps me remember who I'm talking with when I can visualize their face, especially since we have never met. Anyway...I always find myself telling friends who are not used to chronic and/or complicated health issues, when they are frustrated with doctors, that being a doctor is as much an art as a science. What works for one person does not work for another, doses need to be adjusted after you give them time to work, and there is often more than one type of medication or treatment option to choose from. All that means that you must have confidence in your physician or your outcome will not be optimal so sometimes switching providers or getting a second opinion is necessary IF you have the mindset that there is rarely just one right way to approach many health issues. I like your reasoning of why they call medicine a "practice" too so I might add that in my spiel when the time comes. I guess, for the most part, I have been blessed with great medical facilities and doctors so I realize that medicine is not black and white. Although this can be unsettlingly that is why you need specialists (doctors can't be expected to know everything), need to trust your doctor, do your own research, be an advocate for yourself, and follow all instructions (i.e. be a good patient).
@contentandwell - we have had a wonderful experience with a VRBO. I too was hesitant because I did not want to cook on vacation but we all chipped in (nothing else on our to do list like at home) and it was much more relaxing, we saved money, and ate healthier. Also, we visited better because we had a family room to hang out in vs. a hotel room which is not conducive to board games, conversation etc. I don't think I'll do another hotel for a long vacation again.
@contentandwell - Sounds like you have an awesome son!!!
@lcamino Thanks on the photo. It was actually last week in the Boston Public Gardens. We had friends from CA in town so showed them around a bit to "old Boston" institutions, like the Public Garden with the Swan Boats, and the little "make way for ducklings" sculptures, and then went to the old institution, The Parker House for lunch - originators of Boston Cream Pie and Parker House Rolls. It was a great day, we had perfect weather for it too. I like that picture because I have sun glasses on! My eyes are getting droopy in my old age.
I agree with your comments about doctors but when my PCP last week was looking at records from over a year ago and saying I had cirrhosis and cholestasis and he of course knew I had a transplant in September, had even seen me two times since then, what was he thinking? That they gave me a cirrhotic liver and threw in a gall bladder (that goes out with your old liver and is not replaced)? How could he not have checked the date when he saw how illogical what he was reading was? The interesting thing is that I thought he was a great doctor initially a few years ago. I really think he's burned out now. My confidence is gone, gone, gone.
Had my transplant clinic appointment today. All is well. They are modifying my medications a bit to helpfully help my digestive problems and my horrible sweats, plus hopefully bring my creatinine a bit. It's not horrible but they would like it a tad better, along with my blood counts. I absolutely LOVE my surgeon. I trust him totally. As I said to someone, if I thought he was single and my daughter was not engaged I would be trying to play matchmaker! He is exactly her type.
JK
@lcamino, I am sure this will work out great, I am so excited about it.
Yes, I do have an absolutely great son. As I always say though, the jury was out for a long time when he was in school but we always felt that if we could push,pull, shove him through he would do well and he has. He's VP of a staffing company on the west coast.
It will be fun because he will have his girlfriend with him too, they will have been dating for a year. I have not met her yet but she is so sweet -- she sent me a Mother's Day card thanking me for giving birth to him!
JK
@contentandwell,, This technology is amazing. I want to compliment you on becoming a great resource for transplants and beyond! Rosemary
@contentandwell, It is so nice to meet you face to face. Your visit to the Boston Public Gardens sounds delightful. I did not know about the history of Boston Cream Pie or Parker Rolls. But I do love them, even way down here in Kentucky!
That is really strange about your PCP reviewing your records. I have a wonderful PCP, too. In fact he is the one who saw in my labs 16 years ago that there was something not quite right, and referred me to GI. However he is more than happy to let my transplant team answer any transplant related questions. He does, however, give me priority when needed.
I am thrilled for you that you had good appointment today. You were probably expecting it; but it sure feels good to get those words from the doctor, doesn't it? I hope that the medication tweaks will help to relieve some of your symptoms.
Rosemary
@contentandwell I'm so pleased that your appointment went so well! Congratulations - Teresa
@contentandwell - Well when you start to lose confidence in a doctor and it is not you being unrealistic (which is certainly doesn't sound like) it might be time to make a change. I have an amazing GP who is a 40 minute drive away. He was my GP when before I moved and he is so good, and knows me so well, I have not been able to bring myself to get a local GP. The downside is when I'm sick (too sick to drive 40 mins) I end up going to a walk-in clinic which is not ideal. I have known my GP for 23 years, he has treated my husband the same amount, and I like his approach plus he stays current so I'm going to keep making the drive. I don't think I can replace our history.
@hopeful33250 Yes Teresa, technology really is great. We often wonder how we managed with the navigation systems in our cars, particularly when away somewhere.
I would imagine that there must be bluetooth ear buds that can do the same thing. I have never looked into that, I wear big over the ear headphones when I want them. The music reproduction is better with them so they have not become obsolete since getting the new hearing aids.
JK