Gregg's appointment with the kidney doctor on Friday didn't yield much new information. He basically repeated what we had already heard: yes, a renal blood clot is rare; the most important thing is to figure out why it happened; blood thinners are the main treatment. They've scheduled him for some heart tests starting May 3rd to see if there's an underlying condition there, and then he goes back to the nephrologist in four months for a checkup, barring anything else happening to his kidney in the meantime.
The only good news was that the affected kidney may not necessarily have permanent damage after all this is over. When Gregg asked why it's still hurting so much, the doctor said, "Think about a heart attack. This is basically the same thing, but in your kidney. Yes, it's very painful." Gregg then told him that he was almost out of pain medicine, the guy told him to see his regular doctor, since pharmacies will "flag" pain prescriptions from more than one doctor. Okay, fine, Gregg said, and then went by our family doctor's office right afterwards to ask for a refill. And guess what? The doctors at her practice take half days off on Fridays, and there was no one there to give him the refill. He asked the nurses: "So what the hell am I supposed to do this weekend? Go back to the ER and spend another $10,000 if the pain gets bad and I run out?" to which they replied "Probably."
Can you believe that? It all makes me so mad!
And then, of course, the pain has been getting bad again. He's down to his last couple of pain pills and they probably won't last until tomorrow when (hopefully) his doctor will be back in her office. In fact, the pain was so bad this morning that he seriously thought about going to the ER again anyway.
This seems beyond ridiculous that he's still hurting so much and no one seems to have any sense of urgency about helping him. Maybe we got spoiled when he was going through cancer treatment....you always have access to your doctors and to pain management drugs when you have cancer!
He plans to have a serious talk with his doctor tomorrow about his medical needs and whether or not she's going to be taking them seriously enough to continue to serve as his GP. I realize she's not a specialist,but after the serious health issues he's had, he deserves better care than this and when he has a problem it needs to be given more urgent attention than this. I hope she apologizes and tries a little harder. Finding a new GP is another headache we don't need right now.
This morning Gregg apologized for "ruining your spring break" which made me feel terrible. I don't care about spring break, there will be more. I just wish he could start to feel better. It scares me when he's in pain and I'm feeling a constant low level anxiety that I'm doing my best to keep under control.
Not a great way to end the vacation, though. Wish me luck that we don't end up in the ER tonight.
I really do feel Gregg's pain and hope he gets the care he needs. Honesty is the best policy when dealing with doctors and with that said, doctors have become fearful of writing a script for pain meds even when a person's condition calls for it. It's a horrible predicament to be in, but I guess I can speak from experience here. In 2002 I developed some spine issues that required me to have surgery and to be on pain meds. When the surgery didn't help, I remained on pain meds.
ReplyDeleteIn 2009, I went cold turkey and stopped taking what I prescribed at the time. I was on Oxycontin around the clock and Percocet for any break through pain. The withdrawal was hell. I wasn't fit to be around for about 3 weeks. Then, stupidly, about 2 years after that I was urged to go back on pain meds and I conceded because the pain was almost unbearable. I thought my quality of life would improve and I guess it did for awhile. The tricky thing about pain meds is that a person grows tolerant of them after taking them for awhile. What starts out as being helpful, usually spirals into becoming dependent.
Almost two years ago I decided to stop taking pain meds altogether. I was told that wasn't a wise decision, but I did it anyway because at the time I was being prescribed Fentanyl and believe it or not, it was like taking aspirin. It did little for my pain. What sense is there in taking something if it doesn't work? I guess my whole point in this isn't to say pain meds are bad, but to caution Gregg about becoming dependent on them. Most people already know that, but it's too easy to get to a place where you have to have them just to feel normal. When that happens it changes your whole life.
All good points, and I thank you for the thoughtful comment.
DeleteGregg had to take serious doses of narcotic pain medicines for a year at least when he had cancer following a left pneumonectomy and chemotherapy. Prior to that he was (and still is) the kind of person who rarely so much as takes an aspirin. He worried the entire time he was taking them that he would become addicted, and maybe because he kept asking the oncologist about it, everyone urged him to not worry about it. Thankfully, as he started to really heal and improve he gradually weaned himself off of them even when that meant having to tolerate some discomfort. So he's very well aware of the dangers of opioids. That being said, sometimes a person really does need them.
I sure am sorry to hear about your struggles with pain and the management of it.
Oh dear! I am so sorry to hear that, and just hope Gregg manages somehow to pull through all his pain until he gets relief. Of course the best relief will be when he won't be needing pain meds any longer, which I hope will be rather sooner than later.
ReplyDeleteLike you say, it is not your "ruined" spring break you are thinking about - it is your husband's, your lover's, your best friend's well-being that is your main concern. I'd be exactly the same if something were wrong with O.K.!
Well, damn, is right! You'd think the staff could have texted, emailed, or phoned the doctor and she could have called in the prescription. That's awful. Actually good that you now have things like spring break to be more easily available. So so sorry you're BOTH going through this.
ReplyDeletewhat a coincidence - dr. spo is talking about pain management today on his blog. and yes, gregg SHOULD yell at his MD. gregg is the customer, and the MD should provide good customer service.
ReplyDeleteSo sorry to read this.
ReplyDeleteThe doctor should have another doctor on call ? ! ! This makes me so mad for Greg and you.
I have the same problem with getting my meds. If I ask for a refill to early they tell me I have to wait ? even if it is one day ?
The last time this happened (last week) I said it will be 2 days till I get the meds (not even pain pills )so if I land on the floor foaming at the mouth or hospital it is on your head !
A big hug to you both.
cheers, parsnip
That's too bad. Everyone should have access to pain control. I feel for Gregg.
ReplyDeleteWe have gotten ourselves into such a mess with pain medications, haven't we? Those who truly need them (like Gregg right now) are denied them because of all of the addiction problems we're seeing but of course, most of those problems originated with the doctors who gave them out like candy, generally under the influence of the pharmaceutical companies. And of course doctors don't want their patients to be in pain. I'm not blaming them entirely. I'm just saying that we have got to figure this out because PEOPLE NEED THEM and need not to feel like criminals for asking for them when the need is intense. And his GP damn well should have a way for her patients to get in touch with her or someone else who can help any time. And can I also say that the kidney doctor is a wuss?
ReplyDeleteI'm so sorry. I really hope that this is just a one-off with the renal blood clot and that there are no cardiac complications going on.
I know you must be so anxious. Take care of yourself, too, Jennifer.
The narcotics issue in this country needs resolved, one way or another. Primary doctors probably are not the solution; they are tasked to the limit sorting problems and sending patients off in the right direction, if required. I see them as gatekeepers, not managers.
ReplyDeleteI OTC self medicated pain for probably ten years, and my rheumatologist was the only one who came close to providing good pain relief. Then he retired, and I could not assemble the same schedule of pain meds among my other specialists, mainly because the ability of doctors to prescribe pain meds and pharmacists to dispense them have been severely curtailed by federal and local governments, whose stupidity in non regulation of dealers and manufacturers has been the problem these last twenty years.
I went to a pain specialist. In fact, I went to several pain specialists until I hit on one I trusted. It still took him and his staff the better part of a year to work out my best solution.
Conclusions: patients should not have to work so hard to be helped. Gregg will have to work "overtime", and exercise unbelievable patience, but it can happen. I hope he can find a pain specialist. His bout with cancer may have given him some understanding of the direction to take. I wish him the best.
We went to Urgent Care to try to get Gregg enough pain relief to make it through the night. We took all of his recent medical paperwork and prescription bottles to prove that he has a serious, painful medical condition going on. The doctor on duty WOULDN'T EVEN TALK TO HIM. The receptionist came back out after talking to him and told Gregg he would just have to wait until he can see his doctor, or else go to the ER. She said, "We don't DO pain medication here." I was so angry and (ridiculously) embarrassed that I cried on the way home. They made us feel like junkies. Now my husband is just planning to sit home and try to suffer it out until tomorrow morning. ; (
ReplyDeleteI am so sorry to read this.
DeleteInfuriating. I'm so sorry this happened to Greg and you.
DeleteI am so sorry to read that. I wish you the best Jennifer and Gregg.
ReplyDeleteI'm surprised the Dr doesn't have a standby, I thought most of them did because emergencies crop up all of the time. I've never heard of anything so stupid, you can't get a refill because 'I'm out of the office.' Hope things are less painful by tonight.
ReplyDeleteThings are a bit better today. Thank you. xx
DeleteMy primary care doctor is wonderful, except if he isn't there, and I have a problem, I am s*** out of luck. He doesn't have anyone else I can call. It's either go to an urgent care, which have caused dangerous life threatening results for my husband in the past, and would have for me if I had taken the medicine they prescribed (a different urgent care for each of us), or to the ER which is, as most people know, an ordeal of waiting and waiting and waiting suffering for hours on end sitting in a crowded waiting room of germ stew.
ReplyDeleteWith my total knee replacement, the orthopedic surgeon was good with my pain meds, luckily I didn't need them for very long.
The Government needs to butt out of severe pain sufferers and their doctors' business.
I hope your husband can find some relief from his pain and doesn't have to suffer for too long before someone will help him. I hope tomorrow gets here fast for your husband so he can get some pain relief. Take care.
Thank you so much. I appreciate everyone's support and sharing of their own stories.
DeleteThanks for taking the time comment here!
I am so sorry for both of you. The doctor I have now also leaves early on Fridays. The doctor I had previously left early on Wednesdays. If I have an emergency that doesn't really require the ER, then too damn bad. No one backs up the doctors. There's no way to reach them. Many years ago after I had major surgery, I had a prescription for pain medicine when I went home. The doctor crossed out the number of pills and changed it. Because the prescription had been altered, the pharmacy wouldn't fill it. What in the hell are we supposed to do? Needing pain medication, even for a short period of time, is horrible. I've been treated like a junkie, too, and I seldom get anything for pain.
ReplyDeleteLove,
Janie
Oh, Janie....what a mess it all is, huh? xo
Deletehow frustrating. dirty secret of Medicine is often docs just don't know.
ReplyDeleteAnd what if it is flagged? Flagging presumably means someone asks questions but nothing more than that. They should have prescribed
ReplyDeleteI know, right?! I had better pain meds (more easily, too) when I had my wisdom teeth out. But that was many years ago. Things are different now.
DeleteOh sweetheart, I know it both hurts your heart and makes you upset to see your Gregg in pain and not able to have the pain meds he needs. I am hoping this will be a great week for you both and full of healing and medical progress for him.
ReplyDeleteHe's feeling a little better today and things don't seem quite so grim. Thank you my friend. ❤
DeleteI am so sorry that you are going through this. When you write about a constant level of low anxiety I can only imagine. I hope things will be looking up soon...
ReplyDeleteThank you so much, Michael. All the support here really makes a difference for me.
DeleteI am concerned about Gregg's work commitments as I suppose that he is self-employed. I know that his health is more important than money but still missing work and pay can only add to your current stresses. My thoughts are with you.
ReplyDeleteThat's really thoughtful of you! Thank you. Gregg has been refusing to stay home and rest, he's actually kept up with his work commitments. Which worries me but that's just how he is. Last night and today have been a little better for him, and he got another rx for pain meds today. So far, he hasn't needed to take any today so he's definitely better than yesterday. Thank you for your kind concern, Neil.
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