Gastroparesis · General chronic conditions · Hospital Experiences · Thyroid · Updates

A Weekly Update- 30/07-05/08/17

This has been a very long week!

It’s been very fitting that this week kicked off Gastroparesis Awareness Month as my stomach has dominated this week.

On Monday, I was due to get for Botox treatment my gastroparesis. Just a couple hours before we were about to leave, I got a phone call saying that it was cancelled. The funding wasn’t approved and my doctor couldn’t get the Botox for me. She is apparently fighting the decision, however that means I don’t know whether or not I’ll be able to get the treatment. If it is approved, it will likely be several months still before I can get it booked in again.

Leading up to Monday, I had been having a hard time with my stomach. Afterwards, it got worse and Wednesday I began to get quite dehydrated.

Now, I already had a GP appointment booked Wednesday, so I went to that in the morning.

I met a new GP, as my old one has retired. He seemed quite nice and knowledgeable. We went over my list of medications and diagnoses. I also discussed my new thyroid diagnosis with him. He felt that I shouldn’t need treatment at this time, but I should be monitored by an endocrinologist. I am quite happy with this plan right now, so that put my mind at ease regarding that.

I talked to him about my dehydration and he prescribed me the meds I take for my stomach when things get bad. He did tell me that I should probably go to hospital to get fluids and he recommended that I go to the hospital in our county’s trust, rather than the hospital that is actually closer, but outside of the trust because it is not in our county. If we go to the hospital within the trust, he explained, my gastro consultant should get access to the information that I was in hospital. Otherwise, she won’t (which is why she hadn’t known about my hospital visits before).

So, armed with this knowledge, after my husband got off work, we headed up to the hospital that was further away, but in our trust.

We got there just before 7pm and waited. I got my bloods taken, and an IV in. I was told I had to see a doctor to get my fluids. Well… We waited and waited. It wasn’t until about 3:20am that I got medication and fluids. We didn’t leave the hospital until about 5am.

To wait that long to simply get fluids was exhausting and, quite frankly… Silly. It was a combination of sheer busyness, lack of staff, and staff not doing what they should be doing.

Despite the long night, my husband and I were able to have a good giggle when we overhead a doctor tell a patient to gather up all his stuff because he was, “going over to the other side”. Bad choice of words to say to a patient in a hospital, Doc! πŸ˜‚


7 thoughts on “A Weekly Update- 30/07-05/08/17

  1. Oh dear, what a wait for an IV. Waiting at A&E in the UK is pretty dire, especially when in pain and just needing morphine so you can wait to see a surgeon/specialist. I’m just so sorry you’ve got such a wait for the botox jabs. Do you have an endocrinologist to monitor your thyroid, or are you having to be referred to one?x

    Liked by 1 person

    1. Yes… it was awful. I’m hoping the botox gets sorted quickly… although I’m not overly optimistic. I don’t have an endocrinologist yet so I’ll be referred. I’m glad as it saves time later when I get worse, as I’ve been told will happen. Xx

      Liked by 1 person

  2. I’ve been through this many times……I hate going to the ER for GP symptoms. I just went last week. I had to sit, slumped over, in a wheelchair, in the waiting room for 2 hours before even getting back to a room. I was there for a total of 7 hours for IV fluids, blood work, and a few x-rays of my stomach and chest and sent home. I was wondering why you need an Endocronologist? I’ve had GP for years, now. My GI doctor manages everything. Am I missing something? Should I have an endocronologist. I have a lot of “ologist’s” but, no endocronologist. Hope your day was a “good” one. XX

    Liked by 2 people

    1. It’s frustrating to spend hours in emergency for GP, isn’t it? Sorry you know the experience all to well too.

      I am seeing an endocrinologist because I’ve also developed a thyroid problem. My antibodies are too high and a past test had my tsh too low (it’s now normal). Apparently that means I have an autoimmune problem and I need to be monitored by the endocrinologist, and possibly treated at some stage.

      At this stage, I’m just collecting doctors and diagnoses lol. πŸ˜•

      I hope you had a good day too. xx

      Liked by 1 person

      1. Yes, it’s so frustrating even having to go to the ER in the first place because they seem to never know anything about Gastroparesis and I feel like when they see it’s me, AGAIN………..I’m not taken seriously. I feel kind of like they are somewhat annoyed to be seeing me again. This is a scary disease. I’ve had ischemic colitis before, internal bleeding. I had gone to the ER the weekend before with the same symptoms and was just not taken seriously, I felt. A week later, blood appeared in my stool. That really scared me. I knew they would not believe me and if I happened to need to go to the bathroom again while I was there, you know damn well, there wouldn’t be blood the next time, so I took a picture of it to show them. They took me seriously that time and CT scanned me right away and admitted me to the hospital. It’s really scary thinking I had that going on for at least a week. It’s because of all the other GI issues or other abdominal issues that when my symptoms worsen, I must be seen. Therefore, I’ve had so many CT scans, that I’ve been told, I now must be concerned about cancer because of all the exposure to radiation, but if they don’t scan me, they can’t tell me anything and if I refuse the scan, I’m told they can’t help me if I refuse the tests they need to perform to rule out or diagnose anything, so I always give in and let them do it. Cancer probably isn’t much worse than this, just a different disease. Now, I’ve never had cancer, yet…….knock on wood, so I’m not trying to say that cancer isn’t anything too bad, because it is, but so is all this other crap.
        I have almost all the hypothyroidism symptoms, but my labwork always shows I’m at the very low end of normal, which I heard could still mean I have hypothyroidism, but you know how most doctor’s are……………..if you are not out of range at all…………..everything is fine…………………….ignore the symptoms…….like always.
        I also have an autoimmune disease of which no one can put the correct name to because I test serologically negative for all the autoimmune diseases I’ve been tested for, but every doctor I have assures me I do have an autoimmune disease that’s causing all these other diseases. I’m told you don’t just have over 30 diagnoses………there’s one big dog causing all of it, and finding it, is NOT easy……almost impossible. Many people don’t show the antibodies/marker’s in their blood. That’s why it’s very important to get a doctor that’s going to take the time to look at the whole body and not only focus on their specialty! Ha ha………………’s really difficult finding that doctor. I finally found him and he’s already gotten me answers that I should have had a long time ago. I saw him last week and the practice he is in is making him leave the practice because he’s 72 years old…….He’s the BEST doctor I’ve ever had and he’s in the middle of figuring me out, just as he promised me he would do, to the best of his ability. He said he’s trying to find another job because he’s not ready to retire and he’s all there, in the head. I’ve never heard of this being done to doctor’s. I told him I will follow him wherever he goes, no matter how far that may be. He then told me, if he ends up at the VA, because the VA hires older doctor’s, I wouldn’t be able to see him. I told him, he is going to have to meet me in the park, then…………..I’m so saddened by this. I was finally feeling hope again, for the first time in a very long time. I found my “Dr. House,” and now he’s going to be gone…………………..I can only pray he doesn’t end up at the VA. I have one more appointment with him before he leaves in September. After all these years, and all these doctor’s, I finally find THE ONE, last October, and now this………………………Figures!!
        I’ve already been through all that collecting doctor’s and I’m still collecting diagnoses, but I had given up on ever finding the doctor that was going to look at my entire body and listen to my entire story, of which most doctor’s won’t take the time to do, like this neurologist does. I’m trying to stay calm until I hear where he ends up. Maybe he and I, both, will get lucky and he won’t end up at the VA hospital.
        Sorry, I didn’t mean to write a book. lol
        I hope you find some good doctor’s and get the answers you need so you can get the proper treatment that you need. Don’t just settle for these doctor’s. Keep going til you can’t do it anymore. I did that for years and I now have the team of doctor’s that I feel are the best I’m going to find, even though only a handful of my many doctor’s are really any good. My primary care doctor, Neurologist, Hematologist, and 2 psychologist’s are really the only one’s worth seeing. I have almost every kind of “ologist” there is to have. I’ll shut up now.
        Hope you had a “good” day! XX Peace out! πŸ™‚

        Liked by 2 people

      2. I completely understand what you mean about the ER. I’m so sorry that you’ve gone through all of that! You must be very strong.
        Yes… Doctors love their ranges, don’t they? It’s hard as some people are fine in range, but others will have symptoms if they are close to being out of range.
        I’m glad you found a good doctor, but I’m so sorry that you might lose him. I hope something works out for you! It’s very hard to get a good medical team. Right now, I’m happy with my doctors, although I’m meeting new ones in the next few months, so fingers crossed they will be ok too.
        Good luck with things and I hope your weekend is going well. ☺

        Liked by 2 people

  3. My weekend was actually horrible, but it had to do with a lot of different things, not only medical, but you know………….stress is the worst thing for us. Today has been a better day. I’m just trying to stay “calm” until I see my Neurologist next week. Hopefully, he’ll tell me he knows where he’s headed and I can follow him.
    I’m glad you’re happy with your current team of doctor’s and I hope your new doctor’s will work out for you, too. Fingers and toes double crossed. XX πŸ™‚ Take care.


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