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    • #21941
      Brittany Foster

      I recently had my j tube removed due to the amount of pain it was causing me. Since getting it out, my doctors want to monitor my nutritional levels to make sure that my electrolytes don’t start getting low or that my red blood cells don’t start dropping like they have before. I never had routine blood work done, but with the concern for malnourishment after getting my tube removed, it is best to be sure that nothing is going on with my body.

      Do you get routine blood work? How often to you get your levels checked in your blood? What types of things are your doctors monitoring for?

    • #21947
      Colleen Steele

      When my son had PH he at least had a liver function test done once a month but usually other labs were added. Post transplant for a long time he had blood work at least 2 times a week. Now it’s once a month but it is a LOT of tubes because many things need to be checked regularly.

      Two of his labs have to be drawn a half hour before he takes two specific medications. That gets really tricky sometimes.

    • #21950
      Brittany Foster

      Yea that is really hard. I know that for some tests and lab work I have to fast or not eat after a certain time the night before. But then with some of the medications that I take, I get really sick if I can’t have anything in my body while I take them. Medications just add to the drama of things that’s for sure. Glad that his labs died down a bit but that is still hard to get all that blood taken at once. I’m sure he is craving something sugary after the amount of blood they take! I always crave sugar after a lot of blood is taken.

    • #21952

      Hello! I get my blood work done every week by a home nurse. Traveling is hard for me. So this works out the best. She also checks my vitals, my medicine, and making sure I am eating. She also will give me meds through my port or IV, if I need fluids or any additional meds. It took awhile to get use to this arrangement. I felt like I was being babysitted , And I have had a few different nurses. They are traveling RNs. But I do this to save my kids ( mostly my 18 year old daughter, who also works full time) not to have to drag me and my tanks everywhere.

      • #21964
        Brittany Foster

        I have found that home nurses have really been a blessing for me in my own life. I love the fact that they will come to my house if I am not feeling well and can let me know whether I need to see my doctor or go to an urgent care or hospital. It also helps to take the stress off of calling and trying to advocate for myself with doctors because they do a lot of the advocating for me. It has been a stress relief in many ways as a patient and also I am sure for my caregivers as well.

    • #21953
      Jimi Mcintosh

      I usually have blood work done 1-2 time a month to measure kidney function, red blood cell count, diabetes and anemia. It is a necessary evil that I have to endure, currently I am getting B-12 shots and liquid iron supplements.

      It is normal to want sugars, I usually drink 8 oz OJ, it rapidly raises your glucose level. Consume 16 oz water or other beverages. A glass of wine, helps to replenish your body.

      • #21963
        Brittany Foster

        That is good that they are checking your levels and making sure that things are in the normal range or at least as normal as possible for you! Always better to be safe than sorry. I have heard of people having B-12 shots and the iron supplement.

    • #21986
      Jen Cueva

      Hey Brittany, I think that getting the blood word routinely is a hassle but for me, it does help limit hospital visits. I go every 2 weeks. They check my blood counts, kidney function, and electrolytes. They also do the BNP monthly and a few others. They did say that this would be ongoing for me, it has been all year so far.

      I think to help keep an eye on things, this is more preventative. Thankfully, I can do every 2 weeks at Quest, locally. The monthly ones are at the hospital lab. I hope that you have started feeling some relief from the pain that the tube was causing.

      • #21994
        Brittany Foster

        Hey Jen,
        So lucky that your doctors and medical team are taking action to catch things as soon as possible and take those preventative and pro active approaches to your care. That is so important for those of us with chronic illness! I’m sure those monthtly labs at the hospital will feel more routine eventually , especially knowing and understanding why you are doing them and that it is all for the best.

        I have been having a lot more relief but my doctors are beginning to think about long term care and consequences of not having the tube and they have already begun discussing putting another one in and trying another. Hoping they can figure something out Because my body needs that support too.

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