kmichaelson Posted July 11, 2023 Report Share Posted July 11, 2023 Hi all, I am returning to this forum after a long time away. This forum was a lifesaver for me when I joined about ten years ago and had no idea what was wrong with me. Eventually, I was diagnosed with POTS--a diagnosis I probably never would have reached without DINET. I have been fortunate to be able to manage my POTS/dysautonomia symptoms fairly well over many years. I'm not saying they didn't interfere with my life, but I improved with the right medicine and many lifestyle adjustments. But suddenly, I feel like I'm back where I started ten years ago when I was first diagnosed. I have terrible shortness of breath with any exertion, exercise intolerance, adrenaline surges, racing heart, and near syncope nearly every time I stand. Plus there are a million other weird little symptoms that I know you are all likely familiar with. Unfortunately, I've had two wonderful specialists who treated me retire, so I made an appointment with my primary care doctor, and it was such a terrible experience. I told him how I've been feeling lately, asked if he could recommend a new specialist. He told me to get on a regular exercise program--which I have been for years--so I told him that I have tried, but now I feel much worse after exercise. He said something like, "well, that's not what we want," got up, and left the room! There were so many things I wanted to ask him about, but he was gone! Then his nurse came back in with my referral paperwork and to tell me the appointment was over. It sounds like it will likely be months before I can see the new specialist and I'm afraid I'll have to go through all the testing again. It's just such a scary feeling to be back where I started and not know how to get better. I'm sorry for the long complaining post. I just know that people here understand what this is like. On a side note, I have seen posts from people on this forum who do IV fluids on a regular basis. Could you tell me more about how you do that. Do you go into urgent care every time? Does a doctor order it? My insurance isn't great, so I'm worried about the expense of that, but I might need to try it just to see if it helps. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted July 11, 2023 Report Share Posted July 11, 2023 Sorry to hear of your relapse. I can relate to the access issues. After exhausting all medical options in the state of Maine, I’m now driving 10 hours to NYC where I’m receiving excellent care. I have received IV saline at a local Infusion center/Hospital. It helps me get back on my feet after a flare. Unfortunately I’m having venous access issues, too much scarring from years of Rituxin for my RA. Good luck! Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted July 11, 2023 Author Report Share Posted July 11, 2023 Thanks, Doug. I appreciate the well wishes and the advice on getting IV fluids. I'm sorry that you're having issues from scarring though. It sounds like you're coping with a lot. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted July 11, 2023 Report Share Posted July 11, 2023 I have standing orders for IV fluids at home when I need them. It’s through a home infusion company, and I can use my husband to start the IV because he’s a nurse. Then we run the fluids ourselves, slowly. Most people use the company's nurses for that. I do use them to administer the IVIG that I also need. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 12, 2023 Report Share Posted July 12, 2023 @kmichaelson, I’m sorry to hear you’ve had a relapse. I have found regional Facebook groups invaluable for local knowledge. Dysautonomia International has quite a few, and there are others as well. Even if you don’t use Facebook, it may be worthwhile to create an account to find recommendations for a specialist (and a new PCP by the sounds of it). You can post anonymously in Facebook groups, so you don’t even have to give your name. And many groups have a list of recommended local specialists you can download, so you may not even need to post a question. You can get IV fluids through a “medi-spa” if there’s one in your area, no doctor’s order needed, but beware that they tend to run the fluids a little fast for dysautonomia. So make sure to check that they can do them over a suitable time frame. Of course this costs a bit. Otherwise a specialist would give you an order for a local hospital or infusion centre. Sometimes the specialist can instruct your PCP to organise this. Some people can get this service at home. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 12, 2023 Report Share Posted July 12, 2023 @kmichaelson So sorry to hear you are feeling poorly again, and BOOOO to your doctor! --- I have an infusion port and get bi-weekly IV fluids, which have greatly improved my symptoms. But before the port my doctor gave me a standing order for 1-2 liters of LR weekly as needed. Whenever I needed them I would go to an infusion center, urgent care center or outpatient surgery and they started and IV and infused the fluids. They always normalize my BP and HR ( whether high or low ) and instantly give me energy. I am wishing you the best of luck, hang in there! Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted July 12, 2023 Author Report Share Posted July 12, 2023 Thanks so much to all of you for your help! This is such a caring and knowledgeable community. 💖 I'm feeling more positive about things today, but I was just so shocked and discouraged by how completely unhelpful my doctor was yesterday. I appreciate all of the information about how you get IVs and am going to look into some of the options you all have mentioned. Great advice about a local Facebook group as well. You all are great and have made me feel more hopeful! Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted July 12, 2023 Report Share Posted July 12, 2023 8 hours ago, kmichaelson said: Thanks so much to all of you for your help! This is such a caring and knowledgeable community. 💖 I'm feeling more positive about things today, but I was just so shocked and discouraged by how completely unhelpful my doctor was yesterday. I appreciate all of the information about how you get IVs and am going to look into some of the options you all have mentioned. Great advice about a local Facebook group as well. You all are great and have made me feel more hopeful! Glad to help! This is really a supportive and smart community. Some of us find that slower IV fluids and using LR instead of NS are more beneficial. It stinks that my 2L takes 16 hours or sp to run in, but I get longer lasting effects that way. Just in case you get it quickly and find that it wears off too fast. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted July 13, 2023 Report Share Posted July 13, 2023 Pistol, how do you like the hub? I’m getting comments from nurses that I may need one soon. How was placement? Any side effects? Pain? How easy is maintenance? Thanks for any info, I appreciate it, this is new for me. It would be nice to experience fewer fishing sticks! Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 14, 2023 Report Share Posted July 14, 2023 @MaineDoug When compared to how often I ended up in the hospital before the port ( hub ) I am so much better! I have had a port for the past five years and my POTS related hospitalizations since then are three. Compared to every 6-8 weeks before! The surgery is a minimal procedure and you might be slightly sore afterwards. I have a nurse come once a week to change the needle ( this needs to be done in a sterile technique due to the high risk of sepsis ) but I do the infusions myself. Sometimes I need a bag every 2 days and sometimes every 4 days. Now, there are risks involved. My doctors, including my wonderful POTS specialist, were very reluctant to let me have a port because of the risks of infection ( the port has a tube that goes right up to your heart, so if it gets infected you could die ) and blood clots. I am on my 5th (!) port in as many years, they are supposed to last 5 years each. Everything that could go wrong wiht one happened to me - the first one was inserted sideways ( boo to the surgeon ), the second one malfunctioned, the third one got infected and I ended up with sepsis and the fourth one clotted off. This is highly unusual though. Despite the risks in my case the benefit clearly outweighs the risks. My quality of life would be pretty much nonexistent without the IV fluids since I was bedridden and passed out and even had seizures several times a week. That is dangerous too, so now I am able to have a life. What is the reason they are considering one for you? Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted July 15, 2023 Report Share Posted July 15, 2023 Thanks for relating your experience, I really appreciate it. My veins are scarred from years on IV biologics, especially Rituximab. My decision on the hub will depend on future treatment decisions. If I need regular IV’s I’ll go the hub route. The need to be NPO before surgery is a real challenge for me. I dehydrate VERY quickly if I stop drinking (4 gallons a day). For my upcoming hip I’m going to insist on IV insertion the night before when fully hydrated, then they can keep me pumped up with saline until the surgery is done. Oy Vey! 🤪 Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 15, 2023 Report Share Posted July 15, 2023 @MaineDoug yes, IMO that would be an indication for a port. There are other long term IV access methods also, such as a PICCline that gets inserted into your antecubital ( elbow ) and threads up to the subclavian vein. --- Whenever I needed surgeries that required me to be npo they would always have me come in at 6 am and immediately started fluids, even if the surgery was later in the day. I know knee replacement surgery takes a lot of rehab later, so I wish you the very best. All my friends that had it done were like brand new people afterwards because of the improved activity level and improvement of pain, may it be the same for you! 🙏 Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted July 16, 2023 Author Report Share Posted July 16, 2023 Edit: Oops, I posted this response in the wrong thread! Quote Link to comment Share on other sites More sharing options...
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