Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by ANCY

  1. Hi, been a while since I've posted. Curious if anyone else has had a sudden change from hypotension to hypertension? Beginning of This year I started Northera which really helped stabilize my blood pressure and got off the Florinef. Also used Midodrine and clonidine as needed but rarely needed the clonidine. Over this past summer was able to see a lot of improvement and was down from avg 10 pass outs a day to 10-15 a week roughly. Due to my central line bursting ended up with sepsis beginning of November. Spent 12 days in ICU fighting to get blood pressures up out of 50s/20s. The extreme low bp sent my heart into vtach so had to start an amyodirone drip along with the pressors and Eppi. Trouble was I'm extremely sensitive to pressors and sky rocketed my bp over the 200s on several occasions. Ended up having multiple bacteria grow on cultures and so concern was if something was growing on the valves of my heart. Echo didn't give a real clear picture but due to such low blood pressure TEE was deemed too dangerous and decided to proceed with 6 weeks of iv antibiotics just in case. As I started to improve they switched some meds added Florinef and peeled back other meds. At this point my bp started jumping on its own... They were somewhat afraid to treat these highs after spending so long battling the lows. Ended up with Posterior Reversible Encephalopathy Syndrome, an unbelievable headache and having Neuro symptoms from that. Most irritating was the blindness and near blindness. Things seemed to be getting better so worked on restarting tube feeds and setting up New peramitors and guidelines for managing the changes in my bp. Made it home on the eve of Thanksgiving and while it was nice to be home struggled with pain and bp management. There was definitely some connection between high pain and spikes in bp but not every time. On the 4th of December things came to a head and landed up in the ER in a hypertensive crisis. CT showed progression of the PRES which the ER Dr said was causing my inter cranial pressure to elevate and in turn cause the pain and inccesant vomiting, maybe also raising bp. Have several doses of hydrolazine but didn't last very long so started me on a drip and sent me to ICU. At this point had dc all my bp meds and Neuro said Northera could contribute to PRES so instructed not to restart. Did restart Midodrine as in between highs had some significant drops. Have spent the last several days going from extreme to extreme and not making a lot of headway towards an outpatient care plan. Except that clonidine no longer seems to work. Tried clonidine again last night and twice had to resort back to the hydrolozine. Thankfully that worked after a bit because Was close to starting the drip again. Kind of like I'm stuck in a rut... Unsure if this is a new normal, effects of sepsis, or even the iv antibiotics. So far any time i spend out of bed I'm unconscious more than conscious and obviously can't go home like that... Anyone experience a change like this? What brought it on? For those with high bp, how do you manage it? Do you also get lows? If so, what do you do for them? TIA for any insight!
  2. I actually have a groshong now. Have had 3 ports previously that all got infected, as well as other central lines... Went with the groshong on recommendation from infectious disease because we can use ethanol in it to try and prevent infections. I've had sepsis 10 times now so would be ideal not to have/need a central line but the difference iv fluids make in my case is indisputable, even for Infectious Disease. I also deal with a lot of gastric issues and so have a feeding tube but still unable to get enough fluids in that way. So there's really two reasons why iv fluids are so helpful for me.
  3. I have lows and highs but have seen a drastic change this year with a switch from florinef to Northera, I'm a bit more stable. I take clonide for a sustained bp of 155/100 per cardiologist. (I bounce around a lot and frequently the hoghs come down on their own after a while.) I also take Midodrine if im running 110/60 or under with already taken my Northera. My bp drops really low, especially with standing, I pass out somewhere around 65/40 and have had readings as low as 42/20s while unconscious. My mid avg though is around 130/80 so can get symptoms with a drop under 100 systolic. In the begining this was really scary but a couple years down the road now and have learned to mange it better. I do a liter of iv fluids every day which has been the BIGGEST help by far.
  4. Yes! Just about every time I'm outside, which isn't very much. I also literally feel like I'm burning on any exposed skin. Ive always had photosensetivity even as a child. Do you wear a hat? It helps me a little bit, still get the headache but not so immediate. Do you squint? I know I do a lot, even with shades on, which makes the headache worse... This summer I've been working on overcoming obstacles that keep me indoors so very interested to see what others say!
  5. Well, plans are on hold again temporarily. Ended up on the hospital... Hope to get back to standing amd "riding" soon. I will have to look into the local places and see if they have a saddle I could use.
  6. Congratulations!! This week's achievement include standing for 30 seconds without passing out and sitting on a saddle, not on a horse, with a final goal to ride by end of summer. Slowly but surely!
  7. Dysmotility of the esophagus can cause trouble with swallowing. That is tested by esophageal manometry usually done in conjunction with an endoscopy. I've also had trouble after a surgery when according to ENT they temporarily paralyzed my vocal chords when they intubated me. I lost my voice as well that time though.
  8. I was on Florinef .2-.5 a day for many years, along with midodrine. Almost always needed some amount of potassium supplementation. End of last year was on .1 3 x a day with 20meq potassium supplementation. The dosing of my Florinef and potassium has always fluctuated depending on what my blood pressure and other things were doing. I have severe gastroperesis so even off florinef i am still on 15 mEq potassium, at one point I was on 40 mEq a day but that meant I had to be monitored more closely. The goal my Drs had with using florinef was to bring up my baseline blood pressure, then use the midodrine prn for more regulatory control. Florinef's effectiveness has always been dependant on my having adequate fluid intake which is always a struggle for me. This year my cardiologist switched me to Northera and I have been able to slowly taper off the Florinef while titrating up on the Northera dose. I do get better stability with the Northera, it's effectiveness is not dampened by lack of fluids which is a huge benefit for me. I also need less prn Midodrine with it. However Both florinef and Northera are outmatched by the effectiveness of the iv fluids I've been getting for around 2 years now.
  9. I'm on xeralto now. I was on Eliquis but insurance was giving me a lot of grief so switched to xeralto. At one point I was doing lovonox injections, glad i don't have to do that any more! Lovonox can be reversed and is shorter acting which is why they tried me on it. My stomach was inflamed and bleeding on the last EGD. It's been almost a year since then so if I drop really low again they want to do another EGD. They suspect that with the last bleed I had a spontaneous ulceration from the sepsis in combination with some possible hemolytic anemia from the iv rosefen. Last year I also had trouble because of forever heavy periods so had a hysterectomy. Obviously the drop in March to 4.2 was not the same culprit... We are thankful that have at least some stability with my blood counts besides that event. Had a bunch of trouble with my feeding tube bleeding recently but thankfully it didn't drop my counts dangerously low.
  10. Got to go sit on a saddle! Not on a horse, but working toward that goal by end of summer. We named the "riding stump" woody and thoroughly confused the horse. Lol! Only passed out once so we call it a success.
  11. I pass out almost every day and some days more than 8. I do stay alone but stay in bed most of the time and use my wheelchair with a seatbelt when up. My biggest asset is i keep my service dog with me because she can worn me if I'm not safe and going to pass out. It took us months to find what works for me to be safe alone and a couple years before my service dog were pretty hard. You can do it though, just have to think outside the box and definitely good to start with small increments of time. You will get there eventually!
  12. The groshong is definitely more low profile and nothing sharp/hard so I can lay on my side without discomfort. (I'm a side sleeper) with ports if i layed on my side where the needle penetrates my skin would hurt. Same with clothing sometimes. It was nice with the port to have the ability to deaccess and not have it constantly hanging out. I was accessed all the time though so didn't have much opportunity to enjoy that. Groshongs are designed to not need any dressing after 9 months, my Drs and I will probably never feel safe doing that though. The dacron cuff on the groshong is supposed to keep any bacteria from being able to migrate internally. Groshong catheters are sutured in place, mine has 3, which can sometimes get itchy under the tegaderm. Both groshongs and ports are tunneled catheters which reduces some of the risk of blood infection because it doesn't immediately enter the blood stream like a PICC or temp central line in the neck. I do not heparin flush the groshong, it's not necessary, according to the manufacturer, because it has a valve to prevent blood backing up into the line. I believe this is true because I rarely have trouble getting blood return. When i do it seems positional. When i had my port it I had to use cathflo frequently, heparin helped but still would clot on the end and it was VERY positional. The last port I had was also tilted making it a little more difficult to access. If it wasn't my nurse it would usually take 2-3 tries. As a side note, not real important but a bonus to a central line placed in the chest is I can slip the iv bag and pump through my shirt and don't have to unhook to get dressed. Not a big deal i guess unless you are hooked up 24/7. Ido have an IgA deficiency, not sure how much that weighs in on the sepsis. Whatever keeps my wbc count from rising is almost certainly related, we have not identified the cause as of yet though. I've had so many lines pulled because of infection I don't think ive ever lasted what would be considered a normal length of time with any line. I was on tpn for a while but had 3 blood infections almost back to back so it was deemed to dangerous for me because the sugars and fats were allowing the bacteria to grow. It's a balancing act but right now I'm semistable with 2 liters iv fluids in order to push more with my tube feed formula to get calories up. I get iron infusions about twice a year and hope to soon resume ivig which we were doing once a month. Other than that it's just iv fluids and recently started a prn phenagren iv push. Over the last year or so ive needed a ton of blood transfusions (28 units total) which have also been given through port/groshong. I've had sepsis twice in the last 12 months. The theory on both of those being a gi bleed introducing bacteria that migrated to central line and colonized. In March it only took 18 hours for cultures to come back positive from the port and 24 hours for the peripheral. Until they pulled the port I was not really responding to the iv antibiotics, which was kind of scary. As for the PEs i do not have a clotting disorder, they believe there is at least some connection to the severe anemia I had at the same time. Also deconditioning and inactivity. (Wasn't moving much because I was so anemic) trial off blood thinners was unsuccessful due to reclotting so on blood thinners indefinitely. First PE was discovered after treating for severe anemia (hemoglobin 5.4) and seeing very little improvement. The infectious disease dr who was rounding on me ordered the CTA because things were not adding up. I was needing 4 liters of supplemental O2 just to keep me sitting between 88-93. That was probably the most striking and concerning thing that was diffrent from POTS or anemia. I was so short of breath I could only say about 3 words before stopping to breathe. I was having crazy fevers with no pattern (I have a sort of fever pattern with sepsis) and my heart rate even with tons of fluids and blood was still around 140s resting. The other symptoms I had could have been a flare, pneumonia, or from the extreme anemia. I had 2 clots, middle and lower right lobe and secondarily had temporary congestive heart failure, that has since gotten better. Second time around was 2 weeks after stopping blood thinners and taking out my ivc filter. I went to the ER because of anemia (hemoglobin 6.1) and the dr ordered a CTA because I was having chest pain, shortness of breath, and low o2. At this point hematology recomended i remain on blood thinners indefinitely despite the reoccurring anemia. Thankfully the second time clots were smaller and didn't have repercussions once clots were dissolved. You are certainly right to be cautious of blood clots! I think every treatment has risk which have to be weighed by the patient and medical team. My Drs and i are more inclined to take the risk with fluids because without fluids I pass out 20+ times a day and deteriorate quickly.
  13. Well late comer here but wanted to see if i could answer any other questions you might have. I've had piccs several times, 3 ports, 2 groshong and several other temp central lines. Currenty have a groshong because my Infectious Disease dr has me use an ethanol lock to decrease infection risk. I was told that it can only be used in a groshong. I have had sepsis 10 times now and central lines are always a touchy subject but the difference iv fluids make for me is undeniable. It cut my syncope episodes by 2/3 and I'm able to do so much more with them. Over the last year I've been running fluids 24/7 equalling between 1-2 liters a day. (About 40-80 mls an hr) I also have a feeding tube but it's a constant battle to get enough fluids through it alone to keep me hydrated. So my orders are essentially 1 liter a day + whatever I need to total 2.5 liters total intake. As for showers in America there is a product called Aqua guard by Cenorin. It is like tegaderm but only sticky around the edges. I've also used this with my port when needing to shower while accessed. When i had my port insurance would only pay for my RN to access once a week so on the other days we covered the needle and sterile dressing with the aqua guard. I have had two PEs both unrelated to having central access. With all the picc I've had I was blessed that I never developed a DVT. I did have trouble with clots forming on the end of the line but we were always able to use Cath flo and get them working again. Also wanted to mention that the infection risk is lower with a port but only if it is not accessed 24/7. With having sepsis so many times I know what symptoms I get that are indicative of infection vs a "normal flare" biggest clue is the fevers over 103. Although in March we had a time convincing the ER Dr i had something more than the flu... they have a hard time initially identifying when I have sepsis because my wbc count is usually normal or only slightly elevated. All to say the risk to benefit of iv fluids is certainly not to be taken lightly and a very individual decision.
  14. They are doing well, almost a month old now. Have to say goodbye soon when they leave for new homes. 😢 Can't be too much of a crazy goat lady! VID-20190411-WA0008.mp4 VID-20190411-WA0013.mp4 VID-20190402-WA0004.mp4
  15. A few highlights... Hematology, after i passed out in front of him, well, you REALLY have POTS. As if people can't have POTS if they don't pass out? A New Surgeon's reaction after I pass out is to tell me he ran out in the hall with his hands in the air screaming for help! Of course that's not what he did, he was just lightening the mood. My sister was with me so there was no cause for alarm. Not really a statement, but, too funny. So went on a trip from Colorado to Ohio to visit family and ended up going to the ER because I needed blood. I have a habit of sitting on my legs and am a full time wheelchair user. As a small town hospital, With everything I had going on, they were rather flustered. During the intake the nurse AND the dr charted that I was an amputee. So dr leaves and comes back in and does a double take because I had switched left to right but he still didn't say anything about it. Then the nurse was cleaning up trash from accessing my port and accidently grabbed my skirt in the process, GASP, "you have a leg!!" Then proceeds to tell me they both charted it as amputated. Moral of the story, don't sit on your legs when going to a new hospital lol! Needless to say, the dr couldn't keep a straight face after that. A cardiologist solution when I told him I couldn't do the exercise program because of a bad c diff infection, "stick a cork in it" ??? Umh, no, exactly what you shouldn't do! Different cardiologist released me from the hospital when I was having bradycardia and was sitting in the 40s primarily. He says, "come back if it gets worse" our response, "worse, like, dead???" Then he told us to come in if I'm passing out longer, which I already was... Ended up coming back when I was 20s-30s and getting the pacemaker. You really do have to laugh at things, although often times it's not funny while it's happening.
  16. In the midst of a life revolving around a chronic illness it's important to stop and smell the roses from time to time. Spending time with my goats is one way I'm able to decompress. Hoping that maybe these cuties will bring a smile to your face too! 😊
  17. So glad you are seeing such an improvement! I am as well, been almost a year now doing a liter a day and boy does it make a difference! Because I also have severe gastroperesis my GI dr has me do extra fluid iv if needed for a total of at least 2 liters all combined. Its a blessing having drs that will work with me and my ever changing symptoms.
  18. I also have run into this but was able to find a pharmacy that had some. I usually get a 3 month fill but Was only able to get 1 month. My cardio is starting me on Northera and we are hoping to cut down or stop the Florinef.
  19. I used to pass out 20-30 times a day and know how awful it is... Now a typical day is around 3 times but still get up there sometimes. Right now I'm in Midodrine, Florinef, Northera, and daily iv fluids. Just started the Northera and we are hoping to see more improvement with it. I have POTS but also diagnosed with NCS which is compounded by my gastroperesis because I can't get adequate fluids in. Right now I'm getting 2 liters of iv fluids daily to compensate for that. Don't settle until they give you a better way to cope with symptoms. I did at one point and ended up worse because of severe deconditioning.
  20. I have had 2 Pes, 2nd occurred 2 weeks after stopping blood thinner treatment for the first one. Also have bleeding problems that preexisted blood thinners, theyve just made it worse. In fact my hemoglobin was at 5.2 when we found my first clot. Has been a looooong journey up till now, 58 units of blood, a failed ablation and subsequent hysterectomy and we are hoping that things will improve. If you have any other questions I'd be happy to try and answer them. Praying your journey is easier!
  21. I had my first PE in May and a second about a month ago. Mine have been caught during admissions for severe anemia (hemoglobin 5.1 and 5.8) and so differentiating between blood loss and PE symptoms has been difficult. Since I've had many more instances of blood loss over the last 6 months I can identify some of the symptoms now. With the first PE my heart rate would not come down, even after transfusion, my blood pressure stayed pretty labile as well. The biggest signs we're they had me on 4l of oxygen because my sats kept dropping, I couldn't say 3 words without taking a breath, and I couldn't breathe deep AT ALL. The PE did not show up on X Ray as it was small so only found on day 4 of admission when they did a CTA at the behest of infectious disease, I was having fevers of unknown origin as well. On the CTA they did see that my heart was enlarged and the radiologist identified possible heart failure. I was told this was because of the PE. My second PE was found simply because an ER dr wasn't willing to let my symptoms slide as purely the anemia, due to the fact I had a history of PE and had stopped blood thinners 2 weeks prior. I had come in purely because I knew I was transfusion level anemic yet again... (I get chest pain, constant tachycardia, lower than my normal low BP, and SOB with hemoglobin below 7.) So the ER Dr ordered a CTA just to be sure and found I had formed 2 new clots in my right lung but this time my heart was not enlarged. To me I had little to no symptoms this go around, I probably would habe recognized them though if I wasn't also anemic. They did admit me to ICU because they wanted to treat PE with heparin but concerned bleeding would get out of hand, yet again... I started having "v tach" in ICU which cardiologist said was because of the strain of PE AND anemia together was too much for my heart. Later they were debating if it was true Vtach or pacemaker induced, which ever it is, it resolves on its own so we don't have to worry about treating it. My cardiologist said that they do see this with PEs and more likely that's the driving factor although anemia doesn't help. I don't know if this is any help at all, it has been hard weeding through symptoms to know what's causing what... After initial CTAs we have not done repeats as I'm already on anti coagulation therapy so if i formed another clot we are essentially already treating it. Worthy of note is after the first PE i followed up with pulmanology who said what they saw was heart failure, not a PE, according to him. This was obviously disproved when I formed a 2nd clot just 2 weeks after stopping blood thinners. So I wouldn't say it's out of the realm of possibilities for them to miss a PE, if the circumstances are right.
  22. I also don't have a reaction to getting fluids over an hour but do benefit from slowing it down. We went from 1 Hr to 4.5 hrs and was obvious I could hold onto the fluid better, and so had an even better response. I was having so much trouble that my homecare nurse thought giving 24/7 a try and that has worked even better. Obviously not everyone can tolerate carrying around fluids 24/7 but I already have continuous tube feeds so already kind of used to it. The biggest diffrence is that it helps my blood pressure stabilize somewhat and I don't pass out as much. Something also to keep in mind is that if your albumin is low that can affect your ability to retain/absorb fluid in the cells. Anytime my albumin is low I get almost no benefit from fluids, happened while I was in ICU a couple weeks ago and they couldn't figure out why I wasn't responding to the 3-4 liters of fluids. After they replaced my albumin finally made some headway.
  23. We haven't really gotten further than dysautonomia being the cause of my syncope... Do know deconditioning is a part of why it gets worse for me, especially the sitting syncope, kind of been a downward slide this year with exercise unfortunately... Something that has helped my Drs is bringing in a log of my blood pressures, when I'm having episodes, and heart rate. I don't know of any other kind of testing to be done other than dysautonomia work up. I have a pacemaker so my cardio has at least has some idea of what's going on with my heart in that respect. They have questioned whether I have pure autonomic failure but we're not going there just yet. I was admitted to ICU because I was bleeding and down to a hemoglobin of 5.8 AGAIN, but also had an acute pulmonary embolism that needed to be treated with blood thinners... They wanted to be sure when they put me on blood thinners I wasn't going to bleed out. Then they ended up keeping me a couple more days in ICU because I was having Vtach... Eventually ended up going home, for 6 days, then back again due to bleeding... Menstrual bleeding is the biggest culprit so our hope is with the ablation they just did last week I will stop bleeding to the point of needing transfusions every other week. Obviously all of this has stirred up things so still working on getting back to my baseline.
  24. I do!!! A daily occurance for me for years... My syncope can happen randomly, not necessarily induced by posture changes. Passing out sitting down is normal for me 3-4 times a day right now. On a bad day, or when I can't lay down to recover, it can be 20+ times in a day, especially if I take a shower. Over the last year or so I have not walked or stood longer than a few seconds without passing out. As for laying down episodes, they are more rare but do happen. Two weeks ago in ICU they almost had to use dopamine because i wasn't responding to treatment for my low blod pressure. Ended up giving me a TON of midodrine and keeping me upside down till things calmed down. It can get tricky though because I also go high sometimes. They got to see first hand as I went from a BP of 75/40 to 225/100 in 15 minutes. What finally made the difference was albumin. They were throwing all kinds of fluids at me but without the albumin I couldn't hold onto it. Normally will treat with midodrine, iv fluids, resting reclined or flat, and electrolytes if needed.
  25. I do saline infusions, been a little over a year now. Started with twice a week, 1 liter over an hour. I noticed improvement the day of and somewhat the day after. The goal was slightly different as we were trying to find a way for me to progress in Physical therapy and so did infusions on the same day as PT. After several months and seeing the benefit I had a port placed because I'm not an easy stick. After that we were able to switch to home infusions and switched from running over 1 hour to 4.5 hours. since we had been doing Tuesday Thursday for infusions and were seeing si much benefit, my nurse suggested adding Wednesday since my port would already be accessed. Back in May I started having more trouble with anemia and keeping my tube feeds running and started a downhill spiral. During the last several months I've been doing 1 liter a day run over 24 hours. Honestly been my lifeline without it i would have had to spend MORE time in the hospital. I think it's different for everyone and really needs to have a Dr who knows what they're doing. My heart has been under a LOT of stress lately, multiple pulmonary embolism, frequent need for transfusion due to blood loss, among other things. This has brought about some rythym changes that are exacerbated by hypovolemia or dehydration. This has shown me just how much the fluids are actually helping my body cope.
  • Create New...