Hi folks, I will try to sit up long enough to tell you what happened. I had a colonoscopy on 1/19 and stayed overnight at my sons....got up next morning feeling weak and sweaty and almost fainted on way to bathroom. Ended up in ER in our town for a GI bleed that was hard to assess. Waiting and watching IVs 2 arms and blood was started for 7.3 hgb and a nervous doc. Started Bleeding massively and pumped blood in both arms. I lived with hgb of 6.
Ambulance to big town hospital that night after they found a bed. Had another massive bleed 6 hours after the first with 2 units of blood. Had another bleed 8 hours after the 2nd with another 2 units of blood. They had no idea where the bleed was as didn't show up on Interventional radiology or Cat scan with dye. My colonoscopy was clean expect for 3 little AVMS that my GI had doc lasered during colonoscopy. I have an experienced very good GI doc.
I had been messing around with not feeling well for 6 months and strange symptoms....was also in a lot of back, arm and hand pain and was going down hill. Ended up having a massive bleeder in gut that they think was a polyp that had ulcerated and would bleed a little and heal over again and again.A vessel was pumping blood out. Didn't show up during colonoscopy. I was awake during the scope when they stopped the bleeding and the doc was able to get it stopped pretty much due to his extreme expertise. Ended up 7 days hospital, 9 units blood plus plasma, etc. Now home and able to walk around some. Hgb is 7.9 on discharge and had been fairly stable.
Folks, make sure you get your colonoscopies done as these very strange things can happen. I am amazed that I lived through this and I think the docs felt the same way. If I didn't have the colonoscopy and had a record of what was going on in my gut.... plus needing to stay at my sons...I probably would have died at home with a bleed. The strange thing is that I feel better than I have in a long time as no body pain any more. My last colonoscopy was 2 years ago.
AVMS don't bleed like this did...they ooze your life blood away until your weak and anemic. My hgb was 12 month prior to this event and had no shortness of breath or severe weakness. I will be on here now and then but now all I want to do is sleep and eat a lot...I'm strong in legs but weak and short of breath. Long recovery I believe. Take care all of you. Hugs meirish
Irish,
I'm sending prayers that you get to feeling better soon. I wish I knew what to say to make you feel better but it sounds like you have a pretty caring son and I will pray you have no more bad things happen but only good from now on. Take care Irish, as I know there are so many who care about you!
Wow Irish - that sounds totally horrific. So sorry that happened to you but very glad you have come through it. You are certainly tough!
Rest up and take care of yourself.
Take care - Scottie :)
Thanks for the posts you two. I don't know if I am tough to stupid. That has always been something my sister and I joke about. These things happen out of the blue and one thinks they won't live through it but God was good and I did. Now I have to be patient and not complain as I slowly recover. I am watching reruns os of reruns(lol) on TV and have quite a few weeks to go I am sure. Thanks all. meirish
I'm so sorry to hear of this latest complication, just remember, take your time healing! Don't rush things! Recovery from something so traumatic takes time and patience, and I know you know that, we just seem to have that tendancy to believe it for others, and rush it for ourselves, don't we LOL.
Please, keep us updated to the extent that you are comfortable with, and check in frequently to keep an eye on us! We need your presence, leadership and quiet strength!
My son took me to the doctor today. I felt stronger and my hgb was 8.8 so that was good., I was concerned if my blood marrow would produce enough red blood cells and so far so good. Trying to figure out my IVIG as I feel I should skip this week and do it next week. I have gotten fat in the hospital and now sitting around and eating good meals. So far so good....but every hour is a blessing right now and napping is my number one priority. Take care all and thanks for the messages and assurance. Boy was it fun to get out in the car today with the bright sun and 13 below zero. Cold winter, isn't it. hugs all meirish
Good to hear from you Linda....hope you are doing well and staying safe and warm.
Hi,
Just a short note to say I hope you are feeling better. Amazing how a day can look so pretty and one step outside can make me wonder how the heck it can be so cold and look so pretty!
Am glad to hear you are getting good care and resting. Take care!
I went for blood work yesterday and then my DIL took me to Walmart. I used the motorized cart but was able to get up and put my groceries in the cart. I did better than I expected. Then on Friday my son took me for my IVIG and that was only 4 1/2 hours instead of 6 1/2 hours. The doc cut the dosage because I had lost weight and also had less kidney function in my old age.
I am doing better and starting to get over the shock. It is really a shock on our body to be so ill. I think it is hard work for our body to try and die at times. I am getting more interested in things and sleeping less so that is good.
The weather continues to be very much winter in central north west MN. Today it was around 6 below zero. The wind was bad and so cold yesterday. I can remember trucking around to work and errands and not getting upset over the weather. This is the first winter I have really wanted to stay in as much as possible. That means I have reached old age. Just turned 79 r days before hospitalization so the years just keep going by. Hope all are keeping warm and safe this winter. Take care all. meirish
Thanks for the update!!
I am so glad to hear you are improving and yes that was a major shock to your body.
Ok, I can't beat your weather but it reminds me of Chicago or Mass. way back when I really could stand to be out in 20 below.
Stay warm and am so glad you are improving.
I am slowly improving but still get tired so easily. It was such a wicked, hard illness for those almost 2 days and being old really does slow us down in recovering. I am so bored but yet need to rest a lot. Awaiting spring that is for sure.....as all of us are. I miss being out in the fresh air. So icy around here that not safe for old souls to be out and about. Take care all and have a warm and safe rest of the winter. meirish
I hope you are doing better.
Thanks folks for asking about my recovery. I had blood work last week and hgb was 9.8 and back in today..5 days later because I have had increased weakness and wondered if I was bleeding again. Hgb to day was 10.1. Bunch of blood work and all ok.
Seems that it my myasthenia gravis that has kicked in causing the weakness. My last infusion was cut down in dosage and could be it was too low or could be that the stress of this illness just made me weaker. Doc put me on increased prednisone for a week and this should help. This is one of the treatments for increased weakness plus my medication for the weakness called Mestinon. Mestinon is a pill I take 3 times a day or more as needed. It is the same chemical that the soldiers give themselves in shot form when exposed to nerve gas out on the battle field.
These never fails to amaze me as to how they discovered that this drug would help myasthenia patients. I started driving again last Friday just to doctor in town and to Walmart. Not being very frisky which is fine. Too cold to be out and about. Sure stays cold in Minnesota this winter. Thanks all. meirish
I?ve not been keeping up with things, but Irish, I am so glad that you pulled through this!!!! You are truly a miracle and such an inspiration! So glad you pulled through this and continue to recover.
It sounds like you have excellent doctors and that is so important. Hang on cause Spring will eventually come! Two days ago we had good weather and it is 66 degrees today here in My part of Illinois.
Stay safe and well,
Kathy
I don't know if I posted this but it sure surprised me. I had the 10.1 hgb for about 2 days and then it started going down again. Why I don't know as I do't think I had a GI bleed again. The middle of April I went to the doctor for visit for something and my blood work was done. Doc called me when I was at the thrift store and told me my hgb was 7.6 and to get to the hospital ER. So off I went and ended up in the hospital. They monitored the hgb every 4 hours and after midnight it was down to 6.9 so I got one unit of blood.
I had one iron infusion about 1 1/2 days prior to the blood transfusion. For some reason the two so close together knocked my socks off. I was to have the other infusion the next week and I called doc and told him I needed more time to get back to normal. So the end of April I managed to get the 2nd iron infusion. Was scheduled to have an upper scoping in May and they refused to do it and I had to see cardiology first and then will have the scoping in the hospital as I am high risk. My aortic stenosis is the same as always and the high risk is probably because of all my other ailments. Ain't life fun. Rescheduled for scoping in July but don't have a ride yet due to son and DIL work schedule.
I think that it is getting to be work to have to go to the doctor all the time. So, I have blood work one day, IVIG another day and 4 doctor appointments on 4 other days in the next 2 weeks. I haven't planned what I will do for fun in-between that. Probably go to Walmart! lol Thanks for listening. It was 80 degrees today north of Mpls. meirish
Hi folks, Just thought I would drop a line. I am still sleeping a lot but starting to feel better. My HGB finally got to 12 about 1 month ago and was 12.4 again a couple of weeks later. This is the highest it has been in probably 9 months or so.
I had the covid and was given that new med Pazlovid and it helped me get less ill but still knew I had a bad flu. That Pazlovid affects the kidneys so docs have held my IVIG. Haven't had it since May 5th and was getting it every 6 weeks as my creatine was elevated much of the time. It went even higher with that new med so doc held the IVIG. Then my other doc took me off my Metformin and I have been so hungry and eating way too much of everything and gained about 8 pounds. So my body is really screwed up and I don't know what to expect. The creatine went down 20 points so that was good.
So now, will talk about the weather. It has been so hot as everyone knows and the last couple of weeks we have had some days that are really reminiscent of fall. Coolish and smells somewhat like fall. It is way too early for that cause farmers need more rain and warm weather. However, we will see what mother nature gives us.
Stay well everyone and hang in there with all the crazy things going on in this world. Hard to believe it is almost time for school to start. Take care all. meirish
Im going to just do some ad lib here regarding the bleed and current health.This posting may help keep me from having to start another thread. I have continued to get stronger only to become weaker at times. My hgb continues to drop and I had some weird stuff going on this fall. Oct 2022....
Had hgb of 10.4 and then down to 9.6 but these numbers have not made me feel really bad in the past. BuI have had bad pounding of my heart and shortness of breath off and on even when sitting and reading and not feeling stressed. My heart rate will go up at times but I am on a Beta blocker so that keeps pulse below 100 usually during these spells. My doctor can't figure this out and on one visit a PA told me you have complained of the same symptoms for the last 3 visits.
So I ended up with 14 days Holter monitor plus had to see pulmonologist who ruled out any breathing issues that would cause the shortness of breath and pounding heart. Scheduled to see cardiologist next month. Amazing how we have to wait so long to see specialists these days. Since Covid it seems like the whole world is in a hurry, stressed and unorganized plus short of help...a big problem for sure.
Also, the latest hiccup is I got a call from the radiology department at local hospital who is bum/with another bigger hospital where I was treated for GI bleed. I had an MRI on admit with the bleed and they found a couple small lesions on my pancreas and the call was to schedule me for a one year MRI recheck. So, had that done today. We had 15 cases of covid in the senior living where I am at so I put myself in more or less quarantine for about 2 weeks prior to this MRI so I didn't get the covid and have to reschedule the MRI...which I have had to do once already due to illness.
I have had issues with stomach and colon besides my bleeders and this has been since 2016. Lots of issues and hard to assess stuff. I keep telling docs that I am of the opinion that this is involving my pancreas and related to the sjogrens. I have done research on this and my symptoms are pretty suspicious. I even wondered if I had a chronic pancreatitis at one time. Asked PA to do blood work and one pancreatic enzyme was a little elevated which made me more suspicious. And then I started to feel better. ::)
So, I am better in some ways and worse in others. Ain't that the way it is with autoimmune diseases.lol Enough of this for now. Hope all of you are enduring and have not been affected too much by the covid this past year. I just read last week that another variant is into the US now and shows signs of causing more hospitalizations. When will this burn itself out??? May we and our families and friends all stay safe. Take care and stay warm and safe with this crazy winter weather. Hugs to all. meirish
A person just has to pay attention to their health issues. This was never more apparent than after having the MRI of my pancreas on FEb. 6th this month. I kept thinking I would hear from somebody about the results by the end of the week. Nada!
So waited for something the next week. It is now 10 days since the MRI which lasted close to an hour. Have heard nothing. It has occurred to me that the hospital where I had first MRI done just let my hometown hospital know that it was due and hometown hospital scheduled it. I figured hometown hospital would send results to my primary clinic in the same town. Then it hit me that the big hospital that ordered the smaller hospital to do the MRI was maybe the one that all the info was sent to. And....you know, they probably thought the hometown hospital sent the same info to my primary doctors or my GI doctors. Apparently someone is sitting on this info!!
So, I sent a message on my portal to my PA (my primary hasn't returned from maternity leave yet) and will see what she can come up with. Let her know that I wasn't worrying yet cause no one has told me I needed to. One would think that if this report on my pancreas was bad news I would have heard by now from some soul out in the big world.
Sooo, this is the way the world operates at times and that means we all have to really keep track of our tests and info. Maybe the doctors should be paying us a percentage. One can only hope.
Take care all and stay warm or dry or whatever you need with this crazy weather. meirish
Yes! There have been so many times where I thought a Dr's office or a pharmacy should've put me on their payroll!
Irish, my husband had the exact same thing, except we caught it early.
When the told me they might have to do 'exploratory surgery' (they could not believe it was from the removal of a polyp in his colon NINE DAYS EARLIER) I got dizzy and they put ME on a stretcher until I recovered.
This was about 6 pm. At 12 am they realized it was his colon and used a medication which shuts down the bleed. It worked. He had to have two units of blood. And recovered quite well. He was only 45 years old.
Scary to realize how bad it could have been without going through ER at Harvard's Brigham hospital in Boston. This is we live near two medical centers, Duke, and The University of North Carolina, Irish. The best makes a big difference.
Elaine
Well, I sent a message to my PA and she got back to me. She had gotten the results of the MRI just that day. Everything is ok with my pancreas. The areas are still there and I have to go in next Feb and have the same thing done again. My insurance company will love that. I have cost them a fortune over these past 20 years but it has been a very good policy for me.
Come to find out my oldest son who also has very severe Hashimotos of thyroid and is on cellcept had a couple small lesions on his pancreas a few years ago and had to have a scan and then a scan of some sort months down the road. They said it was something not worrisome and he did not have to go back. He never remembers or even thinks to ask for the details so I will never know for sure what his was.
We had 3 boys...hubby had celiac sprue and a type of colitis that went with the sprue. Each of the three boys have autoimmune diseases. One son has celiac disease and his son got it when he was 3 years old. Both are on gluten free diets and do well. One son has Hashimotos plus Fibromyalgia, chronic fatigue syndrome and something weird with B cells that have to be checked every 6 months as they feel it can turn into leukemia...so says the oncologist who sorted all this out. This was diagnosed at Mayo Clinic. They thought he had leukemia and then lymphoma so he was glad to settle with these diagnoses. Very odd to have chronic fatigue and fibromyalgia in men as that is usually a woman's disease.
It is hard to have this happen to our kids as many of you probably know. Makes a person feel so guilty but there is no way to prevent it. Have to make sure the family is well educated on the autoimmune diseases that are out there and get to doctors for any symptoms. Take care all. meirish