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Addison's Disease Message Board


Addison's Disease Board Index


I went into the hospital on the 9th for the metryopone test and I ended up in the hospital for 11 days. I ended up being ambulanced to the Mayo Clinic on day 8 and was diagnosed with POTS 3 days later. I guess only .185% of the US Population get it and I am now going to be a Mayo Case Study! I was told that this often get mistakening diagnoised as Addison's. The prednisone seemed to be helping because the medication they give me for this is in the same family.

So, something for all of you to look into as well. I was lucky. I was told that I was at 1 of 2 places in the world that would have been able to diagnose it. My dr is the dr that put the condition together! So at least I am in good hands. I just wish that I had more info.

Here is what happened this past week and a half...

Wed, the 9th I walked into our local hospital to have that final test for Addison's. I checked myself in at 7 p.m. At that time I had a splitting headache, but that was it. At midnight, the nurse came in bringing me 10 almond size pills that I had to swallow in order for them to draw blood at 8 am. At pill 4 it was getting nearly impossible to swallow anymore, but I continued forth anyway...NOT A GOOD DECISION. 45 minutes after downing all 10 pills I started to feel really sick. I called in the nurse to tell her that I wasn't going to make it. 3 minutes later I didn't even make it to the bathroom to throw up. I made it as far as the trash can, where I sat and threw up and threw up and threw up...It honestly felt as if someone poured gasoline down my throat and lit it on fire. I just about passed out on the floor of the room, but the nurse was FINALLY nice enough to get me back to my bed. This is where EVERYTHING starts to go BAD.

I was finally able to get some sleep but when I woke up in the morning my headache was at a 10, I was nauseated, had incredible stomache pains, and was awfully dizzy. So they started treating and medicating. It turned out that I ended up having an inflamed pancreas and something else.

With my headache being so bad, they decided to do ANOTHER nerve block at the base of my head. TALK ABOUT PAINFUL!!!!! 11 days later it STILL hurts - and BTW didn't do a whole lot of good. Here is one bad thing. They also gave me some medications to help with the pain, which ended up slowing my respirations down to 3 per minute!! My DH tells me the crash team was called in and they watched over me for quite a while. I had an AWESOME male nurse, who later told me how close I was to being 6 feet under. Unfortunately, this happened 2 more times while there. I couldn't get out of bed, sit up , ANYTHING! At about day 7, I was finally able to get out of bed to take about 6 steps to the bathroom, but ONLY with 3 people hanging onto me. I just wasn't getting any better and my dizzy spells were getting WAY WORSE.

Oh, the good news at this point, the medication that I puked up did get into my system and the blood draw was good - NO ADDISON'S!!! But then...what was it? They started REALLY monitoring my blood pressure and my heartrate. So they would take them both lying, sitting and then standing. It turns out that my blood pressure was all over the place everytime they did this but the major thing was that when I went from sitting to standing, my heartrate goes from 90 to about 130!!!! And no one knew why.

So, here we are at Tues. night a week later still feeling awful. My male nurse pulled my DH aside and told him to get me out of there because the doctors had no clue and they were guessing at that point. The next morning, they performed the same tests with the same results. At that point my DH asked at what point do we look to go to somewhere else for answers. Right then and there the Dr. said, "I think we are at that point and I will write the papers right now to trasfer you to Mayo Clinic." My male nurse was there in FULL support and said that he was going to get everything ready and that I needed to be taken by ambulance - it was an hour and a half ride. So they got everything ready and the ambulance guys showed up to get me. They gave me a little pain mediation for my head for the ride.

Well...it was an interesting ride. I fell asleep right away and the next I knew I was getting a sternum rub from the ambulance guy because i was not responding AT ALL. BTW - it still hurts. Funny thing though, as much as it hurt, all I could muster was to open one eye. He said, "I need the other one open too!" So I tried, but then I had to shut them both again. Then I got yelled at. Needless to say, I tried REAL HARD to stay awake to answer his questions.

We finally made it to Mayo, got checked in and they got me up to my room. I told them that I had to go to the bathroom. The bathroom was right at the entrance to the room so the ambulance guys stopped the bed there, dropped it and got me to sit up. Then they they flanked me, asked me if I was ready to get up, I said yes. So I went to stand...I passed out. All I remember then was hearing...."Lisa...Lisa...Can you hear me? That was a valiant effort, but I think it is the bed pan for you!” LOL! So, I get in bed and meet my young buck doc, who looked liked he was 18, with braces all decked out in Harvard blues. (He ended up being great BTW). So Wed was a day of talking with TONS of doctors.

Thursday I spent all day doing tests. I had more Addison’s tests because my adrenal function was still abnormal, I had an MRI, an autonomic response test and a tilt table test, plus TONS of blood work. Talk about a day from hell. The autonomic response test was unbelievably PAINFUL! They ran electric current along my left side from hand to toe for more than 3 minutes straight. When they turned it on I swore someone had set my skin on fire. Even the testing crew came running because I was screaming. She was yelling, “It’s wet! It’s wet! You only have to last for 3 more minutes!”

Then came the tilt table test. They strapped me to a table and stood me upright, where they constantly were monitoring my blood pressure, heart rate, and a bunch of other stuff. I had to stand there for 10 minutes or pass out first. Nice, eh? As they started the test, doctors started walking in. And as the test progressed more came and went. There I stood in total agony and there they were whispering to each other, exchanging papers, checking out the computer screens. As soon as they stood me up my heart started to race and I got majorly dizzy. At about 8 minutes I thought I was going to make it. I felt like I had my breathing under control and I was actually standing okay without the dizzies. Then the nurse said “Two minutes left.” Ten seconds later, my legs fell from underneath me, my heart started to beat uncontrollably (I think it was in the high 130s at this point) and I was just about to lose it when they tilted me back. I just broke down at that point and the nurse was there trying to reassure me that I was going to be okay and they had gotten all the information they needed.

So Friday I waited for the docs. They came in and told me that I have a VERY RARE condition called Postural Orthostatic Tachycardia Syndrome (POTS). .185% of the people get this! I guess I have to say that I was very lucky because Mayo and my doctor would have been one of only 2 places in the world that would have figured this out. My dr. is the dr. that put this condition together! So at least I know I am in good hands. I was told how rare I was and that they were going to be doing Mayo Case Study. I feel so lucky! The young doc also told me to watch out because once all the neuro geeks there hear about me they are ALL going to want to get their hands on me. LOL.

Anyway...This all basically means that my body cannot handle any change of position well. That even means something as small as turning can send my body into a nasty spell. My blood pressure is fluctuating, but the major problem is the heart rate. Going from lying to sitting can send my heart up to the 130-140s easily. My body then produces too much adrenaline, which then causes a drop in blood pressure, which then could cause me to pass out. There are TONS of underlying issues with all of this. Unfortunately, there is no cure, no real treatment plan. It is all a hit or miss. I am supposed to eat as much salt as I can get my hands on. Drink at least a liter of Gatorade a day. I am supposed to stay away from things that are going to be next to impossible for me to be away from (i.e., sugar and carbs) One thing I have read that can help is getting a pacemaker! Imagine that at 32!

At this point, I cannot walk more than 40 feet, if even that and I cannot stand for more then 1 minute before I feel like I am going to collapse. I cannot turn my head without getting EXTREMELY dizzy and my headache is KILLING me. I honestly am not sure how I am going to live like this. If it doesn’t get any better then it is right now, I am not sure what I am going to do. This is NOT living at this point. I can barely make it to the bathroom and to bed by myself. I can’t do ANYTHING with the boys. Even having them sit with me is hard because I am SO UNCOMFORTABLE. I feel so guilty that I can’t do anything for them. I can’t even be around them playing because the loud noise is too much for my head! And get this...I am supposed to be back to work on Thurs! At least the dr had orders that I could fluctuate my hours for the 1st week to see how things were.

The medication they have me on is NOT working AT ALL at this point. So I am already getting VERY CONCERNED. Tomorrow, I have to go and talk with physical therapy to try to get into a overall conditioning program since my whole body has been totally devastated at this point. I lost 11 lbs. this past week and a half. My muscles and everything are totally gone from sitting in that damn hospital bed.

I hope you all find out some answers too!
~Lisa
tcnj_mom -

I am not exactly sure what the next step is. Neither do they. They have put me on some meds they are hoping will help, which haven't yet. It is all a total hit or miss. I have been told it is all about learning to live with it - nice, eh? Unfortunately, this testing stuff has REALLY made it bad. To the point of making it to the bathroom alone is hard. I need to start a physical therapy program and try to get my body to learn to function in some form without crashing on me. All I can say is, it is really hard to know the difference between a heart attack and the chest pains associated with this. I have even read that some people end oup passing out, ER teams think the patient is in cardiac trouble, which in this case in not truly true. People end up getting pacemakers put in. Which as awful as that is totally helps and basically ends this problem, just starts the pacemaker problem then. So if this doesn't get any better maybe that is an option. But I can't imagine that at 32!


sadie-mae -

When I got to Mayo, they reran the cortisol test and the cosytropin tests. Both came back low, but they feel that my adrenal function is there. Today is my last day on prednisone!!!!! I gained SO MUCH WEIGHT on that stuff - but I lost 1/2 of it in the hospital! 11 lbs gone, just like that! Now I am on beta blockers. The prednisone seemed like it was working becasue it was in the same class of medications used to treat POTS. I am just concerned that what they have me on now isn't working...I may have to request to go back on the prednisone since it was working.


All I can say is that I wish I would have gone to Mayo a LONG TIME ago! I live only 90 minutes away, but I had just had enough of doctors. I guess it was just all meant to happen, unfortunately. Now it is time to try to figure out how I am I going to live with this.

I hope all of you find some answers. Hopefully, not in the same manner I did. I would not ever suggest that metrypone test to anyone! Just don't do it! Good luck to all of you. I will still check in to see if anyone has any questions!

~Lisa
Lisa & all ~ My brother is still awaiting the results of his blood & urine test that have been sent out to the Mayo Clinic since they are the ones that run the tests for this Pheochromocytoma. Once those results get back the doctor will discuss his treatment plan. I am alomost hoping that he has this tumor so they can rid his body of it's affects. Over 98% of the time it is benign and requires surgical removal which can be done laproscopically. Otherwise the doctor has told him if he is negative they would like to put in a pacemaker because when he is lying down his pulse & B/P are completely normal & if they put him on the meds to help him stand up he could bottom out while sleeping and would need the electostimulation of a pacemaker to insure his heart doesn't stop. So that's the update.....he's on Catapress and sittiing up but still with a big headache and unable to walk without passing out. Hopefully we'll have more news on Monday.

Lisa.....I hope you are doing better and that the meds will help you out too. BTW....the doctors do not say my brother has POTS but if it is not this tumor they believe that he has some permanent damage to his Autonomic Nervous system that will require regulation of medications in order to control it for the rest of his life. I am praying that it is the tumor....I think that would be the better of the two diagnosis'. .......Goody
A further update......my brother will be going for an MRI this evening. The doctors feel that he needs to have a pacemaker before they can proceed with regulating his meds in order to get him to a sitting/standing position. The doctors have seen his worst tremors today which are convulsive in nature and his pupils are unequal but he is coherent. His B/P and pulse double to 230/190 & 180 when sitting up even on one betablocker. His pulse drops to 40 when lying down and so they cannot increase his meds safely without a pacemaker.

The doctor explained to my brother that he has a call in to a top neurosurgeon in Maryland who is known to surgically correct the damage in the autonomic sympathetic nervous system via brain surgery in severe cases like my brothers. If the tests come back negative for the Pheochromocytoma they feel that this may be the way to go and my brother will be transferred under the care of this neurosurgeon in Maryland. My family is somewhat relieved that at least something will be done to help my brother get back to a normal life. Will probably know more on Monday.......Goody :wave:
Lisa ~ Haven't heard from you in a while....I hope that means that you have been busy getting back on your two feet and that things are going better for you. :angel:

Goody got some good news...my brother is finally able to walk after being on the meds for 48 hours. However, the doctor will be in to speak with him sometime today about having a pacemaker inserted within the next few days. Apparently he is on Catapress, a betablocker, as well as Lobiferol, and anti-seizure to control the tremors and they seem to be doing well in terms of getting him to ambulate without passing out. However, his pulse has gone down to the 20's while sleeping so that's why he'll need the pacemaker. The doctors seem to think that he can stay on the lower doses of the meds but the pacemaker will also allow for adjustments in the future if need be.

So...I guess that's pretty good news. :D Lisa, please post here with an update...for you have been in Goody's thoughts & prayers.....Goody :angel:
Okay, Lisa.....Goody is getting a little worried here. See you haven't been around in over 5 days. Last post by you speaks of looking for pain management. Just wanted to let you know that Goody is thinking about you and hoping all is well. Besides, it's getting pretty lonely on this thread ;)

Yesterday my brother had the pacemaker put in. Prior to having it put in he confided in me that he hadn't slept in over 4 nights because each time he drifted off he would wake up startled by the feeling of his heart almost stopping (apparently his pulse was down in the 20's with the meds) Thank goodness the pacemaker is now in, however, he developed severe chest pain and they ran an emergency echo and Chest X-ray to check for a lung puncture or fluid on the heart that could be a complication following the insertiion of a pacemaker. Just got a call from my SIL that everything's okay and they plan on discharging him home sometime tomorrow. They gave him a pain med that seems to have worked since he is now comfortably sleeping, thank God :angel: So now he is equipped to regulate the meds without it putting him at risk for bradycardia (low heartrate) Prior to the pacemaker he said the meds were definitely helping but once he got back to usual activities they may have to be adjusted.

Heartland ~ you expressed concern on my other thread that I may have concern that my daughter's problem may have something to do with my brother's. I don't think that is the case but I do worry that she may have an arrhythmia that often goes undetected in teens and kids until they are playing some type of sport and suddenly collapse, often fatally. I believe now they have defibrillators at most schools for that purpose because of this becoming a problem and if they were available some of these kids could have been saved. And so next week the EKG, Echo, and 24 hour test should tell us more. I did ask K. if she was drinking those super caffeinated sports drinks because too much caffeine could do this and she asssurred me no and that this is happening everyday a few times a day. So I don't want to ignore it. Most likely is normal....both my girls were worked up a few years ago because my dad had a mitral valve replacement & it is hereditary and being that K. was fainting they wanted to see her every few years and we got a clean bill of health at age 14. So....we'll recheck things just to be on the safe side. Thanks for your prayers & friendship. You are one of the very rare friends in this world that I truly cherish :angel: Hugs.....Goody :wave:
Hey Goody -

I am still alive - I have just had a long week. I had a followup appointment at Mayo on Monday, where I feel that I really didn't too many more answers. Basically they told me that yes, all of my symptoms (chest pain, pressure in my head, lightheadedness, diiziness, tremors, coldness, nausea, etc.) are all from POTS. He said that it definitely tells me that is what it is. He said though that until I was able to get back to some basic level of health, that these symptoms would continue as they are. It is funny that in your last post you mentioned that your brother felt like his heart was stopping. I just mentioned that to my doc too. I said that when I am asleep, I wake myself up because I feel like I have stopped breathing and it scares the death out of me. He asked my husband if he ever has seen me stop breathing, he said no, but he also hasn't been awake or there when I have felt this happen. I am concerned that it too may be from my BP and heartrate being too low. My blood pressure has been aroun 92/61 (which is definitely low for me) and my heartrate (when walking) is in the low 50s, so I can't imagine what it is when I am actually asleep. I know that my husband woek me up on the way to Mayo, I was napping, because he couldn't see my chest raising and lowering and he couldn't find a pulse.

Somehow I am supposed to do physical activity and "work" through the chest pain and the head pressure. I walked to the pharmacy and back at Target the other day and I SWEAR that I was having a heart attack. I know I wasn't but how I am supposed to handle going to physical therapy? I tlkaed with them, they don't know what to do and are afraid to have me there because something bad might happen. I have to talk with them tomorrow to discuss a "plan of attack" My doc wants me to get a treadmill and walk at least 5 minutes a day on it. Which at this point is WAY TOO much at a time. But he said that I need that to not lose any more of the muscle that I do have.

The doc says that he feels that the beta blockers are working. Which I do think that they are in some fashion. When I get up, the dizziness is not there instantly. However, after 2 minutes of standing, the chest pain and head pressure start, then the lightheadedness, then the dizzies and then the extreme nausea. Then I start to feel real faint. They did an e test on Monday, which I am waiting for the results of. They think that I am producing too much adrenaline. I am not sure if they are going to add meds depending on what those results are or not. But the doc is sure that is what is happening.

He also has me now wearing waist compression high panty hose 20-30 compression rate. He is trying to keep the blood in my chest and head versus my legs and feet. Also, I need to start on the pedialyte (not Gatorade) and eatting TONS more salt, which is very though for me since I do not care for the stuff.

Other than that, he basically told me that this is going to be a long battle, but he expects things to get better. I am just afraid that if they don't he won't admit it, and it will be to something I am not doing right. I hate living like this already.

Today I went to Walmart just to buy diapers for my son and I was so ill when I left there it was awful. I just sat in my car because I couldn't stand to start driving.

They are basically telling me at this point, this is what you have and you are just going to have to learn to live with it, and do it safely. Then having Addison's on top of all this is not good either. Also, for the RSD, I talked with my chiropractor today about doing trigger point injections for my shoulder/neck. Every 3 days he thinks they should be done. I talked about this with my internal med doc last week and he said, just let me know when. Also during this time I also hope to do the Lidocaine infusion as well. Hopefully between the 2 I will get some relief and then the chiro can get in there and do some work to loosen the muscles that need some relaxation.

Tomorrow I am heading to my ortho to have her take a look at my arm. It will have been a full year now since my surgery and it still is awful. So it will be interesting to see what she has to say, especially about the Lidocaine infusion. My mayo doc also thinks that I should go back and see a rehab doc there since he works on a lot of RSD cases. My work comp didn't take his diagnosis before, so I can't imagine that they would send me back. He said that I have Thoracic Outlet Syndrome also. Which they tests did show. I found out on Monday that I have it in BOTH arms too! Great, eh?

I should be an interesting next few weeks. Hopefully I will find some relief and get some more answers about all this. I still feel awully lost and that none of the docs really know what to do about it all. My Mayo doc says that he is more worried about me mentally than physically, imagine that? I do feel like I am going to crazy at some point, since getting no real answers is not the greatest feeling.

Well, i hope your brother starts to feel better. As afraid as I would be to have that done, I wish someone would at least maybe say that is an option versus having to live with all this crap. I can only take this for so long. Do is he on any of the meds he was on before the pacemaker? Are they thinking he will get rid of all the meds? Did they say what his chances of being back to normal are with that in? You will have to keep me updated on how his symptoms are doing.

I hope life gets better for him. This crap really sucks. It is also taking a toll on my family, as I am sure it has on yours. My 6 and 2 year olds can't really deal with this anymore.

Keep in touch. I will let you know if my ortho has anything interesting to say, or if I hear back from Mayo about my test results.

Have a great night - tell your brother to stay strong!

~Lisa
[QUOTE=mngirl]

I should be an interesting next few weeks. Hopefully I will find some relief and get some more answers about all this. I still feel awully lost and that none of the docs really know what to do about it all. My Mayo doc says that he is more worried about me mentally than physically, imagine that? I do feel like I am going to crazy at some point, since getting no real answers is not the greatest feeling.

Well, i hope your brother starts to feel better. As afraid as I would be to have that done, I wish someone would at least maybe say that is an option versus having to live with all this crap. I can only take this for so long. Do is he on any of the meds he was on before the pacemaker? Are they thinking he will get rid of all the meds? Did they say what his chances of being back to normal are with that in? You will have to keep me updated on how his symptoms are doing.

I hope life gets better for him. This crap really sucks. It is also taking a toll on my family, as I am sure it has on yours. My 6 and 2 year olds can't really deal with this anymore.

Keep in touch. I will let you know if my ortho has anything interesting to say, or if I hear back from Mayo about my test results.

Have a great night - tell your brother to stay strong!

~Lisa[/QUOTE]

Thanks, Lisa, for your update. Geeeez, I really wish there was something I could do for you. Doesn't seem fair that you have to live this way. The more you tell me about your situation the more it sounds like my brothers :eek:

Prior to all this my brother was on lopressor and then switched to Topranol XR. Then things got worse to the point of his hospitalization.....the tremors were uncontrollable and the headache & inablility to walk without passing out. The started him on the Catapress (betablocker) & Lobiferol (antiseizure/for tremors) prior to the pacemaker. Now that the pacemaker is in place they can safely adjust the meds wirhout his pulse decreasing to dangerous levels while sleeping. Sounds like by what you describe in your post you may be going through the same thing.

Lisa, my brother has been told that he will pretty much be on these meds for the rest of his life. Seems the best that the docs can explain is that somewhere in his nervous system there is falulty wiring that causes this. He just seem relieved that they have found some meds to get him back to somewhat a normal life. I guess my family is use to these sort of things......somehow God has equipped us with extra serenity powers needed to have the courage to accept the things we just can't change and to make the best of it. But, Lisa, that doesn't mean sitting back and knowing that something can be done to make your life better...in your case I say do not accept that you physically have to live like this....I think your doctor should definitely be looking into ways of getting you to function better & I say if he remains closeminded to this then go find another doctor. My brother's condition was BAD.....unable to walk at all and he is convinced that this weekend he will be out shopping for his son's Communion outfit!!!!

You and your family are in my prayers. I will continue to check in here and offer you support and let you know of my brother's progress. I hope to hear some good news from you soon.....Goody :wave:
[QUOTE=goody2shuz]I guess my family is use to these sort of things......somehow God has equipped us with extra serenity powers needed to have the courage to accept the things we just can't change and to make the best of it.[/QUOTE]You certainly have loads of serenity, my friend. :angel: If having serenity comes the problems that you accept so easily, I should count my blessings that I have poorly-developed serenity.

With the pacemaker in and his condition stabilizing, does your brother think he won't have to go to the specialist in Maryland?
[QUOTE=heartlandguy]You certainly have loads of serenity, my friend. :angel: If having serenity comes the problems that you accept so easily, I should count my blessings that I have poorly-developed serenity.

With the pacemaker in and his condition stabilizing, does your brother think he won't have to go to the specialist in Maryland?[/QUOTE]

Good morning, Heartland :wave: You are such a dear friend to offer me your support & praise each step of the way. Thanks for that ;)

It looks as if the specialist in Maryland was a last resort. Open Brain Surgery usually is. And so, since the meds seem to be doing their job that's the form of treatment. The same with my back...surgery will always be a last resort because even after having it there are no guarantees that anything will be any better and possibly even end up worse than beforehand. So I guess time will tell.

Yes...there is alot of serenity and the meds I am on make it even feel more apparent :D Thanks for your friendship.....Goody :wave:
An update from Goody.....my brother was discharged home on Thursday when the tests came back okay after having the pacemaker put in but his having severe chest pain postoperatively. He didn't sleep all Thursday night and Friday it only worstened....Vicoden and torinol wouldn't even help. And so my SIL got in touch with the doctor. He was readmitted yesterday with pericarditis (an infection of the lining of the heart :eek: ) which is extremely painful and they are treating it with antibiotics and steroids. He is also on benadryl for an allergic reaction he developed to the adhesive tape used for the cardiac monitoring at the hospital. I guess the plan is to keep him a few days & send him home after they control the infection. If it doesn't respond they may have to use a needle to take the fluid buildup around his heart.

So that's the latest...hope all is well with everybody else.....Goody
Hey, Lisa......I think it's great your seeing a psychologist, I can imagine how all this must be taking it's toll on you. I feel so bad that you have to feel the pain and as dibilitated as you do...but I do think it's a good idea to be monitored closely with the PT in a hospital setting just in case. Hopefully the meds will start kicking in. sounds like perhaps you may need to have increased levels and the pacemaker as well. Perhaps that is something you may wish to discuss with your doctor.

Just received a call from my SIL.....both my brother's lower lungs have collapsed.....they have him walking around and using an incentive spirometer in which he has to take deep breathes to try to reinflate those lungs. I am worried....at least there is no chest tube in, then I would be really worried but my biggest worry is him catching one of those superbugs that they can't treat that lurks these hospitals. They intend to do a repeat echo to check the amount of fluid on his heart...if it hasn't improved they will use a needle to aspirate it out tomorrow....eeeek my poor brother. My mother is beside herself & I am spending my time to try to alleviate her fears which is difficult because I share the same fears myself. Please keep him in your prayer as I already have you in mine.....Goody :angel:
Just checked my email and it seems that there is a slight improvement in the pericarditis my brother has but not what they had hoped. They are putting him on prednisone hoping that it will resolve some.....if not by next week they intend on moving one of the internal leads of the pacemaker which they feel has caused irritation to the heart....they want to leave that as a last resort. My brother is fed up with the pain and limitations this is putting on his life.

Heartland....thanks for the prayers....I can feel them all the way in Cancun.....between my brother and my back feeling good. :D There´s some overcast so I am treating myself to some cybertime while Tom is out trying to catch a sailfish :eek: I will join him next time.....he´s checking it out to see if I can take the rockiness of the boat out at sea....We´re having a great time...youngest daughter won the limbo contest last night :bouncing: Wish I could say I could do the same ;) .....Goody :wave:
[QUOTE=heartlandguy]If your brother is improving or stable now, I would hope that means your vacation will be worry free. I think you've said that you don’t care for Tom to mount his trophy catches for display in your home... so what will he do with them?[/QUOTE] You should know that Goody is always open to compromise. The deer is not debatable however since we both have a love of the water the sailfish is measured with a photo takent & may look good in our summerhome.....so it may be a good memory ewpecially if it is not the "reel" thing ;) Thank God we are not big fish eaters...that makes Tom a catch & release man


[QUOTE=heartlandguy]With 5 shutoffs installed, the pet project is a completely empty room and minus some drywall. It will start looking better soon.[/QUOTE] Yipee...Mrs. H must be jumping for joy :bouncing:

Plan on checking my email...hoping some good news regarding my brother is there....this would be day #7 on prednisone so I would hope he has some positive change.

Tom took the girls horseback riding....I´m soaking up the sun and getting ready for "happy hour". Miguel knows me well and is there for my order right at the start time :jester: K. is making friends with alot of the Mexican males :eek: She´s determined to have a guy in every country ;) What´s a mother to do :cool: .....Goody :wave:

PS- Just checked my email....my brother is back in the hospital....they plan on removing one of the leads of the pacemaker that is irritating his heart to a different location I believe tomorrow. Will keep you posted....Goody
[QUOTE=goody2shuz]Just checked my email....my brother is back in the hospital....they plan on removing one of the leads of the pacemaker that is irritating his heart to a different location I believe tomorrow. Will keep you posted.[/QUOTE]I'm assuming this is less serious than when they installed the pacemaker... right? Is this process considered something major or is it fine-tuning as he improves? :confused:

[quote]Mrs. H must be jumping for joy[/quote]Life has been very pleasant the last few days... :p

[quote]K. is making friends with alot of the Mexican males :eek: She´s determined to have a guy in every country ;) What´s a mother to do :cool:[/quote]I'd expect nothing less from the daughter of an "Ivory Girl". :D Be glad the younger daughter isn't doing the same thing and making you ask for doubles during happy hour. :jester: Maybe "Home, Sweet Home" rings a bell? :rolleyes: Sip slowly....................
[QUOTE=heartlandguy]I'm assuming this is less serious than when they installed the pacemaker... right? Is this process considered something major or is it fine-tuning as he improves? :confused:[/QUOTE] Pretty much a fine tuning....they feel they punctured the lining of his heart with the insertion of the lead and that is why it must be moved. He goes in midday tomorrow....just wish he would feel better is all.



[QUOTE=heartlandguy]I'd expect nothing less from the daughter of an "Ivory Girl". :D Be glad the younger daughter isn't doing the same thing and making you ask for doubles during happy hour. :jester: Maybe "Home, Sweet Home" rings a bell? :rolleyes: Sip slowly....................[/QUOTE] Tom & joined in on a "How to make a cocktail class".....I drank 5 samples and almost sank to the bottom of the pool :eek: Was great fun....K. & her sister are the activity director´s assistants....they should be getting paid but the workers here only make $100 a week so they are donating their services ;) ( the workers are cute and that is benefit enough ;) ) Meeting alot of northeasterners and Canadians.....and Tom is saying next time we must come for a month.....it is nice :D :D But Goody does miss home....aka Dorothy...."there´s no place like home"

Will know more about my brother on Thursday......Goody :wave:
Hey Heartland :wave: I appreciate your asking for an update on my brother. Of course he is the first person I called when I got home (besides my mom of course) He is doing okay but did sound out of breath on the phone. He says that he feels a tremendous amount of pressure in his chest upon standing & is trying to get himself off the morphine for pain. He expressed his depressed state of having to be incapacitated for over a month now and I told him that I certainly understood that more than he thought since I have been going through something similar and told him that things would get better eventually and that for now he had to focus on keeping the stress levels down and working with the doctors in adjusting the meds in order to get him to a good quality of living. He's alot like his sister in terms of having difficulty being dependent on others and wanting to be active in life.....even more than me. So you can only imagine how difficult this must be for him. He's the one who plans on putting on that extension. He wants it done yesterday.

My mom answered the phone crying...she said that it was a really scarey week, at the communion she said she was afraid he wouldn't make it through the week the way he looked & then he came down with a raging fever.....my SIL avoided telling me the entire truth so as not to ruin my vacation but my mom said that the day before my return he took a turn for the better once they resituated the intermal lead of the pacemaker on his heart. So......for now things look okay.....I only hope he continues to improve.

Thanks for your continued prayers and concern. As usual you're a terrific friend who continues to hold my hand through the dark moments....thanks for that.....Goody
I am so sorry to hear that you girls are having such a bad time of things this week. Please know that I continue to hold you in my thoughts & prayers.

Lisa ~ Seems that only a week ago things were going so great for you. Perhaps it's only a matter of them adjusting the meds a little bit...it must be so frustrating feeling almost back to normal and then WHAM almost landing on your face while walking. Ireally feel for you and hope that things get better again for you. How are you feeling since the cortisol injection??? I wouldn't worry about going on the antidepressants. sometimes when you have to deal with a chronic condition and it's affect on your life you really need the antidepressants to help you through. I was on Wellbutrin years ago for a chronic back problem and it helped....you won't be on it forever but it'll help you deal mentally and emotionally with the limitations and changes that your physical limitations are putting on you. And it's a good idea to wait a little bit until you adjust to the other meds.

Jen ~ Sorry to hear about your setback as well. I know this all must be so scarey for you and I hope that soon things will get better. I think your GYN is right about holding off on a second baby for now....with the meds you are on and the physical stresses your body is already enduring it wouldn't be in your best interest to put the added physical changes your body would incur with a pregnancy. The time will come for baby #2 and you will know when that time is best for both you and your baby. For now you just focus on the mommy being healthy.

Thanks for asking about my brother. He continues to do well although he states that he does not feel normal. The meds allow him to function and unfortunately stress seems to worsten things with this type of condition which you girls probably have noticed. And in life it is almost impossible to remove all stress as much as we try to. ;) He still experiences the chest pressure, headaches, and tremors but the meds seem to keep it under control and tolerable. He just told me about how thye check his pacemaker every few weeks over the phone. He places something on his wrist & connects it to the phone and a computer reads the information to determine whether the settings are within range. It's amazing how things are done :D

Well.....I am hoping to hear some good news from you two next time you post. Meanwhile know that you both are in my prayers....Goody :wave:
Jen & Lisa ~ It's been rather quiet here, just thought I would check in and also give you a little update.

Jen ~ I hope that the meds they started yo on for MS are continuing to give you some relief. Please give us an update so we know how you are doing.

Lisa ~ You sounded quite miserable last time you posted. How is your BP doing without the evening Naldalol??? I was hoping that somehow you would adjust and it would improve things.

Well Goody has an update as well....my brother's chest pain has returned and his doctor thinks that he may be rejecting the pacemaker and starting with an infection again. He is back on the prednisone and will see the surgeon sometime this week/early next week. I just found out that his diagnosis is Autonomic Failure and very rare. He was beating around the bush when I asked him exactly what his diagnosis was and it doesn't sound good. Apparently it will be a case of juggling around meds in order to allow his blood pressure & pulse to function somewhat normally. It's difficult to even understand how this happened....but it only gets worse with stress and my brother's life is full of it. He's on a third marriage, has 6 kids, 2 ex wives and lives his life with visitation schedules I couldn't even manage. His newest wife is wonderful in terms of being supportive but it's almost as if his body is reacting to the craziness in his life. My 16 year old daughter is staying the summer with him as a mother's helper which I hope is taking some of the stress off of him. From my sister in laws reports she is of great help to them and manages the kids well allowing my brother and SIL some time to relax and go out on their own to recuperate from daily activities. I do find some comfort in knowing that my daughter is in a way reducing some of the stress.
I guess I will know more next week about what comes next.

I hope to hear some updates from everyone else as well. Please know that you are in my thoughts & prayers ~ Goody :wave:





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