I am a strong person but....

[JustDucky]

Hi all...I know what you mean Emily, sometimes I just want to throw my arms up and say just admit me, I think I would have done that if I had 3 or 4 different IV's going in me, I would never sleep then!
Rebekah, I was just diagnosed at 33, now am 34 but when I look back, I believe that I had problems with breathing even in my childhood years and chalked it up to just being a slow runner or just having allergies, which explains why I hated track. As I got older, my symptoms got worse and the docs finally officially diagnosed me with "asthma" and started to treat it. I also got pneumonia at least once a year, this was in my twenties. When I hit 30, my breathing problems changed, I knew that my shortness of breath wasn't run of the milll asthma, but the docs kept loading me with steroids despite my pleas that this wasn't asthma, it felt differnent. I was finally diagnosed with neuromuscular disease, no real name to it but I came home on O2 and was on that for a few years. Meanwhile, I still got all of the respiratory infections, I think I was on antibiotics at least once a month. I did have to go on BiPAP, over a few years, the use went to 24/7 and my quality of life really sucked, I didn't tolerate coming off, my diaphragm was non functional at that time so I was vented. Fast forward to now, I began to get wierd infections of my lungs, uncommon bugs even for a person on a vent and my doc really began to suspect CF at that point. So..got my sweat test and it came back high borderline with more chloride than sodium in my sweat, it was repeated and the same result came back. My pancreas doesn't function like it should, doesn't produce enough of its own enzymes and so now I wait for the extensive panel to come back. Also, I have always had extremely thick sputum, even prior to the vent. Because of my symptoms and such, I was diagnosed with CF, atypical. I am also B. cepacia positive, very resistant strain. So, that's me in a nut shell.
Hugs to all of my friends here who have and continue to support me...still tired, but hanging in there! Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

Hi all...I know what you mean Emily, sometimes I just want to throw my arms up and say just admit me, I think I would have done that if I had 3 or 4 different IV's going in me, I would never sleep then!
Rebekah, I was just diagnosed at 33, now am 34 but when I look back, I believe that I had problems with breathing even in my childhood years and chalked it up to just being a slow runner or just having allergies, which explains why I hated track. As I got older, my symptoms got worse and the docs finally officially diagnosed me with "asthma" and started to treat it. I also got pneumonia at least once a year, this was in my twenties. When I hit 30, my breathing problems changed, I knew that my shortness of breath wasn't run of the milll asthma, but the docs kept loading me with steroids despite my pleas that this wasn't asthma, it felt differnent. I was finally diagnosed with neuromuscular disease, no real name to it but I came home on O2 and was on that for a few years. Meanwhile, I still got all of the respiratory infections, I think I was on antibiotics at least once a month. I did have to go on BiPAP, over a few years, the use went to 24/7 and my quality of life really sucked, I didn't tolerate coming off, my diaphragm was non functional at that time so I was vented. Fast forward to now, I began to get wierd infections of my lungs, uncommon bugs even for a person on a vent and my doc really began to suspect CF at that point. So..got my sweat test and it came back high borderline with more chloride than sodium in my sweat, it was repeated and the same result came back. My pancreas doesn't function like it should, doesn't produce enough of its own enzymes and so now I wait for the extensive panel to come back. Also, I have always had extremely thick sputum, even prior to the vent. Because of my symptoms and such, I was diagnosed with CF, atypical. I am also B. cepacia positive, very resistant strain. So, that's me in a nut shell.
Hugs to all of my friends here who have and continue to support me...still tired, but hanging in there! Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JennifersHope]

Hi Jenn,

I read your post and wanted to respond to you....

I know how tiring it is to do home IVS... The schedule is so intense sometimes you can't hardly rest.. You are always so positive and reassuring to others. It is good that you share your feelings all of them, positive, negative, or indifferent..... That is what we are here for. To support each other.

You have a lot on your plate and you do a great job managing it all. I am glad to see you post. I was wondering how you were.

Keep us updated.. Thinking of you.


Jennifer

 

[JennifersHope]

Hi Jenn,

I read your post and wanted to respond to you....

I know how tiring it is to do home IVS... The schedule is so intense sometimes you can't hardly rest.. You are always so positive and reassuring to others. It is good that you share your feelings all of them, positive, negative, or indifferent..... That is what we are here for. To support each other.

You have a lot on your plate and you do a great job managing it all. I am glad to see you post. I was wondering how you were.

Keep us updated.. Thinking of you.


Jennifer

 

[EnergyGal]

Hi Jenn

You have a lot to deal with as most of us do in different ways. I can draw for your writing that you have an incredible drive to stay well. I am curious as to how long you were on the vent? I am assuming you were trached right and only used the vent at night? I was on a ventilator trached for the second transplant so I know what you sort of went through. How old are your children? That is wonderful that you had children. Can you exercise some? Tell us more. I sure hope we can have a members stories section so this will all give us more knowlege about one another.
Take Care of Yourself and get your needed rest
Risa

 

[EnergyGal]

Hi Jenn

You have a lot to deal with as most of us do in different ways. I can draw for your writing that you have an incredible drive to stay well. I am curious as to how long you were on the vent? I am assuming you were trached right and only used the vent at night? I was on a ventilator trached for the second transplant so I know what you sort of went through. How old are your children? That is wonderful that you had children. Can you exercise some? Tell us more. I sure hope we can have a members stories section so this will all give us more knowlege about one another.
Take Care of Yourself and get your needed rest
Risa

 

[JustDucky]

Hi Jenn, it is always good to hear from you, you have been through alot too including the home IV regimine as well as school. Whew! That is some crazy schedule, it's amazing that anyone can get anything done with our respiratory regimines alone! You are also inspiring, going through nursing school most certainly isn't a breeze, even when you are healthy so my hat does go off to you.

Risa, I have been on the vent since Nov. 2004, I do not tolerate coming off at all at this point...okay, maybe 10 minutes if I am standing straight up, gravity helps in that way. Because my diaphragm doesn't work, I require it day round. The docs tried very hard to wean me down, at least to tolerate a few hours off but no go....my O2 sats would plummet and I would just freak out because of the air hunger. It is odd to think how many people I helped wean off of vents, now I know their fears, feel them as well when that vent is turned down or the settings changed. The RT's used to change my vent setting without telling and I immediately knew that they did...and after awhile, I would ring and write (wasn't able to speak at the time) that I was uncomfortable. They would then switch the settings back to the original settings. So, the vent has become a part of my life....I call them my special lungs because they do for me what I can't do.
I am sure you definitely understand what it feels like to be trached, it is definitely no picnic that first month or so...just moving my head was so uncomfortable. I bet you felt the same way, also was very scary at first too. Wasn't used to something breathing for me much less a plastic tube in my neck. When I woke up, that is how I was, kind of freaked me out.
As for my kids, I have two, 12 and 13 Kel and Pat...they can be attitudinal, but I love them and wouldn't change it for the world. I am blessed to have them. They have adapted amazingly well to all of this, even know the vent and emergency proceedures. They truly are my world!
I have PT come to my house to help exercise my muscles, the muscles in my legs and hands and lower arms are weakened too and walking is difficult without a walker for very short distances. Most times I use the wheelchair because I don't tolerate much walking...seems I still have that problem with walking and breathing at the same time LOL! My legs also cramp right up too.

Thank you so much for your concerns, they mean alot to me! If you want me to answer anymore questions, give a holler!
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

Hi Jenn, it is always good to hear from you, you have been through alot too including the home IV regimine as well as school. Whew! That is some crazy schedule, it's amazing that anyone can get anything done with our respiratory regimines alone! You are also inspiring, going through nursing school most certainly isn't a breeze, even when you are healthy so my hat does go off to you.

Risa, I have been on the vent since Nov. 2004, I do not tolerate coming off at all at this point...okay, maybe 10 minutes if I am standing straight up, gravity helps in that way. Because my diaphragm doesn't work, I require it day round. The docs tried very hard to wean me down, at least to tolerate a few hours off but no go....my O2 sats would plummet and I would just freak out because of the air hunger. It is odd to think how many people I helped wean off of vents, now I know their fears, feel them as well when that vent is turned down or the settings changed. The RT's used to change my vent setting without telling and I immediately knew that they did...and after awhile, I would ring and write (wasn't able to speak at the time) that I was uncomfortable. They would then switch the settings back to the original settings. So, the vent has become a part of my life....I call them my special lungs because they do for me what I can't do.
I am sure you definitely understand what it feels like to be trached, it is definitely no picnic that first month or so...just moving my head was so uncomfortable. I bet you felt the same way, also was very scary at first too. Wasn't used to something breathing for me much less a plastic tube in my neck. When I woke up, that is how I was, kind of freaked me out.
As for my kids, I have two, 12 and 13 Kel and Pat...they can be attitudinal, but I love them and wouldn't change it for the world. I am blessed to have them. They have adapted amazingly well to all of this, even know the vent and emergency proceedures. They truly are my world!
I have PT come to my house to help exercise my muscles, the muscles in my legs and hands and lower arms are weakened too and walking is difficult without a walker for very short distances. Most times I use the wheelchair because I don't tolerate much walking...seems I still have that problem with walking and breathing at the same time LOL! My legs also cramp right up too.

Thank you so much for your concerns, they mean alot to me! If you want me to answer anymore questions, give a holler!
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Hi Jenn

What causes your diaphragm not to work? I was trached for about a month and then they took it out and I was able to walk. I actually had to walk trached until I came off the respirator. Then went onto T-piece. I left the hospital with no oxygen and I have been fine every since. I was scared at first but adapted to it all. I realized the more I moved the better I would breathe, that is why I asked you about exercise. You mentioned Muscular Dystrophy. Do you have ALS? Do you have a speaking value? I think it is called Pacimer? Not sure but a man who had ALS discovered it. I used this and it helped me. IS there anyway that you could have someone work with you on developing some of your tone in your diaphragm back?

Your story is quite amazing. Your courage and will to live is extraordinary. If it is ok, I would like to pray for you everyday.
God Bless You
Risa

 

[anonymous]

Hi Jenn

What causes your diaphragm not to work? I was trached for about a month and then they took it out and I was able to walk. I actually had to walk trached until I came off the respirator. Then went onto T-piece. I left the hospital with no oxygen and I have been fine every since. I was scared at first but adapted to it all. I realized the more I moved the better I would breathe, that is why I asked you about exercise. You mentioned Muscular Dystrophy. Do you have ALS? Do you have a speaking value? I think it is called Pacimer? Not sure but a man who had ALS discovered it. I used this and it helped me. IS there anyway that you could have someone work with you on developing some of your tone in your diaphragm back?

Your story is quite amazing. Your courage and will to live is extraordinary. If it is ok, I would like to pray for you everyday.
God Bless You
Risa

 

[anonymous]

When you say that you have cramps, do you mean leg cramps from a lack of exercise or do you think it is a missing the mineral magnesium? I know that a lack of magnesium can make it harder to breathe and it can cause cramping.
Just wanted to see if you can take this.
Are you able to eat foods or are you fed through a feeding tube? Hope you do not mind me asking.
love
Risa

 

[anonymous]

When you say that you have cramps, do you mean leg cramps from a lack of exercise or do you think it is a missing the mineral magnesium? I know that a lack of magnesium can make it harder to breathe and it can cause cramping.
Just wanted to see if you can take this.
Are you able to eat foods or are you fed through a feeding tube? Hope you do not mind me asking.
love
Risa

 

[anonymous]

Hi Eileen

It really works but one needs to be patient. For example the triple warmer meridian. All you do is hold the points for three minutes and you can be thinking of whatever and suddenly you feel your body take a big sigh. I also worked on my stomach points today and I do feel so much better. The book is called "Energy Medicine" by Donna Eden and it really is worth every penny. You can buy it at innersource.net or ask your local bookstore to order this.

There are techniques to clear allergens. For example, sometimes my enzymes after a while do not work as well. I clear the allergen by a few simple steps and it works. One might think it is all in your mind but I was a skeptic but it does work.

She teaches you how to energy test, which I call muslce testing. You can learn what is causing your pain or discomfort. For example, I had a bad stomach (normally my stomach is fine) So I tested foods that I suspected and nothing showed up but my enzymes did. I went off my one enzyme for a day and cleared the allergen to it and now I can take it once again.

If you are a little bit interested please buy it. Then we can discuss some of the techniques. The lung and triple warmer meridians were weak on me and keeping them balanced helped me so much. She sells the video too but the book is the best

Hugs to all
Risa

 

[anonymous]

Hi Eileen

It really works but one needs to be patient. For example the triple warmer meridian. All you do is hold the points for three minutes and you can be thinking of whatever and suddenly you feel your body take a big sigh. I also worked on my stomach points today and I do feel so much better. The book is called "Energy Medicine" by Donna Eden and it really is worth every penny. You can buy it at innersource.net or ask your local bookstore to order this.

There are techniques to clear allergens. For example, sometimes my enzymes after a while do not work as well. I clear the allergen by a few simple steps and it works. One might think it is all in your mind but I was a skeptic but it does work.

She teaches you how to energy test, which I call muslce testing. You can learn what is causing your pain or discomfort. For example, I had a bad stomach (normally my stomach is fine) So I tested foods that I suspected and nothing showed up but my enzymes did. I went off my one enzyme for a day and cleared the allergen to it and now I can take it once again.

If you are a little bit interested please buy it. Then we can discuss some of the techniques. The lung and triple warmer meridians were weak on me and keeping them balanced helped me so much. She sells the video too but the book is the best

Hugs to all
Risa

 

[JustDucky]

Hi all, don't worry about all of the questions, I really don't mind at all. My diaphragm and distal muscles are weakned by a rare form of muscular dystrophy (my neuro is still trying to quantify exactly what kind it is, I never realized there were so many muscle diseases until mine started to go and I began to do research on the types), so once the muscles are gone, they are gone. Unfortunately, my diaphragm was hit the hardest, when the docs did a fluroscopy on my diaphragm, there was almost no movement and we knew that it was a matter of time before I would need a respirator. All this before the CF diagnosis. This muscle disease doesn't usually start to present itself until your 3rd or 4th decade of life (at least the one the docs think I have). This type of dystrophy is extremely rare, the rarest of its kind I heard. But, I still do the PT and OT at home to keep the muscles that work in as good a shape as they can be.

I get the muscle cramps from my disease I presume, I just had my Mg level checked as well as my Potassium level not too long ago, actually last week when the doc did the full chem panel as well as WBC, RBC etc prior to my antibiotics. I have chronic spasm, actually take Valium to help with them as well as Baclofen. Does okay, I can tolerate the spasms for the most part, but sometimes they get out of hand. The worst place for me to have them is right on my back, or ribcage because everytime the vent breathes for me, I get the full volume and it hurts like hell (forgive the language LOL) with every breath until the spasm goes away.

I used to use a Passy-Muir valve to talk, but I got really good with the partial cuff inflation technique and after awhile, I was able to talk just as well as anyone else. On the phone, you would never know that I have a vent and a trache..I coordinate my talking with my vent. The partial cuff inflation is just that, it means that my cuff is not fully inflated when I want to speak. At night, the cuff goes all the way up so that there is no air leakage.

Today I am feeling a hair better, but still pretty tired. At least my sputum doesn't look so bad so that is a good sign for me. I just wish I would stop sweating. I soak my sheets literally, especially at night. Drives me nuts!

Risa and anyone else who would like to, of course it is okay to pray for me....I do the same for all of those who aren't well too. I will look more into that energy technique...when I was in nursing school, someone came into the class and did an energy reading on a volunteer, somone she didn't even know and she was right on the money as far as what was bothering her, as well as her illnesses, was reallly wild. My nursing instructor also believed in alternative therapies...she was our psych nurse instructor but she was very interesting to talk to.

I wish you all well, for those who are under the weather or are just having a crappy day, my heart goes out to you. Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

Hi all, don't worry about all of the questions, I really don't mind at all. My diaphragm and distal muscles are weakned by a rare form of muscular dystrophy (my neuro is still trying to quantify exactly what kind it is, I never realized there were so many muscle diseases until mine started to go and I began to do research on the types), so once the muscles are gone, they are gone. Unfortunately, my diaphragm was hit the hardest, when the docs did a fluroscopy on my diaphragm, there was almost no movement and we knew that it was a matter of time before I would need a respirator. All this before the CF diagnosis. This muscle disease doesn't usually start to present itself until your 3rd or 4th decade of life (at least the one the docs think I have). This type of dystrophy is extremely rare, the rarest of its kind I heard. But, I still do the PT and OT at home to keep the muscles that work in as good a shape as they can be.

I get the muscle cramps from my disease I presume, I just had my Mg level checked as well as my Potassium level not too long ago, actually last week when the doc did the full chem panel as well as WBC, RBC etc prior to my antibiotics. I have chronic spasm, actually take Valium to help with them as well as Baclofen. Does okay, I can tolerate the spasms for the most part, but sometimes they get out of hand. The worst place for me to have them is right on my back, or ribcage because everytime the vent breathes for me, I get the full volume and it hurts like hell (forgive the language LOL) with every breath until the spasm goes away.

I used to use a Passy-Muir valve to talk, but I got really good with the partial cuff inflation technique and after awhile, I was able to talk just as well as anyone else. On the phone, you would never know that I have a vent and a trache..I coordinate my talking with my vent. The partial cuff inflation is just that, it means that my cuff is not fully inflated when I want to speak. At night, the cuff goes all the way up so that there is no air leakage.

Today I am feeling a hair better, but still pretty tired. At least my sputum doesn't look so bad so that is a good sign for me. I just wish I would stop sweating. I soak my sheets literally, especially at night. Drives me nuts!

Risa and anyone else who would like to, of course it is okay to pray for me....I do the same for all of those who aren't well too. I will look more into that energy technique...when I was in nursing school, someone came into the class and did an energy reading on a volunteer, somone she didn't even know and she was right on the money as far as what was bothering her, as well as her illnesses, was reallly wild. My nursing instructor also believed in alternative therapies...she was our psych nurse instructor but she was very interesting to talk to.

I wish you all well, for those who are under the weather or are just having a crappy day, my heart goes out to you. Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[EnergyGal]

Hi Jenn

You are the most inspirational person I have ever known. How you are able to do all you do is quite incredible and your drive is amazing. I know what you mean about the cuff and all the words you used to describe your situation. Your CF must have been mild when you were younger. I hope there is a cure soon for your muscle disease. I found relief from healing touch therapy. When I was waiting for my second transplant a lady(nurse) did healing touch along with quantum touch. It corrected many imbalances. I use to get painful periods and it got to the point where I had NO cramps at all after a few months of twice a week sessions. I do feel that working on triple warmer meridians and the lung meridians are most helpful. The book 'energy medicine" by Donna Eden is the kind of book that you do not have to read cover to cover. It is almost like a reference guide. I love it and have been reading it everyday once again. I looked for an online message board pertaining to energy medicine and I cannot find one. I would love to talk with others who have read this book.

My husband did the lung points when I was vented after the transplant and I opened my eyes for the first time. My nurse stood at the doorway with her mouth ajar. He said she was in shock kind of expression. I told him If I am on the vent to do this for me.

I know what you mean about the sheets being soaked. Can you have someone double sheet your bed? A nurses-aid added a double layer of sheets and I was fine. I would normally sweat around the waist area. Then this eventually it stopped. I have no idea what that is from.

I was curious as to how your trache stays connected to the tube while you type. I had trouble keeping the pacimer hoooked up and everything had to be taped. They should invent better attachments. If I had better attachments it would have made it easier to move around. I am praying for you too.

Take excellent care
Risa

 

[EnergyGal]

Hi Jenn

You are the most inspirational person I have ever known. How you are able to do all you do is quite incredible and your drive is amazing. I know what you mean about the cuff and all the words you used to describe your situation. Your CF must have been mild when you were younger. I hope there is a cure soon for your muscle disease. I found relief from healing touch therapy. When I was waiting for my second transplant a lady(nurse) did healing touch along with quantum touch. It corrected many imbalances. I use to get painful periods and it got to the point where I had NO cramps at all after a few months of twice a week sessions. I do feel that working on triple warmer meridians and the lung meridians are most helpful. The book 'energy medicine" by Donna Eden is the kind of book that you do not have to read cover to cover. It is almost like a reference guide. I love it and have been reading it everyday once again. I looked for an online message board pertaining to energy medicine and I cannot find one. I would love to talk with others who have read this book.

My husband did the lung points when I was vented after the transplant and I opened my eyes for the first time. My nurse stood at the doorway with her mouth ajar. He said she was in shock kind of expression. I told him If I am on the vent to do this for me.

I know what you mean about the sheets being soaked. Can you have someone double sheet your bed? A nurses-aid added a double layer of sheets and I was fine. I would normally sweat around the waist area. Then this eventually it stopped. I have no idea what that is from.

I was curious as to how your trache stays connected to the tube while you type. I had trouble keeping the pacimer hoooked up and everything had to be taped. They should invent better attachments. If I had better attachments it would have made it easier to move around. I am praying for you too.

Take excellent care
Risa