Need Advice Please

JennifersHope · Nov 4, 2011

I so hope this does not come out like I am a whiner.. I am just totally at my wits end. I found out several months ago I am culturing MAC and another type of Mycobacteria. I have been doing treatment for several weeks.

Today I found out my cultures are even stronger and the counts are even higher for the bacteria. They have changed my antibiotics. I an on several IV antibiotics now and one pill
The antibiotics make me feel so sick and dizzy. I have to keep my eyes closed during some of the infusions.

Problems I need help with is my skin is literally blistered and burned from the Sorbaview dressing I have on it. It really hurts and is burning. I am going to be on these drugs for an indefinite amount of time and I need to find a solution. For those on long term IV's what do you do with your skin?

Second is, my house is totally overcome with medical supplies, I have them in my office , in my living room, in my kitchen and my fridge..... What do you guys do with all your stuff. I can't stand looking at it.. I don't want people to come in my house and see all this stuff, plus I don't want to look at it either..

Third is emotionally how do you deal with being on IVs for almost every hour that you are awake and most of while you are sleeping? I could deal with it if it was shorter term but to say deal indefinitely.. UGGGG.

I am so frustrated and overwhelmed....my lungs look worse on x ray then they did before I started treatment, and they said I sound like I have rice crispies in my lungs... all new stuff for me.. and I don't know what to do..

JennifersHope · Nov 4, 2011

I so hope this does not come out like I am a whiner.. I am just totally at my wits end. I found out several months ago I am culturing MAC and another type of Mycobacteria. I have been doing treatment for several weeks.

Today I found out my cultures are even stronger and the counts are even higher for the bacteria. They have changed my antibiotics. I an on several IV antibiotics now and one pill
The antibiotics make me feel so sick and dizzy. I have to keep my eyes closed during some of the infusions.

Problems I need help with is my skin is literally blistered and burned from the Sorbaview dressing I have on it. It really hurts and is burning. I am going to be on these drugs for an indefinite amount of time and I need to find a solution. For those on long term IV's what do you do with your skin?

Second is, my house is totally overcome with medical supplies, I have them in my office , in my living room, in my kitchen and my fridge..... What do you guys do with all your stuff. I can't stand looking at it.. I don't want people to come in my house and see all this stuff, plus I don't want to look at it either..

Third is emotionally how do you deal with being on IVs for almost every hour that you are awake and most of while you are sleeping? I could deal with it if it was shorter term but to say deal indefinitely.. UGGGG.

I am so frustrated and overwhelmed....my lungs look worse on x ray then they did before I started treatment, and they said I sound like I have rice crispies in my lungs... all new stuff for me.. and I don't know what to do..

JennifersHope · Nov 4, 2011

I so hope this does not come out like I am a whiner.. I am just totally at my wits end. I found out several months ago I am culturing MAC and another type of Mycobacteria. I have been doing treatment for several weeks.

Today I found out my cultures are even stronger and the counts are even higher for the bacteria. They have changed my antibiotics. I an on several IV antibiotics now and one pill
The antibiotics make me feel so sick and dizzy. I have to keep my eyes closed during some of the infusions.

Problems I need help with is my skin is literally blistered and burned from the Sorbaview dressing I have on it. It really hurts and is burning. I am going to be on these drugs for an indefinite amount of time and I need to find a solution. For those on long term IV's what do you do with your skin?

Second is, my house is totally overcome with medical supplies, I have them in my office , in my living room, in my kitchen and my fridge..... What do you guys do with all your stuff. I can't stand looking at it.. I don't want people to come in my house and see all this stuff, plus I don't want to look at it either..

Third is emotionally how do you deal with being on IVs for almost every hour that you are awake and most of while you are sleeping? I could deal with it if it was shorter term but to say deal indefinitely.. UGGGG.

I am so frustrated and overwhelmed....my lungs look worse on x ray then they did before I started treatment, and they said I sound like I have rice crispies in my lungs... all new stuff for me.. and I don't know what to do..

Jane · Nov 5, 2011

I'm sorry that you are dealing with all this Jen. We had similar issues when the boys cultured the myco. Like you, Josh had an awful time with PICC dressings and eventually got a port (love it). He did find that IV3000 worked better than sorba or tegaderm.
As for the medical supplies, we got a 3-drawer plastic storage unit on wheels. All the supplies fit nicely in or on it. We were able to wheel it out of view if need be. We also bought the boys captains beds with underneath storage. Extra supplies and equipment went there. They also make the under bed storage totes. I can't help you with the fridge space. We ended up needing an additional fridge just for meds.
I always thought it would be fin to get on one if those design shows where they organize your stuff <img src="i/expressions/face-icon-small-smile.gif" border="0">
Good luck!

Jane · Nov 5, 2011

I'm sorry that you are dealing with all this Jen. We had similar issues when the boys cultured the myco. Like you, Josh had an awful time with PICC dressings and eventually got a port (love it). He did find that IV3000 worked better than sorba or tegaderm.
As for the medical supplies, we got a 3-drawer plastic storage unit on wheels. All the supplies fit nicely in or on it. We were able to wheel it out of view if need be. We also bought the boys captains beds with underneath storage. Extra supplies and equipment went there. They also make the under bed storage totes. I can't help you with the fridge space. We ended up needing an additional fridge just for meds.
I always thought it would be fin to get on one if those design shows where they organize your stuff <img src="i/expressions/face-icon-small-smile.gif" border="0">
Good luck!

Jane · Nov 5, 2011

I'm sorry that you are dealing with all this Jen. We had similar issues when the boys cultured the myco. Like you, Josh had an awful time with PICC dressings and eventually got a port (love it). He did find that IV3000 worked better than sorba or tegaderm.
 As for the medical supplies, we got a 3-drawer plastic storage unit on wheels. All the supplies fit nicely in or on it. We were able to wheel it out of view if need be. We also bought the boys captains beds with underneath storage. Extra supplies and equipment went there. They also make the under bed storage totes. I can't help you with the fridge space. We ended up needing an additional fridge just for meds.
 I always thought it would be fin to get on one if those design shows where they organize your stuff <img src="i/expressions/face-icon-small-smile.gif" border="0">
 Good luck!

JennifersHope · Nov 5, 2011

Thanks Jane.. I am going to see if they can get the IV3000, I have a port too. I put some hydrocortisone on it last night which seems to have helped a little bit.

I being one of the worst patients ever have been over using my arm carrying heavy things and so that has exacerbated the area as well.

I have big bins to put all my stuff in, I tried to leave it out on the counter since I am constantly either flushing, infusing or doing a push but I can't stand clutter.

I am having a handy man install shelving in my office and hopefully most of the stuff will fit in there and then I can leave out just what I am going to use for the day...

I am on on one IV that has to be in the fridge, the amikacin... the rest are stable at room temp... They have added and changed a lot of meds in the past few weeks, if they add another one that needs to go in the fridge, I will use a different fridge.

I am only a few weeks into this, I am on this indefinitely for now and I am so over it already.... What type of Mycobacteria did the boys have, I have MAC and mycobacteria fortiuim (sp)

Thanks for you advice....

JennifersHope · Nov 5, 2011

Thanks Jane.. I am going to see if they can get the IV3000, I have a port too. I put some hydrocortisone on it last night which seems to have helped a little bit.

I being one of the worst patients ever have been over using my arm carrying heavy things and so that has exacerbated the area as well.

I have big bins to put all my stuff in, I tried to leave it out on the counter since I am constantly either flushing, infusing or doing a push but I can't stand clutter.

I am having a handy man install shelving in my office and hopefully most of the stuff will fit in there and then I can leave out just what I am going to use for the day...

I am on on one IV that has to be in the fridge, the amikacin... the rest are stable at room temp... They have added and changed a lot of meds in the past few weeks, if they add another one that needs to go in the fridge, I will use a different fridge.

I am only a few weeks into this, I am on this indefinitely for now and I am so over it already.... What type of Mycobacteria did the boys have, I have MAC and mycobacteria fortiuim (sp)

Thanks for you advice....

JennifersHope · Nov 5, 2011

Thanks Jane.. I am going to see if they can get the IV3000, I have a port too. I put some hydrocortisone on it last night which seems to have helped a little bit.
 
 I being one of the worst patients ever have been over using my arm carrying heavy things and so that has exacerbated the area as well.
 
 I have big bins to put all my stuff in, I tried to leave it out on the counter since I am constantly either flushing, infusing or doing a push but I can't stand clutter.
 
 I am having a handy man install shelving in my office and hopefully most of the stuff will fit in there and then I can leave out just what I am going to use for the day...
 
 I am on on one IV that has to be in the fridge, the amikacin... the rest are stable at room temp... They have added and changed a lot of meds in the past few weeks, if they add another one that needs to go in the fridge, I will use a different fridge.
 
 I am only a few weeks into this, I am on this indefinitely for now and I am so over it already.... What type of Mycobacteria did the boys have, I have MAC and mycobacteria fortiuim (sp)
 
 
 Thanks for you advice....

jessykt · Nov 5, 2011

Ugh, so sorry! Do you live alone? Can someone else do the lifting for you??

I have some large storage tubs in a closet for my stuff, but we are on very limited space (townhome) and I am stressing about overages because I hate clutter too! I should look into the under the bed totes. I have some for clothes (since I range from size 0 to 6 at any time) but hadn't thought of that for meds...good idea.

We are fortunate enough to have a "beer" fridge in the garage that has also become "Jessy's drug fridge." It's very handy.

For stuff like albuterol, hypertonic vials and small cups, also my most often used pills, I like baskets to put everything in. They hold stuff and kind of cute. I can't hide everything, though, and people understand! I hope you get through this quickly!!

jessykt · Nov 5, 2011

Ugh, so sorry! Do you live alone? Can someone else do the lifting for you??

I have some large storage tubs in a closet for my stuff, but we are on very limited space (townhome) and I am stressing about overages because I hate clutter too! I should look into the under the bed totes. I have some for clothes (since I range from size 0 to 6 at any time) but hadn't thought of that for meds...good idea.

We are fortunate enough to have a "beer" fridge in the garage that has also become "Jessy's drug fridge." It's very handy.

For stuff like albuterol, hypertonic vials and small cups, also my most often used pills, I like baskets to put everything in. They hold stuff and kind of cute. I can't hide everything, though, and people understand! I hope you get through this quickly!!

jessykt · Nov 5, 2011

Ugh, so sorry! Do you live alone? Can someone else do the lifting for you??
 
 I have some large storage tubs in a closet for my stuff, but we are on very limited space (townhome) and I am stressing about overages because I hate clutter too! I should look into the under the bed totes. I have some for clothes (since I range from size 0 to 6 at any time) but hadn't thought of that for meds...good idea.
 
 We are fortunate enough to have a "beer" fridge in the garage that has also become "Jessy's drug fridge." It's very handy.
 
 For stuff like albuterol, hypertonic vials and small cups, also my most often used pills, I like baskets to put everything in. They hold stuff and kind of cute. I can't hide everything, though, and people understand! I hope you get through this quickly!!

TonyaH · Nov 5, 2011

Hi Jen,
I am sorry you are so uncomfortable with your port dressings. Andrew has had very similar issues through the years with his picc dressings. His skin blisters and 'weeps', or leaks under his dressing and itches constantly. We have found sorbaview to work much better for him than tegaderm or iv3000. But the biggest discovery that has helped him is finding out that he cannot use alcohol or chloraprep on his skin. The only thing we use is iodine/provodone. It looks horrific with its brown color but is so much better for him. They have iodine dressing change kits, and home health can get you all the supplies you need. When we go in to have piccs placed now I always ask for iodine. Perhaps it is worth a try! Good luck!

TonyaH · Nov 5, 2011

Hi Jen,
I am sorry you are so uncomfortable with your port dressings. Andrew has had very similar issues through the years with his picc dressings. His skin blisters and 'weeps', or leaks under his dressing and itches constantly. We have found sorbaview to work much better for him than tegaderm or iv3000. But the biggest discovery that has helped him is finding out that he cannot use alcohol or chloraprep on his skin. The only thing we use is iodine/provodone. It looks horrific with its brown color but is so much better for him. They have iodine dressing change kits, and home health can get you all the supplies you need. When we go in to have piccs placed now I always ask for iodine. Perhaps it is worth a try! Good luck!

TonyaH · Nov 5, 2011

Hi Jen,
 I am sorry you are so uncomfortable with your port dressings. Andrew has had very similar issues through the years with his picc dressings. His skin blisters and 'weeps', or leaks under his dressing and itches constantly. We have found sorbaview to work much better for him than tegaderm or iv3000. But the biggest discovery that has helped him is finding out that he cannot use alcohol or chloraprep on his skin. The only thing we use is iodine/provodone. It looks horrific with its brown color but is so much better for him. They have iodine dressing change kits, and home health can get you all the supplies you need. When we go in to have piccs placed now I always ask for iodine. Perhaps it is worth a try! Good luck!

Giggles · Nov 5, 2011

I use to get the redness, purpleness and blisters with Tagaderm and now they use IV3000 and I get a very mild skin reaction. I like the idea of the rolling storage bin thing for meds. They also make a cardboard type kind with 3 deep drawers and you can get pretty patterns to match your decor. I am sure Walmart has it. Being on IV's are sooooo hard. The high maintenance of it all and it makes you feel crappier than you already feel.... Just hang in there! If you are dizzy from the meds try asking the doc for Meclizine, I think that is what it is called ? But it is for motion sickness and take one of those before each dose. If you are nauseous, I use Zofran that works well..... Feel better soon!

Giggles · Nov 5, 2011

I use to get the redness, purpleness and blisters with Tagaderm and now they use IV3000 and I get a very mild skin reaction. I like the idea of the rolling storage bin thing for meds. They also make a cardboard type kind with 3 deep drawers and you can get pretty patterns to match your decor. I am sure Walmart has it. Being on IV's are sooooo hard. The high maintenance of it all and it makes you feel crappier than you already feel.... Just hang in there! If you are dizzy from the meds try asking the doc for Meclizine, I think that is what it is called ? But it is for motion sickness and take one of those before each dose. If you are nauseous, I use Zofran that works well..... Feel better soon!

Giggles · Nov 5, 2011

I use to get the redness, purpleness and blisters with Tagaderm and now they use IV3000 and I get a very mild skin reaction. I like the idea of the rolling storage bin thing for meds. They also make a cardboard type kind with 3 deep drawers and you can get pretty patterns to match your decor. I am sure Walmart has it. Being on IV's are sooooo hard. The high maintenance of it all and it makes you feel crappier than you already feel.... Just hang in there! If you are dizzy from the meds try asking the doc for Meclizine, I think that is what it is called ? But it is for motion sickness and take one of those before each dose. If you are nauseous, I use Zofran that works well..... Feel better soon!

JennifersHope · Nov 5, 2011

Thank you so much!!!!! I am going to try the Iodine for sure. I also put some hydrocortisone cream over the area not covered currently which helped a lot too.

What we are going to do for my medications because I am on several IV antibiotics as well as IV fluids several times a day (lots and lots of bags, flushes and needles to draw up meds) since I am going to be on this indefinitely about a year after I stop culturing it ( currently my last culture showed an increase in growth after a month of treatments.. (UGGG)

So my sweet and loving parents are redoing my office for me and having shelves put in my large closet that will accommodate all of my meds .

My mom is here staying with me and she went out today and got my very pretty matching cloth bins and we spent the day sorting through everything. Tomorrow the handy man comes to install the stuff!!!

It is so important to me to not have my house cluttered. I am so OCD about it I can't stand stuff, I am going to leave one basket out on the counter with my days worth of meds in it. Each night I can go into the closet and get my supplies for the next day.

I live alone and I have the extra room that I use as an office... so hopefully that will help my mental state of not looking at all this crap every day.

It is the little things that help so much....

I am also going to ask about trying the IV3000.

Yesterday was just a rough day...found out bacteria is growing stronger, lungs getting crappy, and my port would not work and I had to go to the ER because they ordered a new IV antibiotic I never have been on so I had to go there to be monitored while it infused because my medicaid won't pay for me to go to the infusion center and well it was Friday afternoon and no doctor could be found.

Sometimes this can be so overwhelming.....but I have great people taking care of me and they are working with National Jewish to get me the right meds.... I have not even been there yet, (going in Feb)

Thanks for your tips.... I appreciate it

JennifersHope · Nov 5, 2011

Thank you so much!!!!! I am going to try the Iodine for sure. I also put some hydrocortisone cream over the area not covered currently which helped a lot too.

What we are going to do for my medications because I am on several IV antibiotics as well as IV fluids several times a day (lots and lots of bags, flushes and needles to draw up meds) since I am going to be on this indefinitely about a year after I stop culturing it ( currently my last culture showed an increase in growth after a month of treatments.. (UGGG)

So my sweet and loving parents are redoing my office for me and having shelves put in my large closet that will accommodate all of my meds .

My mom is here staying with me and she went out today and got my very pretty matching cloth bins and we spent the day sorting through everything. Tomorrow the handy man comes to install the stuff!!!

It is so important to me to not have my house cluttered. I am so OCD about it I can't stand stuff, I am going to leave one basket out on the counter with my days worth of meds in it. Each night I can go into the closet and get my supplies for the next day.

I live alone and I have the extra room that I use as an office... so hopefully that will help my mental state of not looking at all this crap every day.

It is the little things that help so much....

I am also going to ask about trying the IV3000.

Yesterday was just a rough day...found out bacteria is growing stronger, lungs getting crappy, and my port would not work and I had to go to the ER because they ordered a new IV antibiotic I never have been on so I had to go there to be monitored while it infused because my medicaid won't pay for me to go to the infusion center and well it was Friday afternoon and no doctor could be found.

Sometimes this can be so overwhelming.....but I have great people taking care of me and they are working with National Jewish to get me the right meds.... I have not even been there yet, (going in Feb)

Thanks for your tips.... I appreciate it

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