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My Experience With Dr. Kaufman at the Open Medicine Institute

Gingergrrl

Senior Member
Messages
16,171
I wanted to give an update re: my IV saline experience now that it is the next day- and am curious if it is similar to your experience @jeff_w.

I had one liter of saline over a three hour period and feel this was a good first try as two liters might have felt like too much in one sitting (and with my current order would have taken six hours!) I also felt comfortable having the saline at the infusion center at the hospital b/c I was officially checked in for those three hours (with wrist band and allergy alert band) as a real patient in case I needed further help. It is a new center and only one other patient there besides me so the nurse was very attentive. My main complaint was that the room was freezing and they did not have any type of warmers that @Kati mentioned (but they did bring me two blankets!) which was very helpful.

Overall, I noticed that it was easier to walk after the saline without getting short of breath. I went to CVS with my husband and was able to walk around (last time at CVS, I had to use the wheelchair.) Last night, I was able to get two bowls from the upper cabinet and put food in them for me & my step-daughter and carry them to the table with no fatigue or shortness of breath and then eat. The bowls were not light but I managed them like a regular person which has to be from the saline. The two episodes of severe angina (a few weeks ago) were triggered by less than me lifting and carrying the bowls so something was different.

I still feel better today (even though my BP was 91/59 when I woke up) so it has to be the saline. I am wondering how long this will last and if I should do one liter 2-3x a week instead of 1x/wk? I feel that one liter is the right amount or I will get overloaded with fluid but that maybe the frequency should increase? I'd love to hear any thoughts on this (and also apologize for getting off track in Jeff's thread and probably should have started my own thread on IV saline!)
 
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15,786
@Gingergrrl - Regarding time, it'll probably be possible to do them a lot faster ... in 60-90 minutes per liter, with no problems. But it might help in general if your veins already have a decent amount of fluid in them from previous infusions.

Getting a port with a stable line installed into a bigger vein might also be an option, if the infusions are working very well for you. Then there's probably not going to be any issues with playing "find the vein" or blowing a small vein.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Yes, as @Ruthie24 mentioned, 3 times a week works well for her. IV saline won't "stay with you" for very long. Maybe ask if you can bring your own heating pad--they only cost about $15. Two infusion centers I have used had them available.

Glad it helped!
Sushi
 

jeff_w

Senior Member
Messages
558
I wanted to give an update re: my IV saline experience now that it is the next day- and am curious if it is similar to your experience @jeff_w.

@Gingergrrl

I'm glad it's working for you!

Your experience is very similar to mine. Like you, I was able to walk more, reach into high cupboards again, carry more weight, etc. I also noticed way less brain fog, which you didn't report here, but you might notice down the line.

In my case, I needed saline everyday to maintain the gains. Everyone is different, so you might not need it as often. Dr. Kaufman told me that some people do well with once or twice a week, while others do best with everyday.

You might also find that a faster drip gives you more benefits. A 90 minute drip gives me ideal gains, while a 2 hour drip gives me not quite as many gains but is easier on my veins. I've talked to a lot of people about this, and most do best with a faster drip.

You did so well with one liter, and 1.5 or 2 liters might be even better for you, you really can't know until you experience it. Imagine if more saline made you feel even better, but you never knew because you never tried? In my experience, there's nothing to lose by trying more, and there's so much potential for further gain. :) In the beginning, I had maximum gains with 2 liters per day. Then I decreased it to 1.5 liters per day.

No worries about posting to this thread; it's info that can help a lot of people. :) Although if you did start a new IV saline thread in the "Treatments" ("Trouble Standing, POTS") section, that would reach even more people, not just those interested in Dr. Kaufman. In either case, keep us posted!
 
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Gingergrrl

Senior Member
Messages
16,171
Yes, as @Ruthie24 mentioned, 3 times a week works well for her. IV saline won't "stay with you" for very long. Maybe ask if you can bring your own heating pad--they only cost about $15. Two infusion centers I have used had them available. Glad it helped!

@Sushi I actually asked the nurse about bringing my own heating pad and she said it was not allowed (which was funny b/c I had brought it while I was in the hospital and no one even knew!) But I understand and need to comply with their regulations. And thank you @Ruthie24 for all your feedback and I suspect that I will benefit from saline 2-3x a week. For now, I only have a prescription for 1x/wk from my cardio to see how it goes as a trial but I think he will modify it at next appt on 11/5.

I wish this infusion center were closer to my home but it involves two freeways to get there so my husband drives me. So if I increase to 2-3x/wk, he would either have to stay w/me or drop me off and come back and either way creates more work for him. He was happy to see how much better I feel and he would do it, I just feel guilty like I do about everything else.

@jeff_w

I'm glad it's working for you!Your experience is very similar to mine. Like you, I was able to walk more, reach into high cupboards again, carry more weight, etc. I also noticed way less brain fog, which you didn't report here, but you might notice down the line.

I am so glad you confirmed this and that is what I have noticed- I can walk a little faster, reach into high cupboards and carry things, etc. Brain fog is not really an issue for me versus extreme physical weakness where any exertion (like lifting a plate from cupboard) could give an angina type episode.

In my case, I needed saline everyday to maintain the gains. Everyone is different, so you might not need it as often. Dr. Kaufman told me that some people do well with once or twice a week, while others do best with everyday.

You might also find that a faster drip gives you more benefits. A 90 minute drip gives me ideal gains, while a 2 hour drip gives me not quite as many gains but is easier on my veins. I've talked to a lot of people about this, and most do best with a faster drip.

I think for now if I change anything, it would be to go from the 3 hour drip to 2 hours or to increase it from once a week to 2-3x a week. I have bad veins so want to make it easier on my veins if possible. Someone said that if the drip is too fast, you can get chest pains but it sounds like that did not happen for you?

You did so well with one liter, and 1.5 or 2 liters might be even better for you, you really can't know until you experience it. Imagine if more saline made you feel even better, but you never knew because you never tried? In my experience, there's nothing to lose by trying more, and there's so much potential for further gain. :) In the beginning, I had maximum gains with 2 liters per day. Then I decreased it to 1.5 liters per day.

You are right and I would try the 1.5 liters if it is offered to me. The nurse said the bag I had was "overfilled" and it went an extra 15 min so I probably got over a liter yesterday.

No worries about posting to this thread; it's info that can help a lot of people. :) Although if you did start a new IV saline thread in the "Treatments" ("Trouble Standing, POTS") section, that would reach even more people, not just those interested in Dr. Kaufman. In either case, keep us posted!

Thank you and I agree it is info that can help a lot of people, I just didn't want to detract or go off topic from your original thread about Dr. K and your treatment. I will keep you guys posted and my next treatment is scheduled for next Fri on Halloween (good times :D.) I think I may create a new thread at that time in the POTS/OI section about experiences with IV saline (unless Sushi, you think I should keep it here?)
 
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15,786
@Gingergrrl - If a longer-term port is installed, you can probably do the IVs yourself at home, especially if your hubby or someone else is there to help you set it up and monitor you during it (in the evenings after work, etc). It's actually all pretty simple, if you don't have to insert a cannula into a vein.
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl If you would like to post on a thread specific to IV saline, why not revive an old one--if we need to update the title, we can do that. Sushi

@Sushi I will search through some old IV saline threads to see what I can find but for now want to respond to what @Valentijn asked me in here and have some questions (and want to hear if @jeff_w and @Ruthie24 use the port?)

@Gingergrrl - If a longer-term port is installed, you can probably do the IVs yourself at home, especially if your hubby or someone else is there to help you set it up and monitor you during it (in the evenings after work, etc). It's actually all pretty simple, if you don't have to insert a cannula into a vein.

Val, when you say a "longer term port" is it still in your arm or is it the kind that is put in someone's chest? I don't know if I am picturing what you mean and assume with the long-term port that you can't take a shower or get it wet or it could get infected? Also, how long does it stay in before it needs to be replaced?

At present, I do not have a doctors order to do saline at home and not sure if my new insurance will cover this. But even aside from that, I am afraid of doing it at home b/c I've had the IV come out of my vein or the vein burst and if this happened at home, my husband and I would not know how to fix it! I feel safer with the nurse there in case something goes wrong but if I can get saline 2-3x a week, it would be easier to do at home. Part of the problem for me is that the infusion center/hospital where my cardio works is quite far from my home. I have not been able to find a closer one that does saline but if I could find one that I could drive to myself or be dropped off right in front, it really wouldn't be so bad.
 
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15,786
Val, when you say a "longer term port" is it still in your arm or is it the kind that is put in someone's chest? I don't know if I am picturing what you mean and assume with the long-term port that you can't take a shower or get it wet or it could get infected? Also, how long does it stay in before it needs to be replaced?
Upper arm or chest. It's self-sealing when there's no needle inserted, so no problems with getting wet or going under water. It can be left in for years, though does need monthly flushing if it's not being used often.
At present, I do not have a doctors order to do saline at home and not sure if my new insurance will cover this.
It would be much cheaper if done at home without needing a nurse ... your insurance company would probably prefer that, if regulations allow for it. The saline itself is about $10-15 for one liter, though the basic infusion sets cost a bit more.
But even aside from that, I am afraid of doing it at home b/c I've had the IV come out of my vein or the vein burst and if this happened at home, my husband and I would not know how to fix it!
The cannula shouldn't be coming out when it's in a bigger vein. Basically the temporary cannulas for the hands have very short tubes to go into the vein, because the veins there are generally "short" as they don't go in long straight lines. The ones going into fore-arm or foot are only a little longer. Because those veins are so short (and often thin/constricted especially for us), it's hard to get even a short cannula into them properly, and it's especially easy for shorter cannulas to come out. But the cannula going into a long-term port is MUCH longer, and is going into a much longer and thicker vein.
I feel safer with the nurse there in case something goes wrong but if I can get saline 2-3x a week, it would be easier to do at home.
I had a nurse with me the first few weeks I had IV antibiotics, while they showed me how to do things. After that, they would just be there to insert the cannula and flush it (not necessary with a port installed) and set up the IV bag and attach it (pretty simple stuff I was prepared to do if they were ever unable to make it to my house). Then I'd be alone for up to a couple hours, and close everything down and unhook myself. The only somewhat difficult part was wrapping up one hand while only being able to use the other hand, but that mostly just required patience and persistence :rolleyes:

I also knew what to do if I did blow a vein and the cannula slipped out of (or through) a vein. Stop the infusion immediately! We did have it happen once during one of my cannula-inserting marathon sessions, when the nurse thought she'd found the elusive vein and even had a good bit of blood coming out, but the saline just went into the hand tissue instead. I had a hard little lump there for about 15 minutes, then it absorbed back into wherever. But I'm not sure it's even possible to blow a vein with an implanted port - I would seriously doubt it.

Anyhow, some data is at:
http://en.wikipedia.org/wiki/Intravenous_therapy#Implantable_ports
http://en.wikipedia.org/wiki/Port_(medical)
And of course you might be able to talk to your doctors or someone in the infusion center about, to see if they think it's a viable option and the details about how it would be set up. If I were ever doing frequent infusions again I would definitely do everything I could to get an implant - it was simply too much hassle and pain to find and insert a cannula in my hand and leave it there for 4 days per week.
 

Butydoc

Senior Member
Messages
790
Upper arm or chest. It's self-sealing when there's no needle inserted, so no problems with getting wet or going under water. It can be left in for years, though does need monthly flushing if it's not being used often.

It would be much cheaper if done at home without needing a nurse ... your insurance company would probably prefer that, if regulations allow for it. The saline itself is about $10-15 for one liter, though the basic infusion sets cost a bit more.

The cannula shouldn't be coming out when it's in a bigger vein. Basically the temporary cannulas for the hands have very short tubes to go into the vein, because the veins there are generally "short" as they don't go in long straight lines. The ones going into fore-arm or foot are only a little longer. Because those veins are so short (and often thin/constricted especially for us), it's hard to get even a short cannula into them properly, and it's especially easy for shorter cannulas to come out. But the cannula going into a long-term port is MUCH longer, and is going into a much longer and thicker vein.

I had a nurse with me the first few weeks I had IV antibiotics, while they showed me how to do things. After that, they would just be there to insert the cannula and flush it (not necessary with a port installed) and set up the IV bag and attach it (pretty simple stuff I was prepared to do if they were ever unable to make it to my house). Then I'd be alone for up to a couple hours, and close everything down and unhook myself. The only somewhat difficult part was wrapping up one hand while only being able to use the other hand, but that mostly just required patience and persistence :rolleyes:

I also knew what to do if I did blow a vein and the cannula slipped out of (or through) a vein. Stop the infusion immediately! We did have it happen once during one of my cannula-inserting marathon sessions, when the nurse thought she'd found the elusive vein and even had a good bit of blood coming out, but the saline just went into the hand tissue instead. I had a hard little lump there for about 15 minutes, then it absorbed back into wherever. But I'm not sure it's even possible to blow a vein with an implanted port - I would seriously doubt it.

Anyhow, some data is at:
http://en.wikipedia.org/wiki/Intravenous_therapy#Implantable_ports
http://en.wikipedia.org/wiki/Port_(medical)
And of course you might be able to talk to your doctors or someone in the infusion center about, to see if they think it's a viable option and the details about how it would be set up. If I were ever doing frequent infusions again I would definitely do everything I could to get an implant - it was simply too much hassle and pain to find and insert a cannula in my hand and leave it there for 4 days per week.
Hi Valentijn,

The two main options for longer term iv access are pic lines and portocaths. The pic line generally enter a large arm vein and ends in the superior vena cava. The port is external and requires meticulous sterile technique to prevent infection. The Portocaths generally enters the subclavian vein and the port is subcutaneous. The pic lines don't generally last as long because of infection at the entry site or sepsis from the line itself. The portocath is similar, but last longer. Both are good options for longer term iv use but do carry a risk of sepsis. If the person has good veins and requires a relative short course of iv therapy then a typical iv catch is preferable. If the person has poor vein from previous ivs or is expecting long term iv therapy then the above two option are reasonable.

Best,
Gary
 

Gingergrrl

Senior Member
Messages
16,171
The two main options for longer term iv access are pic lines and portocaths. The pic line generally enter a large arm vein and ends in the superior vena cava. The port is external and requires meticulous sterile technique to prevent infection. The Portocaths generally enters the subclavian vein and the port is subcutaneous. The pic lines don't generally last as long because of infection at the entry site or sepsis from the line itself. The portocath is similar, but last longer. Both are good options for longer term iv use but do carry a risk of sepsis. If the person has good veins and requires a relative short course of iv therapy then a typical iv catch is preferable. If the person has poor vein from previous ivs or is expecting long term iv therapy then the above two option are reasonable.

Best, Gary

@Butydoc Thank you for posting your medical expertise on this and also thank you @Valentijn for all the info and it was so helpful to hear your experiences and what you would do differently if you were to do it again.

Right now my IV saline prescription is for one liter 1x/wk but my goal is to get it changed to 1.5 liters 3x/wk and see how this feels. Although the portocath and pic line sound like great options, the risk of infection and sepsis does scare me quite a bit. Even though I would clean it meticulously, any time there is ever a risk of a rare side effect or complication, it will happen to me.

For now, I feel more comfortable going to an infusion center and having a nurse there to insert and remove the IV. If this turns out to be a long-term treatment for me, I may change my mind and feel differently. I am so appreciative of the info and knowing about these options. The IV saline was miraculous and for 48 hours I almost felt "cured" and like a normal person. Today, I am back to my pre-saline level of fatigue, lower BP, shortness of breath, chest pressure, etc, so I am really looking forward to the next saline and hopefully getting my prescription increased in frequency.
 

jeff_w

Senior Member
Messages
558
Although the portocath and pic line sound like great options, the risk of infection and sepsis does scare me quite a bit. Even though I would clean it meticulously, any time there is ever a risk of a rare side effect or complication, it will happen to me.

@Gingergrrl

I avoided a PICC line and a port due to similar concerns. This choice does come with a tradeoff: I have to be poked in the upper arm or hand with an IV line that stays in me for 5 days until it's time for a new one. It isn't fantastic being poked every 5 days, but the reward of feeling much better is way worth it.
 

Gingergrrl

Senior Member
Messages
16,171
@jeff_w I share your concerns re: the PICC line (and assuming I can get a new prescription for IV saline 3x/wk) I think I will just have an IV inserted and removed each time. I am so new to the process that it is hard to imagine all the different scenarios and ways to get this treatment so I may change my mind as it progresses. I am so appreciative of all the info. All I know is the IV saline made me feel like a normal person for 48 hours so being poked with an IV seems like a small price to pay. I hope all future treatments are as beneficial as the first one. Does the effect ever wear off or is each treatment like brand new?
 

jeff_w

Senior Member
Messages
558
I am so appreciative of all the info. All I know is the IV saline made me feel like a normal person for 48 hours so being poked with an IV seems like a small price to pay. I hope all future treatments are as beneficial as the first one. Does the effect ever wear off or is each treatment like brand new?

@Gingergrrl

Everyone is different. For me, the saline maintains some degree of functionality. I'm nowhere near back to normal though. Wish that were the case! Sounds like it's working great for you.
 

Gingergrrl

Senior Member
Messages
16,171
@jeff_w I actually only had one treatment and I don't think I phrased my question well. I didn't mean that the saline brings you back to pre-CFS functioning or is a cure. What I meant was, if you have 100 saline treatments, does each one make you feel better for 48 hours (like it did for me before it wore off) versus is each successive saline treatment less and less effective- like does your body build up a tolerance to it so it stops working? Does that make more sense?
 

jeff_w

Senior Member
Messages
558
@jeff_w I actually only had one treatment and I don't think I phrased my question well. I didn't mean that the saline brings you back to pre-CFS functioning or is a cure. What I meant was, if you have 100 saline treatments, does each one make you feel better for 48 hours (like it did for me before it wore off) versus is each successive saline treatment less and less effective- like does your body build up a tolerance to it so it stops working? Does that make more sense?

I've been doing the infusions for almost four months, and my memory of the beginning is a bit hazy. When I first started saline, I had difficulty talking and had to communicate with a pen and a pad of paper. I also couldn't lift a full glass of water on my own. As time went on, I improved more and more.

Overall, looking back, I think the gains from saline maintain themselves. I don't think I ever built up a tolerance.
 

heapsreal

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@jeff_w I share your concerns re: the PICC line (and assuming I can get a new prescription for IV saline 3x/wk) I think I will just have an IV inserted and removed each time. I am so new to the process that it is hard to imagine all the different scenarios and ways to get this treatment so I may change my mind as it progresses. I am so appreciative of all the info. All I know is the IV saline made me feel like a normal person for 48 hours so being poked with an IV seems like a small price to pay. I hope all future treatments are as beneficial as the first one. Does the effect ever wear off or is each treatment like brand new?

I spoke with a lady who had a pic line in for saline infusions 3 times week for low blood pressure etc, she had a history of crohns disease and a few other issues. She said she was told they can last upto 6 months before being removed and the risk of infection is generally a local infection and reason for it being removed and they just replace the pic line, maybe abx ? She had hers in place now for 18months with no problems, she was an exception to the rule, but she is probably very proactive in looking after this, so its possible.

I think if after a while you are seeing a positive result than the pic line and infusions i think u should ask to get it done at home by yourself if possible or hubby??

Have u spoken to your doc about meds like desmopressin to help maintain fluid retention and blood volume??
 

Gingergrrl

Senior Member
Messages
16,171
I've been doing the infusions for almost four months, and my memory of the beginning is a bit hazy. When I first started saline, I had difficulty talking and had to communicate with a pen and a pad of paper. I also couldn't lift a full glass of water on my own. As time went on, I improved more and more.

Overall, looking back, I think the gains from saline maintain themselves. I don't think I ever built up a tolerance.

@jeff_w I can completely relate to not being able to lift a full glass of water on my own and that was what was miraculous after the saline, that I could lift those two heavy bowls from the upper cabinet on my own. It sounds like you have made really good gains from the saline and maintained them which is what I was hoping and am so happy for you!

I also wanted to clarify in an earlier post, you said you had the IV in your hand (or arm?) for 4-5 days at a time? I had that in the hospital but didn't realize you could do that outside of a hospital. Did it ever get infected?
 

Gingergrrl

Senior Member
Messages
16,171
I think if after a while you are seeing a positive result than the pic line and infusions i think u should ask to get it done at home by yourself if possible or hubby??

Have u spoken to your doc about meds like desmopressin to help maintain fluid retention and blood volume??

@heapsreal If I try it 3x/wk for a few weeks and it continues to help me as much as the initial infusion, then I will look into other options. I feel like I am too early in the process for those now and first need to work on getting a new prescription.

As far as desmopressin, I have gotten a lot of conflicting feedback and the consensus seemed to be that I should not take it as I do not have DI, polyuria or polydipsia which it is meant to treat. I know it can increase the fluid in your cells so you urinate less but in my case it seemed dangerous due to possible side effects like water poisoning or hyponatremia. We talked about it in another thread and I cannot explain the science very well except that it didn't seem right for my situation. With Desmopressin you have to restrict your fluid intake and I have been instructed to drink Pedialyte, increase fluids and do IV's so it would all contradict.