Topic: **Update 10/24**Missing IVIG due to skin infection!
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
As the topic says, I missed a dose of IVIG last week due to a skin infection.
I've seen my dermatologist, am on oral and topical meds but the rash is not getting better. It has gotten lighter but not smaller in size.
So I'm due for IVIG next week again. I talked to my Immunologist about this and things don't sound good.
I can't miss another dose. If I do, based on my history, I will end up in the hospital with on a life threatening infection. That scares the day lights out of me because me because I know that it's true.
But how to get the IVIG in. I can't do sub- q due to Ehlers Danlos Syndrome. It causes severe side effects and damages tissue where the SQ IG is infused. Not good.
Also due to the EDS, I can't hold a peripheral IV. Super experienced IV therapy nurses can access my veins. But my IVS cannot hold. The veins simply dissentegrate at the site of the catheter. Very frustrating.
So my only option is a PICC or Midline which my doctor does not want to consider for only one or two infusions.
So I don't know what to do. Will you all please pray for me? For this situation?
Thank you!
[ 10-24-2015, 04:15 PM: Message edited by: sammy ]
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susank
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posted
Sammy, of course will pray. I don't understand why no IVIG through your port?
I guess IMIG is out of the question?
I know in the past you did Hizentra SubQ weekly and had difficulties.
Would it be worth trying a different brand - your Gammagard - maybe a trial of 1-3 cc's to see what happens?
Maybe your tissues could accept smaller amounts in varous sites?
I can't think of anything else except to be on antibiotics against the infections you had in the past as protection?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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sammy
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posted
The skin infection is right over my port site and the surrounding area of my chest. So that is why I cannot access my port for my IVIG. It would drag infection in from my skin right to my heart!
Also, I was on multiple heavy duty IV antibiotics the last time I had to go off IVIG. That was still not enough to prevent infection. (I'm not on IV now though.)
I have CVID and NK cell deficiency so I'm especially susceptible to infections.
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susank
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posted
Did not know the infection was by your port. No wonder no IVIG.
I am wondering about Hyaluronidase - which is supposed to help the body more rapidly absorb injected meds? A possibility to try for SubQ Gamma?
Hyqvia (sp?) is the SubQ Gamma that is given in very large volumes. (it has Hyalurondase in it I think? to help with absorption).
Brainstorming here.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
OH sammy .. that is awful! I will definitely step up the prayer.
Keep us posted.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TNT
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Praying!
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sammy
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Thank you!
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susank
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Member # 22150
posted
Sammy how are you doing?
FWIW I think I am going to stop Gamma for some time. I cannot deal with the side effects from either IV or SubQ.
It's hard to know if these symptoms are from the Gamma or Lyme or Bart.
I hate doing this going into the winter.
Sammy - are your respiratory infections spontaneous? (lack of better word). How do you get so many bad resp. infections? Exposure to germs?
I just ordered some bovine colostrum. Will see. Have you tried Xymogen?
What are you doing to help stave off infections?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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sammy
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Member # 13952
posted
Susan, I stay away from people as best as I can. It is truly sad. When I have to go to the doctor, I ask to wait in a room, any place away from the lobby.
I don't touch things, especially chair arms, doors, etc. I use my own pen, use a ton of Kleenex as a barrier. Tons of hand sanitizer frequently. And wash my hands with soap and water as often.
I don't know exactly why I get the respiratory infections so easily. Looking back in my journal, I get sinus, GI, skin, and even cellulitis too. So pretty much susceptible to all kinds of stuff.
I've just been told that my case of CVID is unusually complicated and more severe. one reason is that I have NK cell deficiency too. Both function and quantity are abnormally low. There are other things wrong but they get really complex for my tired brain tonight.
You asked about Xymogen, I take Immunotix 3-6. It is their oral IgG supplement. Guess I hope it helps. I really don't see a difference.
Good luck going off the IgG. Sounds like you cope better without it than I do. So maybe you will feel better for it since it seems to make you so sick.
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sammy
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Member # 13952
posted
**Update 10/ 20/ 15**
I'm getting a PICC line tomorrow at 11am. My doctor is worried that if I miss another dose of IVIG this week that I will end up with a life threatening infection. Be hospitalized.
He is worried though that the infection has contaminated my skin on my arms. That inserting the PICC will put infection into my blood stream and cause sepsis.
So great. That worries me more!
Now I'm torn and really don't know what to do. My chest isn't nearly healed. It will probably need at least another month if not more (based on past similar experiences) at this rate of slow healing. That would mean missing two more infusions after this one.
So I could really use your positive thoughts, prayers, encouragement.
Thank you friends!
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susank
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posted
Sending positive thoughts, prayers and encouragement!!
Please update when you can.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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sammy
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Member # 13952
posted
Cleaned my arms with Cloraprep this morning then put my RX anti fungal cream All Over my arms!!!
Hopefully that will reduce microbial/ fungal presence and eliminate my risk of infection as they will also scrub my arm before the procedure.
I leave in a few minutes to travel to the hospital. It isn't far but traffic is a bear. Procedure is scheduled for noon. They want me there well before. We'll see what traffic allows.
Hugs to all my friends. Hope you have a healing day. Thank you for your positive thoughts & prayers.
Praying that all goes well and that I did not make the wrong decision.
(If I have time I'll check in before the procedure at the hospital, give me your valid reasons fast not to do it if that's how you feel!). Posts: 5237 | From here | Registered: Nov 2007
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Dekrator48
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I am praying for you, sammy!
God Bless you.
Would you be able to take any supplements such as cordyceps or others that can increase NK cell activity rather significantly?
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Praying for you, sammy! You are a brave warrior!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sammy
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Member # 13952
posted
**Update 10/22** Already feeling regret about getting the PICC.
The placement went perfectly. The hospital staff were so kind, caring, professional... They truly knew what they were doing and did it well...
Once set up for the procedure, the actual procedure took less than 2 min!!! I was happily surprised. And there was no pain or discomfort. Compared to my previous ones that took 15- 20 min and gave the nurse much difficulty and caused me much discomfort.
Vast difference between experiences at this children's hospital vs other regular hospitals. (Though no I'm not considered a child, I see multiple rare disease specialists at the children's hospital. They follow you for life since your condition is rare).
Anyways, I'm upset because I'm having a hard time even getting the basic supplies that I need to maintain this PICC. My home health company just doesn't carry some of the products that I need due to allergies/sensitivities.
Also, they don't think that I need to use Heparin on my PICC! Which is rediculous! That's just asking for a clot and blood infection! I clot really easily and need the higher dose heparin or else I have clots that are very hard to clear with cathflo.
Even with high dose heparin, flushing with extra saline, and of course clamping properly, I still get clots in the line every now and then.
So with the risk of infection from the skin infection. And now this clotting issue. I just wish that I would not have gotten the stupid PICC.
Oh, and I have no PICC cover so I can't take a simple shower and I really want one.
So, thanks for listening to my frustration and letting me vent.
I don't know how long I'll keep this PICC beyond my IVIG on Friday. I know that I'll still need it for another month or maybe two but I just can't handle this stress.
I've got too much going on in my life.
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Dekrator48
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I'm thankful that the procedure went well.
I am sorry, sammy, for all the obstacles you are facing.
I am praying that God will make a way, protect you, heal you and strengthen you.
Hugs!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Sammy - sorry for your troubles. Can you get Hep. from Infuserve? Order PICC line covers online? Which is what I did. (for Heplock).
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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susank
Frequent Contributor (1K+ posts)
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posted
Further - can your doctor intervene? Rx the Hep.?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
Very glad it went smoothly, but so sorry to hear of the new troubles.
Will continue to pray.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Sammy - how are you? Did you Heparin and the other things you need?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thank you all for caring and praying for me! I greatly appreciate it
This past week has been extrodinarily long and hard. I haven't even shared most of what has happened on here. It's just crazy! All stuff related to my health and medical providers...
So fo my update, on Thursday night 10/22, I got my PICC supplies. After the courier left, I opened the box and began sorting through the stuff... I could find nothing that I asked for, nothing that we had discussed needing and was approved over the phone!
I didn't get end caps for my PICC, no extension sets so that I can flush it and infuse myself, no sterile gloves, on an on... Basic stuff to be expected!
The only thing I did get, thank God, was Saline. I also got a little very low dose heparin 10 IU x 5cc (normally I use 100iu x10 cc per flush). Big difference. If you do the math, you see that the concentration is vastly different. (So still worried as this low dose is what originally caused problems with my first PICC.)
Then, Friday 10/23/15 my IVIG day. I start out with IV saline hydration. Normally it takes approx 3hrs to run 2 bags by gravity (wide open). Yesterday, 1 bag ran over 6 hrs before we gave up and stopped it.
We discovered that my PICC is much smaller than my port catheter so it cannot run fluids by gravity fast like my port. Basically, I got a PICC more appropriate for babies & small children. Nice
Thankfully though it worked well when we put it on the pump for the IVIG. The only problem was that my IVIG did not complete fully until 11:45pm because we started so much later than we should have!!! Yikes!
My poor nurse was so sweet. She didn't act upset about it at all.
So for my next infusion, I'm going to try to ask for the special Curlin pump tubing to run the saline. That way hopefully it will work faster.
That's why I didn't update yet. Things have been a mess.
And I'm so tired!!!
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