Wish I had some info for you, but I don't have any personal experience with plasma exchange.
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Wish I had some info for you, but I don't have any personal experience with plasma exchange.
I don't know about plasma exchange either, I'm just chiming in to say I'm thinking of and praying for you all the time. I wonder why they stopped the Imuran? That has been the best one for me (unless it's causing the headaches), but I know we're all different. Both my rheumy and ENT were surprised that it helped subglottic stenosis, which usually requires repeated dilations. So I wonder whether it might do good things for lungs too. Might be worth asking the docs? I guess because it suppresses the immune system and he needs to fight the infections.... Tell Batman we all love him and I'm sending healing prayers and love to both of you...
If plasma exchange is same as plasmapheresis this can prove very beneficial as they continue it until all the bad cells are eleminated from the blood which can take several transfusions, My son had this when he was initially admitted to ICU, the specialist renal dialysis nurse came to his bedside with portable machine each day. I am sure this gave the doctors time to consider best form of treatment to save his life. Although my son was heavily sedated on life support which they had to do because of lung haemorraging I was assured the whole thing was painless. It looks worse than it actually is.
Sending you both my best wishes and prayers that this will give Phil the same result it gave my son.
Rif
I think your guess is correct, Lisa, that they stopped the Imuran because it is an immunosuppressant that will interfere with him fighting the infections. I am not clear on whether they know for sure that he is having a WG flare.
Yes, plasma exchanges are often referred to as plasmapharesis. I had umpteen of them initially (they stopped counting units of plasma at a 100 plus units) and think it played a large part in my survival. I think Don had some too. It is sort of like getting an oil change as they remove the old plasma and put in new fresh stuff. I slept through many of them and expect Phil will too.
Best wishes for better health for Phil and less stress for Alysia
Yes I can verify Drz's account of plasmapheris as I had numerous treatments when I was first admitted to hospital. Yes it looks mighty weird what with the machinery and miles of tubing but my experience was totally pain free and took several hours per treatment.
It certainly turned my health around, so much so that they commented on the fact that they had never seen such a recovery, especially with regards to my lungs.
So Alysia, I would take a deep breath and help Phil along this new path, It might not be the total answer but I always say as long as you have options you can live in hope.
Tell Phil to hurry up and get well, as the damage to my knees with all this praying is crippling me!
So pleased your with him
Prayers & love from Worcestershire - u k
Sent from my iPad using Tapatalk
Hope you're doing well.
I was initially on dialysis Mon, Weds and Fri. Then Tues and Thurs was plasmatherisis days. Both were painless.
Dialysis mimics the filtration of the kidneys. I was told my plasmatherisis worked by removing blood, spinning it at high velocity which separates the plasma from the rest of the blood. New plasma is "pumped" into your bloodstream at the same time. The new plasma was in glass jars and looked clear, but slightly yellow. They're about a pint in size and I think I went through 3 each session.
Has anyone heard anything this morning?
If anyone has the private phone or email of dr. Specks please pm me asap. Thx.b
Does anyone know if Alysia got this number? I pm'd Cindy in case she has it... Don't know what else to do from here but will look online...
Phil is not getting better. The inflamation marker is higher from day to day. I am madly scared. The docs here say that he might not survive. Already 2 days of plasma exchange with no change. How long does it takes ? We want to consult with Dr. Specks but we dont have his phone number. I sent him an email and checking around. Please, every info can help. Please pray for my sweetie. Please, God, don't take my sunshine away.....
Alysia, did you receive pm with the numbers Cindy sent? Look back in your FB messages from me I just double checked and they're there. Hoping, wishing and praying for a turnaround. Maybe it's just taking a bit of time and the plasma will kick-start healing very soon...
Foothills should have a chaplain who can say some prayers with or talk with Phil if he's afraid or feels that would help.
OK ALysia, hang in there, I had about 5 plasmapheris treatments on consecutive days so perhaps Phil needs a bit more time, it might take time to turn the whole thing around.
Keep tough and pass on all our best wishes to Phil.
Hi Alysia
It can take several rounds of plasma exchange, my son had over two weeks of it daily before they were confident it was showing signs of working. Hope you got those phone numbers.
Rif
Alysia, is there a reason why you're only trying to get hold of Dr Specks and not other Wegs specialists? I recommend contacting every single one until you get through. And his doctors should be on the phone with other Wegs specialists immediately.
Sending my prayers to Phil and hoping he can turn it around quickly.
Prayers are still coming!
This site has been shared on other threads here and on Facebook recently: InformationCanVasc. It sounds like there is some sort of "consortium" center in Calgary, and other related ones throughout Canada. On the pages of the site you can learn more about this organization and get names of vasculitis docs, some in Calgary. There is also a conference in Calgary happening Oct. 2nd! I wonder if Phil's docs are missing opportunities to talk to vasculitis doctors right there in Calgary. This is all so confusing. He's lying there in grave danger and people aren't using the resources available? I don't get it. I hope this can help in some way, that there really are docs nearby who might be able to help.
If you scroll down on the page linked above, you will find names of docs who are "core members" in all the provinces of Canada; there are two "centers" in Alberta, one of which is in Calgary. I'm getting that these are research and referral centers, not treatment centers, but the docs who are members are certainly vasculitis docs, in rheumatology or other fields related to vasculitis, and it would seem they would have their own practices and treat patients as well as refer patients to other docs and provide information based on their expertise. Contact info is given for these docs. I'd try calling the doc listed first in the Calgary section under Alberta.
I don't know how Phil emailed him in the past.
I had to call his secretary and explain what had happened since my last visit with him two weeks ago and the questions I had for him. She gave me her email address and offered to forward my questions on to him. I thought I could email him on the Mayo site like I can for U of MN Fairview clinic but couldn't find any link. I can download his last report and lab results but saw no way to contact him through my Mayo account.
He still has not responded to my questions so I wonder if he might be away from the office since I have heard he is usually rather prompt about responding to such questions. If my situation was an emergency I believe one of his colleagues would also respond if he was not available
I think his nurse might respond to any questions if you can reach hr through their regular phone line for their department.
I have been off the forum for about 2 weeks and missed a lot of this. And, for some reason, I can't read the first page of this thread. Only the 2nd page comes up for me, but its enough to figure out what is going on. I sure feel bad for Phil and Alysia. It must be awfully frustrating for Alysia to be in Israel and so many miles away. Like everyone esle, I wish there was something I could do. I am only 500 miles away from Calgary, so if there is something you think I could do for you, Alysia, please let me know.
vdub, yes, you have missed a lot. Alysia is currently in Calgary, at Phil's bedside, as he goes through plasma exchange. This is her second trip from Israel to there within the last 3 months or so, both extended stays. Maybe you knew about the first one. Unfortunately for some forum readers, more info is often shared on Facebook than the forum lately, probably because Phil and Alysia have many friends and family there who are not forum members.
Thanks, Anne! I'm glad she's there!
Alysia, I agree with Sangye, please try to hit every specialist you can until you can get the information you need. I am praying for both of you...I am glad you are able to be there with Phil through this.
Alysia, I don't know you since I've been off the forum for awhile, so maybe you're able to summon the tiger in you already, I don't know. But if not, you must get in the doctors' faces and demand that a Wegs specialist be contacted asap. Don't accept any excuses, no "We're trying the plasmapheresis and then we'll see" nonsense that often happens. I've lost too many friends in this group to doctors being in over their heads. Even the Wegs specialists consult with each other. Thank you for being at his side to make sure he has everything he needs.
I agree with Sangye. I know Phil thinks his docs are quite competent, and maybe they are. But the more feedback you can get from any top WG specialists, the better. Not just ones listed in Canada on the CanVasc site, but any of the top ones that we have all heard of on here. I know you were trying to reach Dr. Specks and he seems like a good choice, since he has expertise in lung issues. But if nothing is happening there, then there are others you could contact. I should think any of them would be willing to have a say in this extreme and dire case. I should think Phil's docs already know who these top specialists are and could be making an effort to consult with them, saving you a lot of footwork when you are so stressed out. But if they aren't making that effort, or don't think they need to, what alternatives are there but to be proactive? It is easy for me to say, because I would no doubt be such a wimp in this situation. I cannot fathom how you must feel right now, with lack of sleep, probably not eating, and so stressed and afraid that you can barely make a decision. You are probably a stronger person than I would be, though.
drz, I have gotten the feeling in the past that Phil might have met Dr. Specks, at which point he could have been given his email address. I also think Phil may have given it to Cindy, who may have shared it in a PM on Facebook. Those are only impressions floating in my memory, and they could be wrong. But I know Phil has done a lot of networking with WG docs and patients, and it's possible that Dr. Specks would at least recognize Phil's name. I think your suggestion to try calling his nurse is a good one. It does seem like any attempt to get top specialists involved here is likely to take time and be convoluted. So if Dr. Specks indeed knows Phil or remembers him, it seems a quicker response might be forthcoming, although it hasn't been yet.... And he is a lung specialist. But some input from some top WG rheumatologists would also be a very good thing! I, for one, am concerned about whether he is getting the most effective meds in the right amounts for this urgent situation, if in fact they know for sure it is WG causing the inflammation.
Scary days and nights here. Blood tests are tiny bit better today. Today day 4 of plasma exchange. Tonight RTX. And tomorow they are going to skip one day of plasma exchange. It it how it should be done ? Please pray.
Hi Alysia,
Don't worry about him skipping a day of plasma exchange. I only had it twice a week for 4 weeks (if I remember correctly).
Thanks for the updates. As you know I tend to "disappear" for a while and then become more active on this forum. I'll certainly be hanging around, praying for Phil's recovery.
Hi Alysia
As already said do not worry about them skipping a day, my son had his plasmapheresis in blocks of five days.
Rif
I'm so glad there are people familiar with plasma exchange on here, to set Alysia's mind at ease! She is going through so much anguish; everything helps, and just imagine how it would be without this great community of helpful people.
i was pretty sick during my time of plasma exchanges and had many I know but I don't think they did them every day as some times the body needs a while to sort of recoup from the treatments. I know I also had daily lab work and x-rays too to help monitor my treatment and expect they are doing same for Phil and may be using this info to determine when or how often to do the plasma exchanges.
I know Phil has emailed DR. Specks in the past so wouldn't that address be in his mail box of contacts. If those emails were saved wouldn't they turn up in a search of past messages. I have found some addresses that way from old emails. I would also call his secretary and find out if he is away from the office and who might be covering for him. Mayo is ranked number one in pulmonary in USA so they have a few very competent doctors in that department.
Thank you so much for your wisdom & info & prayers & love & support. We couldnt have made it without you. Love you <3
At Monday night they gave my sweetie RTX but they gave it without solumrdrol before. I tried to insist on it, talking about the protocol but the bitch nurse kicked me out of the room and started it. The day after I asked the docs about it. They said that 80mg pred are enough and that rtx is not givven to people who are on high doses of pred. WTF ??? I think they are wrong. What do you think ?
Phil's lung doc talked with dr. Specks. He doubt that the plasma exchange will help and suggests IVIG treatment. They will take blood tests today. What do you know about IVIG ? The last 3 days the blood tests are getting better, sats are better too. I was happy about it but the lung doc said that it is not signficant and makes me sad and scared again. Please continue to pray. Thanks for being with us <3
I've been off the site for a while and am so sorry to learn to how poorly Phil is. Alysia, if it's any help, my plasma exchange was carried out on week days with weekends off. Thinking of you both and praying. Julie xx
"What do you know about IVIG ?"
Not much, but this tells you the basics IVIG and Plasmapheresis
Keep smiling and although doc doesn't seem too bothered about blood results improving, it's much better than them worsening!
I've never heard of having Solumedrol before RTX. I know they give a little shot of pred and Benadryl (for me it was 100mg pred each time) but never Solumedrol. I've had it (Solumedrol) before but not with the RTX, so don't worry about that part. It makes sense to not give high doses of steroids and RTX together.... too much of an immune compromise.
There, one less thing to worry about.
I know very little personally. It is something that my asthma/immunologist is considering for me. It is designed to support an UNDER-ACTIVE immune system....rather than the overactive immune system that I THINK is part of the Wegeners scenario. I suppose it is possible that with wegs, the immune system might be over-boosted and need to be tamped down. BUT...this is COMPLETE speculation on my part. Sounds like Dr. Specks should know best. Hopefully the hospital doctors pay close attention to his recommendations. I am SO glad that you have been able to get in touch with him.
And by the way...maybe you could encourage that bitch nurse to take some of her vacation time and get away from the two of you. You need much better than that!
I just had my first Rituxan infusion last week and they gave me 120mg solumedrol, Tylenol, and Benadryl prior to my infusion per MD at Cleveland Clinic.
Standard protocol here where I live is to use Solumedrol minutes before the Rituxan. I don't remember there being an issue with what my daily dose of prednisone is at the time. I have been on as much as 60 mg probably when also getting Solumedrol and Rituxan. I don't claim to know a lot about this but I don't know how you would end up reducing your daily prednisone if you don't do SOMETHING like Cytoxan or Rituxan. I don't remember hearing about there being a problem using either of these while also on high dose prednisone.
I had IVIG several years ago. I could not remember how it was supposed to work which I thought was kind of odd.
Of course very sick at the time. So I looked it up and found this: The precise mechanism by which IVIG suppresses harmful inflammation has not been definitively established but is believed to involve the inhibitory Fc receptor.[4][5] However, the actual primary target(s) of IVIG in autoimmune disease are still unclear. IVIG may work via a multi-step model where the injected IVIG first forms a type of immune complex in the patient.[6] Once these immune complexes are formed, they interact with activating Fc receptors on dendritic cells[7] which then mediate anti-inflammatory effects helping to reduce the severity of the autoimmune disease or inflammatory state.Additionally, the donor antibody may bind directly with the abnormal host antibody, stimulating its removal. Alternatively, the massive quantity of antibody may stimulate the host's complement system, leading to enhanced removal of all antibodies, including the harmful ones. IVIG also blocks the antibody receptors on immune cells (macrophages), leading to decreased damage by these cells, or regulation of macrophage phagocytosis
--- So I remember now why I don't remember how IVIG works. It is because it is not precisely understood. I remember being less than encouraged by hearing that but then I realized how many things there are that we don't really understand how they work - we just know they do. I remember working out my own concept (which may be wrong, or just not precise) is that IVIG floods the blood supply with antibodies and overwhelms and confuses the unhealthy process that is currently going on (at least in my case).
The only fact I can convey is that my experience of it was that it was not like getting Cytoxan, Rituxan, or large doses of Solumdrol in that those things initially made me feel worse initially. I could not even feel anything with the IVIG- which is a good thing
I found this article about using IVIG in conjunction with high dose steroids and a pregnant woman with Wegener's: Successful treatment of new onset Wegener's gr... [Mod Rheumatol. 2008] - PubMed - NCBI
I also found this article that talks about the fact that it is used in conjunction with other therapies. It also talks a bit about what is confusing us. The fact that it is used for people with immune deficiency and also people with an over active immune system (like WG). They use the term immunomodulator. Which to me means it is something that somehow corrects underactivity or over activity at the same time.:
Clinical applications of intravenous immunoglobulins (IVIg) ? beyond immunodeficiencies and neurology
And from an NIH funded Vasculitis Research web page:
What is the role for intravenous immunoglobulin (IVIG) in treating vasculitis?Intravenous immunoglobulin (IVIG) is not often used to treat vasculitis. IVIG is the purified antibody-containing part of the blood proteins obtained from blood donations. IVIG is most often used in treating vasculitis when a patient with active vasculitis also has an infection. Unlike most other treatments used in treating vasculitis, IVIG does not suppress the immune system, and hence does not make it more difficult to get over infections. IVIG may also be used when other standard treatments for vasculitis have failed or have not been tolerated well by patients. Treating physicians usually decide on a case-by-case basis how many days of IVIG to give. IVIG is usually given in monthly courses repeated courses monthly for 3-6 months.
And probably the best summary ( you could have skipped all my other stuff) from the Oxford Journal of Rheumatology:
The role of high-dose intravenous immunoglobulin in rheumatology
I'm really thinking about You guys , Alysia and Phil. I'm hoping and praying that you get the same miracle that I have.
It sounds like you have great doctors on board and also a great , and well respected, consultant in Dr Specks. I met him at a WG Symposium several years ago in Kansas City and he took some time to talk with me in the hall way about some questions I had. He is very competent and also has a genuine desire to help people.
(Oh, and PS, the only contra-indication I have ever heard of for Rituxan is an active infection. For me, my sinus infection had to be treated with antibiotics before getting Rituxan.)
Wow, Kirk, you really know how to do your homework. I don't have time to read the links but I read what you wrote, and it sounds like a great thing for Phil, especially if Dr. Specks says so. I hope his docs will quit messing around and get on it. Actually, I don't mean that they are doing the wrong things, I just think, why not follow Dr. Specks' advice ASAP?
You absolutely have to have a big dose of pred circulating before you get rtx infused. That's how they prevent an anaphylactic reaction. Benadryl is not enough. Since Phil is already on 80 mg pred daily he's covered. I normally get 100 mg solumedrol (which equals about 150 mg pred). Dr Seo said he'd be willing to go as low as 80 mg solumedrol ordinarily but since rtx is my last option he doesn't want to take a chance. I also get benadryl, but he said that's not nearly as important as the high dose pred/solumedrol.
I asked Dr Seo about IVIG a few years ago. He said they thought it was a promising treatment for Wegs but research didn't support that hypothesis. He said they use it to support the immune system if a Weggie gets too immune compromised by treatment. Given that info, IVIG might help Phil recover from the infections but it won't help if Wegs is a big factor.
Thank you so much for the precious info & wisdom & support. Kirk, you are so amazing with your help. God bless you all <3
So, the nurse of the plasma exchange arrived but it turned out that the line is blocked. While we were waiting for the med to open it, arrived the results of the Igg blood tests. God's hand. The Igg is very low almost zero. The vasci doc explain that plasma exchange will be wrong now & that Phil is going to get Igiv treatment asap. Prob today.
Do you know what is the doze for Igiv treatment ?
Igiv just started now. Please pray for my sweetie <3
Praying for Phil! God bless him!
😃 victoria
Praying while keeping my fingers crossed!!
Igg today is normal. Do yoy think Phil should get more Igiv Iv ? We dont know yet what they decide. Please help.
My sweetie is on pred 80mg. 40 twice s day. The docs didnt decide yet if they are going to reduce it. I think they shouldnt. What do you think ?
I'm glad IgG is normal; that is a lot better than being almost zero, like the other day. Gilders, from what little research I did, it stands for Immunoglobulin G. What the G means, I don't know. But it is apparently what Phil is getting from the IgIV.
Alysia, my gut feeling, based on NO expertise whatsoever, is that he should keep getting the IgIV. I thought I read that people usually get it for a few days. But the ones who have had it or have more knowledge are the ones who should answer. I also feel that he should keep getting the 80mg. pred as long as there is still a lot of inflammation. Just my two cents worth.
This update is going to remain on the forum only. Please be careful that it will not leak to facebook. Phil doesnt want to make his parents scared. We had a serious talk with the ICU doc today. They cant tell what is going on, if it is an infection or WG or both. He said that it might be the lungs scaring, proggresively. In this case they cant help. I cant stop crying since that talk. Its so scary. So painful. Phil is also scared and sad. Plesse pray. If any one had any idea what it can be, please help. I asked the doc to consult and he said that he will consult with dr. Fauci. Next Igiv IV on monday.
Alysia, this is scary. If Phil can get through the infections or Wegs flare, whichever it is, or both, and be stabilized, maybe a lung transplant would be the next step. I don't quite understand why they are having so much trouble determining if infections or WG are involved. Peace and hope be with you both. Love and prayers are sent in your direction, all day and all night.
I'm praying for Phil! He was the firs to welcome me and I'm sure many others to the forum. This is sad news. I'm sorry. I know there are a lot of people praying for him and sending him well wishes. Get better Phil! We're all rooting for you!
😃 victoria
I too hope that his condition will improve soon, I am a fairly newcomer to this site and have been reading these updates. On the pred. I wouldn't be concerned with the 80mg dose, I also took 40mg twice daily out of the hospital, but up too 500mg during my stay. Again I hope his condition turns for the better very soon!
Oh man, progressive scarring (progressive fibrosis) is terrifying. I pray it's not that. It can be very difficult to tell Wegs from infection. It's happened to me a number of times. This is a lot for you to carry, Alysia. :sad:
80 mg of pred day after day is a huge dose. The higher doses like 500 or 1,000 mg solumedrol are used only for a few days when someone is in acute crisis. It's not safe to keep him on 80 mg of pred for very long at all. That's certainly enough to knock down the Wegs if that's the underlying problem, but it does make it more difficult to get an infection under control. It's a terrible choice. You must get a Wegs specialist involved, and at this point I would recommend getting more than one to help.
Keeping Phil in my prayers.
I agree, Sangye. I know in the past Phil has mentioned some WG specialists in Canada whom he holds in high regard, and then there are the ones in the US, too. It sounds like he has enough presence of mind that he could make some suggestions about which ones of these he'd like his docs to consult with, if possible. Dr. Specks has been involved. There must be others whose attention could be gotten.
Not much I can say other than we think of you two all the time. I wish we could receive some better news soon.
Alysia I'm going to try and be positive here. During my time with WG I've had quite a few situations where Drs have not known what is causing various problems. But the body is an amazing thing. I believe the Drs did enough to slow down the problems I had (severe WG, renal failure, septicemia and pneumonia, all at the same time) and my positive attitude allowed my body to repair itself.
You probably don't know how much of a difference you're making to Phil's recovery. With you being there it's giving Phil an extra reason to fight. If he slips in to a "there's no use fighting" attitude then that's when he's in real trouble. Try to stay positive and keep Phil positive.
I don't know what to suggest about getting as many Drs involved as possible. Ideally you only need 1 WG specialist who can make quick, decisive and CORRECT decisions. You don't want a situation where Drs are waiting for other Drs to contact them or Drs can't agree on treatments, all the while Phil is just lying there waiting. Having said that, hearing other professional opinions can help to come up with new ideas. What I'm trying to say is that don't ever feel you haven't done things the best way for Phil. There is no completely correct, best way with this illness. You being there supporting him is the BEST thing you can do and you're doing it!
Dont like the possibility of progressive scaring, As Sangye said a Wegs specialist is vital and as many as possible to pool their knowledge, do they also have an infecton control specialist on the team too.
You are both in my thoughts.
Rif
Totally agree with this.....Quote:
You being there supporting him is the BEST thing you can do
this is potentially disheartening news. However, they DON'T know. You must assume this worst-case scenario is NOT what is happening. It has been scientifically proven many times over now that our thoughts can affect matter and help our body's cells to heal. Tell Phil his lungs are not progressively scarring. Tell him to visualize his lungs pink, healthy, full of good clean air... I know that it's so hard not to despair, but it won't do either of you any good. I truly believe that we can will our bodies to help ourselves heal. That is not to say that it is ever one's fault if it doesn't work, but you and Phil must both try. We're all sending you healing thoughts, positive energy and prayers. Tell him to visualize all of that healing light coming his way and infiltrating his lungs, fighting back any scarring or darkness. This is the little sliver of 'healing power' (respecting the forum's non-religious nature) in each of us, and we are pooling it together for him. Soak it up... Maybe listening to a healing meditation would help? dr. Bernie Seigel has very reassuring recordings that help you to connect on a cellular level and help your healing process, I'm sure there are many others like him, maybe even someone of Phil's faith??? This type of thing has been very calming and healing for me in the scariest times.
I will try to find contact info for someone from canvasc coming to the conference. I think I mentioned before to you that I spoke with Dr. pagneault (sp.) and he was very kind and willing to consult, maybe he is a good option . I'm not at home now but could probably find the number again.
We are with you, God is with you, (hope that's ok to say here), praying he can make it through this and get better enough for a transplant and a somewhat fresh start! Xoxo
With the improvement in Phil's labs, we hope that his health has bottomed out and that recovery has begun. Having said that, it looks like his recovery is going to be a long, hard climb. Good thoughts for recovery heading your way...
Tell him - that when he gets better, he is going to be in big trouble from all of us, for scaring you so :angry:
Also tell him to stop stressing and just worry about getting better. Hopefully the doctors and any WG specialtists can worry about the other stuff.
This morning on facebook you said that his blood results were looking better than the last ones - this in itself is very hopeful. :thumbsup:
Has there been any recent talk of the lung transplant - is this still on the cards? :confused1:
Thank you so much from Phil & from me for your love & support & heart-warming thoughts. You give us strength to endure and to continue fighting. Phil read all your posts, I show him on my phone. Whenever he needs encouragement he asked me to show him the forum. Love you. God bless you.
Transplant is not an option now. He is too sick to suvive it. The paradox is that he had to be much healthy for it and at the same time sick enough.
Is that a permanent thing or he needs to get healthier to make it an option again?
Tell Phil I'm hoping he'll see some improvement soon.
blood tests continue to get better each day. But my sweetie is not feeling better. He is working very hard to breath all the time. He can almost only work on breathing. Nothing else. Eats almost nothing. With feeding tube. He is exhausted and sweating a lot all the time. Its hard for him to talk but he is very seeet and kind when he does.
The ICU doc said today that he thinks that it is not WG flaring and that the treatment for WG made things worse, like more hard to fight infection, which was there for sure. I am not sure that its not WG activity. I think that things started to get worse and this is why they added the WG treatment. I even wonder if the hole in the lung that caused the pneumothorax was not wg-made, like the hole that we have in the saddle nose ??? I dont know.....
Bob. He needs to get healthier, to pass lots of examinations and to do 6 weeks of excercises b4 he can be on the transplant list.
Thanks for the updates. I don't know his Facebook page, in fact I don't use Facebook, so this forum and your posts are the only way I can find out how he's doing.
I know it must be worrying when he's not feeling any better, but it's going to take quite some time. Improved blood results are probably the best we can hope for at this stage and fortunately that's what's happening.
Igg today is lower. Still they didnt give him Igiv IV and they didnt even bother to tell me why not. Very frustrating and scary. I am asking that a wg expert will come. So far nothing. Cant they understand the dread ? My sweetie is sleeping almost all the time. Today and yesterday. I dont know what it means. I am still trying to understand this Igiv treatment. Every info is welcomed. Thanks for being with us. Love you.
Hi Alysia,
My prayers are with you both.
It is my understanding that IVIG is to give the person igg antibodies when theirs are too low for fighting infections, but maybe someone else can clarify.
Also, sleep is necessary for healing, so all the sleep a person can get is best.
It's hard to get sleep in the hospital. REM and slow wave sleep is where the body does the repairs.
Here is more info on sleep and vitamin D by Dr Stasha Gominak.
Videos | Sleep, Chronic Pain, and Headaches
Sleeping in the ICU is very difficult due to the constant lights and noise. He might just be needing extra sleep because he hasn't gotten enough. mrtmeo is right-- sleep is necessary for healing. Just be there with him and that is enough right now, Alysia.
I'm not familiar with IGIV treatment but your past post mentioned he was exhausted from trying to breathe so sleep may be the best therapy for him right now. I think medicine is very frustrating in that it is not an exact science and every doctor has a different opinion as to what is the best or correct treatment. Keeping both of you in my thoughts and prayers that each day will get better. Take care of yourself also, and remember, the darkest hour is just before dawn.
Karen
I remember when I was most ill the doctors often told me if i wasn't getting worse, I was getting better. Fighting for air can be very exhausting. I and some others here had to be intubated for a week or two to get the necessary rest to allow some healing to take place. It is encouraging to me that he is able to maintain consciousness and talk with you even if he sleeps most of the time.
What the ICU doctor said about infection versus Wegs is consistent with info I got from my Wegs expert at Mayo suggesting I treat the probable infection first in my ear and around the BAHA site before exploring possible active Weg which was also listed as a possibility by reader of my bone scan of my skull. It is possible to have both infections and active Wegs at same time but it is generally safer to treat infections first before beginning treatment for active Wegs.
Glad to hear he is getting better lab numbers as I think it means he is getting better even though it may take awhile for his body feelings to catch up. Best wishes for more improvement.
We almost lost him today. That over sleeping was not a good one. He continued to be very sleepy. The ICU doc came to the room to talk with me in perfect timing. God sent him. I saw that my sweetie's sats are dropping for no reason. I talked to him and he didnt respond. At that point the ICU doc and the team started to work on him. I was shaking and crying and praying, thinking that he is dying. And then he was back.
Oh no, how scary. :sad::sad:
It turns out that the Fentanol machine was not ok. He got overdoze of it. They put him on bi-pap machine. Thanks God not tube. Yube means the end. He is getting med to clean the overdoze. Still too scary. Please pray.
Alysia, you were so right to be concerned about all that sleeping. Thank God you were there to catch what was going on with his stats and to say something, and thank God the ICU doc was there to mobilize a team to get to the heart of what the problem was. Very scary indeed, that these kinds of mistakes and equipment failures are happening. I'm praying that things get straightened out and fall into place from here on, and that he heads toward recovery from all these setbacks. You are a heroic presence throughout all this. :thumbup:
The BiPap should allow him to breathe easier .... Stand strong Phil
I've been off the site for a while and just heard about this. Hang in there Phil, we are all praying for you. Stay positive, we need you back to dispense your great advise.
Keep strong Alysia, you are truely Phil's Guardian Angel.
Keeping our hopes up that this may be a turning point and that slow gradual progress is made from now on.
I'm with you Alysia and Phil, all the way, in my thoughts and with my love. xx
Even in the best hospitals with great care it seems necessary or at least very desirable to have a guardian present to over see your care. I believe my survival was due to the constant supervision provided by my family who directed my health care when I was unable to do so. They can ensure hospital staff are fully aware of any important changes in ones condition and call for help when needed. Med errors are one of the leading causes of death (third in USA) in hospitals. Phil is very lucky to have such a dedicated guardian with him. But it is a very stressful job so Alysia try to take good care of yourself too. Is there anyone there to help support you or give you a break?
Sending prayers and healing thoughts from Sweden for you both.
I have seen on Facebook that Phil's parents are on their way back again. They have been ill and that's why they've stayed away for a bit. Alysia, yes, you need some breaks here, though I know it is hard to leave his side. Having more loved ones there for support will help. Bless you all.
Thank God Alysia that you were there to see there was a problem and get something done.
So scary.
I am very suprised that they would give someone with respiratory problems an opioid.
Opiates suppress the breathing.
Keep a good eye on him and ask all the questions you can!
My prayers are with you both!
What a frightening experience for both of you! Phil is blessed to have you there with him and watching over him so closely. I agree with mrtmeo about their choice of a pain medication. It doesn't make sense unless their was no other reasonable choice for pain control. Take good care of yourself, and please share our prayers and words of support with Phil's parents. After becoming a parent myself, I now understand how painful it is to watch your child suffering or ill and I'm sure this has been a very difficult time for them also.
Update: my sweetie looks today much better. He is awake and his sense of humor is back. Still on higher oxygen. No more on bi-pap after he vommited. They still checking his blood gas. I am still afraid that they will put him on tube, one nasty doc said they might if this blood gas test will not improve enough. Tube means the end. Please pray that they will not put him on tube. We had parade of docs today: the amazing lung doc, the ICU doc that saved his life, the doc that is handling the Ivig, infectious diseases expert, and resident from rheumatology. The plan is to give him more antibiotics to cover all options and to continue the Igiv according to Igg level. Seems like the event of yesterday shaked them to start fighting for my sweetie. Please dont stop praying. Thanks for your caring. Love you.
I am ok. Eating healthy. Sleeping enough. Having my daily walking from my hostel to the ICU. When my sweetie holds my hand, which he does most of the time, and yesterday all the time after he was back, I dont need anything. Just that he will get better.
This sounds much better about both of you. Hoping it continues!
It is encouraging that he's feeling better.
You are definitely in our prayers daily.
It's possible that he may have some withdrawals from the opiate overdose.
The worst of the withdrawals last about 3-4 days.
Also, I was wondering if they checked his ANCA and PR3 values and if they are elevated, could they use plasma exchange?
Plasma exchange will remove the anca's, but not sure if it removes the pr3's.