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Seeking Info On Scleroderma/dema Gut Problems - Please Help!


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#1 meeta

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Posted 21 January 2007 - 05:34 PM

Hi everyone

I have just registered and logged on here to try and get some information / advice on behalf of my hubby, who is currently in a pretty bad way in hospital. Any help at all will be so much appreciated!

About a year ago hubby (Aadhaar) was diagnosed with scleroderma, however this diagnosis was later revised by his rheumotologist to scleredema, because whilst he had skin involvement such as tightening, limited movement and so forth, he did not have Raynaud's syndrome and no cardiovascular issues, which is still the case.

He wasn't put on any medications at all, just vitamin/mineral supplements and sort of a "watching brief" to see what happened basically, continued in his job and so on. Up until pretty recently things have been going quite well, he has even noticed that there has been some improvement in the skin area ( he actually has a few wrinkles again!) but over the last six months or so he has experienced on and off, some digestive discomfort which he describes as feeling like his entire digestive system has seized up. This is associated with a low level pain and makes him not want to eat, but usually has passed within a couple of hours.

When he asked his general practitioner about this the information was that gastrointestinal involvement was something quite typical (if there is such a thing!) of scleroderma/dema ( and he already had experienced mild difficulty swallowing for quite some time) but that as long as he was still having normal bowel movements there was nothing to be too concerned about at this stage.

Then about three weeks ago he began to get constipated and as a result, more abdominal pain which one night flared up to be very severe pain - so we rushed to the hospital where they kept him under observation in the emergency ward and filled him up with pain medication...when they took x-rays they could see that the bowel was full. They also said he was very badly dehydrated which was weird because he had been drinking quite a lot of fluids....So, proscribed laxatives and more fibre in the diet and sent him home.

Over the next few days he got progressively worse even though the laxatives seemed to be working to an extent, in that he went from being totally constipated to the complete opposite, but no change to the discomfort and didn't want to eat at all. Then a really massively bad attack of pain so back to the hospital where thankfully they admitted him this time. This was a week ago today.

He was on a pain medication/ antibiotic/saline drip for four days and then they took him off that and tried oral antibiotics / pain killers. The pain has abated to an extent but is still quite bad and especially bad about ten minutes after he tries to eat a mouthful of anything. Anything he puts in just goes straight through, even though further x-rays have shown that a lot of the stuff that they saw on the first x-ray has not in fact moved. It's like it is stuck there but anything new that goes in is just going through immediately. He doesn't have the increase in pain before or during opening the bowels, only after, and this is accompanied by nausea.

The trouble is, because the treating doctors know of the scleroderma/dema issue they are extremely reluctant to perform any sort of surgery or even invasive examination procedure because of concern about possible healing complications.

Aadhaar was admitted to the surgical ward (I think they were initially thinking appendicitis) and that's where he still is. It has been a week and the doctors don't seem to be much closer to making any sort of diagnosis, it seems to be very much a "wait and see" policy, which is understandable I suppose but surely they will have to do something at some stage. So far the following have been considered - appendicitis, bacterial infection (still haven't got the test results back on that one because of the weekend), ulcerated bowel - none have been ruled out but none diagnosed either.

I am just wondering if anyone out there with this illness has experienced a similar episode to this, or have information on what might be going on.....getting info from the doctors is like getting blood from a stone, but then again it seems they don't have much to say anyway just yet!

Aadhaar's specialist has been notified but I have no idea of the amount of consultation going on or even how much use it would be, since he is a rheumatologist and this seems to be a gastroenteroligists scenario.

Anyway - I hope someone may be able to shed some light, even a little bit.

Thanks in advance for any replies and thanks for listening

Meeta

#2 peanut

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Posted 21 January 2007 - 07:05 PM

Hi Meeta!
Big Hugs to you and your hubby. You seem like you're going through so much and we are always here to listen! I too am going through gastro issues myself and must wait a month to see my gastrointestinologist.

My stomach problems just beginning to flare up, but are nowhere near your hubbys. I take various stomach meds including histamine-2 blockers, and drink tons of fluid food, but seems to get stuck. It swells up all fat forever. I’ve learned to eat heavier lunches and lighter dinners, and drinking little sips of water through out the day seems to help more than large gulps. BMs are difficult - not normal even though I eat tons of fiber. Sometimes I find eating awful actually helps… I don’t know why though. Hopefully its nothing too complicated.

It seems appropriate to consult a gastro doctor (hopefully one who knows a thing or two about sclero) and I hope your rheumatologist is doing so…

My thoughts are with you!
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#3 Guest_Sherrill_*

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Posted 21 January 2007 - 07:29 PM

Hello Meeta,

Welcome to the Forums, though it is a pity you had to find us under such unfortunate circumstances! However, you are among friends, and I hope we can help you find at least some of the answers to your questions.

First of all, I will give you some links from the main website Scleroderma from A to Z which this Forum is attached to.

Bowel Dysfunction This page says at the start:
Scleroderma can cause constipation, diarrhea, malabsorption, diminished peristalsis, and bowel incontinence. So you may find some information here.

There is a section under Diseases Similar to Scleroderma entitled: Scleredema
You may find something here about your husband's problems, particularly in this link from eMedicine: Scleredema

And last, but not least: Gastrointestinal Involvement

Your general practitioner was right when he said that GI problems are common in scleroderma. I think these problems are shared by most, or even all members here. Though some are worse than others. Some have more trouble with constipation, and others with diarrhea, while still others have both! Personally I have more problems with diarrhea, and take small amounts of an OTC diarrhea med when necessary, and perhaps larger amounts when I go out.

I must say that what is happening to your husband is somewhat excessive, and I think you would be within your rights to ask what is going on, and even to get some sort of second opinion, though this is difficult when he is in hospital.

Their choice of pain reliever could have been a bit unfortunate too, as many pain medication can cause constipation, which he didn't need! However, there may have been no choice.

I nearly forgot......... often when constipated the bowel requires a great deal of fluid to move anything along, and just keeps seeming to absorb it until something *happens*. This may have been why your husband appeared dehydrated even though he was drinking fluids.

I do hope things improve for him very soon, and please keep us informed on his progress!

#4 meeta

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Posted 21 January 2007 - 08:56 PM

Hi Sherrill

Thanks so much for that very helpful information, and the links which are fantastic because there is so much information to wade through on the net, a lot of it in non-laymans language, and it can get a bit overwhelming.

Just got back from visiting the hospital and there has been some slight improvement with the pain levels and he is trying to eat a bit even though he doesn't really feel like it, but just to try and see if the results of that can help with some sort of diagnosis.

We are told that his treating doctors are having a meeting this afternoon so perhaps there will be some clearer picture to emerge from that - here's hoping!

I spent some time reading a few of the stories on the links you gave, and have read some of the experiences people have posted about here, and found myself alternating between tears and smiles. Basically the resilience and optimism of the human spirit is just incredible. I admire anyone who is dealing with something like this disease or related diseases, which throw up so many challenges on every level.

Up until now, Aadhaar (and myself) had been counting our blessings because it seemed he was not too badly affected, however this latest development will probably change that view somewhat.

But like everyone else we will just address issues as they arise as best we can and keep a positive focus. Now that I know this forum exists and offers such great support it feels somewhat reassuring, and I'm sure it will be for him as well, when he can finally access it! He is a very strong person and is dealing with all of this wonderfully well, but it can only help to know that you're not on your own.

So once again many, many thanks for your help and good wishes - and to you too Peanut - your support is really appreciated - and I'll let you all know how things go with Aadhaar.

Love, Meeta

#5 nan

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Posted 22 January 2007 - 02:04 AM

Welcome,
I am so sorry to hear that your husband is so sick. I have scleroderma and the main area internally that has been affected is my digestive tract. It sounds like your husband really needs a GI doctor. I have horrible times swallowing. I am on 3 meds for acid reflux. I am also quite constipated. Currently I am waiting to have a scope done. I had a gastric emptying study done 2 weeks ago and they found that I am slow emptying from my stomach to small intestine. I also have watermelon stomach which can go along with scleroderma.( lesions that bleed spontaneously are in the stomach, on an x-ray they look like the lines on a watermelon) I have lots of nausea, bloating, and some pain. I have never been as sick as your husband. I hope that you can find some answers and that your husband feels better soon.
Nan

#6 LisaBulman

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Posted 22 January 2007 - 02:29 AM

Hi Meeta,
Welcome to the board! I am glad that you have found us here but I am so sorry it is because your husband is so sick right now. I know exactly what he is going through because I have been through it before. The first time I had the pain in my abdomen they took out my appendix. 3 months later I felt the same pain so back to the hospital I went. They gave me some pain meds and sent me on my way. After seeing a gastro, having tests with no conclusions and loosing 20 lbs in a little over a month, she told me I must be anorexic and to be on my way. Well, I had a few choice words for her and found a new dr. He took one look at me and knew the sclero was in my intestines. I have been dealing with it now for almost 8 years. I am never normal....it is always one way or the other and really bad flares in between. My gi suggested he go in and stretch a few spots in my intestines like he did with my esophogus but I don't like the prep you have to do to go in for the scope so I have put it off for a very long time and just seem to deal.
As you can see we are all here to help and support you and your husband. Please let us know what the dr.'s decide and how he is doing.

Hugs,
Lisa
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#7 Heidi

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Posted 22 January 2007 - 03:03 AM

Hi Meeta,

Welcome to the forums. I am glad you found us but so sorry it is because of your husband's current GI problems. It looks like Sherrill gave you some great links to check out. If you find something you think is particularly relevant to your husband's case, you may want to print the article and take it to his GI doctor and suggest that particular treatment or test. There are meds out there that can help move things along if the main problem is dysmotility (as it sounds from what you have described). I do hope the doctors can determine a diagnosis and appropriate treatment plan soon!

Please do keep us posted on what they decide. We are all here for you!

Warm wishes,
Heidi

#8 Sweet

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Posted 22 January 2007 - 07:24 AM

Hi Meeta,

Look like you've already received a lot of good information, so I will just add a very warm welcome. Please keep us posted on your husbands progress. We are here for you.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 meeta

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Posted 23 January 2007 - 12:05 AM

Hello again all

Wow, thanks for such a positive and caring response! You guys are fantastic.

Well I have some good news, hubby is much better today and has been able to eat a couple of tiny meals without too much drama. Certainly nothing like as bad as what has been going on. The change since yesterday is quite marked. So it looks like the worst of this crisis may be over, although he is still obviously not well and it will take some time to get this whole issue settled under some kind of ongoing management program.

Other good - no GREAT - news is that one of his doctors at the hospital has referred him to an immunologist who works with most of if not all the scleroderma patients in our part of the world ( Western Australia) and runs a clinic where he can go as an outpatient, and work on an ongoing basis with someone who actually understands all the wide ranging factors involved.

YES!!!!!!!!!

I can't believe that not one of the doctors or specialists he has seen so far has even mentioned the existence of this clinic......until now. It makes you wonder sometimes! Anyway, I am just so thankful that this doctor at the hospital saw the inadequacy of the treatment he has received to date and helped us to get him in as a patient of this clinic.

We both feel heaps better knowing that he will be able to have a really solid base and support for his ongoing treatment and addressing whatever issues may arise. It is just such a relief.

If Aadhaar keeps improving they expect that he can come home in a couple of days which will be great because I (and our family of animals) are really missing him. I have told him about my discovery of this site and the forums and all the lovely, helpful people to be found here....so I am sure that before too long he will pay a visit himself.

I really can't thank you all enough for your kind words and support, it has really helped in the last couple of days as I was starting to feel pretty stressed about the whole situation and getting a bit down. It is awful watching someone you love go through such pain. I'm confident that some better medical guidance and support will greatly reduce the chance of these complications being so severe in future.

I realise from reading some of your replies and some of the literature that this is likely to be something we will have to deal with to a greater or lesser extent, but at least now we will get the opportunity to manage it in a much better way, so that's great! I am taking inspiration from the caring and positivity to be found here and I'm sure that Aadhaar will too.

Once again millions of thanks and I'll be back soon!

Love, Meeta

#10 Heidi

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Posted 23 January 2007 - 02:18 AM

Hi Meeta,

That all sounds like wonderful news! I am so glad your husband is feeling better and eating again. And, the clinic with the specialist sounds like just what you need! I am so glad you were able to get a referral there and your husband will be followed by a specialist.

Please do keep us posted.

Warm wishes,
Heidi

#11 Sweet

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Posted 23 January 2007 - 06:37 AM

Hi Meeta,

That sounds wonderful!!! Take one day at a time, and know that we are always here for you!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#12 emmie

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Posted 23 January 2007 - 06:22 PM

Welcome Meeta,

I am very happy to hear that your husband had a better day! And best of all that his care will be under the supervision of a specialist at the clinic--that has to be such a relief to you. Please keep us up to date on his progress. And do be sure to take care of yourself as well. This isn't an easy task for you either, especially when trying to get things under control so to speak.

xoxo emmie

#13 nan

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Posted 24 January 2007 - 03:55 AM

Wow! What super news! Take care!
Nan

#14 meeta

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Posted 21 February 2007 - 08:36 PM

Dear friends

After all your kind help and support when I initiated this thread some time ago, I thought it was time to come back and give an update on where we are at with my hubby Aadhaar's ongoing process with this disease( and I suppose just to do a bit of catharting for myself at the same time)

Well, when I signed off last time things were looking up a little - unfortunately that didn't last too long. He was sent home from the hospital but over the course of the next week his condition got worse and we ended up back in accident and emergency, except this time he had all the symptoms of a full blown bowel obstruction and was extremely ill. Over the course of that week we had tried to get urgent appointments to get him seen by the clinic up in Perth and admitted, but the red tape was proving to be unbelievably difficult to cut through - any of you who live outside metro areas will probably relate to how hard it is to try and be seen urgently by city doctors who are already up to their ears in patients....anyway, it was perhaps a "blessing in disguise" (although pretty well disguised I must say!) that Aadhaar became so ill because this time they had to take serious action.

He spent a few very unpleasant days on the nasogastric tube to drain everything out and had a range of tests -which showed that there was no actual obstruction, just that his entire GI tract had basically slowed down to the point where it had almost ceased to function. After several days of us practically begging to get him transferred up to Perth the treating doctors agreed that this was a good idea. I should say that they were great and no complaints at all about their treatment, they had done all the right things but basically gone as far as they could and saw the wisdom of getting him seen by doctors with more experience of these types of illnesses.

So - up to Perth in the ambulance (this was a couple of days ago) and he was admitted under a general physican and had a team of experts descend upon him, which was fantastic because the overall snapshot of his health from ALL angles was exactly what we wanted to happen. He has lost a LOT of weight so a dietician was immediately onto the case, along with haemotologist, gastroenteroligist, immunoligist and probably a couple of other "ologists" I've forgotten about.

This morning he was visited by the haemo who is going to do a bone marrow test because in his opinion the range of symptoms Aadhaar has, including abnormal paraproteins ( I hope that's the right term, I'm still not entirely up to speed with all the lingo) would seem to indicate that he has something called scleromixodema - from what I gather this is another sort of sub-version of scleroderma or systemic sclerosis and extremely rare.

This diagnosis is not confirmed at this stage but according to the specialist, there is a good chance it will be. Apart from knowing that it's obviously serious, (as I have just scared myself half to death reading about it on the net) I'm not sure yet what sort of treatment path they will go down. Possibly it will involve some form of chemo because it seems to be related to or mimic symptoms of certain types of leukaemia and there can be GI involvement as well as other, potentailly life threatening complications.

So that is where we are at. It is certainly scary to contemplate all this, but at least we seem to be moving towards some kind of actual diagnosis and treatment rather than just bumbling along in a state of bewilderment and not knowing what we should be doing or what is going on! Even if the diagnosis is a very challenging one at least it is better to know what you're dealing with than to be in the dark.

Aadhaar is handling all of this as well as anyone could I think. He is a naturally positive character and boy is that standing him in good stead right now. It has been extremely painful watching him go through all this suffering and just feeling more or less helpless standing by, but one thing it has done is brought us a lot closer together. We were close anyway, but in times such as these so many of the barriers fall away because you realise what you've got and what you could lose.

Despite what we know the possibilities might be, and there's no point being in denial about that, we are both determined to approach this in a positive way and keep on putting out for all the help we can find, and for his health to begin to get back on the path to recovery and / or management that enables a decent quality of life and perhaps remission. From all I have read about this particular form of sclero-type disease, which is a fairly unknown quantity, there are some treatments that may assist so we will put our focus there and on anything that seems to offer healing potential.

Aadhaar is a very strong, accepting and beautiful soul so I know that he will deal with whatever happens. I just hope for an outcome where he is still around for me to love :)

I hope you all won't mind me asking, if anyone out there who reads this and who has their own faith of whatever description, would mind keepin us in your thoughts, for Aadhaar and for him to get well. I won't ever be able to thank you in person but it would mean so much to me.

Thanks ( again!) for listening to my story which I will update with hopefully good news soon. I can't tell you what a relief it is to be able to come here and speak about this stuff to people who understand.

Very best wishes to all of you

Love, Meeta

#15 Heidi

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Posted 22 February 2007 - 04:10 AM

Hi Meeta,

Thanks for the update. I am sorry your poor husband is having so much difficulty and was so sick. I am glad to hear that you got into the clinic in Perth and they might have some answers for you....and hopefully, be able to start a treatment that will make a difference. Please do keep us posted on what the doctors decide and how you and your husband are doing. You are both in my thoughts.

Warm wishes,
Heidi

#16 meeta

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Posted 22 February 2007 - 04:16 AM

PS Folks, I forgot to add in my post, that I hope to be able to spend some time here at some point offering encouragement and support to others who are dealing with any of the various manifestations of sclero-type disease, or caring for someone who is. I don't want to seem like someone who just rocks up every now and then to get support for myself without ever giving anything back!

It has certainly been a source of help and comfort to me to be able to visit here and just to know that there are people listening who understand what it's like going through these kinds of situations, and that no one need be alone - it is very important to realise this. It has only truly dawned on me just HOW important it is to feel "not alone" in life since Aadhaar's diagnosis and all which has followed on from that. I suppose if every cloud has a silver lining as they say, then the lining in this one is that I have become a better person by having to drop some of my pride and determination to cope with whatever comes my way under my own steam.
(probably Aadhaar would say the same thing)

This is just too big for that sort of attitude to be sustainable or helpful... and every day I discover how wonderful other human beings can be, and how caring. It is a humbling experience when complete strangers offer you their heartfelt good wishes or go out of their way to advise and assist you or just to "bear witness" to what's going on for you.

So perhaps not just at this moment ( coz I'm a bit off the planet right now to be honest!) but when things have hopefully settled down a bit I can spend some more time here repaying some of the kindness and support that has been shown to me. I would like to do that very much.

Love Meeta

#17 Shelley Ensz

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Posted 22 February 2007 - 04:34 AM

Dear Meeta,

I'm very glad you are finally beginning to get some answers for Adahar's illness. We have a page on our site about Scleromyxedema. I hope you find it helpful. And here is some treatment information from that page:

IVIG and Thalidomide Combination is an Effective Novel Therapy for Scleromyxedema. In the majority (83.2%) of cases, an abnormal paraproteinemia is present. IVIG and thalidomide combination is an effective novel treatment of scleromyxedema with systemic involvement and associated light chain monoclonal gammopathy. Petros Efthimiou. ACR Conference Oct. 2003.

Give some warm hugs to Adahar for us, of course!

Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#18 meeta

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Posted 22 February 2007 - 11:29 AM

Dear Heidi and Shelley

Once again many thanks to you guys for your invaluable help and support.

I had discovered the info about scleromyxedema ( I'll spell it right this time!) on this site - this site is an absolute mine of information and just a fantastic resource, and also looked at a few articles/case studies on the net which are obviously written by doctors for doctors as it is daunting trying to wade through all the terminology etc.

Anyway, it is encouraging that there do appear to be a couple of treatments that have had good results for many patients :)

It will probably take a few more days before the team of doctors working with Aadhaar come to us with a more definitive diagnosis and options for treatment. We are in the public health system so I don't know what is available or what is involved cost wise but I guess we'll cross that bridge when we come to it.

A few nights ago I was watching a doco which was about some of the people who live in impoverished countries with basically zero medical care and I thought, what would it be like for someone with scleroderma / dema/ etc. in that situation? It would be just terrible.

I'm so grateful that we live in a country which DOES have a public health system, imperfect as it may be at times!

Another positive is that his case being so unusual has really got them interested, and all of the different specialists are working closely together and being extremely thorough in pursuing all avenues of exploration to try and understand as much as possible about what is actually going on.

Also, they are being very inclusive of Aadhaar and myself in this process and especially going out of their way to explain to him why tests are being done, what lines they are thinking along and so forth.

I can see that this is really helping him to feel that he has some empowerment in this situation and is exactly what has needed to happen, as up until this point it hasn't been the case and there has been little or no consultation between different doctors who have seen him, and little or no meaningful communication from doctors to him, which has been making him feel "out of the loop" so to speak.

Now he feels like he has got a whole dedicated team of experts working alongside him so that is really GREAT and makes him feel much more supported than has been the case prior to this.

So that is all good! Now we will just have to be patient while they figure out what they think is happening and what we can do about it.

I will let you know how it all goes and yes I will DEFINITELY pass on your big hugs and best wishes to Aadhaar.

Thankyou so much from both of us

Love, Meeta

#19 Shelley Ensz

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Posted 22 February 2007 - 12:16 PM

Hi Meeta,

Uh, make that hugs to Aadhaar, not Adahar. DUH. :blink:

On behalf of our entire volunteer team, thanks for your kind words about our website, Meeta.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#20 Heidi

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Posted 22 February 2007 - 01:55 PM

Hi again Meeta,

Wow! It really does sound like your husband is getting GREAT care! I am so glad that the doctors are consulting with one another and with both of you! How important it is for the patient to feel as if they are part of the team. Kudos to your doctors for realizing that! Just know that we are all pulling for you both!

Warm wishes,
Heidi