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PART 1...The last several weeks have been so difficult......


lisaRN

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The last several weeks have been so difficult.... I didn’t know if I had the emotional strength to write anything today but when I read all of your incredible messages of support, I felt the need to update you and THANK YOU (everyone) for all of the posts and PM's. I am overwhelmed by all of your support.

On Wednesday, October 23, we were scheduled for an appt with the thoracic surgeon ( Dr.F )to discuss a possible bronchoscopy but Ahmed got really sick on Tuesday night and I had to take him to the ER... I took him to New Haven to the hospital where the surgeon is affiliated...I thought this might expedite the surgery to clear the airway.

My son, Tariq, and I had been up for the previous 2 nights with Ahmed and the night in the ER meant 3 in a row with no sleep....

They repeated CT scan, blood work and some x-rays.....

The surgeon came in at around 3pm and we explained that Ahmed had been coughing up increased amounts of blood for the past few days and had been unable to eat…. Based on his recent pneumonia the med onc ( Dr. C ) and the infectious disease doc (Dr. Y) recommended that we consult Dr. F for the bronch with a possible laser ablation to clear the airway and maybe we could be done with this post-obstructive pneumonia once and for all.

Dr. F said absolutely NO WAY would he do a bronch. He said he was afraid Ahmed would not wake up from the general anesthesia and he was not willing to risk it. He called me into the hallway and told me that I should consider hospice because we didn’t have much time left, possible a week or two. I asked him what he was basing his decision on and he said that according the CT scan performed that day that disease had progressed significantly and that there was nothing further that could be done.

Of course, you know me, I flipped out and kept questioning how could this be since we just had a fabulous CT scan on September 23. I had all the CT scans since August including the reports. I told him I would appreciate it if he took a look at our scans in order to see the pattern of the disease….. I could not understand how he could determine “significant progression of disease” when he was comparing that days CT scan with one he had ordered for Ahmed back in the beginning of June…. If you compare those, then of course you will see progression…. But I believe he missed a big part of the puzzle.

He adamantly refused…. in spite of the fact that Ahmed was crying and BEGGING him…..Ahmed promised him he wouldn’t hold him responsible and pleaded a case like I have never seen before. It was heart wrenching to hear him… “…. but I have my wife and my son, please I am begging you, please….”.

In spite of my multiple attempts to show him the scan we brought he kept brushing me off, telling me it wouldn’t make a difference….. he offered to admit Ahmed for IV hydration but Ahmed and I talked privately and asked to be discharged….after all we had been getting hydration in the home…. And besides we needed another opinion…. We have learned never to accept just one….

So we left New Haven, headed home to pick up some clothes and then Tariq, Ahmed and I hit the road bound for Philadelphia….Fox Chase Cancer Center…..

At around 11:30pm we arrived only to find that Fox Chase did not have an ER and we had to go to the hospital next door… We were lucky that we had been there once before for a 2nd opinion or else they wouldn’t have even seen us….. the whole process suddenly seemed unbelievably difficult and I realized that perhaps we hadn’t thought it through….

Ahmed was admitted to Fox Chase hospital and was given a bed in a double room with a roommate. I was concerned immediately because he always makes me promise not to leave him…and I have not left his side since diagnosis in April ’04. The first night the nurses were very accommodating and made Tariq and I very comfortable at Ahmed’s bedside.

The next day, it was hurry up and wait…. Probably a result of my poor planning…. Because I didn’t call ahead to let the docs know we were coming, they just had no clue what to do… Unfortunately when they finally got it together they decided that they also did not need to look at the scans I brought and chose to repeat one of their own with “ thinner slices and different angles”.

The problem was that by the time they decided what to do it was after 6 pm and they didn’t perform any testing after 5pm….. when I learned this I started questioning the type of services available… NO ER, NO 24hrs CT scans or Xrays, NO procedures could be performed in eves or weekends….. HMMMM…. Made me think….. what have we gotten ourselves into ….. I thought this place was state of the art…. Obviously I was wrong…. Now I was thinking that even if they decided to go forward with the bronch…. Was it even a good idea to have it done here?

It didn’t even matter, because the next morning Dr U the pulmonologist came in and said NO WAY because not only was it too risky but he didn’t even think it was necessary…. He said the airway was not completely obstructed…

He discharged us on Friday, October 29….. the problem was we still had no resolution to why the pneumonia was not clearing up and now we had 2 different opinions…..

We decided that we needed a 3rd opinion….. that’s where Dana Farber in Boston enters the picture…. The only thing was ….. Ahmed was too weak to make the 8 hour trip from Philly to Boston and besides we learned our lesson about not calling ahead… so we went home….. We figured we would wait out the weekend and call Dr H at Farber on Monday.

I am going to stop here for now or else I won’t get this posted tonight….. There is much more and I will try to get part 2 online tonight as well…. Please understand why I have not had much time to post….. or even browse the net….[/color]

Again thank you everyone….. you all have no idea how great it feels knowing how many people are supporting you, especially those people who know what you are going through….because they are living it too…..

:cry:Lisa

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Lisa: I am glad you have your family with you. I hope you get to see the third doc. I know you have been having a real hard time.. and all that has happened to you is real.. I hope you get some peace ..but whata story!

Maybe you could get a book of poems by Rumi and read it to your husband. Hopefully your inlaws would have the good grace to be quiet.

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Oh Lisa,

What a nightmare. I can't even imagine people being so cruel...oh wait yes I can, my mother in law. But back to yours...I am so glad you called in the reinforcements. Now hopefully you can keep the in-laws from harrassing Ahmed and get him somewhere for treatment. I am so sorry for this, you don't need this. The unbelieveable cruelty.

Please take your family's advice and call the police if they start threatening again. Ahmed can't handle the stress. He needs every ounce of strength he has for himself.

Please keep us updated. We are all thinking of you and wishing you well.

Rochelle

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Lisa,

You gotta do what you gotta do for Ahmed, Tariq and you. I am sure Ahmed wants to be surrounded by his 'loved' ones at this time but his family does not sound like 'loved' ones.

Keep your family there for support and protection. I too hope that part II has better news for both Ahmed's treatments and your current situation.

Hang tough.

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Oh my goodness, Lisa. I read this right after you posted it, but the site wasn't working right. I hope you are still able to read all of our replies.

I am just overwhelmed with what is happening at your house. What a horrendous nightmare. It's a good thing all of us weren't there. We would have collectively kicked their you-know-whats.

I am so sorry that Ahmed is having such a hard time. You must be so stressed yourself. Please keep us posted, and by the way, if you're comfortable to do so, PM me your phone number so I can call you if you can't get to the site.

You have all my love and prayers,

Peggy

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Your poor thing, I cannot believe that people such as that really do exist. I am so very sorry you are having to endure this while trying to care for Ahmed.

You and your family are in my prayers, and maybe ill even say one for ahmed's in hopes that they come to their senses.

Please keep us posted on Ahmed and of course the in laws.

Kim

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It sounds dreadful...you need help..you need your family there or bi-partisan people there (like the police!) to help you and keep you safe and to keep your husband from being emotionally abused and bullied.

I hate this for you....I wish I was close to help...I'll keep praying for you all.

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Oh Lisa, I am so sorry to hear about this nightmare you and Ahmed have been living. Many times I have looked for a post from you and when I read this I just couldn't even begin to find a way to know how you must be feeling. I can't imagine anyone having to go through anything like this. How can family be so selfish and greedy? I wasn't there , but the picture you painted was so disturbing and unbelievable. Will be waiting to read part two of your story. Know that my heart goes out to you.

God Bless,

sue

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Lisa,

I am glad you have your own loving family supporting you now. Hopefully this will discourage your in-laws from being so cruel. I can't believe your in-laws behavior! You need to let even your mother in law know that if she is going to be upsetting Ahmed that she will no longer be welcome.

Sending prayers your way,

Martha

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Dear Lisa & Tariq,

First let me say that it is so good to see you post. Many of us have been worried and asking about you. I'm so sorry for the terrible situation with your in-laws on top of Ahmed's poor health. I think it is wonderful that your family came to your rescue...literally! That is what family is all about and it sounds like you have a great one. Let them help you fight this battle and maybe, just maybe, if Ahmed's family sees that you are not alone and a force to be reckoned with...maybe they will back down. People can be so cruel and insensitive.

More important than anything, please know that you are not only surrounded by your loving family with you in Connecticut, but right here there are many many people surrounding you with prayers and love. Please hold on, take care of your family and know that support is here for you.

Love and prayers,

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I am so concerned for you and your family. It does sound like you are doing the best that can be done in the situation. One thought that occurred to me - Thank goodness you are here dealing with this and not in a country where women have less say about their lives and their families. You do have rights - you have the ultimate say - after Ahmed. I suppose it is a cultural difference but thank goodness, you are here. I am so proud of you standing up for Ahmed and for yourself. I think you have done exactly right, gotten some reinforcements. Just remember, you don't have to put up with any of it - you allow them in your home for the love and comfort of your husbande. They can give that or they can stay out. Don't let them intimidate you. And like others have said - the Law is your friend. If any of them even look like they might try force, call for help and sort it all out later. I am sure you are okay but if you ever get a spare minute, or if you have a friend who is an attorney who would do a home visit, you might want some advice, just to prevent any funny stuff. Thinking of you. Margaret xoxoxoxox

PS Don't be afraid to offend them - you can sort that out later, too, or not. All that matters is Ahmed and you and your son. The rest are extras. Keep 'em if they are a plus, loose them if they are a minus.

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Lisa.

While I understand that SOME of what you are going through is because of cultural differences, I am sure that doesnt make it any easier--for you or for Ahmed, whose loyalties are being tried beyond what a well person could handle, let alone someone battling this disease.

His heart is with you and his dear son--that is clear. I hope there has been resolution of the "other stuff"- It is heartbreaking that this has happened. I know I can't understand anyone behaving like his family has and I know how much this must hurt Ahmed, you and your son. It must feel like a betrayal.

While others have urged you to call the police, I would be hesitant to do that, but I would perhaps call his case manager if he has one or a social worker. I think it might hurt Ahmed if you called the police.

The police rarely can do more than harm family relations under such circumstances. Though, I suppose if they attemp to kidnap him, I WOULD call ANYONE, including the police.

I have been so worried about you all. No matter how his mother and brother are acting, I am sure their hearts are breaking too. And your poor son, that is his grandmother and uncle... And of course his love for you and his father is stronger than any love he has. I wish they could stop for his sake.

I hope you have been able to get Ahmed medical attention in spite of what is happening.

I know it's not much that we are here, online, but I hope you can find support with us as you face the "madness"

My love and extra fortiude to you all.

elaine

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