# Update on DH - Jerry



## Lacie's Mom (Oct 11, 2006)

I don’t really know where to begin with this update, but most of you have been with me through all of the challenges this past year with DH’s health. It’s actually shocking to his doctors that he’s still alive, but I’ve always said that only God knows when he’s ready for you.​​Jerry is still on the Heart Transplant list, but is continuing to hang in there. Both of us are frustrated beyond belief with the various doctors. So here’s the latest.​​On March 11th, Jerry had an appointment with the head of the Transplant Hospital. At the time, Dr. Copeland told Jerry that he could tell that he was going downhill rapidly and that he wanted Jerry to make an appointment with his cardiologist, Dr. Peek, for the following week. Dr. Copeland also told Jerry that he should plan to be in Tucson in the UMC Hospital (Transplant Hospital) the week of March 22nd. Dr. Copeland planned on doing an IV drip medication on Jerry and then implanting a Left Ventricle Assist Device (LVAD). We used to think of these as the “artificial hearts”.​​To me that’s a big deal and I needed a lot more information. I did research on the internet and came up with a number of questions.​​On March 19th, I flew to Phoenix to go with Jerry to his appoint with Dr. Peek. Dr. Peek told us that he couldn’t believe that Dr. Copeland wanted to do the IV drip considering the side effects of the drug which, in his opinion, are contra indicated for Jerry’s condition. Dr. Peek ran a printout of Jerry’s pacemaker which records a beat-by-beat history of Jerry’s heart, and the printout showed that Jerry hadn’t had any “episodes”, so Dr. Peek was very cautious about implanting an LVAD. He emailed Dr. Copeland and sent him copies of various tests including the pacemaker printout.​​On March 22nd, we were expecting UMC to call with a specific date and time to be at the hospital and also to address the various questions that Dr. Peek raised. INSTEAD – UMC called and told us that Dr. Copeland had gone to France on vacation and would not be back until April 5th. An appointment was scheduled for Jerry on April 8th, and he was again told to bring his suitcase and be prepared to check into the hospital.​​I emailed Jerry’s Transplant Coordinator (Sue) with a number of very general questions about the procedure and also asking for specific dates/plans as I need to coordinate taking FMLA to help with his recovery. She was very rude in her response and told me that she didn’t have any specific info and that she wasn’t going to discuss Jerry’s medical condition with me.​​In the meantime, Jerry’s GP, Dr. Ned, has also gotten involved and is in agreement with Dr. Peek.​​So we’ve been patiently waiting for April 8th to meet with Dr. Copeland to see what’s going to happen.​​Yesterday Jerry received a call from UMC to go over his medications prior to his visit for today. Well, a couple of things happened during the call. First, they were very upset over one of the meds that Dr. Ned had recently prescribed. Second, Jerry told them that he hadn’t received any info regarding the data and questions from Dr. Peek. This was the 3rd time he had discussed this with UMC. They said that they didn’t recall receiving anything from Dr. Peek (however we were still in his office when he sent the email). Third, Jerry told them that he couldn’t just have the surgery done on the “spur of the moment” because he didn’t have any support in Tucson without me or his daughter making arrangements. At that point, the clerk told him that they would have to take him off of the Transplant List. He blew up and demanded to talk to her Supervisor. After talking to the Supervisor, his appointment for today was cancelled and rescheduled for April 21st.​​Jerry’s BFF knows someone that has a LVAD which he has successfully had for 3 years. His surgery was done at Mayo in Scottsdale which would be much easier as Jerry has caretakers in Phoenix. So during all of the waiting for the last few weeks, Jerry called Mayo and got more info from one of their Coordinators than we have this entire past year from UMC. ​​So he is meeting with Mayo next week to discuss the possibility of their taking over his case. Dr. Peek says that he has never had luck working with Mayo, but at this point, we haven’t felt good about working with UMC.​​Jerry is in tears and upset beyond belief and I feel helpless because I can’t seem to get any answers either. Also, all of these challenges which continue to upset DH, are extremely stressful and bad for his heart. Sometimes I think doctors just try to make things worse and don’t think about the patient at all.​


----------



## Ladysmom (Oct 19, 2004)

Lynn, I am so sorry you and Jerry are going through this. I can't imagine the stress and upset you must both be feeling. I will continue to keep both of you in my prayers.


----------



## bellaratamaltese (May 24, 2006)

i am so sorry this is happening to you both! *hugs you* Will keep you and Jerry in my thoughts.


----------



## njdrake (Apr 23, 2007)

Lynn, I'm so sorry. I know you must be so frustrated. Its scary when its such an urgent health matter and you feel like you aren't getting answers. I hope this starts turning around for you both soon and Mayo is your answer. 
Please keep us posted.
Hugs and prayers.
:grouphug: rayer:


----------



## camfan (Oct 30, 2006)

Lynn--what a nightmare. You and Jerry are in my thoughts :grouphug:


----------



## uniquelovdolce (Mar 10, 2010)

oo wow , that is definitely alot of added stress on top of it all ! hugs ! and i will definitely keep u both in my prayers.


----------



## CeeCee's Mom (Sep 14, 2006)

Lynn, sometimes things happen for the best. To give you an example: My sister, who had the really bad heart attack with only 20% of her heart muscle left was scheduled for a defib and pace maker. She had the operation scheduled and was waiting to go in for surgery. A few days beforehand, the surgeon called her and said he was canceling the surgery saying her index fraction? was too low and she could not withstand the surgery. She was devastated! She finally got in with the head surgeon at UVA and he had exta schooling for this procedure. She is so much better and her idex fraction has gone up to about 35, not the best but she can breathe better now. She was so frustrated but afterwards said someone up above was looking out after me and I just couldn't see it at the time. It may possibly be that DH is getting to where he needs to be. All the frustrations that you have put up with may lead you to getting better help. I think it may be a plus in the long run. How can they treat their patients like cattle and you do as I say or else. What a terrible thing to do!!! I think you may be on a better track now........I am so sorry that you and Jerry have had to go through this. I will keep you both in my prayers and please keep us updated when you can.........:heart::heart::heart:


----------



## Snowbody (Jan 3, 2009)

Lynn -- OMG I can't believe what you and Jerry have been going through. If it was in a movie, you wouldn't believe it. I tend to agree with Dianne. Maybe there is a reason for this playing out as it is. I don't think I'd feel comfortable doing anything with UMC given their attitude and responses. Just what you wouldn't want from a transplant hospital!!! 
Is Mayo linked to the Mayo Clinic in the Midwest? If so they're so top notch!! I'm sending thoughts and prayers to you both and hoping for good news next week from you about this visit. Sending love to Jerry and tell him to hang in there. :grouphug: Please update us next week. Fingers and paws crossed.


----------



## fach (Jun 27, 2005)

I am so sorry you two are going through all this. I don't understand the lack of communication from UMC. The last three years with my DH was full of medical needs and never did I feel as poorly treated as you have been. [ We didn't use UMC] Maybe it's a sign that UMC is not the place for your DH. Keep your strength up and do what feels right in your gut. I feel so sad for your family.. Hang in there.


----------



## KAG (Jun 1, 2006)

I know it's "what a long, strange trip it's been" for you guys. I pray that you and Jerry keep your spirits up, Lynn. My heart and prayers are with you.
xoxoxoxoxo


----------



## Hunter's Mom (Dec 8, 2008)

Lynn, this is simply horrible to hear. I do not want Jerry stressed out like this because I can only imagine that the situation is stressing you out and then the fear of what the stress is doing to him is doubling your stress (which is NOT good for you!!!). I hope that the meeting with MAYO goes well for both you and Jerry! hugs and more hugs - E&H :wub::wub:


----------



## donnad (Aug 22, 2006)

Lynn, I am so sorry for what you and Jerry are going through. I will keep the two of you in my thoughts and prayers.


----------



## Tina (Aug 6, 2006)

:grouphug: :grouphug:


----------



## The A Team (Dec 1, 2005)

Lynn, it's happening all over....no one really cares anymore!! I can't believe doctors will just leave...with so many things undone!!!!! :smilie_tischkante:.

I'm so sorry Jerry has to be going through all this at this point in time! Totally unbelievable......


----------



## MORGANM (Jul 6, 2009)

Sending prayers your way, both of you are in my thoughts!


----------



## revakb2 (Sep 8, 2006)

Lynn, I hope things get better soon. My thoughts and prayers are with you and Jerry.


----------



## chichi (Apr 12, 2007)

Sorry you are going thru this, I hope you get some answers at Mayos. I think you are making the right decision switching to them. Sending prayers.


----------



## susie and sadie (Jun 22, 2005)

Oh Lynn, I am so sorry for all you two are going through. I just can't imagine! And the stress is the last thing either of you need. 

Please know my prayers continue to be with you both. rayer::grouphug:rayer:


----------



## Deborah (Jan 8, 2006)

You are in my thoughts and prayers.rayer:


----------



## cindy6755 (Mar 20, 2005)

I am so sorry you have to go thru all of this, maybe Mayo will be the answer to your prayers


----------



## maggieh (Dec 16, 2007)

Lynn: A friend of mine had a wonderful experience at Mayo Phoenix - not cardiac - but still absolutely wonderful. They were able to come up with a diagnosis that had eluded "experts" in Denver.

I'm so sorry you and Jerry are having to go through this. I pray that this will be a turning point and everything will start going your way for a change. Hugs and prayers for you both!

Maggie


----------



## Delilahs Mommy (Nov 22, 2009)

Lynn, I am so sorry you and Jerry are having to go through this. I will keep both of you in my prayers. :grouphug:


----------



## nostresstoday (Nov 10, 2009)

You are in my thoughts and prayers. I can't imagine going through all of that. Stay strong.

Darlene


----------



## pinkheadbaby (Jul 27, 2008)

Oh Lynn, how horridly they treated you & Jerry! I'm so sorry. I agree that the Mayo experience will be better. I have faith in that. I am sending lots of prayers your way and give Jerry lots of really big hugs!


----------



## MalteseJane (Nov 21, 2004)

I am speechless ! What a shame. :grouphug::grouphug:


----------



## joyomom (Jan 13, 2008)

Keeping Jerry and you in my prayers and thoughts. {{{{{hugs}}}}}


----------



## Katkoota (Feb 18, 2006)

keeping you and Jerry in my thoughts and prayers (hugs)

Kat


----------



## Maglily (Feb 3, 2009)

That's just awful treatment, I agree it is shameful and that the Mayo experience will be better. You're both in my prayers always.


----------



## bellasmummy (Apr 8, 2009)

i am so sorry to hear this, what an awful time you are having, will keep you in my prayers xxx


----------



## Lacie's Mom (Oct 11, 2006)

This just keeps getting better and betters -- NOT.

About 20 minutes before Jerry's original appointment yesterday (yes, the one they cancelled on Wednesday), they called and told him that Dr. Copeland still wanted to see him and for him to get to the original approintment.

To make a very long story short, the only thing that seems to have changed is that now Dr. Copeland will see Jerry every month instead of every 2 months. And he also told Jerry that he could continue taking the medication that the coordinator had a "fit" about.

He said that he had received Dr. Peek's info but, that as Jerry continues to go downhill, they will put him in the hospital in Tucson and put him on an IV drip which will move him up on the Transplant list. Then if that doesn't help, he will continue to remain hospitalized which will make him top priority on the transplant list. But there are also about 20-30 other patients in UMC that are in the same boat and status, so a transplant is certainly not guaranteed.

Dr. Copeland did not indicate that an LVAD would be implanted. 

So until next month, Jerry has decided to stay with Dr. Copeland and not start all over with Mayo. I do know that Mayo's Transplant Program (which is headed by one of Dr. Copeland's protegees) has not been very successful and that their last 5 transplants (over 2 years) have failed. I actually sat next to one of their doctors on a flight to Phoenix and he and I have a very interesting discussion about Mayo's Transplant Program.

The other problem is that, because his left ventricle is so weak and cannot pump enough blood to his organs, his other organs are in jeopardy of failing due to lack of oxygen carried by the blood. If any of his other organs (kidneys in particular) fail, he will no longer be eligible for a heart transplant, so this is a very tricky balancing act regarding timing.

I'm just shaking my head and am in disbelief about how all of this is being handled. And Jerry's a basket case between screaming and crying. He just can't seem to get his emotions under control. It's best for me to leave him along when he gets this upset.

And for those that asked -- yes the Mayo Clinics in Scottsdale (there are actually 2 hospitals) are part of the *THE* Mayo Clinic in Rochester, MN. The hospitals in Scottsdale have been their around 25 years.


----------



## CeeCee's Mom (Sep 14, 2006)

Lynn, my heart goes out to you. It is sooo hard to make a decision, because you can always second guess yourself. I know, with my husband, that happened. I was forced into a heart decision without any knowledge about what to do at night in the emergency room. Looking back, we made the right decision at the time but, oh goodness, it can really tear you up inside. Good luck and I hope he gets his heart.............:heart:


----------



## Deborah (Jan 8, 2006)

I live an hour and a half away from Tucson and know of more than one person who have had him (Dr. Copeland) as a Dr. I have always heard excellent comments on his care. Perhaps you are not being treated as well as you should be because Jerry is not yet an official patient.

Another thing that I have noticed is that the best surgeons have the worst bedside manner. I'd take skill in the OR over bedside manner. I do know that most of these "Hot Shot" have many Drs. training under them and those are the people that do a lot of pre surgery and post surgery work.

I am still wishing the best for you and Jerry.rayer:


----------



## Dixie's Mama (Mar 19, 2008)

Lynn I don't know how you function on a daily basis. What an unbelievable story. Poor Jerry, no wonder he screams and crys, he must be way past frustrated. You too! I'm still keeping you both in my prayers Lynn. How much can a couple take. Your treatment by the hospital, drs. and Jerry's transplant co-ordinator is just shameful.


----------



## mpappie (Jun 28, 2005)

Poor Jerry and you as well, there is nothing worst than a doctor you don't think is on top of your problem.
You are both in my thoughts and prayers.


----------



## Snowbody (Jan 3, 2009)

Lynn - I'm speechless. The medical community is like a secret brotherhood keeping all the info and power to themselves sometimes. You feel "damned if you do, damned if you don't," mixed in with "what are we supposed to do?" All I can say is hang in there, arm yourself with as much education as you can, bring your questions written out and just pray a lot. It's just so frustrating. You and Jerry are so strong to go through all this and I wish there was something we could do, but know that we're thinking of you both and sending more prayers. Lord knows, you need them just to get through the red tape.:grouphug:


----------



## joe (Jan 5, 2003)

Lynn, still praying for your husband and your family :grouphug:


----------



## Bonnie's Mommie (Mar 2, 2006)

Wow, Lynn, what a roller coaster you and Jerry have been on. I really hope you two get some answers and the proper treatment. (From Gone With The Wind) You've been strong for so long, you just have to be strong a little longer. Hugs to you both.


----------



## littlebit279 (Jul 29, 2005)

rayer::grouphug::grouphug:


----------



## Maidto2Maltese (Oct 19, 2004)

Oh Lynne, I can't even begin to imagine the stress you and Jerry are going thru!! God bless you.. you're 'holding-up' better than I would for sure, and I'm a 'decently' strong person. 

Know that loads of prayers are going out for Jerry...and you!.. that you'll be guided in the right direction and lead to Dr./procedures that are in Jerry's best interesst.

As was said..you've been strong this long.... just a bit longer!


----------



## Snow White (Dec 6, 2009)

I am so sorry you are still dealing with all this stress. It is so sad. I will be praying and keeping you in our thoughts. :grouphug:


----------



## I found nemo (Feb 23, 2006)

Prayers and positive thoughts :grouphug::grouphug:


----------

